Update

[Guest guest]

Thanks Kathy this group has helped me keep my self together when I had days that

I thought that I could not do this! There is just so much frustration and

aggravation concerning medical care that should not be there! Chronic pain and

health conditions are bad enough in themselves but we should not have to put up

with the ineptitude of pitiful medical providers like we do!

In a way I do feel mislead but I am not really suprised. That is one reason I

ask so many questions of so many different people in a situation like this and

do a lot of research on my own. I find that the more I know the better I am able

to have a mental grasp on what the situation really is.

Don't get me wrong. I am thankful for the relief that the SCS has provided me.

The sciatica problem I had was awful and that issue is much better. What gets me

is that the PM is trying to act like that is the magic bullet that will cure

everything when we both know I have a progressive disease that will need to be

monitored in the future.

As far as the medication goes, I am still very undecided as to whether I will

ever use the mail order pharmacy again. On one hand I feel that now that they

have my prescriptions on file they surely can get them right the next time. One

of the ways to get them refilled is to let the drs office fax the order in. I

may do this and see if that works better the next time around. That way the dr

will know that I had nothing to do with it if there are any issues with getting

the meds.

Last night my darn knee started acting up. I have arthritis in it from get this

I was struck by a car when I was 14. I was walking across a cross walk and an 85

year old man who was nearly blind was driving a new car and should not have

been. Anyway I had a red shirt on. Luckily for me He told the cop that he saw

the red shirt and thought it was the red light so he " stopped " He then realized

he knocked me down.

I have had issues on and off with the knee ever since. LOL oh me

Kim

Re: Update

HI, Kim!

I am sorry that you had to endure the rudenss and unprofessionalism of yet

another uncaring, heartless and moranic doctor. It really gets me so angry

since there are so many loving and wonderful docs out there....and

unfortunately just as many idiots who have a diploma....who actually had the

nerve to

recite the medical oath " to first do no harm " ..what a damned joke to some of

them!

you really must feel lied to. I am sorry for that...God knows that we all

have enough going with the physical pain we must endure day to day....we sure

do not need nor desire to have our " healers " be verbally and emotionally

abusive to us!!!!

hang in, Kim. When I read your answers to folks posts, or read you heart

-warming and touching letters to those of us having a bad day...it really

makes

me happy and smile...you are a real sweetheart. You certainly deserve

BETTER than this, Kim.

We are all here for eachother....no matter how we are feeling....we all try

to make the other person feel better...and you have a real knack for it, Kim.

My mom had the same problem with meds that you are having now...I will ask

her what she did to get it resolved.

OMG...You are so right about the cold.....brrrrr....It is freezing...which

is the worst for us right now...isnt't it?!?!?! Try to stay toasty warm and

comfy cozy!

Gentle hugs to you and all

kathy G.

Group Co-Owner

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

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[Guest guest]

Isabella, this is great news! I know you'll be happy to have the J-tube

gone. I can only imagine what a relief that will be.

I hope you'll enjoy your holiday later and keep these good messages.

Hugs,

Maggie

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

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[Guest guest]

Isabella,

I am SO SO SO happy for you that things are still going well. I know that you

still play the " what if " game in your head (as we all do - if not regarding the

achalasia and whatever surgeries or procedures we have had, it's about something

else in life), but you are doing well right now and I couldn't be happier for

you!

Congrats and keep us posted!

You will feel like a totally new person once that tube comes out - you will have

a whole new sense of being and feel free to really start returning to normal.

I wish I could give you a big hug.

Love,

in NY

---- Isabella Arnold <arnoldisabella@...> wrote:

> Hi all,

>

> Just a small update on my case, to let you know that I am still doing

marvellous! After the procedure where they cut my scar tissue, I am able to eat

anything I want again! Sure only small portions and accompanied with occasional

dumping since my body is just starting to adjust to the new way of handling

foods, but I am doing more than fine!

>

> I returned back to work completely and even worked 8 overtime hours since the

procedure!

>

> Next week, Wednesday, I am going to see the doc that cut the tissue away

again. He is probably going to remove my J-tube!!! Finally!!! We are going away

for a few days as of Feb. 23rd and I am able to go without my tube, I am

thrilled, together with Romeo and of course the boys. The boys cannot wait for

the tube to get out, I will be able to do whatever I want again, have real swims

in the pool etc.

>

> I haven't been able to write the replies to several posts here on the board as

I wished to (I just had to reply to 's though...). This since I am

really really trying to keep up with my normal life now, which is hard when

you've been ill for so very long. I still need my rest and eating so often a day

takes a lot of time and energy as well, together with the household, family and

work it leaves me little time to write often. This of course doesn't mean that I

haven't got you all in my thoughts and that my fingers aren't itching to

reply...

