CRPS/RSD in Right Arm Only: Supposed Result of Ulnar Nerve Decompression Surgery
 

Hello All,
First and foremost it is uplifting to find such an encouraging group of honest people. I think the internet is a mixed blessing a lot of times, with all the horror stories.
Our story:
My husband with diagnosed with RSD/CRPS in his right arm only. He had an ulnar nerve decompression and carpal tunnel surgery (both at the same time) on the arm about 1.5 years ago and his PM doctor believes that this is what lead to where he is today. He has just began heavy narcotic treatment, as he refused it for the last year, until the pain became to where he could no longer bear it and the sympathetic nerve blocks didn't work. He told the doctor they have 30 days to get him off of the heavy pain meds (he is bent on not living his life on them: i think having a baby due in about a month makes him very nervous about being in the right 'frame of mind'; but whereever he is at the point, our family will make sure we all get through it together; he is such a wonderful person! I am so blessed.). Regardless, right now we are on the road to him getting his trial SCS done in the next 1-2 weeks. I have seen a mix of posts about what kind of pain relief different people have received/not received from it, all good info. But my main question is has anyone here had it done for this type of CRPS/RSD; just one limb affected in a very specific area?
Any info or personal stories shared would be greatly appreciated.
Thanks for reading!
MrsBatman :)

mrandmrsbat,
i am Type 2, of the right ankle, after a trimeallor fracture with repair. mine has now spread to at more then 2 nerves and is slowly progressing elsewhere. My fracture was spring 09. I have had many nerve blocks and a failed stimulator. Although I am told there are more then one type. Again, it is the individual. Some get relief others don't. It's wonderful to hear that you will have an addition to your household. I would like to welcome you both to our group. Feel free to ask questions, rant rave and share. We are all like a big family and for me it is as been life saving to know that what I feel others have gone through. :welcome_sign:

Mrs. Batman,
Welcome to the family.
Sorry about your hubs condition. I don't have much to say about the stimulator except what you already stated. Sometimes it works and sometimes it don't.
My neurologist is talking about maybe having me tested for one if my pain can't be controlled by meds.
In my case I'm complicated with degenerative cerebral atrophy and the RSD has spread to the spinal area of the cerebellum.
I hope the best for him and let us know how it goes...

P.S.: Congrates on the new one:yahoo:

Thank you for the replies. We are nervous about the SCS (of course) seeing as there are no guarantees and all the what-ifs that go along with any kind of medical procedures; but feel it is worth the try if it could possibly lessen the dependence of medication use and give pain relief long term.
:)

Dear Mrs. Batman -

I do not like to the be bearer of bad news, but f you search the forum - by using the tab at the upper right of each NT page - you will find any number of horror stories under "spinal cord stimulator" or just try "stimulator," for that matter. (Unfortunately, the software can't handle searches of 3 character terms such as SCS.)

Bottom line: there is NO disagreement that. SCS (1) NEVER provides analgesic relief beyond 3 years, (2) does not prevent the further progress of the disease, and (3) is all too often associated with singificant side-effects, arising out of either the surgical implantation or just the burden of wearing the thing in one's back over time, often requiring further surgery just to remove it. Moreover, I'm willing to bet that not all of this has been disclosed to your husband.

From all I understand (although there may conceivably be exceptions) the pririmary reason they are implanted is because they are HIGHLY REMUNERATIVE to pain docs, who like most physicians are paid much higher, at an hourly rate, for doing procedures than office visits.

At only 1.5 years into this, better your husband should find a center that does 2-week outpatient ketamine infusions, which can lead to longterm remission if done early enough in the course of the illness. (That said, if a somewhat less effective inpatient continous infusion was your only option, I wouldn't turn it down.) That and explore biphosphonate (Xometa) infusions.

Sorry I can't provide links right now, but I'm away from home for a few days, and there is only so much I can do with my phone.

