Re: Deb on her soapbox..topic of the week

[Guest guest]

Hi Deb,

I often wonder the exact same thing. We hear about how good this,

that and the other is. How much people would love to try it but you

hear no more. I do wonder if it is a case of money, or the fact they

are unsure it will really work as it is " new " and are scared of

making things worse, after all there is not enough long term

evidience yet, or even perhaps their Dr's dont know about it, or wont

do it.

But then I do also find that some are ( please dont any one take

offense!)seem contented with the way things are and dont want to try

and change things. Yes you get people who moan and groan, but they

often dont do anything to try and help themselves, they live on the

attention, or the " woe is me " syndrome. I am not saying everyone is

like that. But you do have cases were it is a competition to be worse

then the person next to you. As far as I am concerned we are all just

as bad, suffer just as much, no matter how much RSD a person has in

their body, someone with rsd in one limb can suffer just as much as a

person with rsd in all 4. It is how they react to it and how they let

it affect their lives makes the difference.

Perhaps they have faught and nothing has worked, and in some cases

has made things worse and finally realised all is lost, they have

tried everything and what else is there to try, only to get your

hopes up and to have them dashed again? Is it worth all the upset,

pain and fiancial differculties some of these cost?

Who knows.

But often I bet it is " better the Devil you know, then the devil you

dont "

Me- I will try anything, lets face it I am only going to get worse

anyway, so what have I got to lose? - nothing, what have I got to

gain? - everything. And yes although I have a free medical treatment

her in the uk, a lot of my treatment and meds I pay for. And yes I do

get in to the red just to do it, but hey if it works- surely you

should'nt put a price on a life/health? after all, I will pay it back

one way or another.

Sharon

>

> Hi Guys,

> I have been thinking about the ketamine IV for myself as most of

you are

> aware. I think I will be having this procedure at the end of this

month

> There is one thing though don't understand why the over 6 million

Americans

> that have RSD aren't breaking down their doctors doors, asking to

have the

> ketamine IV done to them? So far the people that have had it done,

are all still

> pain free or with substantially less pain, the longest being 21

months now. I

> think we should all be flocking to our doctors asking for them to

look into for

> us. I don't understand why all rsd'ers aren't doing this? I know

the odds are

> lower for me, since I have independently maintained pain (IMP) vs.

> sympathetically maintained pain (SMP) and have the rsd full body. I

also have been told

> this will not fix my limbic system problems or my preexisting

osteoporosis or

> back troubles. Why wouldn't this help my fibromyalgia though? Maybe

it will be

> a help for that disease too! I myself am pretty excited about the

prospects

> of this treatment.

> I know the odds aren't as good for me and the ketamine IV working

100%

> however those who were like me with their pain, experienced relief

of up to 80% in

> their pain! I will take that, wouldn't you?

> I attached my disclaimer to the end of this post, because I am not

a doctor,

> nor do I have stock in ketamine! LOL But I do feel we should all be

looking

> into the ketamine IV with our own pain doctors, or travel to were

you can get

> it done. What do you think about this? Yes, it may be financial

problem for

> most of us. I am not guaranteeing that our insurance will cover it,

but is there

> a price you can put on pain relief? I am sure our doctors could

help with the

> way they submit that to insurance couldn't they? I personally don't

care if I

> have to refinance my home, maybe I could work after I have it

done! I would

> love that! to be able to get back out into the world. As ,

founder of

> www.RSDHope.org , group puts it, " a day without pain is what we all

seek. "

> Okay I am done pushing, I just wanted you to know there is hope, I

hope. Just

> my opinion. What is your opinion?

> Here is the link to the PDF case reports of those that have had

this done.

> You will need to have acrobat reader to view them.

> American RSDHope Group or

> http://www.rsdhope.org/Showpage.asp?PAGE_ID=81 & PGCT_ID=2499

>

> Hugs and a pain free minute,

> Deborah (Deb)

> Debgena@a...

> (Deborah Genatossio)

> Founder of RSD-CRPSofAmerica

>

>

> The material presented here does not reflect the views of

professionals.

> Please remember we are not professionals. Members may discuss uses

and

> dosages for therapeutic products that have not been approved by

their own

> Doctor. A qualified health care professional should be consulted

before

> using any therapeutic product discussed on this list. All members

should

> verify all information and data with their own healthcare

professional before

> employing any therapies discussed in this group.

