surgery after several years - bilateral tpbi

[quichelorraine]

hello everyone,
i'm so glad this board exists.

my boyfriend has limited movement in both his hands - his problem is mainly with fine motor skills but he can do a lot of things such as cooking, driving, etc. however, he can't play guitar or shoot pool, etc. he used to be a guitar player, and was dragged when unconcious when he was a teenager. at the time, surgeries were very risky and the doctors said he would recover full movement naturally. now, it's been a decade, and he hasn't seen much - at first he did, then for about 6 years, not much, and in the last year he's begun to see small changes again.

i've been urging him to go back to physical therapy - some of you have mentioned water therapy which sounds beneficial - and also to begin exploring the option of surgery. he got in touch with dr. nath and was told it would take multiple major surgeries over the course of several years.

i am wary of pushing him too much, although he seems to want to explore his options for himself, and i want to be supportive to him either way. my question is - is there anyone out there who has tried surgery after waiting for several years? now many doctors (especially the nerve transfer specialists, etc) are saying that after this long, there is nothing that can be done pretty much. does anyone have any advice, either in surgery options, physical therapy or just how best i can deal with this emotionally, both for my boyfriend and as his girlfriend?

it's depressing sometimes, bc for a long time his hands didn't bother me, but as our relationship has gotten more serious (and it's been wonderful!) my parents, other family, etc have become more of an issue for me, and although they've never met him (they live on the other coast) yet, i'm so nervous about all of it. i find myself alternating between denial and sadness and anger and then i feel very bad for making him sad bc it seems selfish of me. but i just feel like i care about him and our relationship a lot and i want to see what our options are and know what i'm getting into here. i really want it to work out. althought there have been some tensions between us as we begin to see what our options are we've also become very close through this very emotional time - for him he is looking at things that he had closed the door on some time ago. i don't want him to be disappointed if nothing works out. it seems that all the doctors think that surgery must be performed within the year for it to be successful - is this true in every case?

thanks for listening.

and thanks for this wonderful resource - i'd be lost without it.

[peter]

See as many doctors as possible. it'll be expensive, but you want the best and you don't want to settle with the first opinion.

Alot of ppl have gone to dr Nath in TX. Then there is a team of 3(bishop, spinner and someone else I forgot) in MN. They are in the Mayo Clinic. All the hotels are within a block of the clinic. I was really impressed when I went. I took tests for 2 days and they seen me and consulted me based on those tests.


Don't push your boyfriend. Let him make the choice if he wants surgery. If he's comfortable of who he is, leave it be. It's good that you want to see his hands improve, but it seems that your family is the prime reason you want him to get better. Dont worry about your family's view of your boyfriend. I walk with a major limp and it was never an issue for any of my girlfriends' families. To be honest, if it was an issue, I wouldn't care. And if my girl had an issue, she would then become my ex-girl.

[quichelorraine]

thanks peter, we will definitely be getting in touch with dr. nath again (he had expressed some interest a year ago), the mayo clinic (seems everyone is raving about them and i'm curious to see if they would have anything to say since his injuries are 10 years old and the muscles in his forearms and one upper arm have atrophied.

question - does anyone else out there have bilateral - both arms - affected? he was dragged by his wrists while unconscious when he was 19 and that's how it happened. most doctors seem to not know how to deal with the bilateral aspect of it.

in regards to not pushing him - absolutely. at first he thought it would heal naturally. after 5 years or so he realized it was permanent and most likely he wouldn't regain movement. since then he's been closed off to the option of exploring any other possibilities, for fear of being disappointed. then a year ago i came along, fairly naive i must admit, and not really having any way to fully understand what he went through - i can only imagine. but through my naivete and general optimism, i think i've played a part in him wanting to know what all his options are given all the advances made in the last 10 years (in 1996, nerve transfer wasn't really an option they said) since his injury - i think he's curious, as am i, to know if there's anything to be done. i know he's fine with it they way it is now, but also doesn't want to be a burden on people and have them worry about him, nor does he want to be a burden on himself. that's what he says. and he's not a burden, but his main passion (guitar) was taken away from him and although he's adapted beautifully, and has many other interests, i know that there is lfe in those hands. we went to hot springs last year, and he had watsu, which is water massage and that was very good for him and for his arms. the therapist also commented that there was a lot of life or energy in his fingers, which gave us hope, bc miraculously, after years of no changes, in this past year he has begun to see changes again and has been able to move his fingers a bit more!

