Spinal Cord Stimulator to get or not for arm?
 

Hi, I'm new to the forum. Found this place during research on the Spinal Cord Stimulation for Permanent ulnar nerve damage.

I have been diagnosed with Ulnar Nerve Damage, Chronic Pain, CRPS, RSD, RSDSA, Caustlgia, Neuropathty by several doctors. The diagnosis is confusing for the CRPS, RSD and RSDSA as when researched they seem to be the same thing, but several of the doctors I've seen say I have all 3 along with the other diagnosis', where as others will assign one sometime 2 of them along with the other diagnosis'.

My history of my Ulnar Nerve Damage is a bit long and very rare, so I want to tell the whole story as I have yet to find another person on the planet that has had it happen to them. I appologize if its jumps or is all over the place, my concentration is horrible from the chronic pain and sleep deprivation from the pain.

I had went to the doctor originally for a sore elbow, it was painful to bend or extend my arm,, the pain was not bad it was more annoying like a "pulled muscle" and in my forearm. After x-rays showed no fractures or broken bones and no swelling or infection, my family doctor sent me to a sports orthopedic doctor. The doctor diagnosed me with "golfer's elbow" and we joked that it was really "scrapbooker's Elbow", since I don't golf and Scrapbook a whole lot and at the time I was a Scrapbook Teacher at Jo-Ann's for the past several months, that took me 5 yrs working there to finally get :) He suggested a cortisone shot and we discussed it all, what it would do to help and side effect. The side effects were possibly a dimple, redness, burning and skin color change at the injection sight. Didn't seem much a risk and he preformed the cortisone shot. Within 15 min. I was feeling great! Over the next week I noticed this "bump" right over my elbow bones on the inside that was irritating when it rubbed against my side as my arm swang as I walked or if you touched it, it would send pins n needles down the arm and really hurt. So, I went back for my 30 day follow up, and pointed out this "bump" and explained it to the doctor, who was a different doctor than the first one I saw. He explained it was my ulnar nerve and was out of position. He explained that there were 2 things we can try, PT and if doesn't work then surgery, but also said he didn't recommend as it usually doesn't work or another cortisone shot and see if the nerve goes back on its own and if not surgery to put the nerve back. So, with the last cortisone shot being helpful, I chose that. This is where it all started, the minute that needle went in, which was at the elbow joint itself, unlike the previous which was more in the lower bicep about 2 inches or more above the elbow joint, hurt like nothing I have ever felt in my life. The pain was so excruciating, i was clenching my teeth, squeezing my thigh with all my might with my left hand and squirming from it and trying to put my mind on something else to not feel the pain, which really didn't work. It felt like forever for the injection to be over, which only took maybe a minute. The Doctor asked as his back was turned to me walking away if it hurt. I replied HELL YES! He replied with, "well, it can burn or hurt for a few minutes, its all normal, make an appt. in 30 days for a follow up." I replied back that it hurt alot more than the last one. He basically repeated himself with no care or concern, as he never even turned back around to even look at me. At this point, I just left, mad and very upset and felt neglected. So I went picked my kids up from school, late because the doctor was over an hour late for my appt. and didn't even apologize or give reason why. But in any case, as each hour went by, the pain and symptoms were getting worse. I had some pain meds from the first appt. I had for the elbow and took that throughout the night, but didn't seem to help.

The next day I tried telling myself it was going to get better and went on with my daily routine. But a few hrs into my work day that was beyond unproductive, many of my co-workers kept telling me I looked horrible and should go home and so I did because I just couldn't take the pain. I called the Doctor's office to be seen cause things just weren't normal. Long Story short, the receptionist was a broken record player repeating that at the injection site there would be some pain, redness, swelling and burning and it was normal. Though, I had numerous times that it was my entire arm and hand from my shoulder to my finger tips that was excruciating pain, burning, pins and needles so intense and muscle spasms you could see with your bare eyes. She did put me on hold and talked to the doctor, who knows what she said to him because she just repeated herself and basically they would NOT see me. Feeling like I was going crazy I called my sister, who is a nurse, to see if I should be seen by a doctor or not. She missed my call, but called me after I had gotten off the phone with my husband who told me to go to the ER. My sister said my symptoms by no means were normal and needed to be seen ASAP by a doctor. Not wanting to go to the ER and sit there for hours and not be diagnosed I called my family doctor and he said to come in immediately, I was taken in as soon as I got there. He said that it appears that the needle hit my Ulnar Nerve and its possible i now have nerve damage. He prescribed some more meds and said to take those and call him at the end of the week if not better. I called him the next afternoon and said I can't take the pain anymore its getting worse. He then sent me to a plastic surgeon who also specializes in upper extremities. It took 4 months but was finally having surgery and would know what exactly was going on. The surgeon wouldn't confirm but said it was possible the nerve was damaged by the needle during the cortisone injection and there was some white substance that was on the outside and inside of my nerve that was possibly cortisone but he never sent it out to find out for sure. After surgery, he sent me to PT which didn't really help much and I only had 10 appts since that is what my insurance covered. He refused to write a note saying I needed more for the insurance to cover the overage, which they said is all I needed to get more approved appts.

