spinal cord stimulator for CRPS??
 

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 :hug: 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 :hug: 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
:hug:

Dear Accox4,

The words "Spinal Cord Stimulator" and "Desperate" should never be used in the same sentence. The combination of these words is what has led to thousands upon thousands of CRPS patients being permanently disabled. You mention that your young daughter does not usually limit her activities. There is a very real possibility that a SCS could lead to a lifetime of limited activity and CRPS spread.

Please explore more state of the art, non-invasive treatments for you child. tDCS has provided a life long solution for Chronic pain patients, particularly those with CRPS. It has been quite effective with intractable CRPS and is quite safe.

You can never go back if your daughter's CRPS is ignited to full body and the odds are with that happening. Please use every ounce of your advocacy skills to examine the risks. My suggestion is to make the physicians who install them and the companies who manufacture them last on you list, rather than first.

My prayers are with your family.

i agree 100% with ballerina. i am only 18, and got the SCS because i was so desperate. now i am even more desperate because i have a foreign object in my body that limits my activities more then my RSD does at times. Please Please think this through.

Thank you again everyone!
I am looking into the Lidocaine infusions for her & we have an appt with her doctor next Tuesday to discuss this. As far as I can tell now, he only offers Lidocaine fusions, not Ketamine. However, I figure this is a good place to start, especially since she is only 13. Thank you Lit Love for this suggestion!!! Praying it works for her!

Also your daughter may benefit from prescription lidocaine cream for temporary relief.

Ketamine infusions are typically much more effective than lidocaine infusions, but not without side effects and very costly over time. The down side of both is that boosters are needed.

If your physicians are limited in treatment options for CRPS maybe it is time for a second opinion. Please consider tDCS. It is completely non-invasive, is highly successful in treating many forms of chronic pain, including CRPS. There are only minor side effects that are not long lasting. tDCS treatments also require boosters but the cost is much cheaper. Many time the results are better than Ketamine infusions. Please mention this to your physician. If he does not know about the treatments please do your own independent research to educate yourself to add to your already excellent advocacy skills.

Dear Yellow,

Hope you are totally healed and back to your regular schedule and had a great Holiday! Please give us an update on how things are going with your Spinal Cord Stimulator.

Happy New Year!!!!!

Thank you and Happy New Year to you too! My SCS works very well to reduce my RSD pain, I don't know how I could get on without it now. The pain is still there, but usually about a 4 out of 10 when I have it on which is much lower. The issue I've been having though is for some reason I am having stimulation in my stomach which is very uncomfortable when it is only supposed to be in my legs. I've been trying to move the leads down on their own by bending but it's not working- I think they're already scarred in- so now on Thursday of next week I'm going in to have my doctor pull them down a little. I can't wait to have this done so I can have the stimulation out of my stomach and be able to use the device for my pain relief even more.

I guess I would caution, though, that when considering the SCS be prepared for the chance of revisions needing to be made. I knew that was a possibility going in so while I'm frustrated with the setback I accept it and it's worth it for the kind of relief it provides.

Thanks for sharing yellow. So sorry to learn of your setback. Best of luck with your upcoming SCS revision surgery and wishing you a very speedy recovery and improvement in the quality of life that you deserve!!!!!!!!!!!!

Spinal Cord Stimulator/CRPS Checklist
 

Several folks have sent me pm's regarding questions to ask physicians prior to making the decision to implant Spinal Cord Stimulators to treat Complex Regional Pain Syndrome Pain. I have since developed a checklist that I hope is a helpful tool and will promote critical thinking, in depth personal research and self advocacy.

1) What specialized training have you received regarding Spinal Cord Stimulators and Complex Regional Pain Syndrome?

2) What is the source of your training for implantation of the device being considered for me?

3) What research articles can you provide to me demonstrating the safety and long term effectiveness of Spinal Cord Stimulators for treatment of Complex Regional Pain Syndrome pain?

4) What research or written documentation generated by the manufacturer of the device being considered for me can you provide, documenting the safety and long term effectiveness of Spinal Cord Stimulator for Complex Regional Pain Syndrome?

5) What is the Spinal Cord Stimulator failure rate for Complex Regional Pain Syndrome patients for the device that would be implanted in my body?