>

> Hang in there everyone, it pays off!

>

> Lots of love to you all,

> Isabella

>

>

>

>

>

[Guest guest]

Isabella wrote:

> I am still doing marvellous!

More messages like that one, please!

;-)

notan

[Guest guest]

Thats great news Isabella, i knew you would come through it all but it

is hard sometime when you keep getting set backs.

Enjoy your break too, it will do you all good. I am off for the

weekend too over Valentines day with my fiancee, got to look after you

ladies havent we.

Take care,

Andy

On 1/28/09, Isabella Arnold <arnoldisabella@...> wrote:

> Hi all,

>

> Just a small update on my case, to let you know that I am still doing

> marvellous! After the procedure where they cut my scar tissue, I am able to

> eat anything I want again! Sure only small portions and accompanied with

> occasional dumping since my body is just starting to adjust to the new way

> of handling foods, but I am doing more than fine!

>

> I returned back to work completely and even worked 8 overtime hours since

> the procedure!

>

> Next week, Wednesday, I am going to see the doc that cut the tissue away

> again. He is probably going to remove my J-tube!!! Finally!!! We are going

> away for a few days as of Feb. 23rd and I am able to go without my tube, I

> am thrilled, together with Romeo and of course the boys. The boys cannot

> wait for the tube to get out, I will be able to do whatever I want again,

> have real swims in the pool etc.

>

> I haven't been able to write the replies to several posts here on the board

> as I wished to (I just had to reply to 's though...). This since I

> am really really trying to keep up with my normal life now, which is hard

> when you've been ill for so very long. I still need my rest and eating so

> often a day takes a lot of time and energy as well, together with the

> household, family and work it leaves me little time to write often. This of

> course doesn't mean that I haven't got you all in my thoughts and that my

> fingers aren't itching to reply...

>

> Hang in there everyone, it pays off!

>

> Lots of love to you all,

> Isabella

>

>

>

>

>

[Guest guest]

Dear Isabella,

 

At last you are getting to the stage that you deserve to be. You have been

through such a lot and I hope very much that this is the start of a new era for

you.

 

Best of Luck, from Ann XXXX

From: Isabella Arnold <arnoldisabella@...>

Subject: Update

" Achalasia " <achalasia >

Date: Wednesday, 28 January, 2009, 8:35 PM

Hi all,

Just a small update on my case, to let you know that I am still doing

marvellous! After the procedure where they cut my scar tissue, I am able to eat

anything I want again! Sure only small portions and accompanied with occasional

dumping since my body is just starting to adjust to the new way of handling

foods, but I am doing more than fine!

I returned back to work completely and even worked 8 overtime hours since the

procedure!

Next week, Wednesday, I am going to see the doc that cut the tissue away again.

He is probably going to remove my J-tube!!! Finally!!! We are going away for a

few days as of Feb. 23rd and I am able to go without my tube, I am thrilled,

together with Romeo and of course the boys. The boys cannot wait for the tube to

get out, I will be able to do whatever I want again, have real swims in the pool

etc.

I haven't been able to write the replies to several posts here on the board as I

wished to (I just had to reply to 's though...). This since I am really

really trying to keep up with my normal life now, which is hard when you've been

ill for so very long. I still need my rest and eating so often a day takes a lot

of time and energy as well, together with the household, family and work it

leaves me little time to write often. This of course doesn't mean that I haven't

got you all in my thoughts and that my fingers aren't itching to reply...

Hang in there everyone, it pays off!

Lots of love to you all,

Isabella

[Guest guest]

Good for you Isabella!

Regards

Tim

[Guest guest]

Hi Isabella

I was so exited about that phonecall before that I forgot to wish you well for

next Wednesday and hope all goes well with you. While the J-Tube has its uses it

is nice not to have to use one isn't it and one day I too will get rid of mine.

Good Luck.

________________________________

From: " tracylb@... " <tracylb@...>

achalasia

Cc: Isabella Arnold <arnoldisabella@...>

Sent: Thursday, January 29, 2009 2:54:20 AM

Subject: Re: Update

Isabella,

I am SO SO SO happy for you that things are still going well. I know that you

still play the " what if " game in your head (as we all do - if not regarding the

achalasia and whatever surgeries or procedures we have had, it's about something

else in life), but you are doing well right now and I couldn't be happier for

you!

Congrats and keep us posted!

You will feel like a totally new person once that tube comes out - you will have

a whole new sense of being and feel free to really start returning to normal.

I wish I could give you a big hug.