I have seen several different doctors from different "specialties" and none can come to the same procedure to go with. Though 3 Pain Doctors seem to think that the Spinal Cord Stimulator will help even though they all said its success rate for upper extremities are not good. I have had several other doctors and PT specializing in hand and upper extremities, also including a pain doctor tell me that the spinal stimulator won't be helpful. I had tried the TENS machine in PT and it was excruciating and made my symptoms worse. Though, the doctors say its similar its different. I know I can try the stimulator on a 2 week basis to see if it helps or hurts. But since my whole incident with the cortisone shot, I am petrified of needles and my trust in doctors is weakened.

I guess I'm just looking for personal testimony from those who have nerve damage in their arm(s) what your experience is good, bad, in different? I find hearing from regular people versus doctors statistics is a better for me to make my decisions cause the one thing i learned is Doctors don't tell you everything and sometimes outright lie, especially when your injury is caused by another Doctor.

Thanks for reading and looking forward to hearing your experiences.

I don't have experience with upper body crps since mine is in my foot, but I would recommend that you see a pain management specialist who has experience with crps. There are blocks they can do for you. You are early on in the disease and that has the most chances for remission.

I have CRPS in my right arm and have a spinal cord stim implant. I think everyone has a different result from it. In my case it help me get off the harder pain pills I was taking. It's didn't totally take the pain away but it has helped me get out of the house more.

upper body scs
 

I have RSD/CRPS . (they are the same thing but CRPS is the new name they've given it)Mine is in my left hand/arm from a wk injury. After dealing with this for 2 yrs, I did go through with the spinal cord stim. My trial was 4 days and helped so much. I've had it a yr and a half now and could not live without it. Mine is a succes, i also take Lyrica, Cymbalta, Mobic, and Flexeril.

I have rsd from ulnar nerve damage to my right ARM. I had ulnar nerve surgery myself and subsequently developed rsd from surgery. I can so relate to your story and concerns. I have seen a pm specialist and have had several blocks, ketamine treatment, and ultimately a spinal cord stimulator. I find the scs stimulator helpful but doesn't take away the pain. I also now have pain in my back and neck from where I had surgery to implant the scs. So yes its some what helpful but also created other pain issues.....so please really do your homework and make an informed decision. I still have major pain, burning, spasms, etc in my right ARM and it hurts all the time. I ended up going out on disability and not being able to work anymore cause the pain. It's aweful. I'm sorry your going through this and wish you well.

SCS causes RSD at the incision sites for 60% of operations but as sande says even some of those say they are still better off however you have to accept that the majority need further operations because of moving leads or failed batteries and everytime there is a 60% chance of causing more RSD. Some have reported that they have had the SCS, removed because it made thins worse. It may help with the background and sharp stabbing pains but I have yet to read of anyone who said it helped with the hypersensitivity. In my case the first spread was caused by the use of a sensitivity pin 4ins outsiade what was thought to be the affected area causing it to spread from hand upto elbow so there is no way I am going to let them operate on me but everyone of us is different.
You need to think it through and weigh uprisks versus possible gains but it will not ake away all your pain

scs
 

I haven't had spread due to scs surgery but every now and then have some mild pain where the leads are and the battery. The scs helps about 75% of my pain on a good day. If the weather is really humid or changes in weather, high stress etc then it's about 40% helpful. I still get some sensitivity but desensitize constantly. Every day I rub my arm, especially if wearing different fabrics. If my hand feels feezing I wear arm warmers and they help. After the scs surgery I had alot of occupational therapy to get back function in my hand (it was frozen shut) I now have full function of my hand, still avoid using it alot but use it as much as I can to keep the function. I miss my active old life but have no choice but to adapt to this one. I still take meds-Lyrica 300 mg, Cymbalta 60mg, mobic and flexeril (at night because I get spasms). I also have a compound cream that helps especially with sensitivity.

Hello!

I have RSD/CRPS in my face, both hands, left arm, left leg and right foot. I had two (thoracic & cervical) SCS implanted in June 2011 and am so thankful I did. They do not promise to take away 100% of your pain, but it has to be at least 50% reduction in order for the implant to be done. With this much pain, 50% reduction is huge to me!!

My spread happened before the implants were placed, surgery did not cause it for me. The cervical stim helped me regain use of my hands, have the ability to raise my arm all the way (couldn't raise it much before the scs) and they have both reduced my hypersensitivity everywhere drastically! I am by no means pain free, but I am much better off than I was a year ago.