> (outgoing mail protected by Norton antivirus)

[Guest guest]

Deb,

I'm guessing that where its so new of a treatment, that most doctors aren't trained to do it yet, or that most hospitals aren't set up yet to be able to do this yet themselves.

The pain doctor that I just found, I am his only Patient so far that has RSD. This doctor knows what Fibro is, and knows how to treat it.....but has no other RSD patients.

So, luckily, he will know how to treat my Fibro.......but, I have a feeling that he's going to have to be taught by me on how to handle the RSD. Which, hey, if he's willing, I'll gladly teach him everything he needs to know!!! Especially now that I'm going to get a printer, and won't have to rely on you or Danette to print stuff out for me anymore! lol

Luckily, Like Sharon brought up, over in the UK, she doesn't have to pay for her medical care.....well, I'm on Iowa Medicaid, so, most stuff, I don't have to pay for 99% of mine either. But, I'm not sure about the Ketamine treatments.

Not only that, the only places here in the Midwest that would be able to actually do the treatments legally would be the Universities.....and I refuse to let another doctor from the University of Nebraska touch me unless it was the OB that delivered Petey. The others I've been to in that Place have all been quacks. Plus, being an University, you see the Students more than you actually see a doctor!

How many people actually wants to have a STUDENT doing new stuff just out to them instead of a trained DOCTOR?

NOT ME!!

but, Like I said....I'm gonna work with this new Pain Doc I have now, and if I have to train him on RSD, I gladly will!

Tonia

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

There are many folks who have neither the insurance approval or the private funds to have a go with the ketamine treatment. I'm sure most folks are doing the best they can with all that they have. Barbaraimamcoldasice wrote:

Hi Deb,I often wonder the exact same thing. We hear about how good this, that and the other is. How much people would love to try it but you hear no more. I do wonder if it is a case of money, or the fact they are unsure it will really work as it is "new" and are scared of making things worse, after all there is not enough long term evidience yet, or even perhaps their Dr's dont know about it, or wont do it.But then I do also find that some are ( please dont any one take offense!)seem contented with the way things are and dont want to try and change things. Yes you get people who moan and groan, but they often dont do anything to try and help themselves, they live on the attention, or the "woe is me" syndrome. I am not saying everyone is like that. But you do have cases were it is a competition to be worse then the person

next to you. As far as I am concerned we are all just as bad, suffer just as much, no matter how much RSD a person has in their body, someone with rsd in one limb can suffer just as much as a person with rsd in all 4. It is how they react to it and how they let it affect their lives makes the difference.Perhaps they have faught and nothing has worked, and in some cases has made things worse and finally realised all is lost, they have tried everything and what else is there to try, only to get your hopes up and to have them dashed again? Is it worth all the upset, pain and fiancial differculties some of these cost?Who knows. But often I bet it is "better the Devil you know, then the devil you dont"Me- I will try anything, lets face it I am only going to get worse anyway, so what have I got to lose? - nothing, what have I got to gain? - everything. And yes although I have a free medical treatment her in

the uk, a lot of my treatment and meds I pay for. And yes I do get in to the red just to do it, but hey if it works- surely you should'nt put a price on a life/health? after all, I will pay it back one way or another.Sharon> > Hi Guys, > I have been thinking about the ketamine IV for myself as most of you are > aware. I think I will be having this procedure at the end of this month> There is one thing though don't understand why the over 6 million Americans > that have RSD aren't breaking down their doctors doors, asking to have the > ketamine IV done to them? So far the people that have had it done, are all still > pain free or with substantially less pain, the longest being 21 months now. I > think we should all be flocking to our doctors asking for them to look into for > us. I don't

understand why all rsd'ers aren't doing this? I know the odds are > lower for me, since I have independently maintained pain (IMP) vs. > sympathetically maintained pain (SMP) and have the rsd full body. I also have been told > this will not fix my limbic system problems or my preexisting osteoporosis or > back troubles. Why wouldn't this help my fibromyalgia though? Maybe it will be > a help for that disease too! I myself am pretty excited about the prospects > of this treatment.> I know the odds aren't as good for me and the ketamine IV working 100% > however those who were like me with their pain, experienced relief of up to 80% in > their pain! I will take that, wouldn't you? > I attached my disclaimer to the end of this post, because I am not a doctor, > nor do I have stock in ketamine! LOL But I do feel we should all be looking > into the ketamine IV

