Hello

[Guest guest]

Cobranine,

I just want to endorse everthing that Sue has said and especially the fact that

you are not alone.

Yes its very hard and life really sucks sometimes but take it from one who has

been there, no matter what life throws at you we have so many things to be

thankful for and to look forward to. Although it may not seem like it you do

have a future and life is worth living. Groups like this can help so much, I am

very new to this group but already I have got so much comfort from the support

that I have received. I guess that the big difference is that we have all heard

it from other people who say that they understand how we feel and know what we

are going through. We know that they mean well but there is no way that they

possibly can understand. The people in this group do understand because they

have been through it too. You have friends here who genuinely care and are here

to help in any way that they can and I include myself in that. I know exactly

how you feel about your parents, both of mine passed away at Christmas-time (my

Dad's funeral was held on

Christmas Eve). All I can say is that we are here for you.

Hello

> Stimulator@gro ups.com

> Date: Monday, October 13, 2008, 11:16 AM

>

>

>

>

>

>

> Hi everyone,

>

> My name is and I am having a few problems.

>

> I have an underlying problem with the circulation in my right leg. I

have had 12 operations on my leg to date and as a result of all the

surgery I have been left with chronic pain in my leg below the knee due

to extensive nerve damage. I spent the best part of 3 months in hospital

at the end of last year being pumped full of a cocktail of various drugs

including morphine which did little for the pain.

>

> I had a stimulator fitted just before Christmas and it was the best

present ever, no more pain and within 3 weeks I was off all medication

and back at work. I felt that I had got my life back. Unfortunately the

lead attached to my spine became detached and migrated downwards. I had

further surgery to correct the situation in February when I had a

different type of lead fitted which involved the removal of a part of

the bone. This didn't work as a subsequent x-ray showed that the lead

had become detached from the implant..

>

> Until then I had been covered by private health insurance but my

insurers decided to withdraw cover so i had to wait until April for

further surgery. I underwent 3 operations in 2 days but they couldn't

get the stimulator to work properly. I saw another neurosurgeon in May

who promised he could fix things but I am still waiting for the

operation with no indication of when it might be.

>

> In the meantime I am in constant pain not only from my leg but also

from the implant itself. It feels like it is trying to work its way

through my skin and the area appears to be bruised and is incredibly

sore. I can't sit down for very long or walk very far. The only

medication that offers a degree of pain relief is Ketamine which I take

in an oral solution but I don't like taking it as I had a rather nasty

experience with it a few weeks ago. I took an accidental overdose due to

a mix up at the pharmacy when the concentration of the solution was

increased from 50mg/5ml to 250mg/5ml and they didn't tell me. The

hallucinations were horrendous and the doctor told me that I was very

lucky. I live on my own and the experience has left me feeling very

alone and vunerable.

>

> I really don't know what to do any more I have no quality of life and

am virtually housebound. The whole experience has had a profound effect

not only on me but also on those people that I was closest to. I am on

my own and have become very withdrawn and I could do with someone to

talk to who understands and may know how I'm feeling.

>

> Thank you for listening.

>

> Best regards

>

>

>

>

[Guest guest]

Hi Kathy,

 

Thank you so much for your kind message.

 

Just knowing that there are people out there with whom I can share my

experiences has been huge already and I hope that in some small way that I may

be able to help others too.

 

I must admit to being a bit of a softy and your message brought me to tears

especially when you mentioned about your experience with Ketamine. Yes, ever

since the overdose I have been having the most terrible nightmares. They are so

vivid and real that it is truly frightening and I can only manage to sleep for a

couple of hours a day even with taking sleeping tablets. I have been put on a

programme of EMDR therapy which induces rapid eye movement similar to that of

the REM stage of sleep. At the same time you are made to focus on the trauma

with the idea that after 5 or 6 sessions you will still remember what happened

but it will no longer have the same distressing effect and the nightmares will

stop. I understand that this programme is used to successfully treat people

suffering with post traumatic stress. The only draw back so far is that in the

early stages things get worse because you are made to focus on the bad things

and that induces more

nightmares even if you happen to nod off during the day! Ah, well, as they say,

no pain no gain!!

 

Apparently, according to my pain doctor,  my physiology is such that I have a

very high tolerence to most analgesics and opiates so I require very high doses.

For some reason the Ketamine helps on a relatively small dose of 250mg every 4

hours. I don't particularly like taking it after what happened but as its the

only thing that really makes a difference without turning me into a complete

zombie, I'll stick with it. Doc reckons that that is what kept me going. When I

took the overdose, instead of the usual, I took over 1000mg in one go. I was

totally out of it for over 6 hours and it was another 4 before I was

sufficiently with it to call for help. Pharmacy have assured me that it won't

happen again.

 

Thanks for the tip re the pain pump I'll speak to my pain dr about it but

somehow I think it will be a no-go. Just to briefly explain, I am not actually

based in the USA but live in the UK. I live on an island called Guernsey which

is one of a group of small islands known as the Channel Islands. Although we are

part of the UK geographically we are closer to France. We have a population of

about 60,000 and are completely self governing with our own health system. The

health system is basically 2 tiered, private and state funded. With private

health insurance you get seen very quickly, without it you have to wait your

turn. Things are further complicated over here in that whilst our medical

services are superb for such a small place there are limitations. One of these

is that we do not have a neurosurgical department. This means that I have to be

referred to neurosurgeons on the UK mainland. It also means that I have to

travel long distances to get the

necessary surgery. At the moment I've got caught up in wranglings between the

hospital in the UK and the health services over here as to where the funding for

the op is coming from. It seems grossly unfair that it all comes down to money

when an individuals health is a stake. It doesn't help much either when my pain

dr tells me that I am the worst patient he has ever had in terms of being seen

by specialists by a factor of at least 10!! So its just a case of daily phone

calls to the UK hospital to find out how things are coming on and waiting. So

going back to the pain-pump its a great idea in the interim but I would still

have to be referred to a neurosurgeon in the UK and then have to wait months for

the surgery to have it fitted!

 

Anyway I've rambled on for far too long. Thank you again for your support, help

and understanding.

 

 

Re: Re: Hello

Hi !

My name is Kathy G. and I co-own the group with Mike, our founder.

I am so glad that you wrote in to get the support and help that this group

of folks can give to you! So many of us really know the struggles that you

are living with...and even though we can't take the pain and struggles away,

obviusly, we can give you our experiences, some suggestions and receive

suggestions back from you on other areas. This is why this is so great!

I am so very sorry to hear of your nightmare, . With regards to the

horrendous experience with the Ketamine...I can really understand. I had three

injections of it while in the hospital for pain control. The spasms and pain

I was having were so severe that is all that they had left to try...but they

did not mix the medication that allievates the hallucinations. ..and oh dear

God...they were awful...they lasted for several hours each time.

Are you having nightmares now? If you are, it most probably is from the

Ketamine. I was told that the nightmares that I was having was from the the

Ketamine, and they lasted for about 6 months....but the intensity of them did

decrease with each month. I hope you are not having them, but if you

are...maybe knowing why might help you.

As you said that this is really the only med that is helping you...as crazy

as this is going to sound coming from me with my experience.. .I wouldn't push

it aside altogether.. .maybe you can order it from that pharmacy or a

different one already in the premeasured dose that you need..instead of any

human

error happening again with mixing it.

Another really good idea is a pain pump. I had one for quite some time and

it really, really made a world of difference. This way, all the meds are

pre-measured and are in the pump....not many oral meds are needed for pain

relief..if any...and the pump is totally controlled by the dr. The pump is

designed

to reduce the pain by delivering meds to the intrathecal space surrounding

the spinal cord. It is great also because smaller doses of meds are needed to

get relief..

You might really want to consider this route with your pain doc.

What has your Pain management dr or neuro surgeon suggested doing about the

stim itself? If you are having to wait so long to be scheduled with this new

neuro surgeon...maybe it is time to find another one. If you want, you can

email me directly where you live...what city and state...and I will look into

some neurosurgoens for you....maybe one that you haven't tried who will take

your case alot more seriously than this dr surely is. No one should have to

wait this long in agony. This is just not right to you, , and I am so

sorry that it is happening to you.

My email address is _KGavi@..._ (mailto:KGavi@...) and my cell

number is (215) 783-9066. Please call or write me any time...this is why Mike

and I have this group...to help out when we can. I have received so much love

and friendship from these great folks ...and I am sure you will feel the suppo

rt too!

I can really understand that you have become withdrawn... pain will do that

just in itself...but when the pain is so severe...and it seems that it can't

be helped...that old depression rears it's ugly head...and I think we all know

about that guy...but hopefully either the neuro surgeon you have now will

finally scedule you....keep calling and be a hemmroid..(nicer way of saying

pain in the you know where) until you get satisfaction, or seek another

neurosurgeons help. One way, hopefully your stim will be fixed. Please really

think

about the pain pump.

Here is the site for the company that I had my pump from...and there are

others out there too. Medtronic.com Here you can read all about the pumps. I

am not sure what your illness is, . I have severe RSD now for 26 years.

They now call it complex regional pain syndrome.... but it will always be RSD

to me. I have had it since age 14.

I hope that some of this infor helps you, . Please know that Mike and I

are always here...as are our moderators.. .I know that you have spoken to

some of them...one being Kathy Sweet and Sue C. These ladies are awesome people

and really are great with their supportive and loving ways, as are all our

moderators. All the group members are really great folks who are in the same

boat as the rest of us...and help each other through support, laughter and

knowledge... which is power..power to help ourselves!

Gentle hugs to you and all,

Kathy G.

Group Co-owner

************ **New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local. mapquest. com/?ncid= emlcntnew0000000 2)

[Guest guest]

I want to thank everyone in this group for the support. We will all

make it, as long as we keep the Faith. And this group has helped me so

much. God bless everyone

> >

> > From: Woolrich john.woolrich@ ...

> > Subject: Hello

> > Stimulator@gro ups.com

> > Date: Monday, October 13, 2008, 11:16 AM

> >

> >

> >

> >

> >

> >

> > Hi everyone,

> >

> > My name is and I am having a few problems.

> >

> > I have an underlying problem with the circulation in my right leg. I

> have had 12 operations on my leg to date and as a result of all the

> surgery I have been left with chronic pain in my leg below the knee

due

> to extensive nerve damage. I spent the best part of 3 months in

hospital

> at the end of last year being pumped full of a cocktail of various

drugs

> including morphine which did little for the pain.

> >

> > I had a stimulator fitted just before Christmas and it was the best

> present ever, no more pain and within 3 weeks I was off all medication

> and back at work. I felt that I had got my life back. Unfortunately

the

> lead attached to my spine became detached and migrated downwards. I

had

> further surgery to correct the situation in February when I had a

> different type of lead fitted which involved the removal of a part of

> the bone. This didn't work as a subsequent x-ray showed that the lead

> had become detached from the implant..

