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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Unread 12-11-2008, 05:16 PM   #1
dealingwithtos
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Question Attention SCS Implant Patients

Hi Everyone,

I'm wondering I could get some advice.

First, some background. I've had RSD since August of 05. I had rib resection surgery for TOS and got it from the nerve damage from the surgery.

On Nov 17th I had a SCS implanted. I had a hard time recovering from the surgery because I got an infection and then the flu the second week I was home. I was miserable. Anyway, I'm back to work FT after 3 weeks of being home. Things haven't been easy. First, my leads are at the base of my neck because my RSD is in my arms. So, then there is tubing running under my skin down my back and then connects to my battery in my hip. I'm still having a hard time putting my back against the back of my office chair. It's sore and sensitive. In addition, my hip is sore (which is to be expected).

For people who have had this surgery, can you tell me how long it has taken you to recover from this? I realize that a month isn't long enough, but geez, my back/neck is really sore. I have been taking my temperature once a day to make sure my fever hadn't come back. It's been normal.

Thank you for your advice.
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Unread 12-11-2008, 05:59 PM   #2
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Quote:
Originally Posted by dealingwithtos View Post
Hi Everyone,

I'm wondering I could get some advice.

First, some background. I've had RSD since August of 05. I had rib resection surgery for TOS and got it from the nerve damage from the surgery.

On Nov 17th I had a SCS implanted. I had a hard time recovering from the surgery because I got an infection and then the flu the second week I was home. I was miserable. Anyway, I'm back to work FT after 3 weeks of being home. Things haven't been easy. First, my leads are at the base of my neck because my RSD is in my arms. So, then there is tubing running under my skin down my back and then connects to my battery in my hip. I'm still having a hard time putting my back against the back of my office chair. It's sore and sensitive. In addition, my hip is sore (which is to be expected).

For people who have had this surgery, can you tell me how long it has taken you to recover from this? I realize that a month isn't long enough, but geez, my back/neck is really sore. I have been taking my temperature once a day to make sure my fever hadn't come back. It's been normal.

Thank you for your advice.
i had mine put in (for my left arm) like in Nov of 04) and it took me like 3 full months at least to start feeling normal again. i ended up having it removed in spring of of 5 because i wasn't helping me and caused me to spread. with the wire up my spine my back would hurt a lot, and my hip would too occasionally. i had times where my right leg-it was behind my right hip, would just completely go out on me and i'd drop to the floor.... then lovely feeling of getting shocked would happen too... it just wasn't for me. i hope its able to bring you better relief than what it did me.
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Unread 12-11-2008, 08:40 PM   #3
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I got my first scs in Nov. of last year. It took at least 3 months before I didn't hurt every day. I loved it when it worked, but I discovered the battery had started to turn around in my butt. I was going to have the battery moved to my side, but right before surgery, the x-rays showed that the leads weren't in my spine anymore. They were off doing their own thing elsewhere. So we went for a complete removal of the old and a complete new unit in its place. Well, that hurt a lot, I had about 80 staples in my back, side, butt. A week after having the staples out, I developed a horrible infection pouring out of my incision on my side. Rushed me to ER, then into surgery. Had to remove the complete unit as the infection had gone up the leads and almost at the paddles in my spine. again, left with many stitches, and an open wound. that landed me in a nursing home for a week. (never again). I now have nothing in me, and I look like Frankensteins wife. I don't think I will ever have it inserted again. I have decided that a life of drugs has to be better then what I have gone thr so far. I still think it is a great unit, and just because I had a problem with it, I would never tell anyone not to try it. I really think it works, and it did work for me.

hope that helps

hugs
Mary
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Unread 12-12-2008, 09:31 AM   #4
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I know this is not what you want to hear, but I have had mine in since May, 2003. I still have discomfort from the battery (feels like I am sitting on a brick), the wires, and the staples/anchors in the vertebrae (a sharp object pushing on the skin from the inside) where the wires are pushed into the spinal column. Some days are better than others, but mostly, I cannot get real comfortable in my office chair, on a longer car trip, or any other similar activity. I use lots of soft, soft pillows!

