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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 04-02-2008, 08:41 AM   #1
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foreverangel143 HB User
Question Removal of Spinal Cord Stimulator.

HI Havent been here in awhile. My question is has anyone every had their spinal cord Stimulator removed? Mine stopped working 5 months ago and they said it must be a lead. I had to wait 5 months to get it approved by WC and in that time I weighted the pros and cons of having it remove. This is the second time the leads have come loose. While I was waiting to get approve had to make the descision wheather to fix it or take it out. Well as you see I have decided to take it out. When I had the trial it seemed to work well it covered my whole hand and wrist where the pain was. When I had it permanetly put in with a laminatony for the lead paddle it seem to only cover the inner side of my hand, wrist and most of my pain was on the outer side, well in the operation i was woken up and I told them repeatedly that it was not covering the whole area. When I awoke in recovery the stimulator would not work at all. They discovered that the lead broke away from the battery pack. (more surgery) The stimulator never did its job properly, ex: if I tured my neck to the right the stimulator would completely turn off. I told the dr several times and he said he would not touch it fearing I would lose it all. So when it stop working all together I decided to take it out. I just want to know if anyone here has had their spinal cord stimulator removed and what should I expect. Thanks for all the information you can give me.
Anne Marie

 
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Old 04-03-2008, 04:18 PM   #2
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Re: Removal of Spinal Cord Stimulator.

hey ann marie. i also am wc and have fought to get the scs. i finally got approved by wc and i since have chickened out. reading this sight and the people who have gotten it, it seems that it only works for a short while and many said the rsd got worse after. i am affraid to try it. my rsd has not spread at all since i got it in nov og 2005 and i don't want to take any chances. at this point, i am only using the lidoderm patches for pain relief. i have tried stellate gaglion nerve blocks and every medication out there. the meds made we act weird and very sleepy all the time. i am soooo discouraged. my new thought is to learn to deal with the pain. this causes me to become very depressed but, i am out of options for now. anyway, sorry to vent. hope you do good with the removal and best of luck...patti

 
Old 04-04-2008, 05:37 AM   #3
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Michelle94 HB User
Re: Removal of Spinal Cord Stimulator.

Hey everyone,
Just wanted to chime in for a sec.. I was reading up about the leads moving and need to be replaced.. I have a friend who has a difibulator (spell?) for her heart.. and she has the leads also.. Shes had this for over 15 yrs now.. and she's been in twice to replace her leads, either they wore out or they moved on her.. I just found that interesting. I guess its the same thing in a way.. Just a different condition..
They did tell her that they may need to be replaced every 6-10 yrs.. So it must be a very common thing..
I was wondering if everyone who has had the SCS.. Do they tell you this before the procedure? I guess this a good question to ask for anyone who has plains on getting this done..
Michelle

 
Old 04-04-2008, 10:25 AM   #4
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Re: Removal of Spinal Cord Stimulator.

All people are different, in my case it never worked right from the very beginning and I have suffered alot of pain in the back of my neck for 2 1/2 years since the implant. At times I can hardly stand the pain it brings me, it feels that my head weights to much for my shoulders. Before surgery I never had neck and shoulder pain. I dont know about removing it how that will help with neck and shoulder pain because they will be reopening the same wound. Well guys wish me luck my surgery is April 14, Pray I have no pain in my neck and shoulders when this is all done. I will still have my RSD in my hand and wrist, but with pain meds it helps alittle. If anyone has had the SCS removed I would love to hear from you. Thanks

 
Old 04-04-2008, 11:00 AM   #5
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JayHunk HB User
Re: Removal of Spinal Cord Stimulator.

Quote:
Originally Posted by foreverangel143 View Post
Well guys wish me luck my surgery is April 14, Pray I have no pain in my neck and shoulders when this is all done. I will still have my RSD in my hand and wrist, but with pain meds it helps alittle. If anyone has had the SCS removed I would love to hear from you. Thanks
My thoughts and prayers will be with you on April 14th. I shall pray that the doctors be guided and that your surgery goes on with no problems. I shall pray for a qucik recovery for you with less and less pain.

I, too, have RSD of the hand and wrist. In my case, the right hand and wrist. I, too, have had several Stellate Ganglion blocks, all to little or no help.

A renown clinic in Cleveland recommended that I have a scs implant, having tried every single other paths of treatment. Reported complications keep me from proceeding. So here I sit, full of patches, pills and pain. I pray that it gets better for you and everyone else living in this awful condition.

As soon as you are able afterwards, please let us know how you feel after surgery.

Many blessings,
Jeff

 
Old 04-07-2008, 10:05 AM   #6
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Re: Removal of Spinal Cord Stimulator.