Love,

in NY

---- Isabella Arnold <arnoldisabella> wrote:

> Hi all,

>

> Just a small update on my case, to let you know that I am still doing

marvellous! After the procedure where they cut my scar tissue, I am able to eat

anything I want again! Sure only small portions and accompanied with occasional

dumping since my body is just starting to adjust to the new way of handling

foods, but I am doing more than fine!

>

> I returned back to work completely and even worked 8 overtime hours since the

procedure!

>

> Next week, Wednesday, I am going to see the doc that cut the tissue away

again. He is probably going to remove my J-tube!!! Finally!!! We are going away

for a few days as of Feb. 23rd and I am able to go without my tube, I am

thrilled, together with Romeo and of course the boys. The boys cannot wait for

the tube to get out, I will be able to do whatever I want again, have real swims

in the pool etc.

>

> I haven't been able to write the replies to several posts here on the board as

I wished to (I just had to reply to 's though...). This since I am

really really trying to keep up with my normal life now, which is hard when

you've been ill for so very long. I still need my rest and eating so often a day

takes a lot of time and energy as well, together with the household, family and

work it leaves me little time to write often. This of course doesn't mean that I

haven't got you all in my thoughts and that my fingers aren't itching to

reply...

>

> Hang in there everyone, it pays off!

>

> Lots of love to you all,

> Isabella

>

>

>

>

>

[Guest guest]

Holly,

 Its nice to hear from you.. I'm sorry about all the head aches.. I feel for

ya..My sinuses are are to drive me nuts ,,Allergies..But It is now Spring !!!

 Wow,, I'm surprised the did an MRI with a scs.. Sure glad it went OK.. I know

Mike had one done also.. That would scare me.. But I also have metal in my brain

from a brain aneurysm years ago.. Please let us know what you find out.

 Hay it is fine to vent here .. no apologies needed.. that is what we are all

here for.. we all vent ..

 Well get rest and I hope the headaches stop...

     soft hugs

           T

   group moderator

 lisa

From: hollym262002 <hollym262002@...>

Subject: update

Stimulator

Date: Friday, March 20, 2009, 2:26 PM

Hi Everyone,

I got my MRI for my Pituitary problem however I am waiting to go over the

results with my neurosurgeon. I am not sure if my headaches are coming from that

or from when I had my stimulator surgery done last august because when I was in

the hospital for that my doctor did a ct to see if I had a csf leak because I

had complained of headaches and laying flat only brings me relief. My work is

getting harder every day but I am pushing myself with that and exercising since

doctors are telling me to do that was well. The ct didn't show a csf leak but I

know ct's aren't that great with things like that at all. I have so many things

going on I am on the committe for relay for life again this year and really want

to do it. I just don't want to be sick with nausa and the headache. I see my

doctor on april 7th for the mri results of my brian. Well I am gonna go my head

just hurts like no other sorry for venting. I hope you all are doing ok!

take care

Holly

[Guest guest]

This email hits a little close to home for me. When my neurosurgeon revised my

stim in Oct. 2006 because of lead slippage, it left me with debilitating

headaches. Relief came when I laid down but getting up was horrendous. The dr.

didn't want to help me and blew me off even after a CT showed an accumulation of

fluid around one of the leads. Many months later and headaches daily, I finally

got to another doctor who ordered a myelogram with contrast and another CT. It

showed that there was a leak but it was hidden behind the lead. This was after 2

years of suffering. I had a surgery back in Dec. to repair the leak. I'm still

having headaches but I believe the leak is fixed because the headaches are

different than before. My dr. said at my post-op visit that if I don't get

better we can do some tests to be sure. But the myelogram with contrast was what

showed me that there was a leak for sure. If you don't get any answers from your

MRI, you may want to

suggest this. I hope you get relief.

 

Dede

From: hollym262002 <hollym262002@...>

Subject: update

Stimulator

Date: Friday, March 20, 2009, 6:26 PM

Hi Everyone,

I got my MRI for my Pituitary problem however I am waiting to go over the

results with my neurosurgeon. I am not sure if my headaches are coming from that

or from when I had my stimulator surgery done last august because when I was in

the hospital for that my doctor did a ct to see if I had a csf leak because I

had complained of headaches and laying flat only brings me relief. My work is

getting harder every day but I am pushing myself with that and exercising since

doctors are telling me to do that was well. The ct didn't show a csf leak but I

know ct's aren't that great with things like that at all. I have so many things

going on I am on the committe for relay for life again this year and really want

to do it. I just don't want to be sick with nausa and the headache. I see my

doctor on april 7th for the mri results of my brian. Well I am gonna go my head

just hurts like no other sorry for venting. I hope you all are doing ok!

take care

Holly

[Guest guest]

Holly

I think you need to let your drs know of your hip problems. That's the only way

they can help you. Maybe they can get stimulation into the area to help

alleviate the pain. It might only be sore because of the surgery. The only way

to be sure is to discuss it with the dr.

