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Hello!

The only time that my hair grew faster is when I had RSD in my limbs...It

may very well be like that for others too...after the stim. but for me, it was

only when the RSD set it.....both arms, legs and even my back...got

hairier....toenails grew like mad too.

I will research this and get back to you within 48 hours, hon.

Gentle hugs to all,

Kathy G

Co-0wner

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

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Hello.

Kathy G. here again....my update post was to the member stellitano102 who

was requesting 411 about hair growth after the stim was implanted.

Sorry if this was confusing, guys.

love to you all

kathy g

co-owner

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

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-Hello,,,

Mine has always been just the oppsiste,,, my hair STOPED growing,,,

I shave my legs maybe 2 times a year.. I go swimming everyday but

still never have to shave... since i got my scs they do seem to grow

a little more,,, i can find a few hairs lol,,,im weird ,, i know

lol.... hope everyone has a great day,,, and thanks for being here

for me,,, love ya all

soft hugs

T-- In Stimulator ,

KGAVI@... wrote:

>

> Hello!

>

> The only time that my hair grew faster is when I had RSD in my

limbs...It

> may very well be like that for others too...after the stim. but

for me, it was

> only when the RSD set it.....both arms, legs and even my

back...got

> hairier....toenails grew like mad too.

>

> I will research this and get back to you within 48 hours, hon.

>

> Gentle hugs to all,

>

> Kathy G

> Co-0wner

>

>

>

>

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,

I am like you. I have not had to shave my legs or underarms in years. I do not

have the SCS but rather the pump. Also, my nails used to be very soft and

pliable, they are now very brittle and tough. I think I could put a hole in the

wall with my toenails.

Dorothy

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Dorothy, did you mean that you have the Pain Pump? If so how has it

worked for you? Do you recomemend the Pump? The reason I ask, is that

I have been thinking about have one, I never realy though about it until

my Pain Management Dr. brought it up.

>

> ,

> I am like you. I have not had to shave my legs or underarms in years.

I do not have the SCS but rather the pump. Also, my nails used to be

very soft and pliable, they are now very brittle and tough. I think I

could put a hole in the wall with my toenails.

>

> Dorothy

>

>

>

>

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Hey and Dorothy:

Hey ladies!

I am so glad to hear of the great discussions....thanks, Dorothy!

My mom says the same thing...now that she is in her 70 " s, Dorothy, her hair

is so much less...but I do agree with you that the RSD does that in advanced

stages too. Oh...and Yes, Dorothy...I could probably kill a person if I

accidentally scratched them with my nails....Oh my goodness....they are like

vampire nails.

...I hear so many wonderful things about the pain pumps....most folks

have said that it really and truly has saved their lives and they can live

almost a real " normal " life just like Dorothy talks about.

I have two stims and I had a pain pump. My pain pump, when it worked, was a

true God-send to me and I really thanked God every day for it, as it handled

all my spasms, but not the pain. Even just stopping the barbaric spasms was

more than winning much more than half the battle.....believe me! I

,unfortunately, had to have my pump removed due to it's two major malfunctions

that

really caused me grave pain. The first one was when the pump ran dry and

never alarmed....I was never late for an appt and never missed a refill. The

second time was when the pump NEVER dispensed meds...and once again the alarm

did not trigger. Both these times I had horrific withdrawal from morphine,

bubivicaine and baclofen. When I asked the Medtronic company what the hell was

going on...they lied to me and told me that they had never had these issues

with another patient before and tried to blame ME for the problems. After

speaking with some other medtronic customers...several had the same exact

problems and were told the SAME exact answers from them.

NOW PLEASE, PLEASE do not hear me saying that the pumps are horrible and you

shouldn't get one....like I said, when it worked, it was great...and most

folks do not have these issues.

I certainly do not want to confuse anyone, but I will not lie or keep this

secret for them.

I have ANS products in my body and swear by that company ,as they respond

STAT to your problems and don't blame you when their products are having

issues...they come to the doctor's office and meet you and then fix the issue.

Please keep my dad in your prayers, guys. He really is not doing well. I

am terrified to hear the news tomorrow. I, along with my exhausted mom, am

hopeful for good news, but he just looks and sounds horrible.