with our own pain doctors, or travel to were you can get > it done. What do you think about this? Yes, it may be financial problem for > most of us. I am not guaranteeing that our insurance will cover it, but is there > a price you can put on pain relief? I am sure our doctors could help with the > way they submit that to insurance couldn't they? I personally don't care if I > have to refinance my home, maybe I could work after I have it done! I would > love that! to be able to get back out into the world. As , founder of > www.RSDHope.org , group puts it, "a day without pain is what we all seek."> Okay I am done pushing, I just wanted you to know there is hope, I hope. Just > my opinion. What is your opinion?> Here is the link to the PDF case reports of those that have had this done. > You will need to have acrobat reader to view them.>

American RSDHope Group or > http://www.rsdhope.org/Showpage.asp?PAGE_ID=81 & PGCT_ID=2499> > Hugs and a pain free minute, > Deborah (Deb)> Debgena@a... > (Deborah Genatossio) > Founder of RSD-CRPSofAmerica> > > The material presented here does not reflect the views of professionals. > Please remember we are not professionals. Members may discuss uses and > dosages for therapeutic products that have not been approved by their own > Doctor. A qualified health care professional should be consulted before > using any therapeutic product discussed on this list. All members should > verify all information and data with their own healthcare professional before > employing any therapies discussed in this group.> (outgoing mail protected by

Norton antivirus)

[Guest guest]

Barbara,

I think you are right on the money....and they want to wait for more

evidence of long term results. Dr. Harbut in Page, AZ sent me a

letter to let me know that the hospital there would no longer accept

medicare patients for the IV ketamine treatment. Something to do

with their contractual agreements. And they also won't accept

medicaid either. And both of these will not approve the treatment

and it puts folks between a rock and a hard place. I was all set to

do this treatment but am now trying something else first....less

costly and not invasive. Will tell all about it soon.

Blessings,

Betsy

> >

> > Hi Guys,

> > I have been thinking about the ketamine IV for myself as most of

> you are

> > aware. I think I will be having this procedure at the end of this

> month

> > There is one thing though don't understand why the over 6 million

> Americans

> > that have RSD aren't breaking down their doctors doors, asking to

> have the

> > ketamine IV done to them? So far the people that have had it

done,

> are all still

> > pain free or with substantially less pain, the longest being 21

> months now. I

> > think we should all be flocking to our doctors asking for them to

> look into for

> > us. I don't understand why all rsd'ers aren't doing this? I know

> the odds are

> > lower for me, since I have independently maintained pain (IMP)

vs.

> > sympathetically maintained pain (SMP) and have the rsd full body.

I

> also have been told

> > this will not fix my limbic system problems or my preexisting

> osteoporosis or

> > back troubles. Why wouldn't this help my fibromyalgia though?

Maybe

> it will be

> > a help for that disease too! I myself am pretty excited about the

> prospects

> > of this treatment.

> > I know the odds aren't as good for me and the ketamine IV working

> 100%

> > however those who were like me with their pain, experienced

relief

> of up to 80% in

> > their pain! I will take that, wouldn't you?

> > I attached my disclaimer to the end of this post, because I am

not

> a doctor,

> > nor do I have stock in ketamine! LOL But I do feel we should all

be

> looking

> > into the ketamine IV with our own pain doctors, or travel to were

> you can get

> > it done. What do you think about this? Yes, it may be financial

> problem for

> > most of us. I am not guaranteeing that our insurance will cover

it,

> but is there

> > a price you can put on pain relief? I am sure our doctors could

> help with the

> > way they submit that to insurance couldn't they? I personally

don't

> care if I

> > have to refinance my home, maybe I could work after I have it

> done! I would

> > love that! to be able to get back out into the world. As ,

> founder of

> > www.RSDHope.org , group puts it, " a day without pain is what we

all

> seek. "

> > Okay I am done pushing, I just wanted you to know there is hope,

I

> hope. Just

> > my opinion. What is your opinion?

> > Here is the link to the PDF case reports of those that have had

> this done.

> > You will need to have acrobat reader to view them.

