United Brachial Plexus Network, Inc.

I have a 20 yr. old son that had a car accident march29,2007..and he has avulsions of c7,c8and t1 can you tell me how long the pain will torture him...his apin management dr. has suggested spinal cord stimulator..all answers r greatly appreciated..and thank you so much for a web site that lets us know we are not alone good luck to all of you...billie

Hi Billie,

My son is also 20, and he was injured 5 years ago when he was hit by a car while riding his bike. All five of his bp nerves were avulsed, and I can tell you that the pain was the worst part of the injury - much worse than the paralyzed arm & loss of functionality. John is very much a "don't look at me" kind of kid, and to see him literally on the floor, screaming with pain - and to hear him even two floors away - was absolutely horrible for me to have to watch.

There are a few suggestions I can make. One is to find a pain specialist with a LOT of experience. There are many different meds that can help treat the pain, but different people do better with different meds & dosages - so you want someone with enough experience to quickly figure out what works best for your son.

Also, for many people, the pain does lessen with time. They figure out ways to cope, such as staying distracted, getting enough rest, also getting enough exercise.

Have you considered surgery to try & regain some motion? John had his surgeries at Mayo and I can't recommend them highly enough. Bottom line, he had complete avulstion of all five nerves, but now has a degree of movement & functionality from transferred nerves. Not only has this given him some functionality, more importantly the return of movement (even though powered by different nerves now) has given him enough relief from pain that he no longer takes anything for pain. And before the surgery, he was taking massive dosages of three meds (neurontin, topomax & amitriptyline). Not everyone gets pain relief, but I know that the return of some movement helped turn down the "can't move the arm, turn up the volume" pain sensation.

I hope that makes sense. John would be willing to talk with your son if you think that would help.

Take care,

Ellen

thank you so much for your information and I m sorry for all you ve gone through. There are no bp drs. in this state and we cant afford to go anywhere else..I really wish he would talk to some that knows what he is going through, but he trys to keep his emotions inside him..maybe in time he will open up..As you know its just so upsetting to watch your child suffer and theres nothing we can do...carlsmom

Hello!

I'm so glad you were able to find this website so soon. It took me about a year of thinking I was all alone with this injury. I also live in Arkansas, Ft Smith to be exact, and would be glad to talk to you on the phone any time. If you want to talk, just e-mail me at srogers@cox.net and either give me your phone # or I will e-mail you back with mine.
God bless you!

Susie

Hey there,

Well i haven't been on here for awhile but i thought i would stop by and see whats going on. I suffered a BPI when i was 15 (I'm 21 now) (C5, C6, C7 severed with C8, T1 avulsed). Yes I would have to say the pain is the worst part of this whole injury. In my case the first 2 years were really rough, but slowly either i got used to the pain or the pain is getting a bit better. At the beginning I was not able to sleep very well but as time went on that faded. It's hard to say but the only thing that really helped was time (with the exception of a few meds during the bad times). Not sure what the spinal cord stimulator is (Similar to DREZ?). Is he taking any meds right now? Was he in school when this happened? I'm not sure if this helps, but if you have any questions i'll be happy to answer them or give my experience.

Cheers,
Andrew

Thank you for your reply. No he was in schooll when he had his accident he had a job. yes he has meds. he takes percocet 10mg..and thye have tried the neurotin but he said it didnt help, and he tried lyrica but that didnt help either.He has a pain dr. but I dont think he realizes the kind of pain carls is in. we r trying to find a new pain dr. Have you had the drez surgery? I ve heard about that.

Hello again,

No haven't had the DREZ procedure but i was seriously considering it about a year after my accident. Neurontin did not work for me either nor did amitryptylene (spelling?). If he finds the percocet helps allot then going for a long acting opiate might better in the long run for him. The issue with the long acting opiates is that they can be very addicting and ultimately higher and higher doses are needed to get the pain relief. Still they were the only thing that helped me in my first two years. I have slowly tapered down to 1/8th of what i was taking, once the pain got better (or i got used to it). They have a really bad stigma attached to them but when they are used properly and prescribed properly they can be a god send to chronic pain sufferers.

Cheers,
Andrew

Thanks again for your reply..could you tell me what kind of opaites you r talking about...billie..p.s. oxycontin and the morphin pills made him sick

I currently take Oxycontin, although things have been going well and i'm hoping to be done with them in the next 6 months or so. I got fairly sick from morphine but oxycodone i seemed to tolerate well. At one point my pain specialist suggested methadone, but at that point things had started to settle down. I have heard of good results from methadone for pain relief. I believe there are a few on here taking it. The other long acting opiates are hydromorphone (hydromorphcontin), and fentanyl patches. Not sure if there are anymore (that are equivalent or better than morphine). I had some bad reactions at first too but as time went on they more or less faded.

Cheers,
Andrew


Message was edited by: Andrew

If you are still checking...I'll put in my 2 cents. My son had total avulsions of all the BP nerves. He had horrible pain and was on methadone which caused significant side-effects. Another doctor put him on long-acting (once a day) morphine. Opiate really are the only medications that have shown some relief from the pain. For such as this, I would not let fear of addiction stand in the way. The chronic and intense pain can drive a person to not want to live. After over 2 years, my son feels that his pain is under better control and that it is very much linked to the amount of stress he is under. We had thought about the DREZ procedure but I would suggest you give it time to see if it alleviates. The DREZ is very invasive and risky. It could result in total pain relief or it could make things worse. Anyway, there are only a few surgeons who perform this procedure and I would be very careful to choose one who has done many before...Good luck, Michele