> >

> > Until then I had been covered by private health insurance but my

> insurers decided to withdraw cover so i had to wait until April for

> further surgery. I underwent 3 operations in 2 days but they couldn't

> get the stimulator to work properly. I saw another neurosurgeon in May

> who promised he could fix things but I am still waiting for the

> operation with no indication of when it might be.

> >

> > In the meantime I am in constant pain not only from my leg but also

> from the implant itself. It feels like it is trying to work its way

> through my skin and the area appears to be bruised and is incredibly

> sore. I can't sit down for very long or walk very far. The only

> medication that offers a degree of pain relief is Ketamine which I

take

> in an oral solution but I don't like taking it as I had a rather nasty

> experience with it a few weeks ago. I took an accidental overdose due

to

> a mix up at the pharmacy when the concentration of the solution was

> increased from 50mg/5ml to 250mg/5ml and they didn't tell me. The

> hallucinations were horrendous and the doctor told me that I was very

> lucky. I live on my own and the experience has left me feeling very

> alone and vunerable.

> >

> > I really don't know what to do any more I have no quality of life

and

> am virtually housebound. The whole experience has had a profound

effect

> not only on me but also on those people that I was closest to. I am on

> my own and have become very withdrawn and I could do with someone to

> talk to who understands and may know how I'm feeling.

> >

> > Thank you for listening.

> >

> > Best regards

> >

> >

> >

> >

[Guest guest]

I agree! This group has totally made me feel welcome here and very

supportive.

> > >

> > > From: Woolrich john.woolrich@ ...

> > > Subject: Hello

> > > Stimulator@gro ups.com

> > > Date: Monday, October 13, 2008, 11:16 AM

> > >

> > >

> > >

> > >

> > >

> > >

> > > Hi everyone,

> > >

> > > My name is and I am having a few problems.

> > >

> > > I have an underlying problem with the circulation in my right leg. I

> > have had 12 operations on my leg to date and as a result of all the

> > surgery I have been left with chronic pain in my leg below the knee

> due

> > to extensive nerve damage. I spent the best part of 3 months in

> hospital

> > at the end of last year being pumped full of a cocktail of various

> drugs

> > including morphine which did little for the pain.

> > >

> > > I had a stimulator fitted just before Christmas and it was the best

> > present ever, no more pain and within 3 weeks I was off all medication

> > and back at work. I felt that I had got my life back. Unfortunately

> the

> > lead attached to my spine became detached and migrated downwards. I

> had

> > further surgery to correct the situation in February when I had a

> > different type of lead fitted which involved the removal of a part of

> > the bone. This didn't work as a subsequent x-ray showed that the lead

> > had become detached from the implant..

> > >

> > > Until then I had been covered by private health insurance but my

> > insurers decided to withdraw cover so i had to wait until April for

> > further surgery. I underwent 3 operations in 2 days but they couldn't

> > get the stimulator to work properly. I saw another neurosurgeon in May

> > who promised he could fix things but I am still waiting for the

> > operation with no indication of when it might be.

> > >

> > > In the meantime I am in constant pain not only from my leg but also

> > from the implant itself. It feels like it is trying to work its way

> > through my skin and the area appears to be bruised and is incredibly

> > sore. I can't sit down for very long or walk very far. The only

> > medication that offers a degree of pain relief is Ketamine which I

> take

> > in an oral solution but I don't like taking it as I had a rather nasty

> > experience with it a few weeks ago. I took an accidental overdose due

> to

> > a mix up at the pharmacy when the concentration of the solution was

> > increased from 50mg/5ml to 250mg/5ml and they didn't tell me. The

> > hallucinations were horrendous and the doctor told me that I was very

> > lucky. I live on my own and the experience has left me feeling very

> > alone and vunerable.

> > >

> > > I really don't know what to do any more I have no quality of life

> and

> > am virtually housebound. The whole experience has had a profound

> effect

> > not only on me but also on those people that I was closest to. I am on

> > my own and have become very withdrawn and I could do with someone to

> > talk to who understands and may know how I'm feeling.

> > >

> > > Thank you for listening.

> > >

> > > Best regards

> > >

> > >

> > >

> > >

[Guest guest]

Hi, !

I am one of those softy toos...I cry at least once daily. My friends tell

me I cry as often as they change their pants!! LOL

I wish you the best of luck with the EMDR...wow! I have never heard of

that...thanks for the informaton...that is why I love this group...I always

learn

something new every day...just like my mom told me when I was a wee

one....your day is not complete if you do not learn something new! She was so

right!!!

I am so sorry that you are going through the hellish nightmares still. I

still have one or two every so often, but NOTHING like it was...torture! I

really hope that this helps you...and I can't imagine how it must be with

having

to think of all the bad things that has happened....hang in with

it...hopefully it will do it's job and really help you!

Man..that is awful how you have to wait...and I TOTALLY agree with you...it

is extremely grossly unfair when money is the main importance and not people

in real pain. Shame on them!!

You were not rambling...it is a pleasure to chat with you.

I hope I can help you in any way possible...this is why we are all here...to

help each otherl

Hope you have a great night and keep your chin up!!

Gentle hugs to you and all,

Kathy G.

Group Co-owner

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local.mapquest.com/?ncid=emlcntnew00000002)

[Guest guest]

consider going on the duregic patch it is Fentsynl which is 10

times stronger then morphine. Mike group owner

>

> Hi Kathy,

>  

> Thank you so much for your kind message.

>  

> Just knowing that there are people out there with whom I can share

my experiences has been huge already and I hope that in some small

way that I may be able to help others too.

>  

> I must admit to being a bit of a softy and your message brought me

to tears especially when you mentioned about your experience with

Ketamine. Yes, ever since the overdose I have been having the most

terrible nightmares. They are so vivid and real that it is truly

frightening and I can only manage to sleep for a couple of hours a

day even with taking sleeping tablets. I have been put on a programme

of EMDR therapy which induces rapid eye movement similar to that of

the REM stage of sleep. At the same time you are made to focus on the

trauma with the idea that after 5 or 6 sessions you will still

remember what happened but it will no longer have the same

distressing effect and the nightmares will stop. I understand that

this programme is used to successfully treat people suffering with

post traumatic stress. The only draw back so far is that in the early

stages things get worse because you are made to focus on the bad

things and that induces more

> nightmares even if you happen to nod off during the day! Ah, well,

as they say, no pain no gain!!

>  

> Apparently, according to my pain doctor,  my physiology is such

that I have a very high tolerence to most analgesics and opiates so I

require very high doses. For some reason the Ketamine helps on a

relatively small dose of 250mg every 4 hours. I don't particularly

like taking it after what happened but as its the only thing that

really makes a difference without turning me into a complete zombie,

I'll stick with it. Doc reckons that that is what kept me going.

When I took the overdose, instead of the usual, I took over 1000mg

in one go. I was totally out of it for over 6 hours and it was

another 4 before I was sufficiently with it to call for help.

Pharmacy have assured me that it won't happen again.

>  

> Thanks for the tip re the pain pump I'll speak to my pain dr about

it but somehow I think it will be a no-go. Just to briefly explain, I

am not actually based in the USA but live in the UK. I live on an

island called Guernsey which is one of a group of small islands known

as the Channel Islands. Although we are part of the UK geographically

we are closer to France. We have a population of about 60,000 and are

completely self governing with our own health system. The health

system is basically 2 tiered, private and state funded. With private

health insurance you get seen very quickly, without it you have to

wait your turn. Things are further complicated over here in that

whilst our medical services are superb for such a small place there

are limitations. One of these is that we do not have a neurosurgical

department. This means that I have to be referred to

neurosurgeons on the UK mainland. It also means that I have to

travel long distances to get the

> necessary surgery. At the moment I've got caught up in wranglings

between the hospital in the UK and the health services over here as

to where the funding for the op is coming from. It seems grossly

unfair that it all comes down to money when an individuals health is

a stake. It doesn't help much either when my pain dr tells me that I

am the worst patient he has ever had in terms of being seen by

specialists by a factor of at least 10!! So its just a case of daily

phone calls to the UK hospital to find out how things are coming on

and waiting. So going back to the pain-pump its a great idea in the

interim but I would still have to be referred to a neurosurgeon in

the UK and then have to wait months for the surgery to have it fitted!

>  

> Anyway I've rambled on for far too long. Thank you again for your

support, help and understanding.

>  

>

>  

>

>

>

> Re: Re: Hello

>

>

> Hi !

>

> My name is Kathy G. and I co-own the group with Mike, our founder.

>

> I am so glad that you wrote in to get the support and help that

this group

> of folks can give to you! So many of us really know the struggles

that you

> are living with...and even though we can't take the pain and

struggles away,

> obviusly, we can give you our experiences, some suggestions and

receive

> suggestions back from you on other areas. This is why this is so

great!

>

> I am so very sorry to hear of your nightmare, . With regards to

the

> horrendous experience with the Ketamine...I can really understand.

I had three

> injections of it while in the hospital for pain control. The spasms

and pain

> I was having were so severe that is all that they had left to

try...but they

> did not mix the medication that allievates the

hallucinations. ..and oh dear

> God...they were awful...they lasted for several hours each time.

>

> Are you having nightmares now? If you are, it most probably is from

the

> Ketamine. I was told that the nightmares that I was having was from

the the

> Ketamine, and they lasted for about 6 months....but the intensity

of them did

> decrease with each month. I hope you are not having them, but if

you

> are...maybe knowing why might help you.

>

> As you said that this is really the only med that is helping

you...as crazy

> as this is going to sound coming from me with my experience.. .I

wouldn't push

> it aside altogether.. .maybe you can order it from that pharmacy or

a

> different one already in the premeasured dose that you

need..instead of any human

> error happening again with mixing it.

>

> Another really good idea is a pain pump. I had one for quite some

time and

> it really, really made a world of difference. This way, all the

meds are

> pre-measured and are in the pump....not many oral meds are needed

for pain

> relief..if any...and the pump is totally controlled by the dr. The

pump is designed

> to reduce the pain by delivering meds to the intrathecal space

surrounding

> the spinal cord. It is great also because smaller doses of meds are

needed to

> get relief..

>

> You might really want to consider this route with your pain doc.

>

> What has your Pain management dr or neuro surgeon suggested doing

about the

> stim itself? If you are having to wait so long to be scheduled with

this new

> neuro surgeon...maybe it is time to find another one. If you want,

you can

> email me directly where you live...what city and state...and I will

look into

> some neurosurgoens for you....maybe one that you haven't tried who

will take

> your case alot more seriously than this dr surely is. No one should

have to

> wait this long in agony. This is just not right to you, , and I

am so

> sorry that it is happening to you.

>

> My email address is _KGavi@..._ (mailto:KGavi@...) and my cell

> number is (215) 783-9066. Please call or write me any time...this

is why Mike

> and I have this group...to help out when we can. I have received so

much love

> and friendship from these great folks ...and I am sure you will

feel the suppo

> rt too!

