Need help

[Princess]

I'm a 26 year old female who suffered a C5-C7 Brachial Plexus Root Avulsion injury in a motorcycle accident in May. It left my entire left arm paralyzed. I'm desperately seeking info anyone has to offer whether it be surgery that worked (considering we share the same type of injury), any tips on how to find group therapy sessions, any advice on how to live with this disability. Its been 8 months & I'm having a hard time dealing with whats happened. Life seems to bring a world of hurt & pain I had no idea I was in store for...

[EllenB]

What medical advice have you received so far? In what area of the country do you live? The "Surgery has anyone had success" thread is long but has a lot of answers in there. My teenage son has the same completely flail arm as you, & we're headed to two doctors within the next 1.5 months. After meeting them we'll decide next steps, but most likely it will involve nerve grafting...

You're not alone, you know!

Ellen

[Princess]

I live in NY and my doctor referred me to check with Dr. Wolfe to see if I qualify for any kind of special surgery such as a nerve transfer. Does your son have the same exact injury I do (brachial plexus root avulsion?). How old is he & how long has it been post accident? I know I'm not alone but it often feels like I am. Especially since I'm young and know noone with a similiar problem. Thanks for responding. It was great to hear from someone!!

[jennyb]

Hi Princess, and welcome! The medical resources page shows three docs listed in NY, Scott Wolfe as you've already mentioned and a couple of others, altho the one at Beth Israel doesn't seem to see many adults according to his questionnaire. Here's a link http://ubpn.org/medicalresources/newyork-bpi.html The reason it's important to see a doctor who is well versed in adult tbpi is because of the pain side of things-those who aren't very experienced seem not to understand how to deal with the pain and often suggest invasive pain control methods BEFORE less invasive (and less risky) methods are tried. As the pain is a very large part of coping with tbpi this is a serious issue.
Like you I have avulsions, I was 21 when I got injured (like you on a bike) and now I'm 44. My arm is still not working altho my biceps came back to life after about 2 years or so-anecdotally many of us seem to get biceps back, even with very severe injuries. One doctor in India who sees many patients who had no surgery has noticed this but I've yet to see anyone else comment on it. I didn't have surgery (my choice) because there was no hope of getting use of my lower arm/hand back and I didn't see the point of putting myself thru the additional trauma just for biceps, which was all they could promise. So I was pleased when the biceps came back anyway, altho frankly a working bicep without anything else is not much use to me. That's just me, tho, you go for it if there's any chance for you and it's what you want.Hopefully others who have had surgery with avulsions will post their experiences.
I hope you are having intensive PT while waiting to check your surgical options, the muscles not in use contract very badly, to the point where your range of motion even passively is severely restricted, it's important to keep those muscles loose to aid whatever movement you might get back. The armpit is a particular problem-can you raise your affected arm above your head (using the other arm to lift it!)? If you can't, the contractures are already happening so you need to see a PT.
Good luck in your search for help, let us know what happens. Jen NZ

[jennyb]

You can email anyone here by clicking on their name if you want to ask specific questions, or post a message. We've all been thru the early months and years, it is the hardest time for most of us.
Alternatively you could check out messages here http://pub28.ezboard.com/badultswithbra ... usinjuries it's a message board and website for tbpi. The website can be reached from a link at the bottom of the message board, click on 'Trauma bpi group' (i think!) The people posting here have a huge range of experience between them, a lot of newly injured and long termers posting. Good luck :0)

[EllenB]

Hey again. I wish I could answer your questions more specifically but at this stage all I do know is that my son's arm is still completely flail (2.5 months post injury). The MRI was inconclusive since it was done just 6 days after the accident & there was too much swelling. The EMG showed a bit of deltoid only & the neurologist thinks there indeed is nerve avulsion. However, the ortho doesn't think so... all of which tells me, we really don't know squat 'til a surgeon gets in there & takes a look!

One thing I've learned from these message boards is that there are far too many variables in BPI injuries to be able to make assumptions, either way, when you "meet" someone whose story sounds similar. But these boards are invaluable in helping me learn of options I need to consider, & to find motivation/encouragement in other people. Take care.

Ellen

[Princess]

Thanks for your reply Ellen. Most of the advice my surgeons gave me were to either amputate or keep my arm but the function cannot be restored b/c the extent of my injuries are too severe. I thought I had no chance at all, which still may hold true, but I have to at least try, I owe myself that much. I had the hospital mail over my medical records to Dr.Wolfe who works @ the Hospital for Special Surgeries. I live in NY & was told by many that Dr. Wolfe is very reputable & one of the best. Has anyone else dealt with him? I'll be following up with him next week to see if he's reviewed my records & if I qualify. I'll keep you all posted. Are there any doctors/specialists you'd recommend? How did your son get injured, if you dont mind me asking. Only b/c he's so young & I totally understand what he's going through.