Thanks for all your love, support and friendship.

Gentle hugs to all,

Kathy G.

Co-owner

oh...PS...I posted some photos that I am extremely proud of...my

daughter...I am trying to download some shots of my gorgeous husband...it is

one of our

wedding shots.

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

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I have the pain pump as well as 2 spinal cord stimulators.

The pump has worked very well for me and I do recommend it for anyone who needs

it. With the pump you get continuous medication, as opposed to oral meds that

wear off in a short period of time. You also don't have to  take pain medication

on a continuous basis, not every 4 or 6 hours.(watch the clock)  You might still

get pain flares, and need break through medication, but that is not on a regular

basis. You don't have to worry about the pain medication damaging the organs. I

am getting much better pain relief with less medication with the pump. The pump

is connected to the spine so you are getting better relief with less medication.

The pump may not take away all your pain, but it should relief a great deal of

it.  If you have any questions or need more information, I am here for you.

 

Sue C

Moderator

 

 

 

 

 

 

 

 

 

 

 

 

 

 

From: Bad Boy <candelariaorlando@...>

Subject: Re: question

Stimulator

Date: Thursday, August 28, 2008, 3:45 PM

Dorothy, did you mean that you have the Pain Pump? If so how has it

worked for you? Do you recomemend the Pump? The reason I ask, is that

I have been thinking about have one, I never realy though about it until

my Pain Management Dr. brought it up.

>

> ,

> I am like you. I have not had to shave my legs or underarms in years.

I do not have the SCS but rather the pump. Also, my nails used to be

very soft and pliable, they are now very brittle and tough. I think I

could put a hole in the wall with my toenails.

>

> Dorothy

>

>

>

>

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HI, Dorothy!

I am glad that your pump works so well for you...it is nice to hear when

something works so well for someone to take their pain away so much!

I was told that the alarm would be quite loud...not so low as you are

stating. I had several folks tell me it was so loud it was embarrassing and

they

couldn't understand why mine didn't do the same.

Not that it really matters anyway, since I went through such barbaric

withdrawal both times, I no longer trusted the pump or the company that

provided it

due to their lies. I knew that there was the choice to see if it could be

fixed, but like I said, when you go through horrible withdrawal twice for such

different reasons, you no longer trust the product.

When I asked the company what was wrong with it, since I requested at length

a full investigation , I was told that it got " misplaced " and they were not

able to work on it. How convenient, I thought.

As I said though in my last post, some people swear by their pump and it has

changed their lives for the better, so I am not trying to sway people from

looking into it or getting one, but since I had such a horrible experience and

was lied to so much about the pump and what had happened to it, in good

consciencse I can't keep that a secret, you know?

I hope you are doing well today.

Please continue to keep my dad in your thoughts and prayers, as he is not

doing well at all.

I thank all of you for your kindness and friendship.

I hope everyone has a great day.

Gentle hugs to all,

Kathy G.

Co-owner

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

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Kathy,

When my pump alarmed the only way I could hear it was if I was listening with a

stethoscope in a totally quiet room. It was not something that could be easily

heard.

At one time, I also had my pump quit working and it did not alarm because it

wasn't the battery that had gone dead. In my case, the fly-wheel was not

working. The doctor replaced my pump and everything was fine.

I guess I just get too much relief from the pump to really even consider having

it removed.

Dorothy

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Kathy,

When I mentioned to my nurse that the alarm was so quiet she told me that it

wasn't at all uncommon for it to be that quiet. She is the one that suggested

that I keep a stethoscope around when it was getting close to my battery runnint

out.

A good friend of mine, who also has a pump was also unable to hear her pump

years ago when her first pump died. However, she has lost a ton of weight since

that time and said that she was able to hear loud and clear when her second

battery died.

I hope and pray that your father is doing better this evening.

Dorothy

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You will have to be careful after surgery. Everyone recups differently, but

surgery is surgery. You are correct, you won't be able to bend, lift, or

stretch. There is a considerable amount of pain. After surgery, the worst part

was trying to sleep. I couldn't find a position to sleep, or a place to sleep. I

went from the bed, to the recliner to the couch. and then I would start all

over. I was able to shower pretty quickly with the permanent SCS. Once you are

fully recupped, and you get the pain relief you are seeking, it will all be

worth it.