>

> I can really understand that you have become withdrawn... pain will

do that

> just in itself...but when the pain is so severe...and it seems that

it can't

> be helped...that old depression rears it's ugly head...and I think

we all know

> about that guy...but hopefully either the neuro surgeon you have

now will

> finally scedule you....keep calling and be a hemmroid..(nicer way

of saying

> pain in the you know where) until you get satisfaction, or seek

another

> neurosurgeons help. One way, hopefully your stim will be fixed.

Please really think

> about the pain pump.

>

> Here is the site for the company that I had my pump from...and

there are

> others out there too. Medtronic.com Here you can read all about the

pumps. I

> am not sure what your illness is, . I have severe RSD now for

26 years.

> They now call it complex regional pain syndrome.... but it will

always be RSD

> to me. I have had it since age 14.

>

> I hope that some of this infor helps you, . Please know that

Mike and I

> are always here...as are our moderators.. .I know that you have

spoken to

> some of them...one being Kathy Sweet and Sue C. These ladies are

awesome people

> and really are great with their supportive and loving ways, as are

all our

> moderators. All the group members are really great folks who are in

the same

> boat as the rest of us...and help each other through support,

laughter and

> knowledge... which is power..power to help ourselves!

>

> Gentle hugs to you and all,

>

> Kathy G.

> Group Co-owner

>

>

> ************ **New MapQuest Local shows what's happening at your

destination.

> Dining, Movies, Events, News & more. Try it out

> (http://local. mapquest. com/?ncid= emlcntnew0000000 2)

>

>

[Guest guest]

Hi Kathy,

 

Thanks again for your messages, they really cheer me up!

 

I've found that letting my feelings out really helps. I used to bottle things up

thinking that crying was a sign of weakness but it made things a lot worse. So

now I let things go all the time! Part of the EMDR therapy is that when things

get very bad they get you to focus in your mind on a place and time when you

felt safe and comfortable. Trouble is when I think of my place it makes me cry

because I so want to be there again. Guess there's no hope for me! LOL

 

Ah, the wonders of parental wisdom! Mine were the same, they used to come out

with some real gems. At the time I'd think yeah, right, but now I'm older I

realise that they had something and I've started doing it with my son!

 

I'm not having a very good day. I didn't sleep at all last night the pain is

really bad at the moment.

 

I've spoken with the neurosurgeon's p.a. today and she was able to confirm that

my case has now been passed on to the hospital's contracts department so at

least there has been some progress although I still have no idea when the op is

going to be. She was also able to confirm that the neurosurgeon has confirmed

that he will be replacing the whole thing and repositioning the generator in my

abdomen instead of my butt. Yippee!! I'll be able to sit down again! LOL.

 

I hope that they give me plenty of notice as I have to organise all the travel

arrangements, its not like I can just get in the car and drive there. When I

went to see the neurosurgeon in May I had to take two flights to get there.

Going through airports with an SCS is a real hoot as it sets the alarms off

every time! I carry a card with me to say I've got one fitted but that doesn't

seem to make any difference to the security people. They still make me go

through the scanner and then I get frisked, its only when they see the

scars/dressings that they believe me. The best one was when I came home from

having the trial stimulator fitted. The guard actually grabbed hold of the wire

that was sticking out of my back, I think he thought that I was stuffed full of

C4 or something, it took me ages to convince him otherwise!! Travelling like

this especially after having had surgery is a very difficult and painful

experience as the planes are small and very

cramped. When I came home in April after having endured a total of 13 hours of

surgery the flight was really rough and I felt every bump and jolt as if

somebody was whacking me in the back with a lump hammer! I was sat next to a

window where I could see the landing gear come down so when we came in to land I

braced myself for impact but I was so tense and the landing was so rough that I

actually broke a rib on touch down!! I think my middle name is " Jinx " !! LOL. Got

to see the funny side of these things otherwise you'd go completely nuts!

 

Hope you are ok and looking after youself.

 

Take care

 

 

Re: Re: Hello

Hi, !

I am one of those softy toos...I cry at least once daily. My friends tell

me I cry as often as they change their pants!! LOL

I wish you the best of luck with the EMDR...wow! I have never heard of

that...thanks for the informaton.. .that is why I love this group...I always

learn

something new every day...just like my mom told me when I was a wee

one....your day is not complete if you do not learn something new! She was so

right!!!

I am so sorry that you are going through the hellish nightmares still. I

still have one or two every so often, but NOTHING like it was...torture! I

really hope that this helps you...and I can't imagine how it must be with having

to think of all the bad things that has happened.... hang in with

it...hopefully it will do it's job and really help you!

Man..that is awful how you have to wait...and I TOTALLY agree with you...it

is extremely grossly unfair when money is the main importance and not people

in real pain. Shame on them!!

You were not rambling...it is a pleasure to chat with you.

I hope I can help you in any way possible...this is why we are all here....to

help each otherl

Hope you have a great night and keep your chin up!!

Gentle hugs to you and all,

Kathy G.

Group Co-owner

************ **New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local. mapquest. com/?ncid= emlcntnew0000000 2)

[Guest guest]

Thanks for that Mike. I'm seeing the pain dr on Friday morning so I'll mention

it to him then. Know exactly what you mean re the strange looks when adjusting

the settings! Mine is in my right butt area.

 

Re: Re: Hello

>

>

> Hi !

>

> My name is Kathy G. and I co-own the group with Mike, our founder.

>

> I am so glad that you wrote in to get the support and help that

this group

> of folks can give to you! So many of us really know the struggles

that you

> are living with...and even though we can't take the pain and

struggles away,

> obviusly, we can give you our experiences, some suggestions and

receive

> suggestions back from you on other areas. This is why this is so

great!

>

> I am so very sorry to hear of your nightmare, . With regards to

the

> horrendous experience with the Ketamine...I can really understand.

I had three

> injections of it while in the hospital for pain control. The spasms

and pain

> I was having were so severe that is all that they had left to

try...but they

> did not mix the medication that allievates the

hallucinations. ..and oh dear

> God...they were awful...they lasted for several hours each time.

>

> Are you having nightmares now? If you are, it most probably is from

the

> Ketamine. I was told that the nightmares that I was having was from

the the

> Ketamine, and they lasted for about 6 months....but the intensity

of them did

> decrease with each month. I hope you are not having them, but if

you

> are...maybe knowing why might help you.

>

> As you said that this is really the only med that is helping

you...as crazy

> as this is going to sound coming from me with my experience.. .I

wouldn't push

> it aside altogether.. .maybe you can order it from that pharmacy or

a

> different one already in the premeasured dose that you

need..instead of any human

> error happening again with mixing it.

>

> Another really good idea is a pain pump. I had one for quite some

time and

> it really, really made a world of difference. This way, all the

meds are

> pre-measured and are in the pump....not many oral meds are needed

for pain

> relief..if any...and the pump is totally controlled by the dr. The

pump is designed

> to reduce the pain by delivering meds to the intrathecal space

surrounding

> the spinal cord. It is great also because smaller doses of meds are

needed to

> get relief..

>

> You might really want to consider this route with your pain doc.

>

> What has your Pain management dr or neuro surgeon suggested doing

about the

> stim itself? If you are having to wait so long to be scheduled with

this new

> neuro surgeon...maybe it is time to find another one. If you want,

you can

> email me directly where you live...what city and state...and I will

look into

> some neurosurgoens for you....maybe one that you haven't tried who

will take

> your case alot more seriously than this dr surely is. No one should

have to

> wait this long in agony. This is just not right to you, , and I

am so

> sorry that it is happening to you.

>

> My email address is _KGavi@..._ (mailto:KGavi@ ...) and my cell

> number is (215) 783-9066. Please call or write me any time...this

is why Mike

> and I have this group...to help out when we can. I have received so

much love

> and friendship from these great folks ....and I am sure you will

feel the suppo

> rt too!

>

> I can really understand that you have become withdrawn... pain will

do that

> just in itself...but when the pain is so severe...and it seems that

it can't

> be helped...that old depression rears it's ugly head...and I think

we all know

> about that guy...but hopefully either the neuro surgeon you have

now will

> finally scedule you....keep calling and be a hemmroid..(nicer way

of saying

> pain in the you know where) until you get satisfaction, or seek

another

> neurosurgeons help. One way, hopefully your stim will be fixed.

Please really think

> about the pain pump.

>

> Here is the site for the company that I had my pump from...and

there are

> others out there too. Medtronic.com Here you can read all about the

pumps. I

> am not sure what your illness is, . I have severe RSD now for

26 years.

> They now call it complex regional pain syndrome.... but it will

always be RSD

> to me. I have had it since age 14.

>

> I hope that some of this infor helps you, . Please know that

Mike and I

> are always here...as are our moderators.. .I know that you have

spoken to

> some of them...one being Kathy Sweet and Sue C. These ladies are

awesome people

> and really are great with their supportive and loving ways, as are

all our

> moderators. All the group members are really great folks who are in

the same

> boat as the rest of us...and help each other through support,

laughter and

> knowledge... which is power..power to help ourselves!

>

> Gentle hugs to you and all,

>

> Kathy G.

> Group Co-owner

>

>

> ************ **New MapQuest Local shows what's happening at your

destination.

> Dining, Movies, Events, News & more. Try it out

> (http://local. mapquest. com/?ncid= emlcntnew0000000 2)

>

>

[Guest guest]

Hey !

In my opinion, a REAL man DOES show his emotions through tears of joy or

sorrow...happiness or frustration..good or bad...GOOD for you, !!!

My dad always taught me that just because a person is a man...doesn't mean

that he doesn't have emotions just like women do...my dad retired a Captain in

the Philadelphia, Pa police department. He was a police officer for 27

years...and the things that he witnessed and saw...brought him to tears...a lot

happy, but all too many sad and horrific. That is why his family is so

precious to him....that he gets unconditional love from us and gives it right

back.

Alright...enough about my dad...sorry...

I was so glad to hear that the mail cheers you up...that is awesome, my

friend!

It sounds like the EMDR is helping you....that is terrific!! I hope it

continues to really help you out!!

Sorry to hear about your sleepless night....dear Lord, can I understand! I

get, if I am lucky, 1 to 1 1/2 hour of sleep per night. This really does

catch up with you and kicks you in the butt...especially when driving...so I

always make sure that the coffee pot is on during the day....it has become my

brand new friend...God bless Caffeine...LOL

It does sound promising about the neurosurgeon's response...at least your

case is still not on his/her pending pile on his/her desk...which I am sure is

highly piled to the ceiling...LOL

It is great that they are going to replace the whole unit and reposition the

generator into your abdomen instead of your butt...I am sure that this must

be uncomfortable and a wee bit embarrassing when you are turning it on and

off via your butt...the crowds of strangers must love you...LOL

Mine are in my very low back...near my hips...they hurt so badly now. My

back is just killing me from them...but we have to take the good with the

bad...right?

It must be so frustrating for you to say the least, . I thought it was

hard for me making plans for my daughter when I am in the

hospital...especially when she was a wee one...but GEEZE...you really have a

time of it..it must

be a real hemorrhoid..(nicer than saying pain in the ass..LOL) OOPS!! LOL

When you are ready to fly again....what you could do is call the airline

ahead of time and let them know that you have a disability and you have a

spinal

stimulator..and explain what that is to them...maybe asking for a supervisor

might be the best route to go. This way, you can find out what the best way

to handle the situation will be. When I flew to Jamaica for my honeymoon,

that is what I did. They were very kind to me. In addition to the stim, I

absolutely must bring my portable nebulizer with me..I have severe asthma.