> > American RSDHope Group or

> > http://www.rsdhope.org/Showpage.asp?PAGE_ID=81 & PGCT_ID=2499

> >

> > Hugs and a pain free minute,

> > Deborah (Deb)

> > Debgena@a...

> > (Deborah Genatossio)

> > Founder of RSD-CRPSofAmerica

> >

> >

> > The material presented here does not reflect the views of

> professionals.

> > Please remember we are not professionals. Members may discuss

uses

> and

> > dosages for therapeutic products that have not been approved by

> their own

> > Doctor. A qualified health care professional should be

consulted

> before

> > using any therapeutic product discussed on this list. All members

> should

> > verify all information and data with their own healthcare

> professional before

> > employing any therapies discussed in this group.

> > (outgoing mail protected by Norton antivirus)

>

>

>

[Guest guest]

ly the potential side effects are fairly intimidating also. Barbaragrannyb34 wrote:

Barbara,I think you are right on the money....and they want to wait for more evidence of long term results. Dr. Harbut in Page, AZ sent me a letter to let me know that the hospital there would no longer accept medicare patients for the IV ketamine treatment. Something to do with their contractual agreements. And they also won't accept medicaid either. And both of these will not approve the treatment and it puts folks between a rock and a hard place. I was all set to do this treatment but am now trying something else first....less costly and not invasive. Will tell all about it soon. Blessings,Betsy> > > > Hi Guys, > > I have been thinking about the ketamine IV for myself as most of > you are > > aware. I think I will be having this procedure at the end of this > month> > There is one thing though don't understand why the over 6 million >

Americans > > that have RSD aren't breaking down their doctors doors, asking to > have the > > ketamine IV done to them? So far the people that have had it done, > are all still > > pain free or with substantially less pain, the longest being 21 > months now. I > > think we should all be flocking to our doctors asking for them to > look into for > > us. I don't understand why all rsd'ers aren't doing this? I know > the odds are > > lower for me, since I have independently maintained pain (IMP) vs. > > sympathetically maintained pain (SMP) and have the rsd full body. I > also have been told > > this will not fix my limbic system problems or my preexisting > osteoporosis or > > back troubles. Why wouldn't this help my fibromyalgia though? Maybe > it will be > > a help for that disease too! I myself am pretty excited

about the > prospects > > of this treatment.> > I know the odds aren't as good for me and the ketamine IV working > 100% > > however those who were like me with their pain, experienced relief > of up to 80% in > > their pain! I will take that, wouldn't you? > > I attached my disclaimer to the end of this post, because I am not > a doctor, > > nor do I have stock in ketamine! LOL But I do feel we should all be > looking > > into the ketamine IV with our own pain doctors, or travel to were > you can get > > it done. What do you think about this? Yes, it may be financial > problem for > > most of us. I am not guaranteeing that our insurance will cover it, > but is there > > a price you can put on pain relief? I am sure our doctors could > help with the > > way they submit that to insurance

couldn't they? I personally don't > care if I > > have to refinance my home, maybe I could work after I have it > done! I would > > love that! to be able to get back out into the world. As , > founder of > > www.RSDHope.org , group puts it, "a day without pain is what we all > seek."> > Okay I am done pushing, I just wanted you to know there is hope, I > hope. Just > > my opinion. What is your opinion?> > Here is the link to the PDF case reports of those that have had > this done. > > You will need to have acrobat reader to view them.> > American RSDHope Group or > > http://www.rsdhope.org/Showpage.asp?PAGE_ID=81 & PGCT_ID=2499> > > > Hugs and a pain free minute, > > Deborah (Deb)> >

Debgena@a... > > (Deborah Genatossio) > > Founder of RSD-CRPSofAmerica> > > > > > The material presented here does not reflect the views of > professionals. > > Please remember we are not professionals. Members may discuss uses > and > > dosages for therapeutic products that have not been approved by > their own > > Doctor. A qualified health care professional should be consulted > before > > using any therapeutic product discussed on this list. All members > should > > verify all information and data with their own healthcare > professional before > > employing any therapies discussed in this group.> > (outgoing mail protected by Norton antivirus)> > >

[Guest guest]