We all get tired of being in pain and not feeling well. I know I do. I also have

a problem with my pituitary and thyroid. Although I'm taking meds, I still don't

feel right. I wish I felt better, but all I can do is the best I can. Hope you

feel better. Keep us posted.

Sue C

Moderator

________________________________

From: hollym262002 <hollym262002@...>

Stimulator

Sent: Monday, March 23, 2009 3:55:42 PM

Subject: update

Hi Everyone,

Sorry I haven't posted on here for a while. I have been busy at doctor

appointments it'seems for the past two weeks. My brian mri was done and will

review it with my neurosurgeon in two weeks when it's my scs follow up as well.

I know have a new problem 13 years ago when I served a mission for my church I

got a hip fracture and than came the arthritis from the trama. However my hip

just started acting up lately and alot worse than before. It worries me a little

bit cause my battery is in the left glutte which is my left him that is being

affected and I can't bare weight on it much now and it keeps me up at night. I

am tired of having pain and a pituitary disease that makes me sick. I know I

shouldn't complain it's just one of those days. I am trying to move forward in

life with everything and now this I really don't want to go back to my ortho and

tell my neuro that my hip is giving me problems.

[Guest guest]

THIS FROM CHONETTE

From: chonette@...To: JB50192@...Sent: 3/31/2009 12:56:30 A.M. Eastern Daylight TimeSubj: update

Dear ,

All the bestg with the teleconference, coud not be there, no telephone only mobile and also I am tidfe up with hospital outine.

sent a mail for a few of you I wonder if yiu coud post to the list parft of it or all as yhou think it sutable, I think the neutropenic aspect might be useful to others.

I am ok, but feel more lethartgic than I am nomaly, all counts down vbotton, no neuts, WBC only 0.3 platelets 35 only haemoglobine staill 8.8, wednesday is a week since cells tgransfusion, so farf no mucositgis, hard to kow the real reason, but I am aware it can hasve a late onset so I am trying my best to do mouth washes etc.

So far I dread the list but have not got the energy or motivation to contribute, woud very much appreciate if you do this or me to keep all informed.

regarfds

Chonette Worried about job security? Check out the 5 safest jobs in a recession.

[Guest guest]

cathy- I can't say I know of an achalasia doc in the fort myer area. I just

wanted to let you know I am extremely jealous. all the key words in your post,

retirement, fort myer,doing better. if you'll be accepting

visitors..hehehe...angela

Update

Just a quick update. Went into the hospital in November for check, and was

told I am doing much better than 3 years ago after myotomy.

We just purchased a home for retirement in Florida. I am wondering if anyone

from the board is familar with medical care for Achalasia in the Fort Myers

area. We won't move from Michigan until this house sells, but I would rather

find a doctor ahead of time. Who better to check with than those who are dealing

with the same issue?

Thank you.

Jo Blauer

[Guest guest]

Dear Jo,

 

Hello! I hope you remember me?

When you were told you were doing much better, did they mean that you were

simply eating more comfortably and maintaining a healthy weight OR did they mean

that your oeseophagus was looking better?

 

Good Luck with your future plans. I know that you have had to be a very busy

person and I feel that you deserve some relaxation.

 

Best Wishes from Ann (UK) xx

From: Jo Blauer <capmyjo@...>

Subject: Update

achalasia

Date: Thursday, 9 April, 2009, 2:41 PM

Just a quick update. Went into the hospital in November for check, and was told

I am doing much better than 3 years ago after myotomy.

We just purchased a home for retirement in Florida. I am wondering if anyone

from the board is familar with medical care for Achalasia in the Fort Myers

area. We won't move from Michigan until this house sells, but I would rather

find a doctor ahead of time. Who better to check with than those who are dealing

with the same issue?

Thank you.

Jo Blauer

[Guest guest]

Jo,

It's so great to hear from you AND to hear that you're doing so well! I

remember that before your myotomy you were taking meds for asthma. Are those

gone, now? That's great that your swallowing (and possibly breathing) are doing

better!!

How exciting that you've bought your retirement home! I hope your home

sells quickly! That can be tough in this market, but it's still possible. How

is Kendrall doing?

Take care!

in Michigan

>

> Just a quick update. Went into the hospital in November for check, and was

told I am doing much better than 3 years ago after myotomy.

>

> We just purchased a home for retirement in Florida. I am wondering if anyone

from the board is familar with medical care for Achalasia in the Fort Myers

area. We won't move from Michigan until this house sells, but I would rather

find a doctor ahead of time. Who better to check with than those who are dealing

with the same issue?

