It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 11-29-2009, 12:58 AM   #1
Newbie
(female)
 
Join Date: Nov 2009
Location: in the country
Posts: 7
Kris with RSD HB User
Unhappy Spinal Cord Stimulator

I have had RSD since April of this year. I have had many nerve blocks, all of which have failed and I have been in Physical Therapy since June. My RSD started in my lower left leg and foot. Since then it has spread into both legs and feet and is slowly moving up both legs to my hips. I don't know what to do anymore. I can barely clean the house, it takes me over a week because I can barely do one room at a time. I am no longer able to work either. I can only walk for short periods of time, can't stand very long. I use a cane now instead of crutches (I was on them until late August eary September), so that is a plus. I miss my life. I'm only 24 and am having to file for disability. My doctor has recently decided to stop all nerve blocks (don't know why he didn't do that earlier) and said he wants me to do P.T. for a couple of more months then do a Spinal Cord Stimulator. I am really scared. I've tried researching it online but Im still unsure about it. Has anyone out there had it done?? Is it dangerous?? I had a tonsillectomy that did not go well for me, so this is really freaking me out!! Someone please send me some information, especially if you have had to do this too. Thank you so much!!

Kristie

 
The following 2 users give hugs of support to: Kris with RSD
enasniclown (04-12-2011), sissy30253 (05-06-2011)
The Following 2 Users Say Thank You to Kris with RSD For This Useful Post:
kathleen collin (06-13-2012)
Sponsors Lightbulb
   
Old 11-29-2009, 11:12 AM   #2
Senior Veteran
(male)
 
Join Date: Jan 2009
Posts: 509
friendsville HB User
Re: Spinal Cord Stimulator

I don't know what RSD is,but I would try a second opinion.I pal with a lady who is in her seventies,and she too,has leg problems.She is a diabetic with kidney problems too. Hope you get the answer. Bill

 
Sponsors Lightbulb
   
Old 11-29-2009, 09:44 PM   #3
Newbie
(male)
 
Join Date: Nov 2009
Posts: 9
rsdguy09 HB User
Re: Spinal Cord Stimulator

Quote:
Originally Posted by Kris with RSD View Post
I have had RSD since April of this year. I have had many nerve blocks, all of which have failed and I have been in Physical Therapy since June. My RSD started in my lower left leg and foot. Since then it has spread into both legs and feet and is slowly moving up both legs to my hips. I don't know what to do anymore. I can barely clean the house, it takes me over a week because I can barely do one room at a time. I am no longer able to work either. I can only walk for short periods of time, can't stand very long. I use a cane now instead of crutches (I was on them until late August eary September), so that is a plus. I miss my life. I'm only 24 and am having to file for disability. My doctor has recently decided to stop all nerve blocks (don't know why he didn't do that earlier) and said he wants me to do P.T. for a couple of more months then do a Spinal Cord Stimulator. I am really scared. I've tried researching it online but Im still unsure about it. Has anyone out there had it done?? Is it dangerous?? I had a tonsillectomy that did not go well for me, so this is really freaking me out!! Someone please send me some information, especially if you have had to do this too. Thank you so much!!

Kristie
You will have a trial stim put in before you actually have the real thing put in. My advice is make sure you are 100% happy with it before having the permanent one installed. If you even begin to question its usefulness dont have one installed.

 
Old 12-01-2009, 10:38 PM   #4
Senior Member
(female)
 
Join Date: Mar 2005
Posts: 273
cardshark HB Usercardshark HB Usercardshark HB User
Exclamation Re: Spinal Cord Stimulator

Quote:
Originally Posted by Kris with RSD View Post
I have had RSD since April of this year. I have had many nerve blocks, all of which have failed and I have been in Physical Therapy since June. My RSD started in my lower left leg and foot. Since then it has spread into both legs and feet and is slowly moving up both legs to my hips. I don't know what to do anymore. I can barely clean the house, it takes me over a week because I can barely do one room at a time. I am no longer able to work either. I can only walk for short periods of time, can't stand very long. I use a cane now instead of crutches (I was on them until late August eary September), so that is a plus. I miss my life. I'm only 24 and am having to file for disability. My doctor has recently decided to stop all nerve blocks (don't know why he didn't do that earlier) and said he wants me to do P.T. for a couple of more months then do a Spinal Cord Stimulator. I am really scared. I've tried researching it online but Im still unsure about it. Has anyone out there had it done?? Is it dangerous?? I had a tonsillectomy that did not go well for me, so this is really freaking me out!! Someone please send me some information, especially if you have had to do this too. Thank you so much!!