[Princess]

Yes Ellen, I agree. These message boards are extremely helpful and theraputic as well. There's so much we can learn from each other & I think its great that everyone is so wonderful & willing to help at a drop of a dime. I hope to know within the next week or so if I should qualify for any type of surgery. Keep your fingers, even your toes crossed for me, hee hee. I could use all the luck in the world right now. I'm expecting the worst but hoping for the best. This way I wont be too devastated & ill prepared if I get bad news. It is so hard for me to deal with this. Your son is so much younger, how does he do it? What helps???

[Princess]

Hi Jenny & thank you for your response. I also checked out the list of Doctors and will be calling Dr. Price soon. Has anyone dealt with him? In any event, I agree with you & am planning on getting a few opinions on doctors who are well versed in adult tbpi. I am amazed that your biceps came back to life after 2 years. One of my doctors told me the lifespan of a muscle is 2 years, after that time period, the muscles are gone & useless. Your story gives me a shimmer of hope. I'm good at maintaining my arm so it wont get contactured. My mom ranges my arm everyday & my doctors say that my arm is in pretty decent shape so I'm making sure my arm doesnt get stiff. My arm can be raised almost straight up when I'm lying down. Thank you so much for your concern, I really appreciate it. My right wrist also broke in the accident, as well as my neck, collarbone & backbone. It was a brutal accident, they werent sure if I'd make it or not. I have screws in my right wrist, two metal rods on each side of my neck, screws & a metal plate holding my collarbone together as it was shattered badly. I have so much hardware in my body they might as well call me the bionic (spelling?)woman! ha. Being that I was a lefty its hard to do wverything with my right hand. Plus I'm going to outpatient therapy to work on the ROM of my neck & right wrist. So far my wrist gets 48degrees actively and 65degrees passively out of 90 degrees which is decent for my wrist having multiple fractures. I'm trying to focus my efforts into seeing if I have a possibility at all to improve & restore function in my left arm. Are you able to hold a bag by your arm since your bicep works now. I know you cant hold a bag with your fingers but maybe bend your arm & hold it there where it bends. I do it all the time with my good arm cuz its just easier for me. Your lucky that your biceps came back on their own w/o going through surgery. How did the doctors explain that one?? Maybe you are the bionic woman! ha.

[Princess]

Thanks so much for the info Jenny, its very helpful. So tell me, how long did it take for you to adapt to being one handed? Any advice as to how to go about it? I want to see a psychologist who has experience working with people who have had tramatic life changing experiences. My shrink at subacute rehab told me it normally takes 2-5 years for people to deal & come to terms with a disability of this sort. My boyfriend of 8 years (we started dating when I was 18 & he was 20) is having a hard time with this as well. When all this happened he slept in the hospital waiting room for 5 weeks & wouldnt leave my side. He literally would only go home to shower when my family told him he's stinky but he would never fail to rush right back to the hospital once again. In thses 8 months he's been there for me every step of the way, so supportive & positive. Recently he's been emotional & having a hard time dealing. He said that he sometimes thinks that one day I'll wake up & my arm will be OK again. I think through this tramatic event he's bottled up so much of his feelings so he could be there & be strong for me that he wasnt there for himself. He recently admitted that he doesnt think he's OK. He's taken time apart to sort out his feeling & try to deal. I know that he loves me but
I am so afraid that he'll end up leaving me. I really dont know how to live w/o him. We grew up together & have spent so much together. We broke up two years ago b/c he was always working & never around so I was lonely & felt single. I ended up falling for someone else who I ended up kissing so I told my boyfriend the truth & broke up with him for a year, in which time I dated the guy I fell for. In that year my boyfriend of 8 years tried desperately to get back with me knowing that I cheated and willing to forgive me but I was too hurt to trust him with my heart again feeling like he'll take me for granted like he did before. He even took me skydiving when we broke up b/c he knew how much I wanted to go but when we were together he swore he wouldnt ever go b/c he feared it. Well at a desperate attempt to get me back we went skydiving and we have the videos to show for it. As he was freefalling he kept mumbling I love you b/c he thought he was going to die & if he did, wanted me to know. That story touches my heart like nothing else will! One day he finally gave me the ultimatum that he just cant continue being my friend b/c he's still in love with me, I knew right there, this is the one man I cant be without! Even though I broke up with him for a year I never really lost him b/c we remained friends & he was still in my life. We got back together & have been together since. Now he's having a hard time dealing with whats happened to me & I'm terrified of losing him. He was the one person who made life lighter for me. I cant afford a heart ache now. I may be jumping to conclusions but I feel so helpless. I'm a big mess!