>

> Thank you.

> Jo Blauer

>

[Guest guest]

>

> My temps have dropped too, so I may be getting more hypo as someone said I

might when first starting armour, hopefully this will improve as time goes on

>

>

>

Hi :

I just last night joined this forum (or I should say, my husband did all the

work, since I am shaking so bad). This is my first post, and amazing enough your

post was one of the first I say and your symptoms in Dec. sound just like mine

right now. I was on Synthyroid for years for Hashimotos. I over the course of 20

years have developed a vast array of health problems. I have endured years of

yeast problems, all and any gyn problems, including endometriosis, ovarin cysts,

terrible PMS, infertility that resulted in no children, and a very rare disease

called vestibulitis. Vestibulitis is basically nerve damage, or neuritis of the

vaginal area that resulted after years of yeart infections, and shingles. I have

had to have two surgeries to try to destroy these nerves because the pain is

unbelievable. I have other health problems, including a recent reactivated case

of Epstein Barr and right now I am whipped but right nowI want to address your

post concerning the elevated heart rate and lowered temps.

I recently read a book titled Stop the Thyroid Madness and I actually cried! I

was so much my own story. I talked my GP into changing my Synthroid to Armour,

90 mg, and one week later, I found a GP that speacializes in Hasimotos Diease

and thyroid problems. He immediately raised my Armour to 180 mg (approx 3

grains). He also suspects as condition known as Syndrome or Reverse T-3,

one of the main symptoms being chronic low temps. He also suspects adrenal

fatique. My labs are not back yet, but my heart rate is up to 125 and my typical

low blood pressure has dropped even lower. I am also sweating profusely and not

sleeping at all. Compound the Epstein Barr with all these recent developments

and I am miserable.

I noticed your temp and heart rate also did the same when you went on Armour. I

would love any updates about how you are now, and any suggestions you may have.

I just called my GP and was pretty much " pacified " . I am done with doctors who

have passed me around and treated me with everything from IBS, Gluten

Intolerance, female hormone imbalances noe of which have helped since I believe

all my symptoms are rooted in a thryoid imbalance. The Stop the Thyroid Madness

book inspired me and also made me mad enough to " get back on me feet " and press

forward. (Speaking of " back " , I have also had two recent back sugeries that left

me with intercostial neuritis and radiculopathy of the deep nerve roots

(translated...feeling like the entire trunk of your body is on fire). The only

thing I think my doctors have diagonsed correctly is my very disabling

depression, which I also think is linked to my Hashimotos and the resulting wake

of health problems it has caused. I am bascially homebound right now, with my

back pain and the depression.

Sorry to whine so much. In one way it feels strange to pour my heart out to

someone I don't know, but at the same time it feels good to talk to someone who

might understand and be able to help.

Hope to hear from you soon.

Janet

>

>

>

>

>

>

>

>

> Hello

> I hope everyone has had a nice christmas and had time to relax and

> enjoy the holidays.

> I have increased my armour to one grain a day as from yesterday, I was

> previously on half a grain for a week. I can def notice my heart

> beating faster but its not palpitations and its not particulary

> worrying, can I assume this is nothing to worry about and its normal?

> I am to stay on one grain now for 4 weeks. I have felt quite tired over

> the last few days and am wondering if its just christmas or me going a

> bit more hypo.

> Anyway apart from that I had no adverse affects to the armour so am

> assuming I will continue to improve.

>

[Guest guest]

Hello

Janet - first, welcome to our forum where I hope you get the support you need.

Second, do you have a nick-name as we already have a couple of members called

Janet. For the moment, I will call you Janet3, so when you write can you make

sure we know you are Janet3 then we won't get you mixed up with the others.

It does sound as if you raised your Armour too quickly and too

high, and this could be the cause of your high heart rate. Have you done a 24

hour salivary adrenal profile to see where your DHEA and cortisol are at four

specific times during the day. However much thyroid hormone replacement you

take, whether synthetic or natural, your body will not be able to utilise it

and you will get symptoms of toxicity, which sounds as if you are suffering.

Also, you could have systemic candidiasis - almost certain from the problems

you have suffered, and this too must be treated in order for your Armour to

work. Go to our FILES section and complete both the Adrenal and Candida

Questionnaires you will find there and let us know how you score. You can get

tested to see if you have Candida Antibodies.