Kristie
I am 26 and have had RSD for about a year and a half. It started in my left lower leg and spread to my other leg my back and is now my entire body. The first pain mgt. doc I went to (at the time it was just the left leg) recomended the spinal cord stimulator. I have a complicated medical history and am undable to take the meds. they would usually try prior to the stimulator. My insurance covered him as a doc. but wouldn't pay for his office to put the stimulator in so I was referred th The Cleveland Clinic and the doctor I saw there said there was no way I should even be considering the stimulator at my age. There are a lot of problems with the leads not staying where they are supposed to and you would have to have additional surgeries regularly for batteries and stuff and he said your talking a lot of scar tissue forming and any sort of surgery can actually make RSD worse. He said I should try ketamine infusions before he would even consider SCS. I have an appt. the 9th to discuss more details about the ketamine infusions. The research and info. I have found on numerous sites including this one about rsd and spinal cord stimulators makes me glad that the doctor wouldn'tdo the procedure because it sounds like it definately is not the best treatment for me to try at least. And to begin with I was all for it but the more I talked on here to people that have already tried them the more I relized I was not the best idea.
Good luck with whatever you decide!!
Hang in there
cardshark

Last edited by cardshark; 12-02-2009 at 11:47 AM.

 
Old 12-01-2009, 11:13 PM   #5
Senior Veteran
(female)
 
Join Date: Jan 2002
Posts: 2,369
AnnD HB UserAnnD HB User
Re: Spinal Cord Stimulator

I am sorry you are so young and have to deal with this. Many people on here have had the spinal cord stimulator. It works for some and not for others but anything is worth a try when you are in so much pain. My husband had 3 failed surgeries and many injections and PT and finally we asked for the stimulator....He has the Metronics stimulator and it has been a god send. This is a simple day surgery and nothing like your tonsils which by the way are always difficult for everyone. Don't hesitate to try the stimulator ...they will do a test run on you first to be sure it will work for you so it is a slow process but try not to 'freak out'. Husband has had it a over a year and still working for him. Doesn't take all the pain away but it gives him a chance to do things... he would be bedridden without it. Good luck.

 
Old 12-02-2009, 06:44 AM   #6
Junior Member
(female)
 
Join Date: Oct 2009
Location: PA, USA
Posts: 46
luvlifeagain HB User
Re: Spinal Cord Stimulator

Hi. I am having the same problem. I had the scs trial for my arm and had good results(was able to do more on less meds, my husband said he could tell a difference in my mood), but am still unsure of doing surgery. I have been doing a lot of research on Ketamine and lidocaine infusions(which don't seem any better). Now it has spread to my feet. My husband thinks i should do scs before RSD gets worse. Thanks Ann D for your post b/c i haven't heard many positives about the scs. I wish more people that had success would post it-my husband thinks maybe they are busy getting on with life. I'll let you know if i get one.

 
Old 12-02-2009, 11:29 PM   #7
Newbie
(female)
 
Join Date: Nov 2009
Location: in the country
Posts: 7
Kris with RSD HB User
Re: Spinal Cord Stimulator

Thank you to all of you. It makes me feel much better to hear words from people suffering from the same disease. I have had so many nerve blocks and exhausted all the medications. I applied for disability back in October after accepting that this is how my life was going to be, then my doctor fianlly told me about the SCS!! I have been researching it everyday. I like what I have found. I know that there are risks but it's supposed to make life so much better. It isn't a cure I know but it's a step in progress. Thank you to the person that posted about their good expierience with the SCS. I've read so much about it, but to have someone actually have progress means alot to me!! My fiance really wants me to have it. Im so unhappy, moody, gained ALOT of weight and have just lost myself in all of this. I want ME back. The lady with the arm problem, I am soooo sorry!! I only have it in my legs and feet but to loose use of the arm, that is just awful. I really hope that you get better soon!! All of you are in my prayers, even though I don't know who you are, God knows who I am talking about I am going to get the SCS. I don't want to wait a couple of months and then see. I have an appt with my doctor on the 22nd. So I will keep everyone posted through trials and everything else. And keep me posted with progress and even difficulties with the device. Any news is helpful. Thank you all sooo much!!