Hi Deb, I totally agree with you 100%. I guarentee that if I did not have the SCS and the SCS was not controlling my pain, I would be one of the first people in line for the IV Ketamine treatment. That is how I felt about the SCS and that is much more invasive than the IV Ketamine treatment. I was in so much pain that I figured if I did not try the SCS I would never know if it helped and I could not live with that. I was a guinea pig of sorts at that time. And believe me my insurance co. was not too keen on paying for my two SCS's too. But in the end they did with a little pushing from my dr. I think if all drs got together and pushed the IV Ketamine, insurances all over would pay for it. Thank you for your insiteful message. Good luck with the treatment. Take care and have a good night. Hugs, babs Deb on her soapbox..topic of the week Hi Guys, I have been thinking about the ketamine IV for myself as most of you are aware. I think I will be having this procedure at the end of this month There is one thing though don't understand why the over 6 million Americans that have RSD aren't breaking down their doctors doors, asking to have the ketamine IV done to them? So far the people that have had it done, are all still pain free or with substantially less pain, the longest being 21 months now. I think we should all be flocking to our doctors asking for them to look into for us. I don't understand why all rsd'ers aren't doing this? I know the odds are lower for me, since I have independently maintained pain (IMP) vs. sympathetically maintained pain (SMP) and have the rsd full body. I also have been told this will not fix my limbic system problems or my preexisting osteoporosis or back troubles. Why wouldn't this help my fibromyalgia though? Maybe it will be a help for that disease too! I myself am pretty excited about the prospects of this treatment. I know the odds aren't as good for me and the ketamine IV working 100% however those who were like me with their pain, experienced relief of up to 80% in their pain! I will take that, wouldn't you? I attached my disclaimer to the end of this post, because I am not a doctor, nor do I have stock in ketamine! LOL But I do feel we should all be looking into the ketamine IV with our own pain doctors, or travel to were you can get it done. What do you think about this? Yes, it may be financial problem for most of us. I am not guaranteeing that our insurance will cover it, but is there a price you can put on pain relief? I am sure our doctors could help with the way they submit that to insurance couldn't they? I personally don't care if I have to refinance my home, maybe I could work after I have it done! I would love that! to be able to get back out into the world. As , founder of www.RSDHope.org , group puts it, "a day without pain is what we all seek." Okay I am done pushing, I just wanted you to know there is hope, I hope. Just my opinion. What is your opinion? Here is the link to the PDF case reports of those that have had this done. You will need to have acrobat reader to view them. American RSDHope Group or http://www.rsdhope.org/Showpage.asp?PAGE_ID=81 & PGCT_ID=2499 Hugs and a pain free minute, Deborah (Deb)Debgena@... (Deborah Genatossio) Founder of RSD-CRPSofAmerica The material presented here does not reflect the views of professionals. Please remember we are not professionals. Members may discuss uses and dosages for therapeutic products that have not been approved by their own Doctor. A qualified health care professional should be consulted before using any therapeutic product discussed on this list. All members should verify all information and data with their own healthcare professional before employing any therapies discussed in this group.(outgoing mail protected by Norton antivirus)

[Guest guest]

> There are many folks who have neither the insurance approval or the

private funds to have a go with the ketamine treatment.

Hi Barbara,

I know, it is hard for me too. I am also thinking about what Sharon

said yesterday, she said

" as it is " new " and are scared of making things worse, after all

there is not enough long term evidience yet "

And I am nervous also. I vacillate daily about this. Today I am

thinking like this,maybe I should wait until it has been perfected

and approved. I feel this way especially since my chances aren't as

great with having rsd full body and having independently maintained

pain.

I am so confused, but that is why we have the question of the week,

so we can bounce ideas and theories off each other.

It would

really be a nightmare if I did refinance my home or borrow the money

and it

didn't work. I would be so depressed too because it would be my last

hope. So, today I have a different mentality than when I posted this

question, today I am saying I think I will wait until I am so bad I

can't take it anymore, and or until it has been proven to be safe and

affective.

Because wouldn't it be so scary, if it didn't work after getting my

hopes up and I then on top of that I owed all

that money? Talk about depression!

Oh well.

Hugs and a pain free minute,

Deb (Deborah Genatossio)

Founder of RSD-CRPSofAmerica

Debgena@...