Good luck with the surgery and I know everything will go well. Please keep us

posted on how you are doing. If you have any questions, I am here for you

 

Sue C

Moderator

 

 

From: <dclaar2@...>

Subject: question

Stimulator

Date: Monday, September 1, 2008, 7:48 PM

I had posted on Saturday to let everyone know that I will have my

permanent SCS surgery on Thursday. Can you give me a heads up on what I

need to do while recuperating to make this surgery a success and

hopefully not move any of the leads out of place. I've been told no

bending,twisting or lifting. It sounds like basically I won't be able

to do much, did you find that during your recovery? Do you remember how

long before you were able to take a shower. I am very concerned about

not being able to wash my hair,lol! Guess I should be worried about

other things but getting my hair all nappy from not being able to wash

it makes me feel yucky,for a better word. I think Dr's always

minimize how recovery is going to be and it makes me feel very

discouraged when I'm not improving like I think I should be. I think if

they're very upfront then you are ready for it and know what to expect.

I know several of you have said that the pain after surgery was pretty

bad, is that what most of you found. I'm just going to make sure that I

have ample pain meds to take care of that pain. Hope you're all having

a restful Labor Day. Actually I have been right out straight today

because I have a list a mile long of things I need to accomplish before

surgery day. from NH

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hey lisa!

you want to talk about weird...my right leg....lots of hair....rsd not

really horrible there...

left leg...no shaving needed too much..

I didn't explain myself right before....where the rsd is just a wee

bit...still need to shave....more hair than " normal " ...but in left leg....smooth

as a

baby's bottom.

hope you are okay.

love ya

kathy

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

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,

I wish you much luck on your surgery! I am still waiting for the

permanent to get approved, so I cant give you much info other than

support!

Keep us posted, I would love to hear how it goes!

>

> I had posted on Saturday to let everyone know that I will have my

> permanent SCS surgery on Thursday. Can you give me a heads up on

what I

> need to do while recuperating to make this surgery a success and

> hopefully not move any of the leads out of place. I've been told no

> bending,twisting or lifting. It sounds like basically I won't be

able

> to do much, did you find that during your recovery? Do you remember

how

> long before you were able to take a shower. I am very concerned

about

> not being able to wash my hair,lol! Guess I should be worried

about

> other things but getting my hair all nappy from not being able to

wash

> it makes me feel yucky,for a better word. I think Dr's always

> minimize how recovery is going to be and it makes me feel very

> discouraged when I'm not improving like I think I should be. I

think if

> they're very upfront then you are ready for it and know what to

expect.

> I know several of you have said that the pain after surgery was

pretty

> bad, is that what most of you found. I'm just going to make sure

that I

> have ample pain meds to take care of that pain. Hope you're all

having

> a restful Labor Day. Actually I have been right out straight today

> because I have a list a mile long of things I need to accomplish

before

> surgery day. from NH

>

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-You should be able to shower right after stimlator put in you will

have stiches at site they put it in. Stimulator shouldnt move no

bending no sudden falling backwards you should be find washing your

hair just keep stiches area away from water. mike owner-- In

Stimulator , " " <dclaar2@...> wrote:

>

> I had posted on Saturday to let everyone know that I will have my

> permanent SCS surgery on Thursday. Can you give me a heads up on

what I

> need to do while recuperating to make this surgery a success and

> hopefully not move any of the leads out of place. I've been told no

> bending,twisting or lifting. It sounds like basically I won't be

able

> to do much, did you find that during your recovery? Do you remember

how

> long before you were able to take a shower. I am very concerned

about

> not being able to wash my hair,lol! Guess I should be worried

about

> other things but getting my hair all nappy from not being able to

wash

> it makes me feel yucky,for a better word. I think Dr's always

> minimize how recovery is going to be and it makes me feel very

> discouraged when I'm not improving like I think I should be. I

think if

> they're very upfront then you are ready for it and know what to

expect.