Well....I didn't mention this to them,,,,and even though I had a note from my

physician on letter head paper and a note from the medical supply company

explaining what the machine was...they actually poured five of my vials

out.....I

was really upset, but wasn't too surprised...this was Novermber 12,

2001...right after 9-11-01.

Another thing that might really help is when you call, if you call ahead,

ask for a wheelchair to be waiting for you...tellign them that you have a

disability...(Please note that I DIDN'T SAY YOU ARE DISABLED...) What I DID say

was you have a disability. I really think that we all should stress this...we

are ourselves first..we are people..who happen to have a problem, but we are

NOT our problem. I read somewhere once.... " would you call a cancer patient

cancerous....no...we say Jane has cancer...not Jane is cancerous...it should

be the same thing for us...ie I have a disability...I am NOT disabled. I am

a 39 year old happily married mom of a beautiful 17 year old daughter, who

has a disability called RSD....I am not RSD. Sorry, ..I kind of lost the

topic..there...but that way with the wheelchair...they will see that you have

an illness and will not jostle you around.

The flight must be hell for you after surgery!! I am so sorry that you have

to deal with that! Does your neurosurgeon know of any short term facilities

that you can recuperate from prior to going home on the plane? Does anyone

fly out with you..If so....perhaps, you could stay at a hotel near the

hospital after they discharge you just for a few days where youwon't be so raw

from

the pain. Just some ideas....I hope you have great luck with everything,

...From what you have been through..you are entitled for a break by now!

thanks for asking for me...things are better right now...the pain is still

horrendous...as always...but thank God the spasms have stopped...they brought

me to my knees this time.

I see my P,M. Dr. tomorrow...and we are going to discuss the replacement of

one of my batteries..it is 8 years old...so it is time..the stim is not

working now..so I want to get it done asap, but I developed severe cellulitis

in

my other leg now...RSD is so much worse now from that....aaahh! I had MRSA in

the leg again....so I had to wait until the infection and wound has cleared

up...which I think it has so...I am keeping my fingers and toes and eyes

(when not driving) crossed for good luck!!

They will replace the battery and at the same time add three more leads to

the stim for my legs...so hopefully the stimulation will hit the ankles and

feet, as no stim is hitting them now...it is actually " jumping " over the damned

ankles.

Well...I have gone on long enough now...best of luck to you and let me know

how you make out!

Love,

Kathy G.

Group Co-owner

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

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[Guest guest]

 

You must never give up hope. When I was at my lowest point, at the bottom of

that deep, dark hole, I felt like giving up. I'm so grateful that I didn't.

Crying is not a sign of weakness, but rather strength. A good cry releases so

much stress and tension. I know I always feel better after a good cry..

Glad to hear that you are making progress on your surgery. Just wish that you

had a way to move up the date. Just keep calling and asking when it's going to

be.

I have never had to go through the airport scanner.   I tell them that I have

implants and I have to be patted down. I have traveled numerous times and have

never been told that I had to go through the scanner, once I've informed them

that I have implants.  

 

Sue C

Moderator

From: Woolrich <john.woolrich@...>

Subject: Re: Re: Hello

Stimulator

Date: Wednesday, October 15, 2008, 9:38 PM

Hi Kathy,

 

Thanks again for your messages, they really cheer me up!

 

I've found that letting my feelings out really helps. I used to bottle things up

thinking that crying was a sign of weakness but it made things a lot worse. So

now I let things go all the time! Part of the EMDR therapy is that when things

get very bad they get you to focus in your mind on a place and time when you

felt safe and comfortable. Trouble is when I think of my place it makes me cry

because I so want to be there again. Guess there's no hope for me! LOL

 

Ah, the wonders of parental wisdom! Mine were the same, they used to come out

with some real gems. At the time I'd think yeah, right, but now I'm older I

realise that they had something and I've started doing it with my son!

 

I'm not having a very good day. I didn't sleep at all last night the pain is

really bad at the moment.

 

I've spoken with the neurosurgeon' s p.a. today and she was able to confirm that

my case has now been passed on to the hospital's contracts department so at

least there has been some progress although I still have no idea when the op is

going to be. She was also able to confirm that the neurosurgeon has confirmed

that he will be replacing the whole thing and repositioning the generator in my

abdomen instead of my butt. Yippee!! I'll be able to sit down again! LOL.

 

I hope that they give me plenty of notice as I have to organise all the travel

arrangements, its not like I can just get in the car and drive there. When I

went to see the neurosurgeon in May I had to take two flights to get there.

Going through airports with an SCS is a real hoot as it sets the alarms off

every time! I carry a card with me to say I've got one fitted but that doesn't

seem to make any difference to the security people. They still make me go

through the scanner and then I get frisked, its only when they see the

scars/dressings that they believe me. The best one was when I came home from

having the trial stimulator fitted. The guard actually grabbed hold of the wire

that was sticking out of my back, I think he thought that I was stuffed full of

C4 or something, it took me ages to convince him otherwise!! Travelling like

this especially after having had surgery is a very difficult and painful

experience as the planes are small and very

cramped. When I came home in April after having endured a total of 13 hours of

surgery the flight was really rough and I felt every bump and jolt as if

somebody was whacking me in the back with a lump hammer! I was sat next to a

window where I could see the landing gear come down so when we came in to land I

braced myself for impact but I was so tense and the landing was so rough that I

actually broke a rib on touch down!! I think my middle name is " Jinx " !! LOL. Got

to see the funny side of these things otherwise you'd go completely nuts!

 

Hope you are ok and looking after youself.

 

Take care

 

 

Re: Re: Hello

Hi, !

I am one of those softy toos...I cry at least once daily. My friends tell

me I cry as often as they change their pants!! LOL

I wish you the best of luck with the EMDR...wow! I have never heard of

that...thanks for the informaton.. .that is why I love this group...I always

learn

something new every day...just like my mom told me when I was a wee

one....your day is not complete if you do not learn something new! She was so

right!!!

I am so sorry that you are going through the hellish nightmares still. I

still have one or two every so often, but NOTHING like it was...torture! I

really hope that this helps you...and I can't imagine how it must be with having

to think of all the bad things that has happened.... hang in with

it...hopefully it will do it's job and really help you!

Man..that is awful how you have to wait...and I TOTALLY agree with you...it

is extremely grossly unfair when money is the main importance and not people

in real pain. Shame on them!!

You were not rambling...it is a pleasure to chat with you.

I hope I can help you in any way possible...this is why we are all here....to

help each otherl

Hope you have a great night and keep your chin up!!

Gentle hugs to you and all,

Kathy G.

Group Co-owner

************ **New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local. mapquest. com/?ncid= emlcntnew0000000 2)

[Guest guest]

Yes, a good cry sure can make you feel better. I sure have quite a few!

With my fusion, I have a plate in my neck. I carry a letter and pics

of x-rays to show at airports, I also have screws in both of my feet.

So far now problems.

>

> From: Woolrich <john.woolrich@...>

> Subject: Re: Re: Hello

> Stimulator

> Date: Wednesday, October 15, 2008, 9:38 PM

>

>

>

>

>

>

> Hi Kathy,

>  

> Thanks again for your messages, they really cheer me up!

>  

> I've found that letting my feelings out really helps. I used to

bottle things up thinking that crying was a sign of weakness but it

made things a lot worse. So now I let things go all the time! Part of

the EMDR therapy is that when things get very bad they get you to

focus in your mind on a place and time when you felt safe and

comfortable. Trouble is when I think of my place it makes me cry

because I so want to be there again. Guess there's no hope for me! LOL

>  

> Ah, the wonders of parental wisdom! Mine were the same, they used to

come out with some real gems. At the time I'd think yeah, right, but

now I'm older I realise that they had something and I've started doing

it with my son!

>  

> I'm not having a very good day. I didn't sleep at all last night the

pain is really bad at the moment.

>  

> I've spoken with the neurosurgeon' s p.a. today and she was able to

confirm that my case has now been passed on to the hospital's

contracts department so at least there has been some progress although

I still have no idea when the op is going to be. She was also able to

confirm that the neurosurgeon has confirmed that he will be replacing

the whole thing and repositioning the generator in my abdomen instead

of my butt. Yippee!! I'll be able to sit down again! LOL.

>  

> I hope that they give me plenty of notice as I have to organise all

the travel arrangements, its not like I can just get in the car and

drive there. When I went to see the neurosurgeon in May I had to take

two flights to get there. Going through airports with an SCS is a real

hoot as it sets the alarms off every time! I carry a card with me to

say I've got one fitted but that doesn't seem to make any difference

to the security people. They still make me go through the scanner and

then I get frisked, its only when they see the scars/dressings that

they believe me. The best one was when I came home from having the

trial stimulator fitted. The guard actually grabbed hold of the wire

that was sticking out of my back, I think he thought that I was

stuffed full of C4 or something, it took me ages to convince him

otherwise!! Travelling like this especially after having had surgery

is a very difficult and painful experience as the planes are small and

very

> cramped. When I came home in April after having endured a total of

13 hours of surgery the flight was really rough and I felt every bump

and jolt as if somebody was whacking me in the back with a lump

hammer! I was sat next to a window where I could see the landing gear

come down so when we came in to land I braced myself for impact but I

was so tense and the landing was so rough that I actually broke a rib

on touch down!! I think my middle name is " Jinx " !! LOL. Got to see the

funny side of these things otherwise you'd go completely nuts!

>  

> Hope you are ok and looking after youself.

>  

> Take care

>  

>

>  

>

> Re: Re: Hello

>

> Hi, !

>

> I am one of those softy toos...I cry at least once daily. My friends

tell

> me I cry as often as they change their pants!! LOL

>

> I wish you the best of luck with the EMDR...wow! I have never heard of

> that...thanks for the informaton.. .that is why I love this

group...I always learn

> something new every day...just like my mom told me when I was a wee

> one....your day is not complete if you do not learn something new!

She was so

> right!!!

>

> I am so sorry that you are going through the hellish nightmares

still. I

> still have one or two every so often, but NOTHING like it

was...torture! I

> really hope that this helps you...and I can't imagine how it must be

with having

> to think of all the bad things that has happened.... hang in with

> it...hopefully it will do it's job and really help you!

>

> Man..that is awful how you have to wait...and I TOTALLY agree with

you...it

> is extremely grossly unfair when money is the main importance and

not people

> in real pain. Shame on them!!

>

> You were not rambling...it is a pleasure to chat with you.

>

> I hope I can help you in any way possible...this is why we are all

here....to

> help each otherl

>

> Hope you have a great night and keep your chin up!!

>

> Gentle hugs to you and all,

>

> Kathy G.

> Group Co-owner

>

> ************ **New MapQuest Local shows what's happening at your

destination.