 
Old 04-04-2010, 03:44 AM   #8
Junior Member
(female)
 
Join Date: Apr 2010
Posts: 20
chilimaiden HB User
Re: Spinal Cord Stimulator

Kris~

The last you said in December, was that you were gonna go ahead with the stimulator. Did you? Also, if you don't mind me asking, what was the initial injury? I am wondering because you have pain in your foot and leg, and mine is from a work injury, where something fell on top of my foot.

Thanks ahead of time
Mindy

 
Old 04-23-2010, 07:40 AM   #9
Newbie
(female)
 
Join Date: Nov 2009
Location: in the country
Posts: 7
Kris with RSD HB User
Re: Spinal Cord Stimulator

Quote:
Originally Posted by chilimaiden View Post
Kris~

The last you said in December, was that you were gonna go ahead with the stimulator. Did you? Also, if you don't mind me asking, what was the initial injury? I am wondering because you have pain in your foot and leg, and mine is from a work injury, where something fell on top of my foot.

Thanks ahead of time
Mindy
No I have not had the surgery yet. I have ran into some setbacks. The disease has spread to my other leg and foot as well as my left arm. I have also started having small seizures. Im doing better and have a new appointment on the 12th of May. I'm excited. We are going to set up the trial test. I'm sooo ready. You said you got hurt at work? Yes it can set up that way. I tripped and fell. Seems as if the most minor incident can set off something catastrophic. I will keep you posted though as how the trial goes. Keep me posted on your progress also. It's comforting to talk to someone else going through the same things.

 
Old 04-26-2010, 08:17 AM   #10
Newbie
(female)
 
Join Date: Apr 2010
Location: milwakee
Posts: 9
amandalilly7 HB User
Question Re: Spinal Cord Stimulator

hi! my name is Amanda and i am 22 years old, it was about September of this past year that i was diagnosed with RSD. I have been through a series of 10 nerve blocks, all that have failed, some actually making the RSD worse. The RSD started in my left foot and it moved up my left leg to the hip after the first 3 nerve blocks. it then moved into the right foot(not as bad as the left yet) and into my left arm from the elbow to the fingers. I had to file for disability also... I guess what im trying to say is i know how you feel.. i am a mother to a beautiful little girl(shes two) and i can barely take care of her any more.. i do what i can but putting a diaper on or making lunch even giving her a bath kills me to do. My mother has had to take over much of her care. And as far as working. lol it dosen't seem possible any more. So the disability is my only hope really lol. at least finacially! as far as the SCS goes i'm discussing the trial with my doctor this week wednesday.. ive read alot of pros and cons to it and frankly it scares the hell out of me to, but im at a point where id do anything to start feeling even a little bit normal again! i can let you know what the doctor say and what my course of action will be if you'd like.. I feel for you! im in almost the same position you are! if you ever need someone to talk to or vent to im here! this disease is nasty, and it will swallow you up if you let it...
~amanda~

 
Old 04-27-2010, 07:59 AM   #11
Newbie
(female)
 
Join Date: Nov 2009
Location: in the country
Posts: 7
Kris with RSD HB User
Re: Spinal Cord Stimulator

Amanda,

sorry to hear about all that!! It is a horrible battle from day to day. I wish that I could tell you that it's okay or gets better or even like some patronizing people, "it could always be worse". I can't tell you those things, nor will I. People find it so hard to cope with what we are dealing with, and it makes it worse that they have to cope with it!! We are the ones ill. It is a nasty disease just like you said. I know it took me down for the first few months, but after my daughter (she's 4) said to me, mommy why don't you play anymore, I decided to fight back. Keep us posted on your improvements and set backs. It is very comforting to hear from someone else who goes thorugh this. Alot of people with the illness play it off like they are okay and to me its more comforting to know that someone else feels the same way I do. I am always here if you need to chat or vent. Feel free!! Also have to say you have an amazing mom!! It definitely helps when you have a great support system. My husband, bless his heart was mr. mom and housewife (lol) for a long time. Your disease sounds aggressive too!! Let me ask you, do you ever get migraines or facial tics??? Mine started after they stopped the nerve blocks (i think they may have hit or triggered something). Just curious. Well dear hang in there, my family will you keep you in prayers. Hope that trial works for you!!! Keep us posted. Hope to chat soon. Good luck this week!

