United Brachial Plexus Network, Inc.

Hi, I am new here and it is my 21 year old son with TBPI. He had his accident on May 25th 2009. His injury and loss of use is to me a little differnt even the DR. told me he hasn't seen this type on loss. My son can move his right arm but has no feeling or grip in his hand His left arm he has no use of, but his hand has a good grip can move wrist down but has trouble flexing it back. So he can't do much with his arms but his young and storng and doing everything he can to make the most of it, he has cronic pain in the left arm and elbow. His wife gave birth to a baby boy on June 4th a week and half after his accident so he does want to pick up and hold his son someday. Last time I saw him was the 6th of June becouse I had to come home hardest thing I had to so was leave him not knowing what will happen. I live 1800 miles from where he is. Is there hope for recovery???? Any suggestion on how to help make this easier for him???? I am just a lost mom wanting the best for her son....

Thanks for listing to me babble
ET

Hi ET,
I'm in my 20s and was injured earlier this year as well. Obviously I am relatively new to the condition but from your description it sounds like there should be some hope for recovery, but it would take a professional to confirm. If your son hasn't already, his absolute best chance is to see a BPI specialist. I saw the brachial plexus team at the Mayo Clinic in Rochester, MN, and if you look at this forum there have been lots of individuals here that have gone there. According to my local physicians they are the best in the US for this, if not the world. Best of luck to you and your son.

susan mckinnon in st. louis missouri at barnes jewish hospital are pretty sought after and you being in kansas prolly be closer for ya.
daniel

ET,

without doubt i would get him into see a TBPI specialist as soon as possible.
I too had a motorcycle accident which affected my C5 & C6, plus numerous other injuries.
Time is of the essence in these injuries.
i had my initial surgery within 3 months of my accident.
After three nerve surgeries now i now have movement back in my bicep/ brachallis, and further it looks like my deltoid is now reinnervated.
Its funny you should say the thing about being able to lift your baby up. i too have had dreams about this if i ever should have a baby one day.

god bless

shaun

Hi ET...
Within the first 3 months after the TBPI since I suffered one 22 years ago, I can tell you he needs to act quick. Waiting is some Dr.s advise...I heard it all in the beginning. I had a radical pioneered technique an intercoastal nerve fraph into my left lung. Initially my left lung was to fuel the energy/rejeneration. Now I have trained the brain about 15 years ago to use my arm again. The lung is my backup
My nerves were harvested from the back of my legs, so I had no issues with rejection. I was told 18 months before they would see anything in the deltoid area. In physio 9 months later I got a flicker of a bicept! Totally unexpected joy. The Dr.s were called right from my room. 3 of them were screaming with happiness...They and I had made medical history. The pain has been transformed from something that I once believed to be wicked, to something that is a joy of sorts. The recover is long and I have still muscles and nerves returning. It's all up to me. What I choose to do with it.
I say get him to a few Neurosurgeon's find the best...explore muscle, nerve, tendon transfer surgeries. Take it all...My prognosis was poor from the moment I awoke in NICU they were scheduling an amputation. I refused to let them do it. Dr's said it was the worst TBPI they had ever seen or heard of...I said, can you make my anything in looks or function to my own hand, they said no, I said then leave me alone. I put my faith in God...got tough and put on foot in front of the other. I never listened or believed 1 negative comment from the Dr's they all agreed...there was only 1 lady Dr. at the Parapelegic Hosp. where I was sent to rehab. that said she had heard of a 2 yr. medical radical program that exisited, but it was a study only for men. I asked her to get me an appt. with the Dr. When he saw me he did not want to take me on at all. It was by far the worst and he said women almost never get these injuries. I said take me on or I will find a Dr. that will do this operation. He did...the rest is Medical History
God Bless You All

I was 20 when an old lady ran a stop sign, crossed through my oncoming lane, and hit me. After waking up from a coma and my lungs, kidney, spine, 20+ broken bones, and everything else healed i was left with a paralyzed left arm. Once i was able to travel and see clinics about my left arm i was extremely disappointed until i went to MAYO. I've been to other places and will never let anyone else but their surgical team go inside that area.
I trust Mayo with my life, i will stand by them by whatever they do.
GO TO MAYO, they are the best!
Sorry for the loss. My accident was 18 months ago and my surgeries started a year ago. It starting to work and everyday i feel a little stronger, both mentally and physically. i have no use of my left arm, but i have done things i was told i never would. i used to be left handed, now i compete in competitive pistol shooting with my right arm, i can wakeboard(not as good as i used to), and i'm just getting finished with a cross country trip where i did everything from bungee jump to snowboard and hike the mountains.
Your son will be OKay. living through hell never halted my faith...
He will be the biggest factor, and to give him the best would be to have him see the team at mayo.
Wishing and praying for the best for all of you
`jesse

If he has insurance have him contact the team The Brachial Plexus Clinic at The MAyo ASAP! I wouldn't go to anyone else. Everyone goes there to learn from them.
Appointments
Contact the Brachial Plexus Clinic at 507-538-1988
8 a.m. to 5 p.m., Central time, Monday to Friday.

Contact that number first thing Monday if you haven't already. It usually takes a week or so for them to decide if they will take the case. My son had surgery there 2 days ago and I researched everyone! They are truly the best!