> Dining, Movies, Events, News & more. Try it out

> (http://local. mapquest. com/?ncid= emlcntnew0000000 2)

>

>

[Guest guest]

,

Seeing as how the security people won't listen to you. Next time ask for a

wheelchair the minute you get to the airport and tell them that you need it all

the way to the plane. When you get to security, just tell them that you really

can't walk too well and that you will need to be manually scanned.

Dorothy

[Guest guest]

Thanks Sue, I haven't given up nor am going to, I still have a lot of living to

do although there are times when I must admit to thinking all the usual things

like " what's the point? " and " what have I done to deserve all this " . I'm sure we

all do it from time to time. Like tonight, its 4.00 am here and I'm still wide

awake cos the pain in my leg is really bad and I'm also in a lot of pain from my

scs.

 

The last bout of surgery in April really did me in. I don't know what they did

but things haven't been the same since. When I went in for the op I was told

that it was just a simple matter of reconnecting the lead to the generator. I

was wheeled into the anaesthetist's room, knocked out and then woken up on the

operating table when they tested the scs. Unfortunately instead of the " buzz "

being in my right leg it was now in my stomach!! So still awake I was wheeled

out of the theatre back into the anaesthetist's room to be knocked out again so

they could then open my back up to fiddle about with the positioning of the lead

on my spine. This took a total of 10 hours and then I had to go through it all

again the next day, another 3 hours " on the table " but they still couldn't get

the stimulation in the right place. I still find it hard to come to terms with

what happened next. The next day I heard the doctors discussing me outside of my

room and I heard

them say " well who's paying for all this? " Within 24 hours I was packed off

home! I wasn't fit to travel and a nurse from our local hospital had to fly out

to collect me and bring me back. What kind of treatment is that? The

neurosurgeon's last comment? " We've left the scs in on the offchance that it may

start working properly all by itself " !!!

 

I feel that again it all came down to money and that they just washed their

hands of me, especially after my consultation with the next neurosurgeon. He

said that scar tissue wasn't a problem and could be removed without a problem.

He was very confident that he could fix things and said that he would use a lead

with either 2 or 3 paddles at the end and wouldn't suture them in place but

would screw them in so that there was no chance of the lead moving again. Mind

you I'm now taking everything with a pinch of salt because he also said that the

hospital charter stated that no patient would have to wait longer than 5 months

after consultation for their op. Well the 5 months are up today and although

I've now been passed on to the hospital's contracts department I'm still not

even on the waiting list! This is what I'm finding so very hard to cope with

because I don't seem to be getting very far and as time goes by the pain is

getting worse all the time and I

have the feeling that I'm heading for another visit to hospital to be pumped

full of drugs again (at least they might knock me out and I'll be able to get

some sleep!! LOL).

 

I don't know about you or everyone else in the group, but I think that the thing

that upsets me most is that I have have built up deep feelings of anger,

frustration and resentment which are totally alien to me and I have taken these

feelings out on those people that mean the most to me and I care deeply about,

which has lead to me losing friendships that I treasured.

 

Anyway I'm going to take another dose of Ketamine and see if I can get some

sleep.

 

Thanks for listening and for all of your help.

 

With warmest wishes

 

Re: Re: Hello

Hi, !

I am one of those softy toos...I cry at least once daily. My friends tell

me I cry as often as they change their pants!! LOL

I wish you the best of luck with the EMDR...wow! I have never heard of

that...thanks for the informaton.. .that is why I love this group...I always

learn

something new every day...just like my mom told me when I was a wee

one.....your day is not complete if you do not learn something new! She was so

right!!!

I am so sorry that you are going through the hellish nightmares still. I

still have one or two every so often, but NOTHING like it was...torture! I

really hope that this helps you...and I can't imagine how it must be with having

to think of all the bad things that has happened.... hang in with

it...hopefully it will do it's job and really help you!

Man..that is awful how you have to wait...and I TOTALLY agree with you...it

is extremely grossly unfair when money is the main importance and not people

in real pain. Shame on them!!

You were not rambling....it is a pleasure to chat with you.

I hope I can help you in any way possible...this is why we are all here....to

help each otherl

Hope you have a great night and keep your chin up!!

Gentle hugs to you and all,

Kathy G.

Group Co-owner

************ **New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local. mapquest. com/?ncid= emlcntnew0000000 2)

[Guest guest]

Thanks Dorothy, great idea, I'll give it a go.

 

Re: Re: Hello

,

Seeing as how the security people won't listen to you. Next time ask for a

wheelchair the minute you get to the airport and tell them that you need it all

the way to the plane.. When you get to security, just tell them that you really

can't walk too well and that you will need to be manually scanned.

Dorothy

[Guest guest]

,

Where do you live if you don’t mind me asking? It sounds sort of like

socialized medicine? Have you thought about a pain pump? I had my stim put in

yesterday....i thought that it was common practice to have the leads screwed

down? Did you have a neuro surgeon or a pain doc do your surgery....when you

say theatre for OR it makes me think England or Canada?

Deb RN

From: Stimulator [mailto:Stimulator ] On Behalf

Of Woolrich

Sent: Wednesday, October 15, 2008 10:18 PM

Stimulator

Subject: Re: Re: Hello

Thanks Sue, I haven't given up nor am going to, I still have a lot of living to

do although there are times when I must admit to thinking all the usual things

like " what's the point? " and " what have I done to deserve all this " . I'm sure we

all do it from time to time. Like tonight, its 4.00 am here and I'm still wide

awake cos the pain in my leg is really bad and I'm also in a lot of pain from my

scs.

The last bout of surgery in April really did me in. I don't know what they did

but things haven't been the same since. When I went in for the op I was told

that it was just a simple matter of reconnecting the lead to the generator. I

was wheeled into the anaesthetist's room, knocked out and then woken up on the

operating table when they tested the scs. Unfortunately instead of the " buzz "

being in my right leg it was now in my stomach!! So still awake I was wheeled

out of the theatre back into the anaesthetist's room to be knocked out again so

they could then open my back up to fiddle about with the positioning of the lead

on my spine. This took a total of 10 hours and then I had to go through it all

again the next day, another 3 hours " on the table " but they still couldn't get

the stimulation in the right place. I still find it hard to come to terms with

what happened next. The next day I heard the doctors discussing me outside of my

room and I heard

them say " well who's paying for all this? " Within 24 hours I was packed off

home! I wasn't fit to travel and a nurse from our local hospital had to fly out

to collect me and bring me back. What kind of treatment is that? The

neurosurgeon's last comment? " We've left the scs in on the offchance that it may

start working properly all by itself " !!!

I feel that again it all came down to money and that they just washed their

hands of me, especially after my consultation with the next neurosurgeon. He

said that scar tissue wasn't a problem and could be removed without a problem.

He was very confident that he could fix things and said that he would use a lead

with either 2 or 3 paddles at the end and wouldn't suture them in place but

would screw them in so that there was no chance of the lead moving again. Mind

you I'm now taking everything with a pinch of salt because he also said that the

hospital charter stated that no patient would have to wait longer than 5 months

after consultation for their op. Well the 5 months are up today and although

I've now been passed on to the hospital's contracts department I'm still not

even on the waiting list! This is what I'm finding so very hard to cope with

because I don't seem to be getting very far and as time goes by the pain is

getting worse all the time and I

have the feeling that I'm heading for another visit to hospital to be pumped

full of drugs again (at least they might knock me out and I'll be able to get

some sleep!! LOL).

I don't know about you or everyone else in the group, but I think that the thing

that upsets me most is that I have have built up deep feelings of anger,

frustration and resentment which are totally alien to me and I have taken these

feelings out on those people that mean the most to me and I care deeply about,

which has lead to me losing friendships that I treasured.

Anyway I'm going to take another dose of Ketamine and see if I can get some

sleep.

Thanks for listening and for all of your help.

With warmest wishes

Re: Re: Hello

Hi, !

I am one of those softy toos...I cry at least once daily. My friends tell

me I cry as often as they change their pants!! LOL

I wish you the best of luck with the EMDR...wow! I have never heard of

that...thanks for the informaton.. .that is why I love this group...I always

learn

something new every day...just like my mom told me when I was a wee

one.....your day is not complete if you do not learn something new! She was so

right!!!

I am so sorry that you are going through the hellish nightmares still. I

still have one or two every so often, but NOTHING like it was...torture! I

really hope that this helps you...and I can't imagine how it must be with having

to think of all the bad things that has happened.... hang in with

it...hopefully it will do it's job and really help you!

Man..that is awful how you have to wait...and I TOTALLY agree with you...it

is extremely grossly unfair when money is the main importance and not people

in real pain. Shame on them!!

You were not rambling....it is a pleasure to chat with you.

I hope I can help you in any way possible...this is why we are all here....to

help each otherl

Hope you have a great night and keep your chin up!!

Gentle hugs to you and all,

Kathy G.

Group Co-owner

************ **New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local. mapquest. com/?ncid= emlcntnew0000000 2)

[Guest guest]

We all that experience alot of pain have our bouts of depression, I

know I have.

It's always good to talk about things and groups like this really have

helped me alot. since my family doesn't know how it feels to live with

alot of pain, they don't always understand me.

We're here for each other.

>

> From: Woolrich <john.woolrich@ .co. uk>

> Subject: Re: Re: Hello

> Stimulator@gro ups.com

> Date: Wednesday, October 15, 2008, 9:38 PM

>

> Hi Kathy,

>  

> Thanks again for your messages, they really cheer me up!

>  

> I've found that letting my feelings out really helps. I used to

bottle things up thinking that crying was a sign of weakness but it

made things a lot worse. So now I let things go all the time! Part of

the EMDR therapy is that when things get very bad they get you to

focus in your mind on a place and time when you felt safe and

comfortable. Trouble is when I think of my place it makes me cry

because I so want to be there again. Guess there's no hope for me! LOL

>  

> Ah, the wonders of parental wisdom! Mine were the same, they used to

come out with some real gems. At the time I'd think yeah, right, but

now I'm older I realise that they had something and I've started doing

it with my son!

>  

> I'm not having a very good day. I didn't sleep at all last night the

pain is really bad at the moment.

>  

> I've spoken with the neurosurgeon' s p.a. today and she was able to

confirm that my case has now been passed on to the hospital's

contracts department so at least there has been some progress although

I still have no idea when the op is going to be. She was also able to

confirm that the neurosurgeon has confirmed that he will be replacing

the whole thing and repositioning the generator in my abdomen instead

of my butt. Yippee!! I'll be able to sit down again! LOL.