If you go to our web site www.tpa-uk.org.uk

and click on 'Hypothyroidism' and then click on 'Associated Conditions' in the

drop down Menu, you can check out all the conditions that go along with being

hypothyroid that stop your thyroid hormones from being absorbed. Read every one

of these and let us know what you think. Also, do ask your doctor to test your

blood to see if any of the following are low in the reference range: Ferritin,

B12, Vitamin D3, Magnesium, Zinc and Copper. For your rapid heart rate, try

taking 500 mgs Magnesium to see if that helps.

Sadly, doctors are

not taught about these conditions and know very little about the functioning of

the thyroid gland and what the hormones actually do. They believe that in every

case, all patients do well on synthetic thyroxine - many don't even know this

is a mainly inactive hormone which has to convert through the liver and other

thyroid receptors to the active hormone T3.

Do read everything

you can about this disease and you will find information both in the files

section of this forum and from our web site. You have already made a good start

by reading Janie's Book " Stop The Thyroid Madness " .

Any questions you

have, just shout and somebody will be along to try to give you an answer.

Luv - Sheila

I have also had two recent back sugeries that left me with intercostial

neuritis and radiculopathy of the deep nerve roots (translated...feeling like

the entire trunk of your body is on fire). The only thing I think my doctors

have diagonsed correctly is my very disabling depression, which I also think is

linked to my Hashimotos and the resulting wake of health problems it has

caused. I am bascially homebound right now, with my back pain and the

depression.

Sorry to whine so much. In one way it feels strange to pour my heart out to

someone I don't know, but at the same time it feels good to talk to someone who

might understand and be able to help.

Version:

8.0.238 / Virus Database: 270.12.6/2084 - Release Date: 04/28/09 06:15:00

[Guest guest]

congratulations rebecca, I'm really pleased that you have finally had SOME good luck but I'm sorry to hear about your arm and hope it heals quickly for you.

It sounds like you had a lovely holiday (nearly said "break" there - oops! lol) and it's a time to hold onto in the bad times too - look what we did and all the great memories you made - I hope you can make it into a scrapbook or something to look back on especially for your young ones.

I try and get loads of photos whereever and whenever I can on the basis of remembering the happy times when things get rough and should the worst come to the worst my young ones can look at the pictures, tickets, guides and other bits of stuff and say "look what we did!" and hopefully they'll remember the happy times too. And if the worst does not come -its a great way to compare how they've grown! I've taken a picture of them in their uniform on the first day of the school year against the same wall every year since my eldest started school at 4 years old - he's almost as tall as me now but I can line the pictures up and watch him growing! and his sister will be the same.

best wishes

Judith

From: rebeccamaas <rebeccamaas@...> Sent: Sunday, July 5, 2009 2:29:34 PMSubject: update

I've been mostly MIA for a while and wanted to give an update. As some of you know, we got a wheelchair van last month that is adapted so that I can drive again (after almost 4 years!). I've been enjoying being able to drive myself & my kids to various appts, do my own grocery shopping again, etc. without have to call people to see if it fits into their schedule Last week we went on a family vacation - the first one as a family, as well as the first with me in a wheelchair. It was marvelous I drove the entire time (from IL to Michigan), and didn't have too many mishaps, aside from running into something and breaking an arm on my powerchair :)The hotel that we stayed at for the first part of the vacation was very accessible, and the roll-in shower was so much easier to use than the shower at my house! I've got a few ideas for my bathroom at home The bed & breakfast that we stayed at for the remainder of the time was not

wheelchair accessible, but we made do with my manual chair and my husband manuevering me up & down the steps. We went for a dune ride, took the kids to the beach, went fishing, took a pontoon out on a lake, and more. There were a few things that I couldn't do - for example my husband took the kids on a hike up the dunes, and they all went swimming without me (I'm not supposed to swim with the suprapubic catheter), but overall, we were able to find fun things to do that were either fully or reasonably accessible to me!My MS has been doing well lately. I'm done with the novantrone (chemo) treatments for now while the progression has stabilized. I've been able to cut my meds down to just 60mg of baclofen per day, my antibiotic (for the recurring UTIs), and an occasional Norco for pain. I've noticed significantly more neck and shoulder pain since I've been driving! Does anyone have any tips for that?? As soon as I felt it, I remembered how I

would get it frequently when I used to drive before my revision. The pain and soreness around my pelvic bolts comes and goes a bit too. I see my surgeon at the end of the month for my 2-year post-op check up. It's hard to believe that it's been that long already!I hope that everyone has been doing well and that you're enjoying your summer!

[Guest guest]

Welcome back . Thank you for sharing your wonderful news! I'm so glad your

surgery was so successful. Remember, the stim is not a cure, so the rule to

follow is moderation. You might still get some pain days, but it shouldn't be as

often or as bad as it was before.