 
Old 04-30-2010, 08:34 PM   #12
Newbie
(female)
 
Join Date: Apr 2010
Location: milwakee
Posts: 9
amandalilly7 HB User
Re: Spinal Cord Stimulator

kris~
For the past three weeks i have had a nasty migrane that just wont go away. Ive tried everything from tylonal, excedrine, moist heat, getting my eyes checked, everything and it just wont break. I can get it to be at a manageable level during the day but at night its a monster! i had secretly considered that it was the rsd but i didnt know how it had been linked. and wow its right after my nerve blocks had ended that the head aches started. thank you! its something that i definitly have to talk to my doctor about! This week i started the fentol patches, they seem to be working. its takin my pain from a 10 to a 9. lol its not alot but its a start! on my 10th i go for a psych evaluation for the scs to be placed. im very nervous. i know its just a trial but im freaking out. i keep going back and forth between wanting it and not wanting it!

My mom is a wonderful woman. My fiance is right there with her! i feel so bad most day because of all the things i would consider basic living tasks that i cant do any more that they have to including taking care of my children. Im pretty sure that on a weekly basis i have a melt down and ask my fiance why hes still with me and tell him i would understand if he left me. but still he stays by my side. Im just at a loss i guess. hopefully this scs will help me regain some of my independence. Id just like to feel like a normal human again i guess. Thank you so much for listening to me. lol my familys wonderful but sometimes its easier to talk to someone who knows exactly what i am going through first hand then talk to someone who only can see what im going through you know?

 
Old 06-15-2010, 10:44 PM   #13
Newbie
(male)
 
Join Date: Jun 2010
Posts: 1
OmUSMC HB User
Re: Spinal Cord Stimulator

Quote:
Originally Posted by Kris with RSD View Post
I have had RSD since April of this year. I have had many nerve blocks, all of which have failed and I have been in Physical Therapy since June. My RSD started in my lower left leg and foot. Since then it has spread into both legs and feet and is slowly moving up both legs to my hips. I don't know what to do anymore. I can barely clean the house, it takes me over a week because I can barely do one room at a time. I am no longer able to work either. I can only walk for short periods of time, can't stand very long. I use a cane now instead of crutches (I was on them until late August eary September), so that is a plus. I miss my life. I'm only 24 and am having to file for disability. My doctor has recently decided to stop all nerve blocks (don't know why he didn't do that earlier) and said he wants me to do P.T. for a couple of more months then do a Spinal Cord Stimulator. I am really scared. I've tried researching it online but Im still unsure about it. Has anyone out there had it done?? Is it dangerous?? I had a tonsillectomy that did not go well for me, so this is really freaking me out!! Someone please send me some information, especially if you have had to do this too. Thank you so much!!

Kristie

I am also thinking of doing the SCS trial sometime next July, but I still
don't know if I really wan that thing implanted in my body for the rest of my
life. I just cannot see myself with that. I don't know if the SCS will prevent
me from doin any physical activities, bending down or even give me side effects such as more RSD or maybe even different side effects.
HAVE ANYONE TRIED THE SCS TRIAL AND HAVE SEEN BENEFITS?
I am extremely tired of this RSD thing, it is hard and difficult to adapt to this new way oF life. I don't like seeing myself suffering from this nasty syndrome, and I don't like when my family members or people ask me about my leg. It's just annoying.
I've had RSD for two years, I had a tendon reconstruction surgery in my right ankle in 2008. I tear and roptured the tendons when I jumped out of a truck when I was in Iraq. There was a heavy firefight andy superiors told me to jump out the truck n to look for cover, but for my luck I fell in a ditch, and rolled and twisted my ankle severely. That's how the story began.
2 years later since the surgery the RSD pain has increased dramatically and the muscle mass in my entire right leg is dissapering. My leg is shrinking and shrinking more, I am tired of that. I cannot take it. Plus the discoloration and the temperature changes along with the excrutiating pain does not help me on my daily basis. At night is the worst, I have to put a very comfi pillow under my right foot to diminish the pain a little bit. But also gets red and very painful right before bedtime. It is stressing me out more and more.
Honestly, this RSD is killing my leg and o course me too because I'm the one who feels it every single day and nite.
I have to depend on my wife to help me move around, shower, driving and everthing else that requieres movement. I was a very indepedent person when I was in the Marines but now i'M frustated all day long. I hate using my cane to walk, but that's my only way to walk with a little less pain.
I'm going to do the SCS soon, and I hope it works. Can anybody tell me if this RSD goes away completetly or is it the pain that reduces?

