Neurostimulation Therapy

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kasparov
New Member


Date Joined Apr 2011
Total Posts : 2
   Posted 4/11/2011 12:05 PM (GMT -6)   
I have RSD in my left leg and knee. Recently the doctor suggested the Neurostimulation trial. I want to know if anyone has RSD in the Knee has gotten relief using the stim? 2nd question is if it didn't work what were your side effects? I want to look at this from ever angle before I commit to a trial.
Thanks

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16751
   Posted 4/11/2011 2:22 PM (GMT -6)   
Hello Kasparov and welcome to Healing Well's chronic pain forum. I am glad that you have found the forum but very sorry to see another person afflicted with CP as a result of another illness. Yes, as a matter of fact we do have some members on board that have RSD and they should at some time today pop on and tell you hello. Please keep checking back.

Another quick way to get info on the SCS units is if you will look to the top of the page where it say search and type in SCS units you will find a wealth of information on the trials and implants of the units. You know the SCS units are like anything else we try to help lower our pain levels, they work for some and then not for others. It is anvery individualized thing for sure. I have a pain pump and for me after finding a dr that knows how to handle them life is pretty good compared to what it was. My understanding on the units is they do not take the pain away, they create a new sensation that should override the original pain signals. I do urge you to do a lot of research before consenting to a final implant if you do get any relief. I have read the drs will implant them if there is a 50% reduction in the pain, but keep in mind you will still need pain medication perhaps less is the goal. Recently there seems to be a trend of the units not helping after being implanted 4-5 years. One question I think if I were you that I would ask my dr this, if something were to happen that you ended up needing a new PM dr , is it difficult getting another dr to take you on as a patient because of the SCS unit? When my pump was put in my dr never told me that it was next to impossible to get another dr to take me on as a patient because of my pump. You cannot believe what some people with pumps have gone through trying to find a new dr and being told no because of the pump. Make sure you do not get in that trap.

Again welcome aboard and please keep checking in.
Moderator Chronic Pain Forum

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/11/2011 7:19 PM (GMT -6)   
Hi Kasparov, and welcome. How long have you had CRPS/RSD for?ot full body CRPS/RSD that started following a knee injury and surgery nearly 12 years ago.

I had my first SCS implanted in 2006. What Straydog has said is largely correct. They create what's termed paraethesia - this can be anywhere from a gentle tingling to stabbing, burning electricity that is almost as bad as the CRPS itself. I currently have a good setting and coverage for my right leg, and it feels like a tingling, rolling massage inside my leg.

Although it helps me a lot when it works, I've had a lot of problems with it. I'm currently trying to schedule a revision surgery - this will be my fifth SCS surgery. My first unit and lead worked like a dream; I had extreme hypersensitivity - no sock or shoe, rolled up pants, no weight-bearing, and I was walking with crutches within a very short time after my permanent implant. When 'IT' spread to my left leg in 2008, my doctor suggested a lead to cover that leg and I agreed. However, I've not had much go right with it since then - that lead migrated within a few weeks of surgery and became kinked, so had to be removed and replaced. The lead that was put in to replace has now shifted too, and is putting pressure on some of the surrounding ligaments and nerves. I also have a lot of scar tissue, and mild CRPS symptoms in my back from the last lot of surgery.

Straydog - I think that there is not the same degree of difficulty with the SCS as with the pump. Unlike the pump, which is handled by the PM doctor, the adjustments and general monitoring of the SCS are usually handled by a technician who liaises with the doctor as need be.

Kasparov - what other treatments have you tried? Have you looked into things like the ketamine infusion, or all the medication and physiotherapy options? If I can help with any questions about treatments, please let me know.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

kasparov
New Member


Date Joined Apr 2011
Total Posts : 2
   Posted 4/11/2011 9:05 PM (GMT -6)   
Straydog & Laura, thank you for responding. I am still reading the SCS forums.

I had prior knee surgeries and was fine until a work accident in 11/2006. I fell down a handicap ramp at my work that was covered in grease, landing on my knee & other parts. After that I was sent to the ER, x-rays, Vicodin, ibuprofen 800mg and sent home for 7 days with no work. I assumed that I would recover quickly and go back to work. However, this was not the case. By 1/2007 I was still in the worse pain in my life and kept telling everyone that something was not right. I kept getting the oh so common answer "get over it" or "its in your head". I went back to my first knee specialist who was the only one to do any work on me and he did a inter-office test with a weird machine that tested the temp of my skin. This is when I was told it was RSD; however, workers comp decided to say it wasn't and I wasn't officially diagnosed until 5/2007. I found out right before my 35 birthday.