[Guest guest]

Hi Deb,

It may be a good thing to stop and think a little more about the

ketamine treatments. I was all set to go and they were getting the

day set up to go into the hospital a few weeks ago. A friend

convinced me to try one last thing before putting us into debt with

that treatment and of course without any guarentee. So I have been

doing treatments with a chiropractor called NeuroModulation

Technique. I went into this very skeptical to say the least. Well,

it is totally painless, some insurances MAY cover it, (mine does not)

and you of course do not have to be hospitalized. If you would like

more information about it you can go to

http:/www.neuromodulationtechnique.com. I am pleasantly surprised as

my pain has been reduce by about 50%. I still have more pain when

the pressure falls or high humiodity. Have a few more treatments to

go and then will just go back occasionally. My hubby is happy about

this turn of events and we are both waiting to see what the long term

benefits will be. Feel free to email me privately if you wish. Hope

you will have a good day.

Blessings,

Betsy

> > There are many folks who have neither the insurance approval or

the

> private funds to have a go with the ketamine treatment.

>

> Hi Barbara,

> I know, it is hard for me too. I am also thinking about what Sharon

> said yesterday, she said

> " as it is " new " and are scared of making things worse, after all

> there is not enough long term evidience yet "

>

>

> And I am nervous also. I vacillate daily about this. Today I am

> thinking like this,maybe I should wait until it has been perfected

> and approved. I feel this way especially since my chances aren't as

> great with having rsd full body and having independently maintained

> pain.

> I am so confused, but that is why we have the question of the week,

> so we can bounce ideas and theories off each other.

> It would

> really be a nightmare if I did refinance my home or borrow the

money

> and it

> didn't work. I would be so depressed too because it would be my

last

> hope. So, today I have a different mentality than when I posted

this

> question, today I am saying I think I will wait until I am so bad I

> can't take it anymore, and or until it has been proven to be safe

and

> affective.

> Because wouldn't it be so scary, if it didn't work after getting

my

> hopes up and I then on top of that I owed all

> that money? Talk about depression!

> Oh well.

>

>

> Hugs and a pain free minute,

> Deb (Deborah Genatossio)

> Founder of RSD-CRPSofAmerica

> Debgena@a...

[Guest guest]

Sounds like Ketamine infusions are like anything else--some feel comfortable with it, some don't. And are probably like me--at one time I wouldn't think of an SCS and at least a year later decided to give it a try. I am thankful that there are at least several options to try! As we all know, what works for some, doesn't for others. Nothing is a sure cure--so on any treatment, it seems like there's a gamble--we just have to decide what we can handle financially and emotionally. I wish the best for anyone who tries something new--or not so new--in hopes of having less pain!!

Love,

Re: Deb on her soapbox..topic of the week

Hi Deb,It may be a good thing to stop and think a little more about the ketamine treatments. I was all set to go and they were getting the day set up to go into the hospital a few weeks ago. A friend convinced me to try one last thing before putting us into debt with that treatment and of course without any guarentee. So I have been doing treatments with a chiropractor called NeuroModulation Technique. I went into this very skeptical to say the least. Well, it is totally painless, some insurances MAY cover it, (mine does not) and you of course do not have to be hospitalized. If you would like more information about it you can go to http:/www.neuromodulationtechnique.com. I am pleasantly surprised as my pain has been reduce by about 50%. I still have more pain when the pressure falls or high humiodity. Have a few more treatments to go and then will just go back occasionally. My hubby is happy about this turn of events and we are both waiting to see what the long term benefits will be. Feel free to email me privately if you wish. Hope you will have a good day.Blessings,Betsy> > There are many folks who have neither the insurance approval or the > private funds to have a go with the ketamine treatment. > > Hi Barbara,> I know, it is hard for me too. I am also thinking about what Sharon > said yesterday, she said> "as it is "new" and are scared of making things worse, after all > there is not enough long term evidience yet"> > > And I am nervous also. I vacillate daily about this. Today I am > thinking like this,maybe I should wait until it has been perfected > and approved. I feel this way especially since my chances aren't as > great with having rsd full body and having independently maintained > pain.> I am so confused, but that is why we have the question of the week, > so we can bounce ideas and theories off each other. > It would > really be a nightmare if I did refinance my home or borrow the money > and it > didn't work. I would be so depressed too because it would be my last > hope. So, today I have a different mentality than when I posted this > question, today I am saying I think I will wait until I am so bad I > can't take it anymore, and or until it has been proven to be safe and > affective. > Because wouldn't it be so scary, if it didn't work after getting my > hopes up and I then on top of that I owed all > that money? Talk about depression!> Oh well.> > > Hugs and a pain free minute,> Deb (Deborah Genatossio)> Founder of RSD-CRPSofAmerica> Debgena@a...