>  

> I hope that they give me plenty of notice as I have to organise all

the travel arrangements, its not like I can just get in the car and

drive there. When I went to see the neurosurgeon in May I had to take

two flights to get there. Going through airports with an SCS is a real

hoot as it sets the alarms off every time! I carry a card with me to

say I've got one fitted but that doesn't seem to make any difference

to the security people. They still make me go through the scanner and

then I get frisked, its only when they see the scars/dressings that

they believe me. The best one was when I came home from having the

trial stimulator fitted. The guard actually grabbed hold of the wire

that was sticking out of my back, I think he thought that I was

stuffed full of C4 or something, it took me ages to convince him

otherwise!! Travelling like this especially after having had surgery

is a very difficult and painful experience as the planes are small and

very

> cramped. When I came home in April after having endured a total of

13 hours of surgery the flight was really rough and I felt every bump

and jolt as if somebody was whacking me in the back with a lump

hammer! I was sat next to a window where I could see the landing gear

come down so when we came in to land I braced myself for impact but I

was so tense and the landing was so rough that I actually broke a rib

on touch down!! I think my middle name is " Jinx " !! LOL. Got to see the

funny side of these things otherwise you'd go completely nuts!

>  

> Hope you are ok and looking after youself.

>  

> Take care

>  

>

>  

>

> Re: Re: Hello

>

> Hi, !

>

> I am one of those softy toos...I cry at least once daily. My friends

tell

> me I cry as often as they change their pants!! LOL

>

> I wish you the best of luck with the EMDR...wow! I have never heard of

> that...thanks for the informaton.. .that is why I love this

group...I always learn

> something new every day...just like my mom told me when I was a wee

> one.....your day is not complete if you do not learn something new!

She was so

> right!!!

>

> I am so sorry that you are going through the hellish nightmares

still. I

> still have one or two every so often, but NOTHING like it

was...torture! I

> really hope that this helps you...and I can't imagine how it must be

with having

> to think of all the bad things that has happened.... hang in with

> it...hopefully it will do it's job and really help you!

>

> Man..that is awful how you have to wait...and I TOTALLY agree with

you...it

> is extremely grossly unfair when money is the main importance and

not people

> in real pain. Shame on them!!

>

> You were not rambling....it is a pleasure to chat with you.

>

> I hope I can help you in any way possible...this is why we are all

here....to

> help each otherl

>

> Hope you have a great night and keep your chin up!!

>

> Gentle hugs to you and all,

>

> Kathy G.

> Group Co-owner

>

> ************ **New MapQuest Local shows what's happening at your

destination.

> Dining, Movies, Events, News & more. Try it out

> (http://local. mapquest. com/?ncid= emlcntnew0000000 2)

>

>

[Guest guest]

-Airports I have not experiance what happens with stimulator I here

its tough even after you hand them your scs card. Anyone else had to

go on a flight with your stimulator? You are not suppose to walk

through airport scanners they use magnet tech. Mike group owner-- In

Stimulator , Woolrich <john.woolrich@...> wrote:

>

> Hi Kathy,

>  

> Thanks again for your messages, they really cheer me up!

>  

> I've found that letting my feelings out really helps. I used to

bottle things up thinking that crying was a sign of weakness but it

made things a lot worse. So now I let things go all the time! Part of

the EMDR therapy is that when things get very bad they get you to

focus in your mind on a place and time when you felt safe and

comfortable. Trouble is when I think of my place it makes me cry

because I so want to be there again. Guess there's no hope for me! LOL

>  

> Ah, the wonders of parental wisdom! Mine were the same, they used

to come out with some real gems. At the time I'd think yeah, right,

but now I'm older I realise that they had something and I've started

doing it with my son!

>  

> I'm not having a very good day. I didn't sleep at all last night

the pain is really bad at the moment.

>  

> I've spoken with the neurosurgeon's p.a. today and she was able to

confirm that my case has now been passed on to the hospital's

contracts department so at least there has been some progress

although I still have no idea when the op is going to be. She was

also able to confirm that the neurosurgeon has confirmed that he will

be replacing the whole thing and repositioning the generator in my

abdomen instead of my butt. Yippee!! I'll be able to sit down again!

LOL.

>  

> I hope that they give me plenty of notice as I have to organise all

the travel arrangements, its not like I can just get in the car and

drive there. When I went to see the neurosurgeon in May I had to take

two flights to get there. Going through airports with an SCS is a

real hoot as it sets the alarms off every time! I carry a card with

me to say I've got one fitted but that doesn't seem to make any

difference to the security people. They still make me go through the

scanner and then I get frisked, its only when they see the

scars/dressings that they believe me. The best one was when I came

home from having the trial stimulator fitted. The guard actually

grabbed hold of the wire that was sticking out of my back, I think he

thought that I was stuffed full of C4 or something, it took me ages

to convince him otherwise!! Travelling like this especially after

having had surgery is a very difficult and painful experience as the

planes are small and very

> cramped. When I came home in April after having endured a total of

13 hours of surgery the flight was really rough and I felt every bump

and jolt as if somebody was whacking me in the back with a lump

hammer! I was sat next to a window where I could see the landing gear

come down so when we came in to land I braced myself for impact but I

was so tense and the landing was so rough that I actually broke a

rib on touch down!! I think my middle name is " Jinx " !! LOL. Got to

see the funny side of these things otherwise you'd go completely nuts!

>  

> Hope you are ok and looking after youself.

>  

> Take care

>  

>

>  

>

>

>

> Re: Re: Hello

>

>

> Hi, !

>

> I am one of those softy toos...I cry at least once daily. My

friends tell

> me I cry as often as they change their pants!! LOL

>

> I wish you the best of luck with the EMDR...wow! I have never heard

of

> that...thanks for the informaton.. .that is why I love this

group...I always learn

> something new every day...just like my mom told me when I was a wee

> one....your day is not complete if you do not learn something new!

She was so

> right!!!

>

> I am so sorry that you are going through the hellish nightmares

still. I

> still have one or two every so often, but NOTHING like it

was...torture! I

> really hope that this helps you...and I can't imagine how it must

be with having

> to think of all the bad things that has happened.... hang in with

> it...hopefully it will do it's job and really help you!

>

> Man..that is awful how you have to wait...and I TOTALLY agree with

you...it

> is extremely grossly unfair when money is the main importance and

not people

> in real pain. Shame on them!!

>

> You were not rambling...it is a pleasure to chat with you.

>

> I hope I can help you in any way possible...this is why we are all

here....to

> help each otherl

>

> Hope you have a great night and keep your chin up!!

>

> Gentle hugs to you and all,

>

> Kathy G.

> Group Co-owner

>

>

>

> ************ **New MapQuest Local shows what's happening at your

destination.

> Dining, Movies, Events, News & more. Try it out

> (http://local. mapquest. com/?ncid= emlcntnew0000000 2)

>

>

[Guest guest]

 

Yes, we all go to that place, the point is not to stay there to long. We waste

to much energy that way. Better to use it on the positive.  You have the right

attitude. Although your life is not the same, there is still life after pain. We

must learn to life the best quality life that we can within the limitations that

we have.

My heart goes out to you. The way you were treated screams of negligence,

malpractice to me. How could a doctor just drop a patient like that? How could

he treat you like that? I don't blame you for feeling the way that you do .

Something went terribly wrong and he washed his hands of the whole situation and

left you to suffer. I'm sure you weren't supposed to hear the comment of the

money, but you did. Unfortunately, medicine had become about money and not about

caring, compassion and helping the patient. Greed has taken over. Doctors are

spending less time with patients. You were lucky to find a doctor that was

willing to take over your case. I don't know if the first doctor made a mistake,

but it's a possibilty. You have to just keep speaking up and advocating for

yourself, that's the only way. Hopefully, the new doctor can push things through

for you. Do you have the choice of which doctor you want to use, or do they

choice for you?

When in pain it's common to vent our feels onto the ones we love without

realizing it. Sometimes it's a reaction to the meds we're on. When the pain gets

out of control, we don't mean to, but we just snap.

 

Sue C

Moderator

From: Woolrich <john.woolrich@ .co. uk>

Subject: Re: Re: Hello

Stimulator@gro ups.com

Date: Wednesday, October 15, 2008, 9:38 PM

Hi Kathy,

 

Thanks again for your messages, they really cheer me up!

 

I've found that letting my feelings out really helps. I used to bottle things up

thinking that crying was a sign of weakness but it made things a lot worse. So

now I let things go all the time! Part of the EMDR therapy is that when things

get very bad they get you to focus in your mind on a place and time when you

felt safe and comfortable. Trouble is when I think of my place it makes me cry

because I so want to be there again. Guess there's no hope for me! LOL

 

Ah, the wonders of parental wisdom! Mine were the same, they used to come out

with some real gems. At the time I'd think yeah, right, but now I'm older I

realise that they had something and I've started doing it with my son!

 

I'm not having a very good day. I didn't sleep at all last night the pain is

really bad at the moment.

 

I've spoken with the neurosurgeon' s p.a. today and she was able to confirm that

my case has now been passed on to the hospital's contracts department so at

least there has been some progress although I still have no idea when the op is

going to be. She was also able to confirm that the neurosurgeon has confirmed

that he will be replacing the whole thing and repositioning the generator in my

abdomen instead of my butt. Yippee!! I'll be able to sit down again! LOL.

 

I hope that they give me plenty of notice as I have to organise all the travel

arrangements, its not like I can just get in the car and drive there. When I

went to see the neurosurgeon in May I had to take two flights to get there.

Going through airports with an SCS is a real hoot as it sets the alarms off

every time! I carry a card with me to say I've got one fitted but that doesn't

seem to make any difference to the security people. They still make me go

through the scanner and then I get frisked, its only when they see the

scars/dressings that they believe me. The best one was when I came home from

having the trial stimulator fitted. The guard actually grabbed hold of the wire

that was sticking out of my back, I think he thought that I was stuffed full of

C4 or something, it took me ages to convince him otherwise!! Travelling like

this especially after having had surgery is a very difficult and painful

experience as the planes are small and very

cramped. When I came home in April after having endured a total of 13 hours of

surgery the flight was really rough and I felt every bump and jolt as if

somebody was whacking me in the back with a lump hammer! I was sat next to a

window where I could see the landing gear come down so when we came in to land I

braced myself for impact but I was so tense and the landing was so rough that I

actually broke a rib on touch down!! I think my middle name is " Jinx " !! LOL. Got

to see the funny side of these things otherwise you'd go completely nuts!

 

Hope you are ok and looking after youself.

 

Take care

 

 

Re: Re: Hello

Hi, !

I am one of those softy toos...I cry at least once daily. My friends tell

me I cry as often as they change their pants!! LOL

I wish you the best of luck with the EMDR...wow! I have never heard of

that...thanks for the informaton.. .that is why I love this group...I always

learn

something new every day...just like my mom told me when I was a wee

one.....your day is not complete if you do not learn something new! She was so

right!!!

I am so sorry that you are going through the hellish nightmares still. I

still have one or two every so often, but NOTHING like it was...torture! I

really hope that this helps you...and I can't imagine how it must be with having

to think of all the bad things that has happened.... hang in with

it...hopefully it will do it's job and really help you!

Man..that is awful how you have to wait...and I TOTALLY agree with you...it

is extremely grossly unfair when money is the main importance and not people

in real pain. Shame on them!!

You were not rambling.... it is a pleasure to chat with you.