> I know several of you have said that the pain after surgery was

pretty

> bad, is that what most of you found. I'm just going to make sure

that I

> have ample pain meds to take care of that pain. Hope you're all

having

> a restful Labor Day. Actually I have been right out straight today

> because I have a list a mile long of things I need to accomplish

before

> surgery day. from NH

>

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Hi

My name is ,, I just recieved my scs this past Feb,the surgery

was a breeze, no problems at all,, they turned it on right away,,

witch I thought was awesome,,, As far as a shower goes,, I think I

had to wait like 3 days. They didnt use stitches on me, justthe

steri strips. .. recovery was kinda of rough for the first couple

weeks,, You cannot bend or pick up stuff, My husband put my pop on

the top shelf of frig, so I wouldnt have to bend, plus he always

kept exra roll of toilet paper where i didnt have to get it out

myself... The recovery period was 9 weeks for me,,, 9 weeks of

doing pretty much nothing but resting. Best of luck Thursday. If you

need anyone to talk to I will be here .. you can e-mail me if you

would like... Take care and Good LUck

soft hugs

T

\, " " <dclaar2@> wrote:

> >

> > I had posted on Saturday to let everyone know that I will have

my

> > permanent SCS surgery on Thursday. Can you give me a heads up on

> what I

> > need to do while recuperating to make this surgery a success and

> > hopefully not move any of the leads out of place. I've been told

no

> > bending,twisting or lifting. It sounds like basically I won't be

> able

> > to do much, did you find that during your recovery? Do you

remember

> how

> > long before you were able to take a shower. I am very concerned

> about

> > not being able to wash my hair,lol! Guess I should be worried

> about

> > other things but getting my hair all nappy from not being able

to

> wash

> > it makes me feel yucky,for a better word. I think Dr's always

> > minimize how recovery is going to be and it makes me feel very

> > discouraged when I'm not improving like I think I should be. I

> think if

> > they're very upfront then you are ready for it and know what to

> expect.

> > I know several of you have said that the pain after surgery was

> pretty

> > bad, is that what most of you found. I'm just going to make sure

> that I

> > have ample pain meds to take care of that pain. Hope you're all

> having

> > a restful Labor Day. Actually I have been right out straight

today

> > because I have a list a mile long of things I need to accomplish

> before

> > surgery day. from NH

> >

>

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Hello !!

I am so happy for you that you are approved for the stim and most of all

that the trial worked for you as you had a positive outcome from the trial one.

I guess I should introduce myself to you, as I have been offline due to

family emergencies..

I am Kathy G. I am the co-owner of this incredible and awesome group. Mike

is the owner and founder. He is a very kind and loving man.

I have two stims. I had my first one about 15 years ago. This one was like

a miracle for me. I had RSD in my wrists, hands and arms, and it really

made a difference...it was amazing!! I woke up in the recovery room a new

person...no longer in pain...but I finally had pain control!

I have had RSD...now for 25 years. I have it through out my body. It had

been under somewhat control..where the pain was manageable, but then it got

much worse in my left leg eight years ago, and the pain became intolerable

again.

I had a second stim placed which only has helped my leg about 10-15%...but

any relief is better than none, right. I was foolish enough as to not have a

trial done for the second stim. Since my first one was so successful, the

Neuro-surgeon(not the same one as the first one) told me that it was up to me,

but he didn't see the need for it. For the longest time I wished that I did

do the trial since i never would of done the implant if I saw how much the

trial one worked...since any percentage of pain relief is better than none,

and now they are going to add some leads to the existing stim....but do the

trial first..who knows, maybe this one will make the difference, right!?!?

I am so glad that you are with us here...we are a bunch of fun, supportive ,

folks who really have learned lots from each other.

Let me address your questions now, . First about the shower...I

really do not remember how long it was that I couldn't shower...but let me give

you some ideas if the time period is too long for you..I know these since..I

was sent home with a Caudal epidural catheter in my back. This was used for

pain relief for my left leg, ankle and foot. I had to keep it dry....which

meant ABOLUTELY no showers....I had the catheter in for 4 1/2 months....so I

had to wash by the sink....yes, It was DISGUSTING, but the pain was reduced by

about 90% from this catheter...so it was worth it.