I have heard that many others will not have these pains after about 6 - 10 months. The doctor who put mine in washed his hands and would not see me shortly after the installation. He said I just needed to heal.

About two years after I had it put in, I saw a respected neurosurgeon at a large, teaching hospital with a trauma center. He said the installation was 'botched' and that the whole thing should be relocated when the battery needed to be replaced. After Mary's experience, I am not sure I want to do that, or just have it taken out.

I hate to be all gloom-and-doom. There have been many threads on this board about this, and there are plenty of people who are totally satisfied with their SCS. I would suggest that you hang in there for about a year, and then start looking for second opinions about where to go with it.

Hope you get better soon,

Mike
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Unread 12-12-2008, 11:31 AM   #5
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I was hoping that the pain Reed is feeling from his new SCS would be going away soon! From what I'm reading here..it could take awhile. I'm not sure he will be happy enough with the stim to keep it if he is still having pain after 6 months.
Reed's leads don't have paddles. They are free floating, which his PM said made recovery easier, but also gives him even more restrictions, lifetime restrictions. At the moment, he's in a real funk. He's just realizing after speaking to his PM on Tuesday and hearing it from the doc's mouth for the first time, that he's truly going to be disabled to some degree for the rest of his life. It's hitting him hard.
It's hard for him to see right now that when he asked the PM " a year from now, will I be able to throw a football with my son?" and the doc answered "no"..that without the SCS, he probably wouldn't have been able to anyway.
This disease really bites, and I think he's just getting the big picture of that.
I truly hope that he never has to go through what some of you have with your SCS.. Mary and Bassman, my prayers are with you both. They are with everyone here. You are all stronger than I could ever be and you have my deepest respect , especially after living so close to it.
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Unread 12-12-2008, 11:50 AM   #6
dealingwithtos
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Thank you so much for responding.

I am sorry that you guys had a bad experience with your implants.

Bassman, my battery is placed higher on my right buttock. It's just below the waistline. I can feel it of course, but I'm in no way sitting on it. I'm sorry that yours wasn't inserted correctly. I wanted additional information on exactly how they were going to implant it and made an additional appt with the surgeon to have her walk me through each step of the implant. I'm kindof **** about that and want to know in detail what they were going to do. I can't imagine how you must feel that the doctor won't talk to you about the implant. I would think he would have some responsibility towards the implant itself. Do you work with your rep who programmed your device?

Mary, I've been following your posts about your experience. I remember how excited you were to finally have the surgery. I'm sorry to hear what happened to you. But, there are positive things too that you didn't develop meningitis and such from the infection. That's what they were going to test me for if my fever had gone about 100.0 degrees. The reason I went through getting this implanted was because my neurontin, baclofen and tramadol were at higher levels because I was in so much pain. Well, it's really hard to work when you're on those medications. I couldn't stay awake in meetings and such. I just didn't feel I had a choice. If I don't work, I lose everything - house, cars, etc. AND, if this doesn't work out, atleast I tried. I do want to mention, after having 5 surgeries myself, I'm sure your family loves you no matter how many scars you have.

Andrea, did they say why your leg would be affected by the stim? Since the stimulation is on the high part of the lead, I wouldn't think that it would affect your legs... Wow. It's amazing how it affects your whole body. That was my concern with spread is that it's now in my back. It's just so sensitive.

Thank you everyone for responding.

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Unread 06-15-2010, 07:10 AM   #7
thezyne
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Default New here looking for info from people with SCS experience

Sorry to hear about everyones bad reactions and experiences to the implant!!