I have had over 20++ Lower Lumbar Sympathetic Blocks, 3 Radiofrequency catheter ablation of the left bundle branch, Physiotherapy & desensitization therapy added in. Meds I have tried: Cymbalta, Neurotin, Lyrica, Topamax, and now I just started Savella. I refuse to take pain meds hourly anymore because they just fog my brain and do nothing to ease the pain. However, I have been known to take a Percocet or Fexmid when the pains goes beyond my threshold or I have a migraine then I have Fioricet (Butalbital, acetaminophen, caffeine, and codeine mixture). I am allergic to Dilaudid found out the hard way. I have been given and gotten no relief from Oxycodone, hydrocodone, percocet, soma, flexarill, Loratab, Celebrex, Ultram, and Lidocane patches. I know that post-op I am feeling no pain for about 30 hours because of the massive doses of fentanyl and morphine because my back spasms so bad I can't get out of recovery without it. My first series 3 of LLSB worked for about 4 months, pain was 2/10 and bad days maybe a 5. Then, the LLSB's got more frequent with less results. So, we tried the RadioFrequency one 3 different times. First one had no relief and when they did a follow up xray it was like the nerves instantly regenerated. The 2nd was a little bit better lasted about 2 months and the 3rd was another failure. We went back to the Lower Lumbar S Blocks and every 3 months I would go have a series of 3 and get minimal relief. Then we did a 6 week series were I had one every friday for 6 weeks. This helped for about 3 months and again back to no relief. My last block was in January and it was my last because there was not even color, temp, or swelling relief this time.

Right now, I use a cane or crutches to get around and this changes with the weather. Some days I have to use the motor carts at the store too. The ketamine for me right now is not an option because of the dilaudid combo they give, we have read about it but stopped when we found out about the medication mixture.

Recently the RSD has moved down towards my foot. There is no crayon to describe the color I am now, but I have been blue, greenish, purple, red, bright white, and the most popular is a combo of red, blue, purple and white, and now I am ewww gross. Me and the doc call it "no crayon".

Kasparov

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/11/2011 9:24 PM (GMT -6)   
Wow...your history of therapy trials sounds like mine - I think the only one in there that I haven't tried is the nerve ablation - the doctors here tend to regard it as contraindicated these days because a/ there are a lot of documented cases of it making CRPS worse and b/ as you've found, the nerves often regenerate anyway. I'm sorry that it's spread towards your foot - I haven't really got anywhere left for it to go to now, except for more internal organs, but spread is one of the nightmares we live with I think.

I'm interested in what you're saying about the ketamine... I've had three low-dose IV ketamine infusions for mine (I live in Australia) and two of mine have been straight ketamine. The third was ketamine with daily 3-4 hour magnesium infusions - certainly no dilaudid. Even if ketamine/hydromorphone is a standard protocol where you are, I would have thought your doc could 'tweak' it to your individual needs?

Most medications have been a real nightmare for me. I take a combination now of oxycontin, topamax and mobic (anti-inflammatory), I have my SCS, a pump with baclofen and bupivacaine and I do physio. Most of the time it keeps it bearable, but I'm not well controlled by any means.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/12/2011 12:39 AM (GMT -6)   
Hi Kasparov, and welcome to the family. I'm glad you found us. The people here are really wonderful and supportive, and I see you've already met the wonderful Laura. She's got so much knowledge on what you're asking about....
 
Like you and Laura, I also suffer with CRPS (also known as RSD), and have dealt with it for a number of years now. Mine also started as a result of a work injury, tendonitis in my right (dominant) arm, but it never got better; infact the pain only got worse. Unfortunately while I do not have the same location, I can perhaps give you a bit more information on the SCS unit as well as I went through my trial back in February, and am currently in the process of scheduling my permanent implant surgery; there will be a seperate post on this for all those following my story. Or is it a saga at this point?
 