As far as getting off the meds,  don't rush it! You need to be weaned off of

them under a drs supervision. If you come off of them too quickly you will

experience withdrawal. I know you want to get off of them as soon as possible,

but it will be a shock to your system if you stop them too quickly and you could

get quite ill. Good luck and let us know how you're doing.

Sue C

________________________________

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

Stimulator

Sent: Sunday, August 2, 2009 6:04:19 PM

Subject: Update

 

Hi Guys,

I'm back and the operation was a complete success my stimulator is working

perfectly and guess what? No more pain. I can't quite believe it. The new type

of lead that I have had fitted is incredible. The stimulation is concentrated in

my lower right leg and there are no stray stimulations even when I shift

position. Now begins the hard part, getting off all the medication. I've been on

such high doses of morphine and ketomine for so long now I've developed a

physical dependancy on the drugs and have experienced severe withdrawal symptoms

if I go for more than 12 hours without them. Does anybody have any tips or

suggestions? I want to get off them as quickly as possible.

Best wishes

[Guest guest]

For starters congrats on ur stimulator working, that's such great news!

Next thing is to take coming off ur Meds slowly on in baby steps. Taper off...do

not just starting cutting off all ur Meds to quickly or cold turkey...

Keep ur doctor on board n extremely informed. They have ways to help if needed,

plus they will be able to guide u threw coming off of them so u can experience

the least amount of withdrawal symptoms as possible. U can even talk to ur

pharmacist for their recomendations to take to ur doctor. Things like lowering

ur doses or how often u r taking them. Believe me I tried without a dr once n it

drove me to the point of almost walking into the street in front of a car...so

please get help from medical professionals. They know all about tapering meds

offs to help u.....

Again, congratulations!!!!

Sent from my iPhone

On Aug 2, 2009, at 3:04 PM, Woolrich <john.woolrich@...> wrote:

Hi Guys,

I'm back and the operation was a complete success my stimulator is working

perfectly and guess what? No more pain. I can't quite believe it. The new type

of lead that I have had fitted is incredible. The stimulation is concentrated in

my lower right leg and there are no stray stimulations even when I shift

position. Now begins the hard part, getting off all the medication. I've been on

such high doses of morphine and ketomine for so long now I've developed a

physical dependancy on the drugs and have experienced severe withdrawal symptoms

if I go for more than 12 hours without them. Does anybody have any tips or

suggestions? I want to get off them as quickly as possible.

Best wishes

[Guest guest]

Congrats on the surgery. My doctor told me that Methadone(?) I think thats it,

it helps with pain but it also helps to get people off meds without all the side

effects. You should ask your pain doctor what you can take.

Kathy

 

I can never have too many pairs of shoes!

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

Subject: Update

Stimulator

Date: Sunday, August 2, 2009, 5:04 PM

 

Hi Guys,

I'm back and the operation was a complete success my stimulator is working

perfectly and guess what? No more pain. I can't quite believe it. The new type

of lead that I have had fitted is incredible. The stimulation is concentrated in

my lower right leg and there are no stray stimulations even when I shift

position. Now begins the hard part, getting off all the medication. I've been on

such high doses of morphine and ketomine for so long now I've developed a

physical dependancy on the drugs and have experienced severe withdrawal symptoms

if I go for more than 12 hours without them. Does anybody have any tips or

suggestions? I want to get off them as quickly as possible.

Best wishes

[Guest guest]

I am so happy that your pain gone. now methodone does help come off pain meds.

but your doctor has to be in charge of you coming off. dont do it yourself ok?

mike group owner

>

>

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

> Subject: Update

> Stimulator

> Date: Sunday, August 2, 2009, 5:04 PM

>

>

>  

>

>

>

> Hi Guys,

>

> I'm back and the operation was a complete success my stimulator is working

perfectly and guess what? No more pain. I can't quite believe it. The new type

of lead that I have had fitted is incredible. The stimulation is concentrated in

my lower right leg and there are no stray stimulations even when I shift

position. Now begins the hard part, getting off all the medication. I've been on

such high doses of morphine and ketomine for so long now I've developed a

physical dependancy on the drugs and have experienced severe withdrawal symptoms

if I go for more than 12 hours without them. Does anybody have any tips or

suggestions? I want to get off them as quickly as possible.

>

> Best wishes

>

>

>

>

[Guest guest]

>

> Thank you all for your kind wishes and advice regarding coming off the pain

medication.

>

> I'm already off the Ketomine completely as that doesn't seem to have any nasty

side effects and I'm down to 15mls of Morphine a day (I was taking 40mls every

four hours!). I'm still having to take sleeping medication as I find it

difficult to sleep at night because I can't get very comfortable. The dressings

on the wounds were left on too long and when I saw the nurse to have my staples

removed she found that the tape securing the dressings had bonded to my skin so

unfortunately some of my skin came away with the dressings. Its still incredibly

sore even after a week but I'm also experiencing a lot of back pain in the area

where they operated and its not just post op soreness.