Now...for the ideas....you can either go to a salon and have them wash your

hair, and style it for you...if this is too costly to do too often, as it was

for me,

there is a product that you can purchase...there are many different

manufacturers for these..but the one that I used was from ConvaTec....it is

body

wash and Shampoo. If using as the Shampoo, no wetting of the hair is needed or

rinsing the product out of your hair is needed either. Just be careful as to

not use too much, or it will really dry out your scalp and hair.

I used the ConvaTec every other day and my wonderful hubbie washed my hair

by the kitchen sink every other day with the hose that is attached for dishes.

He helped me with personal washing also, as it hurt to bend or stand for

too long. I am extremely lucky as my husband is a kind and very loving man.

On either Friday or Saturday I went to the salon. I talked to the owner

and told her my situation, and she gave me a reduced price since I needed to

come in so often.

Regarding the post-op pain, , I think that everyone has a different

pain tolerance level...you know?

The first stim surgery was painful, but nothing at all like my second one.

I think this was due to the scar tissue that had formed and the fact that I

gained a considerable amount of weight since the first one.

Your plan to make sure that you have enough pain meds to go home with is a

great plan. It would be a good idea to sit down with your pain management

team or the neuro team ...whomever is giving you the post op meds and tell

them your concerns.

As for the recuperation and the leads " scarring " into place....what you have

heard is pretty much on target, . You will need to chill or just rest

for those weeks that you are told to...it is vital to the stim working and

for it to stay in place so that it will continue to work properly.

I wish you all the best and hope that you get full pain relief from your

stim.

Have a great week.

Gentle hugs to all.

please keep my dad and my friend and her family in your thoughts and prayers.

love

kathy g

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

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It is to be expected that anybody who has a low metabolism that when they take thyroid hormone replacement, gradually their pulse rate will start to become faster and that they feel their heart beat some of the time. Your thyroxine is probably starting to work again .

luv - Sheila

HiIs it usual that as one is increasing up in dose on Thyroxine to notice a fast pulse at times but not all the time and being aware of ones heart beat but again not all the time?I would expect that if someone had suddenly gone hyper that these symptoms would be all the time? Is it just a sign of the body adjusting and nothing to get worried about? I seem to remember similar symptoms when I was increasing before. I find it all confusing sometimes!

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.6.21/1672 - Release Date: 15/09/2008 09:21

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As I expected Sheila but I do worry and am thinking I best off waiting for that to settle before increasing again but will check with Dr P on wed, I am trying to decide when I should go for a blood test as I feel this will show me what going on a bit better and I can compare to with my last test--- On Mon, 15/9/08, sheilaturner <sheilaturner@...>

It is to be expected that anybody who has a low metabolism that when they take thyroid hormone replacement, gradually their pulse rate will start to become faster and that they feel their heart beat some of the time. Your thyroxine is probably starting to work again .

luv - Sheila

HiIs it usual that as one is increasing up in dose on Thyroxine to notice a fast pulse at times but not all the time and being aware of ones heart beat but again not all the time?I would expect that if someone had suddenly gone hyper that these symptoms would be all the time? Is it just a sign of the body adjusting and nothing to get worried about? I seem to remember similar symptoms when I was increasing before. I find it all confusing sometimes!

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Hi

If the increase is slightly faster than the heart muscle can adjust to

the new dose, the nerve receptors attached to the muscle don't change

fast enough to cope with the new hormone levels.

So, they (muscles) respond as though they were reacting to the old

hormone level. With hiccups. And that can be literally when adjusting

the other way ~ ie thyroid hormone output is going down.

best wishes

Bob

> Hi

> Is it usual that as one is increasing up in dose on Thyroxine to

notice

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Sue, my name is Dawn I have been off line due to evacuation of Ike now home with

power thank God! I have not been on the group site yet, but on e-mail so, I do

have to ask please how long have you had the pump? You say you still have

break-through apin ; how compared to with only oral, patch and scs combo? thank

you for any info, I appreciate everyone here for any info available.