I hope I can help you in any way possible...this is why we are all here....to

help each otherl

Hope you have a great night and keep your chin up!!

Gentle hugs to you and all,

Kathy G.

Group Co-owner

************ **New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local. mapquest. com/?ncid= emlcntnew0000000 2)

[Guest guest]

Dear ...

We always hurt the ones we love, trust and adore most....I think this is due

to the fact that we trust them not to leave us...they are a safe haven for

us to shout, scream, mistreat, and be rude to...and know that in the drop of a

dime...they will be there for us...because they love us.

I know this is true for me.

don't be so hard on yourself, . this is all being human. I am working

on my anger issues...I think we all have them...we hate this pain, we hate

the fact that we can't do SO much, we hat emissing out on so much life can

offer us...so we blow up...it is okay...we just need to work at not doint it so

much and for apologizing when we do do it.

Gentle hugs to you, my firend!

kathy G.

Group Co-owner

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local.mapquest.com/?ncid=emlcntnew00000002)

[Guest guest]

Hi Kathy,

 

Sorry for not getting back to you sooner but I'm going through a bit of a bad

patch. The pain in my leg and butt is really bad, I can't sleep and I don't know

where to put myself so I've spent most of my time in bed, contemplating the

meaning of life!! LOL I can't sit, can barely stand up and when I lie down I can

only rest on my left side (my generator is in my right butt cheek).

 

Thanks again for all the support and for the advice re travelling. I had to see

my pain dr today and we talked about my trip to the neurosurgeon. He could see

the amount of pain that I was in (and the fact that the pain in my butt is

getting worse) and guess what? When the time comes for my op he will arrange for

an aircraft to be chartered just for me to take me to the airport near the

hospital. This will mean that I will only have to put up with a flight of about

45mins and a short cab ride as opposed to the scheduled flight of about 1 1/2

hours and a cab ride of about the same time! Yay!! Won't  have to go through

airport security then!

 

Pain dr gave me a nerve block injection today in my leg. He injects anaesthetic

directly into the nerves either side of my knee which numbs the leg for a day or

so. Hurts like hell when he does it but its great to have a bit of relief. He

has also upped my Ketamine dose to 250mg every 2 hours. He has also given me

Lidocaine patches to stick over my implant to ease the pain a little. So as you

can imagine I'm feeling a bit spaced out but a bit more comfortable so I'm

hoping that I might be able to get some sleep tonight.

 

Please don't apologise for talking about your Dad, he sounds like an incredible

man and you must be so proud of him.

 

Unfortunately I've had to miss the last 2 EMDR treatments as on top of

everything else I developed conjunctivitis in both eyes. My right eye closed up

completely and I can barely see out of my left. Good job my laptop has large

keys! I am diabetic my immune system is not very good and I get infections very

easily. I had shingles a few weeks back too, see what I mean about being

jinxed!! LOL

 

I'm so glad those spasms have stopped and that you are feeling a bit better. I

was thinking of you, it must be hell for you. You are so incredibly strong.

 

Forgive my curiosity, but why do you have 2 stimulators? The one that I have

fitted can take up to 8 leads so wouldn't it be more comfortable to have just

one implant?

 

Anyway I'll sign off for now, speak to you later.

 

Take good care of yourself.

 

Love

 

 

 

 

 

Re: Re: Hello

Hey !

In my opinion, a REAL man DOES show his emotions through tears of joy or

sorrow...happiness or frustration. .good or bad...GOOD for you, !!!

My dad always taught me that just because a person is a man...doesn' t mean

that he doesn't have emotions just like women do...my dad retired a Captain in

the Philadelphia, Pa police department. He was a police officer for 27

years...and the things that he witnessed and saw...brought him to tears...a lot

happy, but all too many sad and horrific. That is why his family is so

precious to him.....that he gets unconditional love from us and gives it right

back.

Alright...enough about my dad...sorry. ..

I was so glad to hear that the mail cheers you up...that is awesome, my

friend!

It sounds like the EMDR is helping you....that is terrific!! I hope it

continues to really help you out!!

Sorry to hear about your sleepless night....dear Lord, can I understand! I

get, if I am lucky, 1 to 1 1/2 hour of sleep per night. This really does

catch up with you and kicks you in the butt...especially when driving...so I

always make sure that the coffee pot is on during the day....it has become my

brand new friend...God bless Caffeine...LOL

It does sound promising about the neurosurgeon' s response...at least your

case is still not on his/her pending pile on his/her desk...which I am sure is

highly piled to the ceiling...LOL

It is great that they are going to replace the whole unit and reposition the

generator into your abdomen instead of your butt...I am sure that this must

be uncomfortable and a wee bit embarrassing when you are turning it on and

off via your butt...the crowds of strangers must love you...LOL

Mine are in my very low back...near my hips...they hurt so badly now. My

back is just killing me from them...but we have to take the good with the

bad...right?

It must be so frustrating for you to say the least, . I thought it was

hard for me making plans for my daughter when I am in the

hospital...especial ly when she was a wee one...but GEEZE...you really have a

time of it..it must

be a real hemorrhoid.. (nicer than saying pain in the ass..LOL) OOPS!! LOL

When you are ready to fly again....what you could do is call the airline

ahead of time and let them know that you have a disability and you have a spinal

stimulator.. and explain what that is to them...maybe asking for a supervisor

might be the best route to go. This way, you can find out what the best way

to handle the situation will be. When I flew to Jamaica for my honeymoon,

that is what I did. They were very kind to me. In addition to the stim, I

absolutely must bring my portable nebulizer with me..I have severe asthma.

Well....I didn't mention this to them,,,,and even though I had a note from my

physician on letter head paper and a note from the medical supply company

explaining what the machine was...they actually poured five of my vials

out.....I

was really upset, but wasn't too surprised... this was Novermber 12,

2001....right after 9-11-01.

Another thing that might really help is when you call, if you call ahead,

ask for a wheelchair to be waiting for you....tellign them that you have a

disability.. .(Please note that I DIDN'T SAY YOU ARE DISABLED...) What I DID say

was you have a disability. I really think that we all should stress this...we

are ourselves first..we are people..who happen to have a problem, but we are

NOT our problem. I read somewhere once.... " would you call a cancer patient

cancerous... .no...we say Jane has cancer...not Jane is cancerous... it should

be the same thing for us...ie I have a disability.. .I am NOT disabled. I am

a 39 year old happily married mom of a beautiful 17 year old daughter, who

has a disability called RSD....I am not RSD. Sorry, ..I kind of lost the

topic..there. ..but that way with the wheelchair.. .they will see that you have

an illness and will not jostle you around.

The flight must be hell for you after surgery!! I am so sorry that you have

to deal with that! Does your neurosurgeon know of any short term facilities

that you can recuperate from prior to going home on the plane? Does anyone

fly out with you..If so....perhaps, you could stay at a hotel near the

hospital after they discharge you just for a few days where youwon't be so raw

from

the pain. Just some ideas....I hope you have great luck with everything,

...From what you have been through..you are entitled for a break by now!

thanks for asking for me...things are better right now...the pain is still

horrendous.. .as always...but thank God the spasms have stopped...they brought

me to my knees this time.

I see my P,M. Dr. tomorrow...and we are going to discuss the replacement of

one of my batteries..it is 8 years old...so it is time..the stim is not

working now..so I want to get it done asap, but I developed severe cellulitis in

my other leg now...RSD is so much worse now from that....aaahh! I had MRSA in

the leg again....so I had to wait until the infection and wound has cleared

up...which I think it has so...I am keeping my fingers and toes and eyes

(when not driving) crossed for good luck!!

They will replace the battery and at the same time add three more leads to

the stim for my legs....so hopefully the stimulation will hit the ankles and

feet, as no stim is hitting them now...it is actually " jumping " over the damned

ankles.

Well...I have gone on long enough now...best of luck to you and let me know

how you make out!

Love,

Kathy G.

Group Co-owner

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[Guest guest]

Hi Deb,

 

I'm so glad that you've had your scs fitted and that its working so well. They

are wonderful devices and although I've had problems with mine, I know that it

is the best chance that I have to get my life back. When it worked it was

amazing.

 

No, I don't mind. I live in the UK. On a small Island called Guernsey which is

one of a group of small Islands known as the Channel Islands. Although we are

part of the UK we are completely self governing and have our own health system.

Yes it is a bit. I did have health insurance through my work which provided

private health care. Private health care means that basically you get

preferential treatment. You get seen a lot quicker but at a cost. A bed in the

private ward of our local hospital costs about US$1,500 a night!! So when my op

in February didn't work the insurance company decided that I was costing them

too much money and withdrew cover. So now I have to wait for state funded

treatment.

 

Sounds like you guys over there are ahead of us when it comes to the use of

stimulators. When I had my permanent scs fitted the lead used was basically just

a wire which was sutured against my spine. The lead came away and in the

subsequent operation replaced it with a lead with a paddle at the end but

although they removed part of the bone to accomodate it, it was still only

sutured in place. I didn't know it was even possible to have the lead screwed in

place until I saw the new neurosurgeon in May. All the surgery that I've had has

been carried out in hospital by a neurosurgeon.

 

Re: Re: Hello

Hi, !

I am one of those softy toos...I cry at least once daily. My friends tell

me I cry as often as they change their pants!! LOL

I wish you the best of luck with the EMDR...wow! I have never heard of

that...thanks for the informaton.. .that is why I love this group...I always

learn

something new every day...just like my mom told me when I was a wee

one......your day is not complete if you do not learn something new! She was so

right!!!

I am so sorry that you are going through the hellish nightmares still. I

still have one or two every so often, but NOTHING like it was...torture! I

really hope that this helps you...and I can't imagine how it must be with having

to think of all the bad things that has happened.... hang in with

it...hopefully it will do it's job and really help you!

Man..that is awful how you have to wait...and I TOTALLY agree with you...it

is extremely grossly unfair when money is the main importance and not people

in real pain. Shame on them!!

You were not rambling..... it is a pleasure to chat with you.

I hope I can help you in any way possible...this is why we are all here....to

help each otherl

Hope you have a great night and keep your chin up!!

Gentle hugs to you and all,

Kathy G.

Group Co-owner

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[Guest guest]

Thanks Margee, everyone in this group has been so kind and so supportive. You

are all amazing.

 

Re: Re: Hello

>

> Hi, !

>

> I am one of those softy toos...I cry at least once daily. My friends

tell

> me I cry as often as they change their pants!! LOL

>

> I wish you the best of luck with the EMDR...wow! I have never heard of

> that...thanks for the informaton.. .that is why I love this

group...I always learn

> something new every day...just like my mom told me when I was a wee

> one.....your day is not complete if you do not learn something new!

She was so

> right!!!

>

> I am so sorry that you are going through the hellish nightmares

still. I

> still have one or two every so often, but NOTHING like it

was...torture! I

> really hope that this helps you...and I can't imagine how it must be

with having

> to think of all the bad things that has happened.... hang in with

> it...hopefully it will do it's job and really help you!