I wish you and your family nothing but the best of luck, but I would get on the ketamine thing ASAP. There is a thread on the forum showing doctrs across the country who do ketamine infusions. And for a second opinion and/or a new doctor, search for the site of the American Board of Pain Medicine, this is the pricipal organization that supervises (post-residency) pain management fellowships in the US. Then clivk on tge tab reading "Diplomates" for a search engine of their board certified pain specialists, where the are primarically grouped geographically. It will also show "specialty of origin," for the fields in which they did their resdencies. For RSD/CRPS my first choice in general would be neurology; my clear last choice is physical medicine.

I hope this is useful.

Mike

PS. The more people who jump in right now with useful links, the better.

OP, I don't mean to hijack your thread, but... ;)

fmichael,

I keep wavering back and forth about the SCS myself, for the last 5 years or so. Everytime I get up the nerve to attempt the trial, WC stalls the process, and I eventually chicken out.

After going to Praeger for a consult on Ketamine, he pushed for the SCS and his month long detox program. He didn't offer outpatient Ketamine and quoted me what I can only assume was inpatient, all the while trying to discourage me. I don't trust him at this point. He even denied having patient's have spread caused by the SCS... I've had confirmation that this was b.s. Considering this guy is supposed to be one of the best RSD docs in the U.S., it's more than a little disheartening.

So, in your opinion, should the SCS ever be attempted by RSD patients? Does it ever lead to remission? How often does it cause it spread?

My doc considers Ketamine a last resort. I have to say I'm probably more scared of full body spread, than death at this point. Still, the idea of the SCS significantly reducing my pain, and improving the quality of my life, is VERY tempting.

If you've posted the info before, I'll be happy to go through your older posts--I get side tracked every time I attempt to, you do provide such great info! If you know roughly how far back, that would be a great help.

Thank you once again!

Sincerely,

LL
Founding Member of the fmichael Fan Club.

Hi lit love,

There is not one shred of scientific evidence that SCS are safe and effective for CRPS. I have done extensive research with the two companies that my PM doc uses, Boston Scientific and St. Jude. Both companies used the same research study to gain FDA approval for their SCS. Not only did that study fail to demonstrate that SCS were safe and effective for CRPS, after weeks of written and verbal correspondence with Boston Scientific, thier technical department finally admitted that I was correct when I reviewed all of the research they "summarize" for physicians as well as their own physician's clinical manual which clearly indicates that the unit is safe and effective for failed back syndrome. When I asked why my pain management doctor suggested a SCS for me I was told, "each physician decided how to use our units."

It was amusing when the director of their technical department quoted studies that were outdated, lacking in solid research methodology, not longitudinal in nature, and in some cases outright misquoted the conclusions. Having a doctorate and a background in research methodology comes in handy every now and again!

Basically ditto for St. Jude. St. Jude was particularly defensive when I challenged their interpretation of specific studies they quoted. When I asked for a copy of their physician's clinical manual I was told that the manual is "proprietary material." St. Jude did however offer to send me more "current research". What I received, however, was not current research, but a brochure and DVD propaganda. I was invited to talk to a "mentor" who could explain the benefits of SCS. That aroused my curiosity so I called and asked for a "mentor" with a diagnosis of CRPS. The "mentor" who called me
claimed she was a volunteer (curiously the number on my caller ID was the St. Jude number) The "Mentor" immediately sang the praises of her SCS and told me my life would change and I might experience a remission. When I asked her if she had a diagnosis of CRPS she indicated that she was not permitted to discuss her diagnosis. When I asked her why she replied, "for legal reasons."

BTW Praeger is SCS happy. Just ask him what percentage of his revenue comes from SCS implantation. Praeger has a lit review on the RSDA website which is frightening. This lit review references studies that are not longitudinal, outdated, and some have flawed research methodology.

It is always interesting to ask a doctor how much revenue is generated by one implantation. The blood will quickly drain out of his or her face, followed by something like "that depends on how many leads."

I think I remember one of your prior posts suggesting that you physician had addressed your concerns about SCS. I am curious to know what he said to ease your fears. I have found no research to support any remission from CRPS as a result of SCS.

If your doctor refers you to any clinical trials or studies demonstrating the long term benefits of SCS feel free to let me know and I will be glad to give you my take on the research methodology.