I myself and an SCS implant waiting to happen. I'm having my surgical consult later today in regards to this.
This is my 3rd back surgery in about 30 months. An L5/S1 discectomy hemi-laminectomy in May of 2008, recovered wonderfully and was doing great. Managed to fall while playing with my dog, that laid the ground work for surgery #2. Another L5/S1 discectomy/full laminectomy this time.
I've never been right since the second surgery. I have as of a while back been diagnosed with failed discectomy/laminectomy syndrome .. so needless to say, I'm bummed.
I read one of your guys' posts about levels of tramadol, neurontin and so forth getting out of control. Guys, if that's all you take, I envy you! 100mg of morphine sulfate 3 times/day, anywhere from 8-12 vicodin ES for the accute pain, and of course 600mg neurontin/3 times day.
So with this said, SCS is my last shot at dealing with this pain. I work in IT managing a very large corporate network so keep my head functioning is a must. The implant is my only option for staying off disability at this point.

I'd like to hear some more of your input on this. Especially from ya'll with the problem implants. I am personally very excited about this as conventional drug therapy is far from effective on my pain levels or something I can live with as a professional .. or my employer!

Thanks in advance!!

Nick
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Unread 06-15-2010, 07:41 AM   #8
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Quote:
Originally Posted by thezyne View Post
Sorry to hear about everyones bad reactions and experiences to the implant!!

I myself and an SCS implant waiting to happen. I'm having my surgical consult later today in regards to this.
This is my 3rd back surgery in about 30 months. An L5/S1 discectomy hemi-laminectomy in May of 2008, recovered wonderfully and was doing great. Managed to fall while playing with my dog, that laid the ground work for surgery #2. Another L5/S1 discectomy/full laminectomy this time.
I've never been right since the second surgery. I have as of a while back been diagnosed with failed discectomy/laminectomy syndrome .. so needless to say, I'm bummed.
I read one of your guys' posts about levels of tramadol, neurontin and so forth getting out of control. Guys, if that's all you take, I envy you! 100mg of morphine sulfate 3 times/day, anywhere from 8-12 vicodin ES for the accute pain, and of course 600mg neurontin/3 times day.
So with this said, SCS is my last shot at dealing with this pain. I work in IT managing a very large corporate network so keep my head functioning is a must. The implant is my only option for staying off disability at this point.

I'd like to hear some more of your input on this. Especially from ya'll with the problem implants. I am personally very excited about this as conventional drug therapy is far from effective on my pain levels or something I can live with as a professional .. or my employer!

Thanks in advance!!

Nick
Good morning TOS...

Reading your post I think part of your question also has to do with recover from the rib ressection too..I can help with that as I had two ribs out due to TOS in 89 and 90....my first rib on each side..It took a mighty long time, 6 months-1 yr. before I could say I was barely back to normal due to those surgeries..They are major stuff!! AND I have a SCS, implanted in 9/08... I too am just a unit "carrier" as it makes my RSD mad eachtime I turn it on..so I just charge it and keep it happy...Yes, my battery pack is in an inconvient spot, my left hip and wires are hooked for both legs..I know the wires are in there but not a bad thing, no pain....

I hope this helps you..You are correct in that we really got "served"!!!

Let me know if I can help you in any other way..

hugz, Kathy
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Unread 06-15-2010, 01:11 PM   #9
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Quote:
Originally Posted by thezyne View Post
Sorry to hear about everyones bad reactions and experiences to the implant!!

I myself and an SCS implant waiting to happen. I'm having my surgical consult later today in regards to this.
This is my 3rd back surgery in about 30 months. An L5/S1 discectomy hemi-laminectomy in May of 2008, recovered wonderfully and was doing great. Managed to fall while playing with my dog, that laid the ground work for surgery #2. Another L5/S1 discectomy/full laminectomy this time.
I've never been right since the second surgery. I have as of a while back been diagnosed with failed discectomy/laminectomy syndrome .. so needless to say, I'm bummed.
I read one of your guys' posts about levels of tramadol, neurontin and so forth getting out of control. Guys, if that's all you take, I envy you! 100mg of morphine sulfate 3 times/day, anywhere from 8-12 vicodin ES for the accute pain, and of course 600mg neurontin/3 times day.
So with this said, SCS is my last shot at dealing with this pain. I work in IT managing a very large corporate network so keep my head functioning is a must. The implant is my only option for staying off disability at this point.