I don't know if you've tried nerve blocks at all; Stallate Ganglion Nerve Blocks. From everything I have learned and been told about CRPS there isn't much they can do for us. You are either one of the lucky ones where you respond and make improvements, and it can actually be reversed/go into remission... or you end up with a story much like Laura's and mine. CRPS is infamous for being an evil disease that spreads to affect other parts of your body, as Laura has already mentioned. From my own experience my pain startd in my wrist and hand of October 2007. In six months in crept upwards to include my elbow. It slowed down for awhile, but by October 2009, when I finally found a pain management doctor who not only believed I was in incredible pain, but was able to tell me what I had, it had spread to include most of my entire right arm, and was threatening to take over my shoulder. Now it's my entire right arm, part of the clavical/pectoral area, the scapula region, and into my neck.
 
I cry and scream more then laugh and smile, and something like what happened today, has become my normal routine. I'd spent alot of time in the car, but at least I'd wisely taken my pills with me. I take Percoset 4 times a day, and in a few days I'll be having my doseage upped.... again. But after spending from 9am to 3pm in the car and on the road, with a few stops to buy cat food, look at yarn, and visit my surgeon, by the time I got home I had a snack and laid down on the couch where I promptly passed out for over two hours. When I'm in between doses I take extra strength tylenol. In winter I have finger less gloves and arm warmers, but you could easily wear something like super soft leg warmers to help keep the cold at bay if you're as affected by the weather as some of us.
 
That reminds me, Laura, does the cold bother your knees at all, or joints? How sensitive is your skin? Could you wear something soft and fuzzy?
 
In summer time I use BioFreeze to keep the heat (I live in the high desert) from aggrivating my condition as much as possible; I still end up swollen and sensative and can't stand the slightest touch to my skin.
I've gotten alot of good information recently about the SCS units; typical problems, things to ask, things to expect. An article that was written in Time Magazine about my story has done something I had hoped for; it put probably THE best CRPS and pain doctor in all of Southern Nevada in touch with me and he has given me a lot of good information as a result to try and help me. A compassionat doctor, I know ... don't pass out! I also have probably one of the best brain/spine specialists as my surgeon. Combined with a successful trial, even if it's only five years before it becomes and issue, I will take those 5 years of relatively pain free and more normal life then I have now.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/12/2011 2:05 AM (GMT -6)   
Hi Rhaevin -

I hate the cold with a vengeance - the heat is bad for my swelling, but the cold is so, so much worse for my pain - especially as I also have "Raynaud's-like" symptoms in my hands and feet, on top of the CRPS.

I wear trackies and fluffy socks when I can - but my problem is that my feet and legs are so swollen that even those loose top socks designed for diabetics and the like still cut into my legs.

Progress with my stim revision though! I spoke to the other doc's receptionist this morning - she was nice and very apologetic, but told me there was no way she could fit me in with him until the end of July unless someone cancelled. I put the phone down, had a mini breakdown, then sent a text to my tech to let him know what was going on. He spoke to the doctor on my behalf, let him know that it really is urgent, that my symptoms are progressing once again and Voila... I have an appointment this coming Monday.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/12/2011 1:25 PM (GMT -6)   
Laura, that's fantastic news!! I'm so glad they're able to understand the word and meaning "urgent" in it's full context at the appropreate time. I'm so happy for you, as I know how distressed you were at the thought of waiting till the end of July.
 
For your knees and legs, do you have a fabric measuring tape? Would you be able to measure the diameter around and specify below and above knee measurements; please give them in metric inches ... see I remember we measure differently!  smilewinkgrin    I know I have round looms of various wideths, but I'm not sure if they'll stay in place. For laying down they'd be great for an extra layer, but when standing they'd probably slouch. However if I made a "sleeve" of stretchy fleece you'd be able to have it be comfortable and custom made so it wouldn't be to tight. I like compression on my wrist in the winter to help insulate, but in the summer I just want my biofreeze and my ice packs to keep the swelling under control. For me summer is so much harder because I have so many ways to keep my hand, wrist, and arm warm... but in that blazing heat there isn't much I can do other then ice packs and the bio-freeze.
 
You better let me know how Monday goes, and I'll keep my fingers crossed until then!

reginaknits
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/27/2011 10:56 AM (GMT -6)   
Do you mean to type "SCS Unit " where it says "Google Custom Search?"
Thanks, Regina
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