BTW my pm doc no longer does SCS for CRPS. When I asked him why he would even consider it he indicated that the companies pushed them for CRPS. I believe him because when I interviewed both company sales reps I was encouraged to have the implantation and assured that SCS are safe effective for CRPS.

Since I have an appointment with Dr. S coming up next summer I contacted his office inquiring if I should have a SCS implanted. I was cautioned against the procedure for the following reasons.
1) Risk of new source of neuropathic pain at the incision sites
2) Risk from surgical revisions which are common
3) High failure rate necessitating removal thus posing more risk of CRPS spread
4) Risk of full body spread.

When Mike and I pm each other regarding SCS my favorite comment to him is "lambs to the slaughter."

Please, please do your homework before considering this. It is, at best, Russian Roulette.

Have you considered non invasive treatments that address cortical reorganization such as tCDS? (No side effects, you do not build up a tolerance build up a tolerance to the treatment, it is painless and very effective for neuropathic pain)

Wish I could provide you with more tonight but I am not in good shape this weekend.

Please, Please Lit Love do your homework before considering this. I am so frustrated because I have sent private messages to several CRPS folks who politely thanked me but assured me that their doctors had put them at ease. Sadly, after implantation their conditions worsened. Please see prior posts of SCS failures. Might I suggest that you read ellijennings experience. She has shared her SCS experience on her blog which I believe is rsdburningsacrifice.com

Please take care and sending gentle many gentle hugs your way!!!!!!

I will be getting a permanent implant through Boston Scientific on November 3rd. My RSD is in both knees and in the process of spreading throughout my legs as well. I had very good results from the trial, so after careful consideration and a lot of research, I decided to go for it. I will let you know my results.

Dear Lit Love -

More later as I must be brief. At the last dayweek of a meditation retreat, breakfast and pack-up in 20 minutes.

The only study showing remission from CRPS with the use of SCS was among early adolescents, who are really the only group who are likely to go into spontaneous remission in the first place!

I concur in Ballerina's comments re Dr. Prager, who I saw briefly years ago. It's my understanding that the USC Pain Center may now/soon be offerring the 2-week outpatient ketamine protocol, for which they plan on accepting insurance reimbursement, and you heard me correctly. The person you want to see there is the director, Steven H. Richeimer, MD. While it takes a little longer to see him than other doctors there, the rule is that you are forever the patient of the first doctor who sees you there. Their phone number is 323-442-6202, ask for Monique.

Good luck!

Mike

Lit Love,

Mike is right on target as usual. Please be wary of any research regarding remission and adolescents. It is unclear if the remissions are due to Intensive PT programs, meds, tDCS, SCS, combination treatments, a plethora of additional therapies or just remission due to youth.

I concur with Mike regrding considerqation of a trial run of Ketamine. Also please consider a course of tCDS to se if you are a responder. If you need more info or locations for treatment pm me.

Best to you in your journey and hoping better days are ahead for you!!!!

thank you for all of the information; it is overwhelming I must say.
One of the treatments that people are mentioning i have never heard of before: tCDS?
as far as Ketamine, unfortunately, insurance doesn't cover and we are the kind of people who live on a budget (a really tight one). That sounds horrible doesn't it, but one thing our family is learning through this process, that is the hardest reality of all, is that life has to continue along side this horrible illness. We all just want to help husband/dad/best friend get better, but realizing our limitations is truly maddening and humbling all at the same time.
Anyways....
Yellow, I would love to hear about how your trial went and down the road what kind of plan your doctor has for after the implantation. i know that my husbands doctor is absolutely insistent about him continually using his arm, even when it is hard to do; so physical therapy will be very important once his pain can be reduced to where he is at a functioning level. I don't tink of the SCS as a stopping point, just a bridge to the next process of treatment.
Best Regards,
MrsBatman

You are right, the SCS is not a cure but rather a treatment. Patients have to go through a psych evaluation for insurance purposes before the trial, and this is an analogy that the psychologist shared with me. She said to think of the pain while the SCS is on like a tree in a snowstorm. The tree is still there and you can still see it, but it is a lot harder to see through the snow. The stimulator helps to block the pain signal to the brain, so the pain is less intense.