Scrapoholic - you need to find a good PM dr that you are comfortable with and treats you well...I know that is hard to find, but they are out there! There are many options out there, but they have to do them right away for the best chance of success!

I had a whole series of nerve blocks for my face 21 years ago and they helped tremendously...I was in remission for a long time. When it came back (hand injury), the diagnosis took too long and it spread like wildfire. The blocks did not help that go around...it was too late. My last option was the SCS, so I took it. The great thing is that you can try the SCS out before getting the permanent!

I wish you the best of luck!
Nanc
:hug:

Can you please link to your data source regarding 60% develop spread, please.

I'll try and find it but with approx 120 links in my RSd favourites folder and 364 articles papers and letters in my RSD documents folder it could take sometime, if I remeber correctly it came from Howard. http://www.thblack.com/links/RSD/index.html
meantime here is one artocle on SCS's

http://www.rsdinfo.org/CRPS-SCS%20Article.pdf

Do you have any new studies or references? The rsdinfo.org article's references are so old. Just wondered if there was anything new.

Like I said it could take sometime but if you use the first link and sign up for the newsletter Howard lists new articles in it each month.

The thing is, this is the first I've ever heard any claim of any such study, and I've discussed the lack there of with three quite knowledgeable RSD docs. And there certainly have been some very vocal anti SCS for RSD posters that have done lots of research and remarked on the fact that the percentages are not known. Thus, the surprise at your claim...

And I'll bet if you tell them that 7 - 8% of us may get wounds that never heal they won't know that either and I am one of them, certainly none of the 7 UK specialists have but then they didn't know that the first use of pre-emptive analgesis when operating on RSD sufferers was published in 2000.

http://www.rsds.org/1/publications/r...2008Spring.pdf

I'm not claiming SCS doesn't cause spread. It's the reason I haven't opted for it. But, that isn't the point. And the parameters of a research study could greatly impact the results. So, if one has been done including RSD and SCS causing spread, it would be something I'd certainly be interested in reading. If there was an informal poll done at someone's website, those numbers are essentially meaningless. Those that have had the best results will move on with their lives and not be active on websites about RSD.

From my own reading I would have put it at about 50% but as I said even some of those still say they are better off than before, it's not in my papers so I'll start on the links but it's quite possible I didn't or forgot to link or download it but I am certain it was a medical study.

Thanks for all the input. Y'all have made some valid points and given somethings I hadn't found in my research or Dr. informing of or thought of myself. I'll continue to keep researching. I do only take studies and research with a grain of salt as unfortunately many are manipulated for whatever or whoever the study is done for. That's why I like talking to people who are in simular situations and have gone thru the procedure or other things. I hope to be around more and become part of this wonderful community. Its nice to talk with others who have the same struggles and understand.

I do have a PM doctor for the past year since I moved back to OR. I had 2 in CA. the first wasn't that great and was about drugging you out to the point you were oblivious to anything around you and have 4 months of no memories other than what i wrote in my journal, and he died earlier this year at the young age of 34! My 2nd one was just simple med treatment which my current PM has continued w/trying the different blocks. But I do always get 2nd and 3rd opinions since my incident regardless of any medical advice. Even with my recent hysterectomy I had seen 2 other Dr. for their opinions. Thankfully all went well and that pain is gone!

I am on Cymbalta, Methodone, Diazapan, Wellbutrion, and Vitamin D. I've had different blocks and they work for awhile. the best one that worked was the radio frequency one and unfortunately like I said my insurance paid for it once then denied me and have gotten the run around from them even to get an advocate. So this is my next option of consideration besides the coma induced treatment. I just had surgery for a hysterectomy and what ever meds they used took alot of pain away for me for 2 weeks. I know there is no cure other than the miracle of spontaneous healing. I am in Physical & occupational Therapy which mostly is done in the pool to help relivate the stress of muscles. My PT in CA was just for desensitation which never worked and they told me don't use the arm but use it to keep joints moving but not for doing normal things. My current PT/OT was appalled and has gotten me to a good point but i was reluctant or just stubborn not to use my arm which helped me in the long run. In anycase, I do want to get off the methodone and diazapan mostly as I've been on it for 3 yrs going on 4 and am already seeing damage to my liver and kidneys and my primary is concerned. Eventually, I hope to be off the cymbalta and wellbutrion for anxiety and depression too cause thats going on for 5 yrs going on 6.

Anyways, thanks again for taking the time to give me your input, it is all welcome and very helpful. I guess, its time to discuss with hubby and then make an appt. to discuss more with my PM Dr. about doing trying the trial at least and go from there.

I don't know if this will help you get off your meds but you have nothing to lose by trying.

http://www.openfocustraining.co.uk/exercise.html