newbie with questions...sorry so long

[CHRISSEATTLE]

So I've been pretty much a lurker for the past month and now I’m ready to add my name to the list of active posters. here's my story: 03/19/04 I was cut off by a big car while I was on my little motorcycle. I rcvd broken ribs, fractured spine, lacerated spleen and our favorite - BPI on my left side. I could only wiggle my thumb after the accident, but over the last 9 months I have gained almost all hand function and strength; 50% of forearm function and strength; full shoulder shrug and a little twitch in my upper pec. I do not have feeling on the outside of my arm from wrist to ear. I cannot feel my thumb or pointer finger (this happened after my first surgery on 08/23/04). I cannot move my bicep, tricep, lat, deltoids or pec. I have severe pain in my arm, back and mostly in my hand that I was told by Dr nath is due to injuring my sympathetic nerves, but not to worry because most if not all of this pain should subside after 1-2 years (I see from everyone’s posts in here that this is probably not true). I have a tingle in my neck and face that Dr Nath says is from scar tissue that he removed and claims should subside. I do PT, exercise, eat as good as I can and stretch, stretch, stretch. I was told after many exams and tests that the only thing a local surgeon could do was transfer a nerve from my pec to my bicep. I initially wanted to die, but instead I got mad and started looking for answers. I found Dr Nath, told him my background and within 2 months I was in Houston under the knife. Nath told me he could fix most of my dilema but when I awoke he had nothing but bad news. He said it looked like I had C5, C6 full avulsion, partial avulsion of C7 and a torn C8. He also said that my anatomy was bad because the neighboring nerve he was going to use for my tricep did not exist. He also told me that because my lat, pec and deltoid muscles were so scarred, he was not able to save those either. He was able to transfer a neighboring nerve for my bicep and I believe it has started to twitch just this week. It's too small to tell yet so I don't want to get my hopes up yet (yeah right!!). Anyway, after surgery I was put back on PT and told to zap my bicep and deltoids for a few months with a direct current/ Russian Stem unit and then switch back to the ESTEM unit I was using before. It is supposed to take 5-7 months bere I would be able to use my bicep. If the bicep nerve transfer does not take Dr Nath said he could transfer the nerve from my leg, but it was very risky. He still holds a 1%-2% chance that my tricep and deltoids will come back on their own. He wants to wait a year from my first surgery for this to happen. If they don’t come back I will never have tricep function, but a colleague of his has performed a shoulder fusion and trapezius transfer to try and regain some deltoid function and strength. My questions are:

1. Is there anyone with similar avulsions?
2. Is there anyone with BPI in Washington state?
3. Is there resources other than those posted on this site for BPI experience therapists/physicians in Washington state.? All I can find here are treating children only and I’m 29
4. Has anyone had good/ bad experiences with Dr Nath they would like to email me about?
5. Does anyone have or did have that neck tingle?
6. Has anyone lost feeling in fingers after surgery?
7. Has anyone been told pain is from injuring sympathetic nerves? Did your pain subside?
8. Has anyone used a direct current, ESTEM or Russian Stem unit? Pros? Cons?
9. Has anyone heard this bad anatomy story?
10. Has anyone heard that the muscle is too badly scarred for a nerve transfer?
11. Has anyone had the nerve used in their leg for a transfer? To regain what function? Pros? Cons?
12. Has anyone heard of shoulder fusion and trapezius transfer? Outcomes?
13. I see a lot of posts in here about different doctors performing different nerve and muscle transfers from all over the body, but I seem to be at a dead end here. Anyone out there know of other options for regaining function in my tricep, lat, pec and deltoids?
14. I also see posts out there about how great the mayo clinic is and would like to speak with them about my problems. Who should I contact there? I’m afraid that since I had the first surgery by Dr Nath that nobody will see me for fear of treading on his toes. I just think I need a second opinion.
15 Anyone tired of the “It should…could…might……..”?

Email me or post in message board please. I’m dying for info. Feed me Simore!!!!!!

Internosx3@msn.com

[cbe411]

Chis, I am replying in an email.... letme know that you get it please......

COurt xx

[jennyb]

Hi Chris
Don't worry about long posts and lots of questions, you'd be amazed at how much posts like this help others-for everyone who posts there are probably 10 who just read and take it all in.

I don't have answers to all your questions but would say that I feel it is important for you to see a doctor whose main interest is tbpi injured adults. Dr Nath sometimes sees tbpi but his main interest has always been birth injured children. He has said himself that birth injured children should always make sure they see a specialist whose main interest is birth injured children so I'm sure he would encourage a second opinion for tbpi from a tbpi specialist. Most doctors welcome patients seeking second opinions and I would run a mile from one who didn't!

I'm sure Ellenb will post the contact details for the Mayo clinic when she sees your post. They seem to be easily the most experienced in the US for the complex surgeries sometimes necessary for more severe injuries and have the expert team needed for this. I hope you get the help you need soon. I have pushed the "Roll Call" post up in case there is anyone from Washington state in it, but it might take a while for you to work thru it!

Happy new year and let us know how things go :0)
Jen NZ

[EllenB]

Hey Chris,

Just sent you an email message - more long winded than usual so thought I'd best stay off the board!

Ellen

[cbe411]

Chris it was great talking with you last night.... Ill be in touch and see what I can help you get going out there......

COurt xx