Have the best day you can

Dawn

From: Bad Boy <candelariaorlando>

Subject: Re: question

Stimulator@gro ups.com

Date: Thursday, August 28, 2008, 3:45 PM

Dorothy, did you mean that you have the Pain Pump? If so how has it

worked for you? Do you recomemend the Pump? The reason I ask, is that

I have been thinking about have one, I never realy though about it until

my Pain Management Dr. brought it up.

>

> ,

> I am like you. I have not had to shave my legs or underarms in years.

I do not have the SCS but rather the pump. Also, my nails used to be

very soft and pliable, they are now very brittle and tough. I think I

could put a hole in the wall with my toenails.

>

> Dorothy

>

>

>

>

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Dawn

 

I am glad you are safe from Ike.

I had my pain pump implanted on Jan 2006. My pain was relieved tremendously

after the pump was implanted. I received much better pain relief without any of

the side effects that you get with the oral medications. You don't get that

cloudy, foggy feeling. You don't have to take meds every 4 or 6 hours. I don't

have to take any other prescription pain meds.  When I found I needed to have

the pump increased, the dr increased the pump ( he increased the amount of

medication I receive through the pump).

My pain level started to increase, as well as getting pain in new areas. I also

started to develop new symptoms. I just found out I have hypopituitarism and

thyroid problems. This accounts for my increased pain, as well as other

problems.  I started treatment today and can only hope for the best. The point

is, my increased pain was due to something other than my RSD and other pain

problems.   

I definitely recommend that you go for the trial for the pump, this way you will

know if the pump will help you. I hope you can get the pain relief you are

seeking.

If you have any other questions, or need any other information, please contact

me.

 

Sue C

Moderator

From: Bad Boy <candelariaorlando>

Subject: Re: question

Stimulator@gro ups.com

Date: Thursday, August 28, 2008, 3:45 PM

Dorothy, did you mean that you have the Pain Pump? If so how has it

worked for you? Do you recomemend the Pump? The reason I ask, is that

I have been thinking about have one, I never realy though about it until

my Pain Management Dr. brought it up.

>

> ,

> I am like you. I have not had to shave my legs or underarms in years.

I do not have the SCS but rather the pump. Also, my nails used to be

very soft and pliable, they are now very brittle and tough. I think I

could put a hole in the wall with my toenails.

>

> Dorothy

>

>

>

>

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can you use the pain pump for severe migraine headaches? i have a stimulator but

still have alot of headaches.

kim

From: Bad Boy <candelariaorlando>

Subject: Re: question

Stimulator@gro ups.com

Date: Thursday, August 28, 2008, 3:45 PM

Dorothy, did you mean that you have the Pain Pump? If so how has it

worked for you? Do you recomemend the Pump? The reason I ask, is that

I have been thinking about have one, I never realy though about it until

my Pain Management Dr. brought it up.

>

> ,

> I am like you. I have not had to shave my legs or underarms in years.

I do not have the SCS but rather the pump. Also, my nails used to be

very soft and pliable, they are now very brittle and tough. I think I

could put a hole in the wall with my toenails.

>

> Dorothy

>

>

>

>

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Kim

 

The pump doesn't work for  everyone. I would certainly  ask your doctor if he or

she thinks it could help your headaches. I would discuss the possibility with

your doctor and let him/her know that you are interested in it. Just like the

stimulator, you go for a trial first, to see if the pump is going to help. Have

you tried Topamax? That helped me with my headaches. I hope you find relief from

the pain you are suffering 

If you have any more questions or need any more information, please contact me.

 

Sue C

Moderator

From: Bad Boy <candelariaorlando>

Subject: Re: question

Stimulator@gro ups.com

Date: Thursday, August 28, 2008, 3:45 PM

Dorothy, did you mean that you have the Pain Pump? If so how has it

worked for you? Do you recomemend the Pump? The reason I ask, is that

I have been thinking about have one, I never realy though about it until

my Pain Management Dr. brought it up.

>

> ,

> I am like you. I have not had to shave my legs or underarms in years.

I do not have the SCS but rather the pump. Also, my nails used to be

very soft and pliable, they are now very brittle and tough. I think I

could put a hole in the wall with my toenails.

>

> Dorothy

>

>

>

>

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