>

> Man..that is awful how you have to wait...and I TOTALLY agree with

you...it

> is extremely grossly unfair when money is the main importance and

not people

> in real pain. Shame on them!!

>

> You were not rambling.... it is a pleasure to chat with you.

>

> I hope I can help you in any way possible...this is why we are all

here....to

> help each otherl

>

> Hope you have a great night and keep your chin up!!

>

> Gentle hugs to you and all,

>

> Kathy G.

> Group Co-owner

>

> ************ **New MapQuest Local shows what's happening at your

destination.

> Dining, Movies, Events, News & more. Try it out

> (http://local. mapquest. com/?ncid= emlcntnew0000000 2)

>

>

[Guest guest]

Hi Sue,

 

Thank you.

 

Yeah its all abit of a horrid mess.. I get very disheartened sometimes. We don't

have a choice as to who does the op, its who the pain dr thinks is best for the

job. The thing is that I know the latest nurosurgeon, he sorted me out about 10

years ago and I feel that if he had been on my case at the start I wouldn't be

in this position now. Still hindsight is a wonderful thing!!

 

Re: Re: Hello

Hi, !

I am one of those softy toos...I cry at least once daily. My friends tell

me I cry as often as they change their pants!! LOL

I wish you the best of luck with the EMDR...wow! I have never heard of

that...thanks for the informaton.. .that is why I love this group...I always

learn

something new every day...just like my mom told me when I was a wee

one......your day is not complete if you do not learn something new! She was so

right!!!

I am so sorry that you are going through the hellish nightmares still. I

still have one or two every so often, but NOTHING like it was...torture! I

really hope that this helps you...and I can't imagine how it must be with having

to think of all the bad things that has happened.... hang in with

it...hopefully it will do it's job and really help you!

Man..that is awful how you have to wait...and I TOTALLY agree with you...it

is extremely grossly unfair when money is the main importance and not people

in real pain. Shame on them!!

You were not rambling..... it is a pleasure to chat with you.

I hope I can help you in any way possible...this is why we are all here....to

help each otherl

Hope you have a great night and keep your chin up!!

Gentle hugs to you and all,

Kathy G.

Group Co-owner

************ **New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

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[Guest guest]

Hi Kathy, yep its me again!

 

I wish it was like that. My wife left me 3 years ago

after being together for 10 years.. I'll never  forget her words to me, I

think they will haunt me for the rest of my life, " You being sick all the time

is ruining my life and I just want to have fun " . Nice! Found out 3 months later

that she had been having an affair for 2 years. This was someone who every day,

right up until the day she left, told me that she loved me! They say that

history has a way of repeating itself. I have a friend who I love very much and

all through my time in hospital last year she was there for me. She has been the

best friend I could have ever have wished for. But sadly in June it all became

too much for her and she had to get off the roller-coaster that my health issues

had become. I couldn't have got as far as I have without her and I'm finding it

very hard without her being around to talk to.

 

Sorry I'm letting the pain get the best of me. Could really do with some of

those hugs!

 

Love

 

Re: Re: Hello

Dear ...

We always hurt the ones we love, trust and adore most....I think this is due

to the fact that we trust them not to leave us...they are a safe haven for

us to shout, scream, mistreat, and be rude to...and know that in the drop of a

dime...they will be there for us...because they love us.

I know this is true for me.

don't be so hard on yourself, . this is all being human. I am working

on my anger issues...I think we all have them...we hate this pain, we hate

the fact that we can't do SO much, we hat emissing out on so much life can

offer us...so we blow up...it is okay...we just need to work at not doint it so

much and for apologizing when we do do it.

Gentle hugs to you, my firend!

kathy G.

Group Co-owner

************ **New MapQuest Local shows what's happening at your destination.

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[Guest guest]

,

I love the lidocaine patches but my insurance does not cover them and at 300

dollars a box I cant afford them. I have turned of the stim as I am in the

healing process and the itching is driving me crazy.......and with the machine

on it makes the itching out of control.....I want to scratch my skin

out..... can u exclaim Ketamine..all I know is that it is a horse

tranquilizer...

Deb

From: Stimulator [mailto:Stimulator ] On Behalf

Of Woolrich

Sent: Friday, October 17, 2008 5:37 PM

Stimulator

Subject: Re: Re: Hello

Hi Kathy,

Sorry for not getting back to you sooner but I'm going through a bit of a bad

patch. The pain in my leg and butt is really bad, I can't sleep and I don't know

where to put myself so I've spent most of my time in bed, contemplating the

meaning of life!! LOL I can't sit, can barely stand up and when I lie down I can

only rest on my left side (my generator is in my right butt cheek).

Thanks again for all the support and for the advice re travelling. I had to see

my pain dr today and we talked about my trip to the neurosurgeon. He could see

the amount of pain that I was in (and the fact that the pain in my butt is

getting worse) and guess what? When the time comes for my op he will arrange for

an aircraft to be chartered just for me to take me to the airport near the

hospital. This will mean that I will only have to put up with a flight of about

45mins and a short cab ride as opposed to the scheduled flight of about 1 1/2

hours and a cab ride of about the same time! Yay!! Won't have to go through

airport security then!

Pain dr gave me a nerve block injection today in my leg. He injects anaesthetic

directly into the nerves either side of my knee which numbs the leg for a day or

so. Hurts like hell when he does it but its great to have a bit of relief. He

has also upped my Ketamine dose to 250mg every 2 hours. He has also given me

Lidocaine patches to stick over my implant to ease the pain a little. So as you

can imagine I'm feeling a bit spaced out but a bit more comfortable so I'm

hoping that I might be able to get some sleep tonight.

Please don't apologise for talking about your Dad, he sounds like an incredible

man and you must be so proud of him.

Unfortunately I've had to miss the last 2 EMDR treatments as on top of

everything else I developed conjunctivitis in both eyes. My right eye closed up

completely and I can barely see out of my left. Good job my laptop has large

keys! I am diabetic my immune system is not very good and I get infections very

easily. I had shingles a few weeks back too, see what I mean about being

jinxed!! LOL

I'm so glad those spasms have stopped and that you are feeling a bit better. I

was thinking of you, it must be hell for you. You are so incredibly strong.

Forgive my curiosity, but why do you have 2 stimulators? The one that I have

fitted can take up to 8 leads so wouldn't it be more comfortable to have just

one implant?

Anyway I'll sign off for now, speak to you later.

Take good care of yourself.

Love

Re: Re: Hello

Hey !

In my opinion, a REAL man DOES show his emotions through tears of joy or

sorrow...happiness or frustration. .good or bad...GOOD for you, !!!

My dad always taught me that just because a person is a man...doesn' t mean

that he doesn't have emotions just like women do...my dad retired a Captain in

the Philadelphia, Pa police department. He was a police officer for 27

years...and the things that he witnessed and saw...brought him to tears...a lot

happy, but all too many sad and horrific. That is why his family is so

precious to him.....that he gets unconditional love from us and gives it right

back.

Alright...enough about my dad...sorry. ..

I was so glad to hear that the mail cheers you up...that is awesome, my

friend!

It sounds like the EMDR is helping you....that is terrific!! I hope it

continues to really help you out!!

Sorry to hear about your sleepless night....dear Lord, can I understand! I

get, if I am lucky, 1 to 1 1/2 hour of sleep per night. This really does

catch up with you and kicks you in the butt...especially when driving...so I

always make sure that the coffee pot is on during the day....it has become my

brand new friend...God bless Caffeine...LOL

It does sound promising about the neurosurgeon' s response...at least your

case is still not on his/her pending pile on his/her desk...which I am sure is

highly piled to the ceiling...LOL

It is great that they are going to replace the whole unit and reposition the

generator into your abdomen instead of your butt...I am sure that this must

be uncomfortable and a wee bit embarrassing when you are turning it on and

off via your butt...the crowds of strangers must love you...LOL

Mine are in my very low back...near my hips...they hurt so badly now. My

back is just killing me from them...but we have to take the good with the

bad...right?

It must be so frustrating for you to say the least, . I thought it was

hard for me making plans for my daughter when I am in the

hospital...especial ly when she was a wee one...but GEEZE...you really have a

time of it..it must

be a real hemorrhoid.. (nicer than saying pain in the ass..LOL) OOPS!! LOL

When you are ready to fly again....what you could do is call the airline

ahead of time and let them know that you have a disability and you have a spinal

stimulator.. and explain what that is to them...maybe asking for a supervisor

might be the best route to go. This way, you can find out what the best way

to handle the situation will be. When I flew to Jamaica for my honeymoon,

that is what I did. They were very kind to me. In addition to the stim, I

absolutely must bring my portable nebulizer with me..I have severe asthma.

Well....I didn't mention this to them,,,,and even though I had a note from my

physician on letter head paper and a note from the medical supply company

explaining what the machine was...they actually poured five of my vials

out.....I

was really upset, but wasn't too surprised... this was Novermber 12,

2001....right after 9-11-01.

Another thing that might really help is when you call, if you call ahead,

ask for a wheelchair to be waiting for you....tellign them that you have a

disability.. .(Please note that I DIDN'T SAY YOU ARE DISABLED...) What I DID say

was you have a disability. I really think that we all should stress this...we

are ourselves first..we are people..who happen to have a problem, but we are

NOT our problem. I read somewhere once.... " would you call a cancer patient

cancerous... .no...we say Jane has cancer...not Jane is cancerous... it should

be the same thing for us...ie I have a disability.. .I am NOT disabled. I am

a 39 year old happily married mom of a beautiful 17 year old daughter, who

has a disability called RSD....I am not RSD. Sorry, ..I kind of lost the

topic..there. ..but that way with the wheelchair.. .they will see that you have

an illness and will not jostle you around.

The flight must be hell for you after surgery!! I am so sorry that you have

to deal with that! Does your neurosurgeon know of any short term facilities

that you can recuperate from prior to going home on the plane? Does anyone

fly out with you..If so....perhaps, you could stay at a hotel near the

hospital after they discharge you just for a few days where youwon't be so raw

from

the pain. Just some ideas....I hope you have great luck with everything,

...From what you have been through..you are entitled for a break by now!

thanks for asking for me...things are better right now...the pain is still

horrendous.. .as always...but thank God the spasms have stopped...they brought

me to my knees this time.

I see my P,M. Dr. tomorrow...and we are going to discuss the replacement of

one of my batteries..it is 8 years old...so it is time..the stim is not

working now..so I want to get it done asap, but I developed severe cellulitis in

my other leg now...RSD is so much worse now from that....aaahh! I had MRSA in

the leg again....so I had to wait until the infection and wound has cleared

up...which I think it has so...I am keeping my fingers and toes and eyes

(when not driving) crossed for good luck!!

They will replace the battery and at the same time add three more leads to

the stim for my legs....so hopefully the stimulation will hit the ankles and

feet, as no stim is hitting them now...it is actually " jumping " over the damned

ankles.

Well...I have gone on long enough now...best of luck to you and let me know

how you make out!

Love,

Kathy G.

Group Co-owner

************ **New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local. mapquest. com/?ncid= emlcntnew0000000 2)