[Guest guest]

Hi ,

You are so right about the various treatment options that are out

there for us to try. The decisions are most of the time mind

boggling to say the least. I am happy for you that the SCS has made

you life a little easier. I am hopeful that I will not need to go

the IV Ketamine rt but I do know that it is on the shelf to be used

later if I feel like I need to do so. Also, so is the SCS. That is

the next option for me from the pain clinic. We will wait and see

how the NeuroModulation Technique works out first and then decide on

the other options. Hoe you are feeling well today.

Blessings,

Betsy

> > > There are many folks who have neither the insurance approval

or

> the

> > private funds to have a go with the ketamine treatment.

> >

> > Hi Barbara,

> > I know, it is hard for me too. I am also thinking about what

Sharon

> > said yesterday, she said

> > " as it is " new " and are scared of making things worse, after

all

> > there is not enough long term evidience yet "

> >

> >

> > And I am nervous also. I vacillate daily about this. Today I am

> > thinking like this,maybe I should wait until it has been

perfected

> > and approved. I feel this way especially since my chances

aren't as

> > great with having rsd full body and having independently

maintained

> > pain.

> > I am so confused, but that is why we have the question of the

week,

> > so we can bounce ideas and theories off each other.

> > It would

> > really be a nightmare if I did refinance my home or borrow the

> money

> > and it

> > didn't work. I would be so depressed too because it would be my

> last

> > hope. So, today I have a different mentality than when I posted

> this

> > question, today I am saying I think I will wait until I am so

bad I

> > can't take it anymore, and or until it has been proven to be

safe

> and

> > affective.

> > Because wouldn't it be so scary, if it didn't work after

getting

> my

> > hopes up and I then on top of that I owed all

> > that money? Talk about depression!

> > Oh well.

> >

> >

> > Hugs and a pain free minute,

> > Deb (Deborah Genatossio)

> > Founder of RSD-CRPSofAmerica

> > Debgena@a...

>

>

>

[Guest guest]

So I have been

> doing treatments with a chiropractor called NeuroModulation

> Technique. I went into this very skeptical to say the least.

Hi Betsy,

I was told by my back specialist to never let a chiropractor touch

me. I wonder if this is a more mild treatment than what he was

referring too. In any case I will ask, and I am so extremely happy

for you! A fifty percent reduction is awesome.

Hope it keeps working. Can I ask you something though, what type of

underlying problems did you have beside the rsd? Could it be that

this is targeting those problems for you?

Hugs and a pain free minute,

Deb (Deborah Genatossio)

Founder of RSD-CRPSofAmerica

Debgena@...

[Guest guest]

Hi Deb,

There is no manipulation whith this type of treatment....no bone

crunching at all. And I have not med an M.D. that ever would suggest

a patient going to a chiropractor. They simply totally disagree on

just about everthing. You asked about underlying problems.....I do

have Primary Pulmonary Hypertension which is life threatening,

firomyalgia, ostioarthritis, migraines and a few other aches and

pains. It is not the pain from the other things that has been

reduced....it is the pain of RSD. I went today and will go 2 times

next week and see how it goes. I was in the sun for about an hour

yesterday and had increased pain since but still no where at the

level it had been. The fibro has also received some help. Time will

tell. It is interesting and I was skeptical, but I am starting to be

a believer. I will keep you posted. I am hoping to get even more

releif with a few more treatments. Have a good day and I hope you

will have good success with whatever you may do.

Blessings,

Betsy

> So I have been

> > doing treatments with a chiropractor called NeuroModulation

> > Technique. I went into this very skeptical to say the least.

> Hi Betsy,

> I was told by my back specialist to never let a chiropractor touch

> me. I wonder if this is a more mild treatment than what he was

> referring too. In any case I will ask, and I am so extremely happy

> for you! A fifty percent reduction is awesome.

> Hope it keeps working. Can I ask you something though, what type of

> underlying problems did you have beside the rsd? Could it be that

> this is targeting those problems for you?

>

> Hugs and a pain free minute,

> Deb (Deborah Genatossio)

> Founder of RSD-CRPSofAmerica

> Debgena@a...