>

> Have any of you experienced similar pain and how long did it last? I was on my

feet for about 25 minutes today and could barely walk because of the pain in my

back. I hope that this is normal and that it will wear off in a while.

>

> My best wishes to you all

>

>

>

> hey john,

how many days are you post-op??? beside " incision pain " do you feel anything

else, pain in area's or spots that you didn't have prior to surgery..if not,

walk, walk, walk,walk,walk,walk, and then, walk some more. as much as you can,

BUT, if you have new or different pain, get back to your neuro. just walk if

you can!!!!

>

>

>

[Guest guest]

I'm glad to hear that you're not having a problem coming off the meds. I also

had trouble sleeping. I couldn't find a comfortable position, no matter what I

did. I didn't have any problems or complications after the implantations, just

couldn't find a comfortable spot. I would pace the floor, then go from the bed

to the couch, pace the floor some more, then sleep in the recliner, then pace

the floor, then go back to bed, then pace the floor and over and again and this 

is how my nights went for a little while until the surgical sites healed.

Every day you'll feel a little better, and little stronger. Remember not to do

too much too soon.

Sue C

________________________________

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

Stimulator

Sent: Monday, August 10, 2009 5:38:26 PM

Subject: Update

 

Thank you all for your kind wishes and advice regarding coming off the pain

medication.

I'm already off the Ketomine completely as that doesn't seem to have any nasty

side effects and I'm down to 15mls of Morphine a day (I was taking 40mls every

four hours!). I'm still having to take sleeping medication as I find it

difficult to sleep at night because I can't get very comfortable. The dressings

on the wounds were left on too long and when I saw the nurse to have my staples

removed she found that the tape securing the dressings had bonded to my skin so

unfortunately some of my skin came away with the dressings. Its still incredibly

sore even after a week but I'm also experiencing a lot of back pain in the area

where they operated and its not just post op soreness.

Have any of you experienced similar pain and how long did it last? I was on my

feet for about 25 minutes today and could barely walk because of the pain in my

back. I hope that this is normal and that it will wear off in a while.

My best wishes to you all

[Guest guest]

Hi Sue,

Morphine is a strange substance!! I was on a dose of 40ml every four hours and I

managed to get that down to one dose of 20ml at night fairly easily. But now

that I'm down to 15ml a day I'm struggling with withdrawal. I can't go for a day

without taking it so I'm having to split the dose into two and take two lots of

7.5ml. Bizarre isn't it? I think that from now on I'm going to have to reduce

the dosage in much smaller steps.

I know how you feel regarding lack of sleep! Without medication to help me sleep

getting a good nights rest is very difficult because I can't get comfortable yet

I can only rest on my left side. Still, hopefully it won't be for much longer.

________________________________

From: Corn <butterfliesrfree309@...>

Stimulator

Sent: Friday, 14 August, 2009 1:56:02

Subject: Re: Update

 

I'm glad to hear that you're not having a problem coming off the meds. I also

had trouble sleeping. I couldn't find a comfortable position, no matter what I

did. I didn't have any problems or complications after the implantations, just

couldn't find a comfortable spot. I would pace the floor, then go from the bed

to the couch, pace the floor some more, then sleep in the recliner, then pace

the floor, then go back to bed, then pace the floor and over and again and this 

is how my nights went for a little while until the surgical sites healed.

Every day you'll feel a little better, and little stronger. Remember not to do

too much too soon.

Sue C

____________ _________ _________ __

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

Stimulator@gro ups.com

Sent: Monday, August 10, 2009 5:38:26 PM

Subject: Update

 

Thank you all for your kind wishes and advice regarding coming off the pain

medication.

I'm already off the Ketomine completely as that doesn't seem to have any nasty

side effects and I'm down to 15mls of Morphine a day (I was taking 40mls every

four hours!). I'm still having to take sleeping medication as I find it

difficult to sleep at night because I can't get very comfortable. The dressings

on the wounds were left on too long and when I saw the nurse to have my staples

removed she found that the tape securing the dressings had bonded to my skin so

unfortunately some of my skin came away with the dressings. Its still incredibly

sore even after a week but I'm also experiencing a lot of back pain in the area

where they operated and its not just post op soreness.

Have any of you experienced similar pain and how long did it last? I was on my

feet for about 25 minutes today and could barely walk because of the pain in my

back. I hope that this is normal and that it will wear off in a while.

My best wishes to you all