I will keep fighting this RSD.

THANK YOU.

SEMPER FI

 
Old 06-16-2010, 09:34 PM   #14
Newbie
(female)
 
Join Date: Jun 2010
Posts: 6
Susanb1962 HB User
Re: Spinal Cord Stimulator

HI,
I had the trial spinal cord stimulator in early December 09 and a week later the permanent one placed. The trial went great. I knew on the table that I wanted one. I wish they would have put the permanent one in right away. But they had to wait the few days for the "trial" to be done. What happened to me was I had scare tissue from the trial already where they wanted it to be placed. I know it's hard to believe. You have to be kind of awake for them to be able to talk with you about where the stimulator is being placed and if they are reaching the place it needs too. Anyway, the first time they put the SCS in it wasn't placed right. Even the machine wasn't in a good spot for me. I guess I was more under than I thought. So, 7 weeks later I had them redo it. This time they put me out, but had me wide away for the 2 1/2 hour surgery. They had to work around all the scare tissue that I had from the first two surgeries. They had to remove the machine and then replace it, but this time I'm happy with the SCS.
What I can share with you is that it takes away the nerve pain, a little bit of other pain. But mostly the nerve pain. So, that's kind of hard to understand that you will still have pain even with the SCS in. So, like the swelling pain or scare tissue pain or old age pain, it doesn't really help with that.
I'm glad I had it done. I think many people don't have to have it done twice. I was just one of the lucky ones! LOL> I have to say that was more pain than anyone should have to go through, but I would do it again. My doctor has told me that I can do things like go down a water slide in a tube or bike ride, but there is always the chance of dislodging it. But the linger it's in the less likely it is to happen. I did have to just hang 6 - 8 weeks after each surgery. so, nothing would happen to the placement.
If anyone has questions about it that I haven't written on, please ask. I really would do it again!

 
Old 06-17-2010, 08:49 AM   #15
Senior Member
(female)
 
Join Date: Oct 2008
Location: Warwick, RI USA
Posts: 136
Sandy325 HB User
Re: Spinal Cord Stimulator

Sincere thanks for serving our country. It stinks that you ended up with this monster from your time with USMC, I'm so sorry.

I was diagnosed in June of 2008, subsequent to an a WC injury in 11/2006 followed by 2 rotatr cuff repairs in 5/07 and 4/08. I became really sick in early 2009 (RSD spread) and had to start a LOA a year ago from my job. Lots of blocks and 7 lidocaine infusions (which helped maybe 30%) weren't enough to make be better to return to work.

In April of this year I started the 10 day outpatient ketamine infusion protocol with Dr. Philip Getson in Marlton, NJ. To date, I've had 20 infusions. My RSD is mostly in remission, I'm not perfect. But I'm better than I was. And I am going back to my job this Monday, a year to the date that I left.

The infusions are non-invasive. The success rate is approx 70-80%. If you can get to a place where they are offered and try them (I needed a series before I started to really notice big changes), I think it is worth it.

I truly wish you the best of luck. Take care, Sandy

Last edited by moderator2; 06-17-2010 at 07:45 PM. Reason: please do not post websites except as described in the Posting Policy

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
spinal cord stimulator questions deviphish Back Problems 36 06-28-2011 08:47 PM
Removal of Spinal Cord Stimulator. foreverangel143 Reflex Sympathetic Dystrophy (RSD) (CRPS) 39 01-23-2011 11:09 AM
spinal stimulator info. lfoster21 Back Problems 19 05-08-2010 08:27 PM
Spinal cord stimulator -Shawley, need advice please Lynne720 Back Problems 21 05-06-2010 11:45 AM
spinal cord stimulator questions removal It is me Reflex Sympathetic Dystrophy (RSD) (CRPS) 2 04-18-2010 06:00 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 03:36 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!