My 13-yo daughter has CRPS in her hand due to nerve damage caused from a chronic infection and multiple debridement surgeries. Is a spinal cord stimulator only for people with back pain? Will a spinal cord stimulator work for CRPS in a hand?
She has had 4 nerve blocks, out of a series of 6 and these don't seem to be providing great relief for what she has to go through. She has tried pain patches, which have not worked. She does not like taking pain meds, because she was on so many pills for 4 years fighting the infection.
She is an athlete and has had to stop playing volleyball and was forced to quit gymnastics a few years ago.
This is taking a psychological toll on her, as she does not want to have this pain for the rest of her life and does not want to get injections in her neck for the rest of her life, either. She has been depressed since her injection last week and I don't know what else to do for her.
Any suggestions????

I become tearful when I hear of a young person battling CRPS.
SCS for CRPS, however, is very risky business. Please see below and do a NT search for CRPS/failed SCS for additional info.

http://neurotalk.psychcentral.com/sh...timulator+CRPS

I have added you daughter to my prayer list!

Very sorry your daughter has to endure this condition. I would be very leary of SCS. They do work for some but not others. But my take is that in so many cases it causes RSD to spread over time regardless. I could be wrong about this but I've been told SCS work best for lower extremities opposed to upper. She is very young so concerned doctors may shy away from advising a SCS for her. Also be aware of doctors who do not care but make plenty of money off these devices by selling them like a used car salesman. So be very careful.

It has been shown over and over that the younger ones with this condition, the likelihood of remission is much greater. One needs to be aggressive but extremely careful at the same time. If it where me I'd look into Ketamine and Lidocaine infusions and physical therapy ASAP using knowledgeable doctors and staff. Also look closely at non aggressive treatments such as mirror therapy. I truly feel as one gets older it is harder to shake RSD but the young seem to take to treatments, both aggressive and passive, much better leading to positive results much quicker.

My CRPS in in hand and arm as well, I am truly sorry to hear about your daughter's battle. I also have a 13 year old daughter. Being able to see both sides here, I would avoid the SCS. A pill is MUCH easier to deal with than a good size foreign object protruding from under the skin of her back. if I may say this to her : Sweetheart, there are meds that can offer relief Cymbalta, Lyrica, Gabapentin are great in offering some relief and you won't have to have your body invaded by an electrical device. don't focus on one day at a time, take it minute by minute and try Not to stress out (it makes it worse), there is nothing that I am wishing more for you than a moment of peace. I'm sending much love and to you.

i am so sorry to hear about your daughter. i got rsd when i was 11. i am now 18. i had an SCS implanted august of 2010.mine is now off, and is stuck inside my body. i would be very very learly of the SCS. yes it works for some, but your daughter is so young to live with a foreign object inside of her. have you looked into Children's Hospital in Boston? or the Cleveland clinic?

My CRPS in in hand and arm as well, I am truly sorry to hear about your daughter's battle. I also have a 13 year old daughter. Being able to see both sides here, I would avoid the SCS. A pill is MUCH easier to deal with than a good size foreign object protruding from under the skin of her back. if I may say this to her : Sweetheart, there are meds that can offer relief Cymbalta, Lyrica, Gabapentin are great in offering some relief and you won't have to have your body invaded by an electrical device. don't focus on one day at a time, take it minute by minute and try Not to stress out (it makes it worse), there is nothing that I am wishing more for you than a moment of peace. I'm sending much love and to you.

You really need to seek out of the children's programs for her. There have been other threads that give lots of good info about the experiences of others.
Usually they're inpatient programs for 30 days or so, with intensive physical therapy.

Children are much more likely to go into remission. SCS can work, it can also make RSD spread. It's a gamble I wouldn't make with a child...

Insurance companies will sometimes cover HBOT with children--and there is no side effects. Warm water PT is highly recommended. Outpatient Ketamine can be reasonable even if you're forced to go out of pocket. Check out Dr. Hooshmand's 4 F's diet...

Not all blocks are created equal btw. Is she awake while they're happening, so she can help the doc pinpoint the area for best relief?

I had an SCS put in in the beginning of November and it really helps reduce my RSD pain which is such a blessing. As with any RSD treatment, there are success and failure stories. I did a lot of research before I agreed to the surgery and knew it was the right option for me. I recommend that anyone considering it should also do a lot of research to know that it is the best option. There is also an SCS/Pain Pumps sub-forum here on NT which is very helpful and filled with a lot of great information and people who have been through it.

All that being said, though, 13 seems like a very young age to have this implant put in. I would be very leery of it for that reason too. The final decision is up to your family, of course, but it's a very big deal for anyone, especially someone that young. Has she been through a good physical therapy program? PT seems to help especially with younger patients.

Thank you everyone for your responses and help. I know SCS seems very extreme for a young 13-yo, but I am so desperate to find some relief for my daughter. She has since had yet another nerve block and they just aren't working. It has finally effected her psychological state and she is really struggling right now with the thought of having to live with pain for the rest of her life with seemingly no relief. We are also trying a compounding cream (combination of 5 medications), which does not seem to be helping after 4 days use; we were told she should feel some relief after the first day or so, but nothing. My always smiling, joker of a daughter is now withdrawn and not-so smiley as she use to be. Just kills me to see her like this, especially when there is nothing I can do to relieve her pain, not even a little bit.
I am aware of some of the oral medication options, I am, however, afraid to start her on these, as a lot of these are so addictive and being so young, has a longer period of time to need to increase doses as time goes by and her body becomes resistant.
She doesn't remember life without pain in her hand, as she got the original (painful) infection when she 8 and has lived with pain in her hand ever since. Most of the time she doesn't limit her activities because of pain, she has just learned to live through it. However, there have been periods of time, months at a time, where she is unable to use her hand due to pain and due to her psychological frame of mind right now, I want to get some solution, any solution before she is debilitated again.
She did go through an outpatient day treatment program at St. Jude's with PT & OT, which helped a little.
Thanks again everyone for your responses and your help. We see her doc in a couple weeks and we will be talking about some other options.

Hey there accox4, so sorry to hear what your daughter is having to go through and I know it has to be tough on you as well knowing there is nothing you can do to take her pain away.

I have had RSD/CRPS for almost 20 years. It began in the right side of my face and with a series of nerve blocks and medications, I was in remission for a long time. I hurt my right hand in 2009 and it came back with a vengeance. In addition to those two areas, I have it in my left hand and arm, left leg and something is going on with my right leg (hope it is not spreading there too). I cannot tolerate much medication wise, blocks did nothing for me this go around. So the last resort was getting the SCS implanted, I actually got two (cervical and thoracic).

I was losing the use of my hands and the SCS gave me use back. I am not pain-free, but I do get enough relief to work. It's a struggle, but I notice a tremendous difference when the SCS is turned off. The thoracic SCS hasn't been as successful, they had to go in a replace the leads and put paddle leads in because of movement of the first ones. The stimulation I do receive from it does provide relief just not quite enough, we are still working on it...

I do not regret my decision to get the SCS. It's a BIG decision and I know a very tough one for someone at such a young age. If I were you, I would do lots of research, ask lots of questions and check out the doctor thoroughly! Also ask questions of the company whose equipment will be used, St. Jude Medical (did mine), or Boston Sci, whatever...St Jude was so helpful to me.

Wishing you all the best,
Nanc