New injury wanting feedback

Treatments, Rehabilitation, and Recovery
angie1120
Posts: 2
Joined: Sun Feb 12, 2012 8:21 pm
Injury Description, Date, extent, surgical intervention etc: Not my injury my son's injury he is 21 accident happened on January 18, 2012 newly diagnosed brachial plexus with c7 avulsion at spinal cord

New injury wanting feedback

Post by angie1120 »

My son was recently in a car accident (Jan 18) he was ejected out the rear window about 25 ft he has multiple fractures in his pelvis and the brachial plexus injury with possible c7 nerve root avulsion. The neurosurgeon was helpful at the hosptial but upon follow up has not been at all. We have just had the nerve root conduction study and are planned for the EMG next week (since the neuro didn't tell us to be off the blood thinner before the test). We have to decide whether to go to Dr Fernandez in Memphis or Dr Spinner at Mayo. We are thinking to go to Mayo, has anyone had any successful surgeries for the brachial plexus injuries? He is in so much pain not only from the pelvis but constant nerve pain. Any information or related stories would greatly be appreciated. Thanks
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: New injury wanting feedback

Post by jmar »

whatever you do, make sure you go to a BRACHIAL PLEXUS SPECIALIST. NOT a neurosurgeon. or any other type of specialist. and DO NOT WAIT. get treatment ASAP the wait game is not a game you want to play. my dr had me to play the wait game. it almost cost me the total loss of use of my hand and arm. luckily, i went to dr susan mackinnon in st. louis and she done wonders with giving me back some function. do your research on several BPI SPECIALISTS on what type of treatment you are comfortable with. i know the mayo is very good, dr mackinnon obviously, i think she is the best (for me). and there are other drs around the country that are very good also. if you go to the resources tab on this site, there is a list of specialists around the country. i mention dr mackinnon because she is not listed on this site. there are a few that are not listed on here, but that dont mean anything
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hilltopfwb
Posts: 82
Joined: Fri Dec 11, 2009 11:50 am
Injury Description, Date, extent, surgical intervention etc: May 24, 2008 an 88 year old lady did not see me and pulled out while I was riding my 06 HD Street Glide. The accident resulted in 9 broken bones and brain hemorrhaging. The accident's most serious results was two avulsions confirmed in my C6 & C7 vertebrae. In Oct of 08 Dr. Li of Wake Forest University performed nerve transfer lasting around 8 hours in surgery. I have limited use now of my left arm. It took until July of 09 before it moved at all, and now is moving limited. I experience burning pain in my left hand, staying busy helps keep the mind off of burning. I visited the Mayo Clinic May, 2010 and consulted with their brachial plexus team. May 1, 2012, I underwent a muscle transfer at Wake Forest University. This surgery was deemed a success and I have more movement in my arm.
Location: Fuquay Varina NC 27526
Contact:

Re: New injury wanting feedback

Post by hilltopfwb »

Dr. Li of Wake Forest University did my nerve transfer surgery successfully. I did go to the Mayo Clinic and Dr. Skinner and his staff are outstanding. I found out and read about Dr. Li and used him because he is in NC. I was told he was approached about coming onto the staff at the Mayo Clinic and so I felt good about using him. ( I am glad I did). If I did not have a Brachial Plexus Surgeon in my area, I would head straight to the Mayo. Time is of essence. If you live with this past the 8 month time interval and get nothing done, you will have lost your opportunity to get use of your arm/hand (whatever is affected by the injury). You really need to go somewhere that can confirm an avulsion and if indeed there is one, give you a nerve transfer and help you to get usability.

Good luck, the injury is overwhelming at first. I will assure you that you can live a full and happy life after this injury.

God bless!

Jeff
djk
Posts: 82
Joined: Mon Nov 01, 2010 9:35 am
Injury Description, Date, extent, surgical intervention etc: extensive right side brachial plexus injury as a result of a motorcycle accident on 8/25/10.

Re: New injury wanting feedback

Post by djk »

i can not think of a dr. not already mentioned that would be any better than those suggested. but as to the pain i think you do need to find a dr. that is willing to try several different medications until you son finds the right one or combination that works for him. i'm 18 months out from my injury and your son is correct that the pain is intense and constant. he needs a good deal of understanding in this regard because the quality of his life is very important and being able to lessen the pain while at the same time being lucid and functional is a very important issue that needs to be addressed. my experience is that nerve pain and muscular pain are two different things and in my case needed to be treated as equally important with different medications. good luck. and also look at the sling by dan because adequate support is very important.
angie1120
Posts: 2
Joined: Sun Feb 12, 2012 8:21 pm
Injury Description, Date, extent, surgical intervention etc: Not my injury my son's injury he is 21 accident happened on January 18, 2012 newly diagnosed brachial plexus with c7 avulsion at spinal cord

Re: New injury wanting feedback

Post by angie1120 »

Thank you so much for your responses. I just don't want to make the wrong decision when choosing a dr. I hope in the end I will be led to the right one. It helps though knowing there are others out there and the decisions you made. I think he could handle the pain better if he were more mobile, but with the other injuries he can't even get out of the bed without help. I have looked at Dan's sling and was considering ordering this have you had success with it? It did look alot more stable than the one he has now.
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: New injury wanting feedback

Post by jmar »

when his arm is in a lot of pain, move it around. do not let it be still. it will hurt like crazy to move it, but it will actually help reduce the pain. i found that to be true. actually, the more it is excercised and moved around, the better it will be pain wise. keep that arm moving, if he is awake, do not let that arm sit still for long periods of time. i would say over 20 minutes at a time and that is resting from excercise. the BEST THING to do for now is excercise excercise excercise. if he needs help excercising, someone can keep it moving for him.
billvxii
Posts: 28
Joined: Fri Feb 03, 2012 9:06 pm
Injury Description, Date, extent, surgical intervention etc: Motorcycle accident Sept 15,2011. R BPI. R Scapula break. 4 Clavicular breaks. T4 & T8 vertebrae breaks.All ribs broken. 4 replaced with titanium ribs.351GRE8
Location: west of Phoenix,Az

Re: New injury wanting feedback

Post by billvxii »

Angie,
You are really a good mom. I understand your fear for your son. I have done extensive research on all the areas of expertise in the repair of this injury. The preceding posts information are the best you will find. Make sure all the joints he is unable to move are exercised by someone constantly. They will freeze or become harder to move if not constantly, two or three times a day, done. I found that out through my own lack of knowledge.
Also, time is critical for repair.
Keep on going,
Bill
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: New injury wanting feedback

Post by jmar »

one thing i would like to add about excercising....if the nerve heals and the muscle has not been excercised consistantly, that muscle will be useless. but if that muscle has been faithfully and consistantly excercised, there is a better chance you will regain some use of it.
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: New injury wanting feedback

Post by Carolyn J »

Great advice,Joyce,"jmar" 8-)
Carolyn J
LOBPI/73 & your Camp roommate who can't wait until July 21st :)
bill de brooklyn
Posts: 86
Joined: Tue Feb 02, 2010 10:49 pm
Injury Description, Date, extent, surgical intervention etc: BP injury July 20, 1968 the result of an auto accident(c5). No surgery.

Re: New injury wanting feedback

Post by bill de brooklyn »

Dan's sling is the BEST there is for support of arm & shoulder. the other support devices that are offered are not designed for people with a BPI.

Bill
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