6) What is the revision surgery rate for Complex Regional Pain Syndrome patients for the device that would be implanted in my body? What is the failure rate for those surgical revisions?

7) What are the odds that implantation of the Spinal Cord Stimulator will cause a spread of my Complex Regional Pain Syndrome or ignite neuropathic pain at the incision sites?

8) Does the manufacturer of the Spinal Cord Stimulator being considered for me recommend implantation for Complex Regional Pain Syndrome Patients? If yes may I review that documentation? If no, on what basis do you install Spinal Cord Stimulators in Patients with Complex regional Pain Syndrome?

9) May I review the physicians clinical manual produced by the manufacturer for the device that would be implanted in my body?

10) What is the average revenue generated to your practice by a standard, uncomplicated Spinal Cord implantation?

11) What percentage of your practice's revenue is generated by Spinal Cord Stimulator implantation and revision surgeries?

I have CRPS and I am a Spinal Cord Stimulator surviver. I say surviver because I unfortunately had a stimulator implanted before I knew of the dangers and risks of SCS with CRPS. Even more unfortunate my doctor suggested a second stimulator to control the spread to my wrist that occurred as a result of a revision surgery of the first SCS, which worked great for 20 months and then just stopped working.

I decided that one spread and one limb with dystonia as a result of a SCS was enough. My doc responded by telling me there was nothing more he could do for me.

I was very lucky to discover the posts on Neurotalk regarding tDCS. The SCS left me in a wheelchair. Although skeptical about tDCS, I read every clinical trial I could find, (unlike what I did with the SCS, that research was basically reading posts on forums of SCS "success stories" which consisted of a few people with CRPS who had not had their SCS for more than months or a few years, in addition to my doctor and the Boston Scientific rep who assured me that the procedure was effective and safe for CRPS patients.)

I have been using tDCS since the first week in January and I have regained full use of my hand and the alodynia in the wrist is gone. I am now on a walker and the dystonia on my foot as well as the spasms are greatly improved. My physical therapist believes we can now make some real progress. Also, the constant headaches and irritability have greatly lessened.

I am now of all narcotics!!!! The atrophy in my legs is improving.

I so much hope that other's who have found failure with every other treatment try tDCS-especially consider this treatment before ever risking greatly worsening your condition with a SCS.

I was telling a friend how my life would have been different if I had taken the Spinal Cord Stimulator checklist mentioned in the prior post to my doctor. She informed me that given my state of desperation I probably would have been too threatened to do that. Sadly, she is correct.

In truth the failure of the Spinal Cord Stimulator which caused the spread and put me in a wheelchair is not the issue. I was my own worst enemy and failed to advocate for myself. I Listened to what I wanted to hear. When the unit worked I decided that it was a God-given miracle.

Spinal Cord Stimulators for CRPS are not driven by divine intervention but rather driven by greed.

If you are considering a SCS and can't take the checklist to your doctor you, like me, do not really want to know the truth.

Please protect yourselves so you don't risk having my experience. Remember, short term relief (months to years) is the best you can hope for with CRPS/SCS. The procedure will do nothing to stop the progression of the disease and the chances are real good that you could end up like me and others who failed to ask the right questions.

James,

I do know, even in the case of PN that SCS wil not stop progression. Before my trial SCS, my Pain Specialist, when asked, did inform me the SCS will not stop progression; but would help with the pain. My trial was unsuccesful so I did not go ahead with the implant. I had hoped SCS would stop progression and would have done another trial if it was possible to stop progression.

I am glad to hear you are doing better. Your sentence was a bit incomplete. Did you say you are "off" all narcotics??

I do not know what tDCS stands for. I would appreciate any info you can give me.

(Ger)

I have CRPS in my arm as well and I have done every option out there....including about 12 different drugs. I have had the injection and it did absolutly nothing for me. It is very frustrating. The sps is the next option for me. I am hesitant to do it but as the doc told me it really isn't doing anything but blocking out the crossed nerve signals. My arm already has crossed and messed up nerves. I would however stay away from the Cymbalta....this was the cause of my CRPS.

Sorry you have PN. I have heard that the symptoms are similar to CRPS. Do you also have CRPS?

