United Brachial Plexus Network, Inc. • Looking for answers
Page 1 of 1

Looking for answers

Posted: Mon Sep 05, 2016 12:59 am
by Dakotabloo
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!

Re: Looking for answers

Posted: Tue Sep 13, 2016 2:33 pm
by Dan

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,

Re: Looking for answers

Posted: Fri Sep 30, 2016 10:54 am
by Dakotabloo
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.

Re: Looking for answers

Posted: Wed Nov 02, 2016 8:13 pm
by Weldernut
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. 8-)

Re: Looking for answers

Posted: Wed Feb 01, 2017 2:59 am
by Dakotabloo
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.

Re: Looking for answers

Posted: Sun Mar 12, 2017 6:49 am
by barchetta

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.

Re: Looking for answers

Posted: Sat Apr 01, 2017 1:18 pm
by anebraski
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.

Re: Looking for answers

Posted: Thu Apr 06, 2017 6:45 am
by cbe411
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!!


Re: Looking for answers

Posted: Sat Nov 11, 2017 2:58 am
by AlexGC096
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.

Re: Looking for answers

Posted: Fri Nov 17, 2017 5:03 pm
by Master DIVER TOM
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...