Having an SCS can make physical therapy easier to do, and a person should be able to accomplish more with it. I have been in physical therapy since May (and a total of 19 other weeks over a few rounds before that) so you can see that my doctor feels very strongly about it too. I owe so much to physical therapy and a great therapist, I have been able to accomplish more than I could have imagined, my progression of the RSD has been slowed, and I feel better walking out each time than when I walked in. After the surgery I am pretty sure my doctor wants me in PT at least for the first 6-8 weeks, which is the average time for the leads to become more secure. During this time it's no bending or twisting of the back, no lifting arms above the head, and no lifting more than 5 lbs.

If you'd like to read a more detailed description of my trial, I have this thread over on the SCS/Pain Pumps forum, that I have been updating during my experience: http://neurotalk.psychcentral.com/thread157880.html . Checking out that forum you will also find a ton of great information and really helpful people, I definitely suggest making your way over there! :)

Update
 

I just wanted to post an update on my husband's RSD/CRPS type 2 in his right arm only. This morning he underwent the trial procedure for the Boston Scientific SCS. He had immediate relief. We are home now and he is very sore at the incision site on his back but it was unreal how much relief he had (no pain meds/muscle relaxers since yesterday afternoon, as he wanted to really feel what the device would do) I could look at his arm and visibly see less swelling, redness, etc. within a half-hour after the placement. We know that this next week will be the true test as he tries things that he hasn't been able to do for a while. Mostly I wanted to post this to encourage people. I know it doesn't work for everyone, there are risks, etc. but today, PRAISE GOD, we are VERY encouraged that this will be a good plan of treatment for regaining use of the arm in the months ahead.
Also, the rep from Boston Scientific was really patient and informative. She teared up a bit too at my husbands reaction to being pain free for the first time in 2 years, which I am sure endeared her to me further.
MrsBatman

I'm so happy to hear that it's working for your husband! I have had my permanent implant in for 4 weeks on Thursday and I'm so grateful for the reduction in pain that the SCS has brought me. I have also noticed a decrease in swelling and redness of my knees that has lasted too. I can completely relate to your husband, it is an amazing feeling!!

This week during the trial, try to have him do regular activities as much as possible, which it sounds like he's planning on. It'll really give him an accurate assessment as to how well the device works in regular life. I also found it helpful to keep a pain diary during the trial.

Let me know if you have any questions :)

Thank you very much! God is good!

He has been keeping his pain journal and doing 'regular' stuff as much as possible. I do have a question or request for advice from you (or anyone who has been in this place), how can I help him during the time between the trial and permanent? I know to have the relief and then it be gone could be a little maddening; he is a glass half-full guy though and I know he will focus on the light at the end of the tunnel; i just didn't know if there was anything I could do to help him through that time.

I would say, based on my experience, that the best thing that you could do for him is to just listen to him when he wants to talk and let him understand you know how hard it is for him. It is a hard time, finally finding something that works for you and then having it taken away. Focusing on the light at the end of the tunnel is a really good thing. I was fortunate enough to have one person who really listened and let me talk and it made a difference in coping for me. Also maybe you can do things like get areas of the house ready for him in advance together? Hopefully he won't have to wait too long in between and can get the surgery scheduled quickly!

Fllow up
 

Well here we are a few months later and my husband had the permanent implant. surgery had a very painful recovery but he is at 90-100% pain relief. he says the coverage is getting better and better every day as the leads heal in place. I just wanted to encourage those who may be considering a trial.....I have my husband back!!!!!!! I would say that the withdraws from the pain meds were probably the worst part of his recovery this far (outside of the first few days after surgery). But as he says, it is nothing compared to the RSD...and the withdraws and pain from surgery will go away...RSD pain never did as you all know.

on a side note, the doctor the diagnosed his RSD and directed us to others who could help was Dr. Michael Vandenberg in Pensacola, FL. He is a Rheumatologist (sp?) and a truly caring soul.

God Bless you all!