Yes I am off all narcotics now. (was no picnic getting there) The mental clarity alone was worth the journey. Since I had been on narcotics for so long I now know that they were only adding to my pain. Wish I had dumped them long ago but I convinced myself that I could not function without them. One of the problems was that a psychiatrist, who I really liked and trusted, kept adding meds over time which caused brain fog. Got rid of the shrink and the narcotics at the same time. Don't need either now. Looking back I wonder if I ever did need either of them.

There is a tDCS (transcranial direct current stimulation) thread containing lots of info and resources. It is where I first learned of the treatment. I recommend reviewing it. tDCS is a treatment for various forms of chronic pain. It might be worth giving it a shot for PN.

Whatever path you choose I hope you find some relief.

Additionally, if you have CRPS consider it good fortune that you did not have a successful trial. With CRPS a Spinal Cord Stimulator is a ticking time bomb.

James
 

Thanks for the info. I am under the care of a Pain Specialist for the past few years. I do not believe I have CRPS. A little more than 5 years ago,I had spine fusion/laminectomy and a badly crushed nerve. Eventually the pain spread from waist to toes. I am on a lot of narcotics. 240 mg's total daily Oxycontin and Percocet for breakthru. Eventually, the constipation led to bladder and rectal surgeries a few years ago. (My Pain Specialist wants me to do another trial.....Not!!!)

Not sure where a tDCS could help since it seems like only one area is treated. I will have to look into this further.

I often have wondered how much my pain is from narcotics and how much is the real pain. Mark56, one of our posters, went thru the withdrawal of all his meds. Not sure I could handle this. Even when a little late taking the 60Mg's Oxycontin every 6 hrs, I experience some withdrawal. The legs are like lifting lead weights and quite painful.

Hope things keep working for you and bring you relief. All this chronic pain is really awful.
(Ger)

I am a nurse who developed CRPS in my left arm and hand in 2008. I slamed my hand in the door at work. Since my injury I have been in constant severe pain with no relief. I have endured painful nerve blocks and surgury that made the pain worse, I have taken cymbalta, gabapentin, lyrica, and use every pain patch there is with no success. I have tried narcotics and found out that Im allergic to all that Ive tried which include hydrocodone, methadone and percocet. I was once a happy outgoing person who enjoyed traveling with my family and enjoyed life and always lived it to the fullest, until I developed depression. My depression has gotten so bad that I tried ECT because no med would help me and the doctors and phychiatrist guaranteed this would help. Well, it was horrible after just one treatment I started having having the worst headache imagined and decided not to continue with the treatments. So now my depression is so bad that Im pettrified to leave my house and when I do I have panic attacks so severe that I feel like Im dying, with the constant pain and depression I had contimplated suicide as my only relief. Now my doctor has told me that my best option is to have a SCS implanted, well after the ECT fiasco I am alittle scared, I dont know what I should do. I would your opinion withis matter if possible, all I want is my life back.!

Hi J! I am so sorry for what you are dealing with. Everyone is different in their symptoms and treatments. I have had RSD for 21 years, which started in the right side of my face. I was in remission for quite a while. In 2009, I hurt my hand and now, in addition to my face, I have it in both hands, left arm, left leg and right foot. I am allergic to pretty much everything! I had successful stellate ganglion blocks when first diagnosed, which put me in remission, so I wanted to try them again. They were unsuccessful because I was too far gone. My dr also tried many other types of blocks with no success. He was the second dr to suggest the SCS. I was terrified! The good thing is that you can try it out to see if it will help before having the permanent placed. I had two implanted in June 2011 - one cervical and one thoracic. I am so happy that I did this. I had to have the leads changed out in the thoracic one in November 2011, so it is much better with coverage. Now, I am not out of pain because it does not reach my foot completely and it doesn't help my face at all (would need leads there to help), but my pain is greatly reduced. This gave me the use of my hands back! This helped me continue to work! Some days it feels like I am only getting 50% relief...to me 50% is huge with the level of pain I have without it.
You have to decide what is best for you and do your research. Also, if you decide to move forward with this, you need to be 100% comfortable with your dr. Many will chime in telling you to avoid it, it causes spread, it is not proven to help RSD/CRPS, etc. But there are also many success stories on here too. Mine didn't cause spread, mine helped me greatly.
You came to the right place! Also check out the SCS & Pain Pumps board (if you haven't already).
Wishing you the best,
Nanc
:hug:

Have you tried a TENS unit? Maybe that would help.