Thanks for all your support I will let you know how the surgery goes when I am able.

 
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Old 08-24-2008, 07:16 PM   #7
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itsmush HB User
Re: Removal of Spinal Cord Stimulator.

I am having mine removed 8-27-08. I had it put in Nov 2003. it stopped helping with my pain within 2 years. As most of you know workers comp takes forever. I will let u know how it goes. I dont anticipate any problems.......

 
Old 08-24-2008, 09:46 PM   #8
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JayHunk HB User
Re: Removal of Spinal Cord Stimulator.

Thank you for sharing your updates! Good to hear from others in the same situation and I appreciate you all taking the time to share your experiences!

A new doctor for me and he has filed with BWC for SCS approval. Not sure I am up for it but through a trial of new meds, I found out that meds will never help me as my body keeps adjusting to them within a month, leaving them useless. Nothing else left to do....sigh.

 
Old 09-08-2008, 11:18 AM   #9
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Re: Removal of Spinal Cord Stimulator.

Quote:
Originally Posted by itsmush View Post
I am having mine removed 8-27-08. I had it put in Nov 2003. it stopped helping with my pain within 2 years. As most of you know workers comp takes forever. I will let u know how it goes. I dont anticipate any problems.......
I had mine put in around the same time as yours and now have lead failure for second time. I was told to wait 2 weeks to "see how much pain I can handle" and then decide to replace leads or remove. What are you doing for your pain since it stopped working? The neurostimulator was the only thing I could find that has helped.....

 
Old 09-12-2008, 01:55 PM   #10
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ld3340 HB User
Re: Removal of Spinal Cord Stimulator.

Hi Angel,
I guess we are all kind of in the same boat! Remember when we got them put in? seemed everyone was getting them! now here we sit waiting to get them out. Yep, me too. My doc said he will get on it right away. My never did much, and the voltage was annoying more than helping, so 6 months ago I turned it off and it stays off! My worry was that I have coverage to get it out now, what if I leave it in and my coverage is gone and there is a real reason to get it out? I haven't seen your post yet Angel, I hope it went ok? Laurin

 
Old 03-18-2009, 04:27 PM   #11
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Re: Removal of Spinal Cord Stimulator.

I am going to have my spinal cord stimulator removed because I need to be able to have MRI's. Did you have to have anesthesia to remove thed scs or were you just given a local at the point of the incisions??

 
Old 04-01-2009, 01:50 PM   #12
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Talking Re: Removal of Spinal Cord Stimulator.

I am scheduled to have my SCS removed by my neurosurgeon in Nashville, TN on April 20. It never did do what it should have done plus the fact because of not being able to have MRI's that is a negative in having a SCS. I ended up getting MRSA from a knee surgery which I needlessly had to have because they couldn't do an MRI. I really believe MRI's are to valuable not to be able to have one for diagnostic purposes. My neurosurgeon said he has had several patients wanting the scs out because of this fact of not being able to have the MRI's and ending up having exploratory surgery, etc. Wish everyone luck with their operations, etc.
The risk of getting MRSA is so high that everyone should stay away from surgery if they can. MRSA is now killing more people than people with AIDS, however hospitals don't want to talk about it because it will hurt their reputation.

 
Old 04-01-2009, 03:58 PM   #13
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Re: Removal of Spinal Cord Stimulator.

Wow,
After reading the stories on this thread, I am glad that I refused to even entertain the idea of the SCS when my first PM doc told me it was SCS, methadone, or out of his practice. I chose out of his practice as the methadone didn't work for me.

It seems like we only hear the good side of the SCS, so thank you to all who posted their experiences with them. It definitely opened my eyes.

Jean

 
Old 04-03-2009, 04:46 PM   #14
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martra1025 HB User
Re: Removal of Spinal Cord Stimulator.

Hi Anne Marie,
My husband had his SCS removed last July. The recovery was kind of miserable for him. I think he may have had a bit of an infection ( he had a low grade fever) and that's what made him so miserable. He thought the removal surgery was much worse than putting it in. He had the SCS for hand too. It controlled the pain really well for about 3 months then he went through about a year of reprogramming before the doctor finally agreed to remove it. He is now going for a pain pump. Ketamine was suggested but way too expensive. Good luck.

Tracy

 
Old 04-03-2009, 05:15 PM   #15
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Smile Re: Removal of Spinal Cord Stimulator.

Hi Tracy,

A few weeks ago, you asked me a question about the pump. I replied to you in that thread because I couldn't fit my answer into the PM you sent me. I hope you can find it.

Good luck to you and your husband.

Sharon

 
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