United Brachial Plexus Network, Inc.

I was involved in a motorcycle accident June 13, 2013 during bike week in Laconia, NH. I was flown from the scene & not expected to live. My injuries were extensive but I have recovered from most everything except my tbpi. It involves multiple avulsions & constant pain. I also tore my phrenic nerve so I don't have use of my right diaphragm either. I underwent a 6 nerve transfer & regained some movement of my shoulder. Basically, nothing functional. I underwent 3 attempts to place a spinal cord stimulator due to extensive scar tissue. When I finally got it placed, it didn't do anything to relieve the pain. A wonderful neurosurgeon named Ashwini Sharon, MD from Jefferson University Med. Ctr. performed a DREZ Lesioning to cauterize the avulsed nerve roots which relieved my pain for a month & a half before it returned. And, since my right shoulder is subluxed due to the muscle inactivity, it's pulling my muscles down from the weight of my arm & causing great strain on my neck, now limiting neck range of motion. I am very frustrated because not only am I paralyzed in my right arm but I can't turn my head & have worsened scoliosis on my right. I feel like a mess! I've been in PT/ OT for about 2 yrs which has helped keep me from getting much worse w/ movement. My pain doc keeps trying to wean me from the narcotic pain meds but they seem to be the only thing that takes the edge off of the pain. I weaned myself off several times but just can't manage the pain. I have returned to work, not exactly what I used to do but at least I can work as a nurse in another capacity. I was a critical care nurse in a cardiac ICU. I miss it terribly but also grateful for what I am able to do now by collecting a salary & have benefits. I have accepted the fact that I will not move my arm again or have any feeling from my ear lobe to my pinky finger. I just want the pain to subside. Please, tell me it gets easier. I have an amazing husband, who helps me w/ the things I have difficulty with. I am driving, no one told me I couldn't, so I don't ask. My husband installed a backup camera which really helps. I can handle the paralysis, & have learned to adapt w/ the help of friends & family, I am dealing with the periods of depression & will seek prof. counseling sometime soon. I cannot handle the constant, unrelenting burning, stabbing pain in my arm & hand. Can someone please tell me how to move past that!

Hi,

Lot's going on with your post, which is usual for this injury. I have had my injury over 30 years and I avulsed all five. I would be happy to talk to you about some of this and I will see if I can get Christopher to respond to you on some of the pain issues. Especially as it relates to the narcotics, spinal cord stimulators and the latest in pain management research. I believe he should be uploading a lot of research on the subject soon and will be easy to access off the main page.

My cell is: 818-636-8109

For me and my pain, I have been able to manage without drugs. I have always said the best drug for me is to do life, but I am very aware I am blessed to be able to do that, part of it is I didn't do any other damage to my body other than the avulsions and so was able to get back into my sports and being active within a few weeks of my accident.

Again, happy to talk and also see what we can do to help.

My best to you,
Dan

Thanks Dan. It helps to know I'm not the only one. I have been battling depression on/ off since the accident. I appreciate your response. I have tried to wean from the meds, but have not been successful. Distraction helps but the pain still creeps back in & paralyzes me all over again. The narcotics are the only thing that takes the edge off. I would love to know if the pain gets better but I think my answer is that I need to learn how to cope with it better. Again, thanks for reaching out to me.

I read you post and see so many similarities to me its scary. I sorry to hear the pain has returned after your DREZ. I'm currently considering that and cannot get anyone to call me back at DUKE. I hate to get off topic but I too am searching for answers and was wondering about the recovery from that? I was injured 2 yrs ago and have weaned of the opiates but still take lyrica. I tried stopping that but was unsucessfull and still take a heavy dose that sometimes will stop me dead in a sentence and i cant remember what I was going to say. Hopefully someone will chime in but I have found Dans policy of life to be the best thing currently! Im really considering amputation as well to releave the neck pain, Im a larger guy.

Hi Wildernut, forgive my slowness to respond. I haven't been on the site in quite awhile. I was in a Neuro ICU for 5 days following the DREZ. They had to drain cerebral spinal fluid to maintain the right levels during healing. The surgeon said it was a mess in there. I really didn't have any issues w/ incisional pain. The recovery was difficult in that I couldn't move my neck or head & everything really stiffened up quickly. If you have it done make sure you do as much ROM of your head/ neck/ shoulder as you are able. I wish you luck & hope for your success! It actually has a really good success rate! Thanks for your response. It's nice knowing I'm not alone.

Dakotabloo,

I read what you are going through and it sounds like Im writing it. Wondering how you are doing? Im also in a ton of pain and my nerve transfers failed.

Im considering muscle transfers to get some movement back but Im not sure I want to risk losing my hand movement and more pain..

Im wondering if anyone has done muscle transfers on this site.. Id like to hear how it went.

I hope you respond, Id really like to communicate with you.

I am almost 4 years since my injury. I am just now beginning to wean myself off the percoset. I am still taking lyrica and tramadol as needed. I have found some pain relief creams that are very helpful. I like Salon Pas and horse linament (sounds weird). I am eager to hear about muscle transfers.

Hi guys!

I had a muscle transfer... gracilis for biceps. Mine was not successful. I got a nasty staph infection that killed the muscle I have considered trying again however, I am almost 37 and have 3 kids, the youngest 7 months. I also work full time so I really dont have time for this right now ha! Wish some days I could say my BPI has slowed me down but it certainly has NOT! Thankfully I have a very supportive and helpful hubby!!

Courtney

I know this is an old topic but just trying to get used to using a forum.

I had a motorcycle accident on the 11th of October 2015. I suffered multiple injuries (15+) with one of them being a Brachial Plexus Injury. It's been a little over two years and I have had 1 operation so far where they did 2 nerve grafts one from my trapezoid to my shoulder and the other was the phrenic nerve into my bicep (I apologize for lack of technical terms) I do not have an issue with the pain I find if I do not think about it then I do not feel it, i had no feeling or movement from the shoulder down I have had some success but now my surgeon tells me for being 15 months post op he'd be expecting more recovery although I do my physio everynight, I take omegas 3-6-9 I have done everything I have been told and to no avail. It has given me a curiosity towards the inevitable I guess.....just wanting to talk to someone who has suffered this AND has had their arm amputated (please forgive my "insensitiveness") I'd just like to ask them a few questions about it.

I know that you Hurt,
To take a arm off does happen,
I was born with birth Erbs, a Broken Elbow and Scapula to, Dam Forceps !!!
The latter in life injuries and a Dead arm happen to . Many are happy to have this Amputation To. There are many that post as a PLus to do so and others that live with the possible treatment, I will try to bring up the past post.
Look for it, I will try to pull this past post up, This Is a hard topic...
Tom