I'd like to hear some more of your input on this. Especially from ya'll with the problem implants. I am personally very excited about this as conventional drug therapy is far from effective on my pain levels or something I can live with as a professional .. or my employer!

Thanks in advance!!

Nick
Welcome to NT! Glad you found this wonderful forum! You will get much support and encouragement here.....

The thread you happened upon is dated December 2008, and alot has happened since.....
There has been a whole new sub-forum created and there are many exciting things going on there! Here is the direct link to get you there:

http://neurotalk.psychcentral.com/fo...ysprune=&f=118
The SCS/Pain Pump forum is listed in the main menu as a sub-forum in the "Medications" section

Good Luck with your appointment today! Keep us updated!
There are many more 'success stories' coming to the boards now, so please don't be 'jaded' by the negative testimonies...
It truly has helped several get their lives back......but yes, like the others have shared, it also has disappointed some...
It's a very individualized treatment option and no two can really compare.

Hope to see you at the SCS forum....
There are several folks there who are really cool and 'fun' to hang out with.
I really encourage you to check out Mark56's posts.....he sounds alot like you in the way he is getting his life and career back....

Have you been diagnosed with RSD? Lotsa fantastic folks here at the RSD forum as well! You'll get much support, no doubt!

God Bless!
Rae
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Unread 06-15-2010, 09:04 PM   #10
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Default Greetings Nick!

Quote:
Originally Posted by thezyne View Post
Sorry to hear about everyones bad reactions and experiences to the implant!!

I myself and an SCS implant waiting to happen. I'm having my surgical consult later today in regards to this.
This is my 3rd back surgery in about 30 months. An L5/S1 discectomy hemi-laminectomy in May of 2008, recovered wonderfully and was doing great. Managed to fall while playing with my dog, that laid the ground work for surgery #2. Another L5/S1 discectomy/full laminectomy this time.
I've never been right since the second surgery. I have as of a while back been diagnosed with failed discectomy/laminectomy syndrome .. so needless to say, I'm bummed.
I read one of your guys' posts about levels of tramadol, neurontin and so forth getting out of control. Guys, if that's all you take, I envy you! 100mg of morphine sulfate 3 times/day, anywhere from 8-12 vicodin ES for the accute pain, and of course 600mg neurontin/3 times day.
So with this said, SCS is my last shot at dealing with this pain. I work in IT managing a very large corporate network so keep my head functioning is a must. The implant is my only option for staying off disability at this point.

I'd like to hear some more of your input on this. Especially from ya'll with the problem implants. I am personally very excited about this as conventional drug therapy is far from effective on my pain levels or something I can live with as a professional .. or my employer!

Thanks in advance!!

Nick
Hi Nick, Here's hoping you will see this message along with my encouragement that you walk on over to the SCS/Pain Pump Sub Forum. Find it here http://neurotalk.psychcentral.com/forum118.html where you will note a good many folks from the broad spectrum of opinions and results relevant to the SCS and Pain Pump implants they have either received or hope to have in the near future.

I came to the forum some months ago searching the net, frankly, looking for informaiton pertinent to the notion of going through a psych review by a professional precedent to the Trial Spinal Cord Stim surgery I ultimately did have in May 2010. So many folks came to my view who had been through this and shared all manner of thoughts and encouragement with me that I just HAD to participate. Being laid up from my professional career, I determined to become involved- where they could help me, I would receive, where I could lend a hand, some else might benefit by something I had to say.

The SCS Trial went very well from me, as you may read from my thread at the sub forum here http://neurotalk.psychcentral.com/thread117854.html . Things went so well, like a 70% to 100% pain relief during the trial that we determined to push ahead. My permanent implant is now scheduled for 29 June. I am pumped, looking forward to it, and after multiple times in an OR, I was not originally looking forward to another such occasion. However, I know it works, and I want my career back, my life back, or so much of it that, God willing, I might restore.

So, there you have it: opportunity for alternative pain management awaits. Some of us like it. I am a determined advocate of it for now. I will share more as my thread develops post surgically.

I hope to see you around Nick,
Mark56
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