New member needs loads of help/advice

[allison d]

Hi everyone. I luckily stumbled across this site a few days ago! I have been reading most of the posts which appear to relate to my condition, or questions that I have. Here's a little history: I had a snowmobile accident, Dec 28/02, just 10 weeks ago. My doctor advised me there is no surgery available for me anywhere in the world. I am finding this hard to believe as a lot of you have had very sucessful surgeries. My MRI reports states that this is a bp avulsion injury with total involvement of the arm clinically C3-4 down to T1 including a Horner's syndrome. There is a high signal on the T2's in the cord from C5-C7. The right sided C7 and C8 roots are avulsed, there being CSF extravasating well beyond the confines of the canal. More distally, the brachial plexus appears grossly normal.
IMPRESSION: There are right sided C7 and C8 root avulsions. There is still edema in the adjacent cord.

Most of this is understandable?, however, I have yet to meet with this doctor since my release from hospital Jan 7/03, and am not scheduled to see him until March 19/03. No one has explained the extent of my injuries to my satisfaction, (I'd like a diagram also of the bp and the expl of what exactly C3-C8 controls)So the next zillion questions I will post pertain to unanswered questions that are driving me crazy! Hope I don't drive you all crazy too!

[admin]

Allison
Try the Buncke clinic files on google, thats a good place to start for clinical info.
There are a lot of surgeries out there for tbpi, there efficacy seems to depend on an obscure and seemingly unlimited number of factors but a lot of people have had nerve transfers and repairs, these operations are not really new or rare, but some Docs are pushing the envelope a little further than others.
I don't believe that diagnostics are a perfect science, get another opinion, but if you elect for surgery the Docs will all tell you to do it soon. Onepaw

[lizzyb]

Hi Ali,

I've emailed you again with more info. Hopefully I can answer a lot of your questions...you are already in touch with someone in Canada now who can help you out with tracking down a surgeon who is experienced in these injuries. In my experience, it is extremely rare that no surgery is possible; it is possible in almost every type of BPI. It is probably the case that the particular doctor who told you there wasn't any surgery available has never seen anyone with this type of injury before.

I have to say I'm impressed that someone (doctor) had the good sense to give you an MRI scan so early on. Did you have nerve conduction tests too? These early diagnostic procedures will go a long way in diagnosing the damage to the BP but they are not 100% accurate and most surgeons agree these days that the only way to tell which nerves are affected and how badly is to go in and have a look.

When you go to see the doctor on the 19th, take a list of questions with you...it will help a lot. (I know whenever I go and see the drs I always forget what I was going to say..!)

There are loads of websites that have diagrams and charts of nerve/muscle associations and we are working on one for the TBPI Group website. They will at least give you a better idea of what controls which but you might find that some of these sites contradict each other. One that I found that was easy to understand is
http://anatome.ncl.ac.uk/tutorials/brachial1/text/

The BP is such a complex set of nerves and it's really important to remember that each person's injury is unique; no two injuries are exactly the same so any surgical options need to be centred around what is right for you. Don't worry about asking questions...ask away! Have a look at the TBPI Group messageboard too, you should get even more answers from people who have been through the same thing you are going through now http://pub28.ezboard.com/badultswithbra ... usinjuries
Liz B

[jennyb]

Can't add anything to the great replies you've had so far, hope you get some answers soon. I know how scary this thing is at the beginning, hang on in there and if you need help or advice or just want to talk you can email any of us by clicking on our name. Kep us posted with your progress and good luck :0) jen nz

[Gianni]

My son was also told by a doctor in the hospital that he would never have use of his arm. Well, he is now 4 months post surgery and has just begun to bend his arm at the elbow. His injury involved avulsed C7 and severe damage to C5 and C6. He had 9 nerve grafts and a few nerve transfers. He was 4 month post injury when he had his surgery. I took him to New Orleans to Dr. Kline for surgery.
I will pray you get the right advise and if you choose to have surgery, I pray you have wonderful recovery.

Regards,
Maureen aka Gianni's mom

[skatergirl]

hi