but surgery is no small thing and i definitely will not be pushing him either for or against it - we'll see what the doctors say, it might not even be something he qualifies for. as for everyone else - yes, it doesn't matter what they think, you are right!

the board has been very helpful to me - just reading it through and all the old posts - makes me feel so much better as i've been dealing with this alone and besides my boyfriend i've not really talked about it with anyone - even my best friends don't really get it - and it makes me feel distant from them in a way.

the way we met, how things have progressed in our relationship, etc, have been unbelievably great. we're kinda a funny match - he's very comfortable with who he is, very witty and clever and has adapted to doing most anything despite the bilateral tbpi stuff - he can drive better than anyone i know, he's very good with computers, etc. i'm more positive in general while he's more cynical though and i'm an actress, and he used to be in a band, so we get each other in that way. we have cultural differences too, since we come from different ethnicities - but despite all these things, what some may perceive as hurdles, we've just had the best time, and we have an amazing connection. i know that's what will get us through the coming months as he and i begin to do research and he deals with the options or lack thereof for his particular situation (avulsion in c5, 6, 7 as well as c8 and t1 in both arms - however he can move his arms, bend his elbows etc - acupuncture in the first few years was really helpful in this for those of you with recent injuries - one day he was able to reach around to his back pocket after not being able to at all! try it if you can).

thanks again all of you and thanks peter for your good advice.

[quichelorraine]

got in touch with dr. winfree in manhattan. he said after a year, there's no way a nerve transplant will help, but if there is pain there is help - for those of you who have pain. he doesn't have pain. the email was curt-ish so he called him back to follow up and see if there's anything else - he said he should get in touch with an orthopedic surgeon.

does anyone know a good orthopedic surgeon, especially in the california area? thanks!

[admin]

Hi

I have a bilateral arm problem but its central cord syndrome and has affected my C5/c6. However the nerves were always firing on the right side and I have functional movement in that one. On the left just atrophy in the shoulder area. It doesn't sound like your boyfriend has full avulsions if he can bend his elbows and move his arms. I have been focused on the shoulders and am hoping to go for an op to help movement on the left side, muscle transfers etc. After 10 years though,I imagine if would be difficult to go through the talking to consultants again, getting hope, getting no hope, getting hope etc.etc. but then nothing ventured nothing gained. No harm in seeking more opinions and seeing whats on offer after a decade.

[EllenB]

Get in touch w/Andre (posts as diargasm) or Chris Janney (posts as Christopher) - both of them live in California. Andre had his surgeries with a doctor there, Chris spoke with & met with about 2,000 doctors (right, Chris??) and ultimately chose the Mayo Clinic in Rochester MN - but Chris can still give you some suggestions.

Take care & good luck,

Ellen

[quichelorraine]

thanks aurelia, yes i agree nothing ventured, nothing gained. how true. and yes, it's true that after 10 years it must be very hard for him to get out there again and become invested in the possibility of regaining movement. but now that he's made the decision, he's moving forward and we're beginning by putting all the doctors and pt's we want to contact into a filemaker database, so we can easily keep track of who everyone is, when we last contacted them, where they are located, etc.

today we got an email back from dr. nath:

"Hello, It is always possible to improve function in the arms and hands even several years after the injury; it does require more complex reconstruction. If you can send me a brief video showing your movements in the arms and hands, including: (1) overhead movements at the shoulder (2) bending and straightening the elbows (3) hand and finger movements (4) resting position of the arms while standing, I will let you know what the options are.

Call or email me anytime, I am usually easy to find through my office or answering service.

Sincerely,
Rahul K. Nath, M.D."

he seems like a very nice person and i haven't heard of any negative experiences with him on this board as of yet.

so...we'll see...we are trying to be very careful about not getting any hopes up.

good luck with your op - when is it and where are you going for it? that's great that you qualify - we don't know if we will even qualify for any surgery, and then it's back to physical therapy. after about 4 years of pt, they told him to stop coming, which annoys me bc now his muscles have really atrophied and even if the nerves have regenerated, it's difficult.

let us know when you go for your op - i'll be thinking about you.

[Jason]

I had surgery with Dr. Nath 10/28/05. He is a realy nice and soft spoken guy. He was the first Dr. I found and I schedualed surgery with him, at that time I had not found any other doctors. But I do feel I made a good decision. You can go to page 8 on this board and find where Rob4spirit asked (Dr. Nath good and bad) and find stuff people posted about him. My mom posted their about me her name is Marlene Johnson. She also posted a link where you can check him out with the Texas medical board as she did. You can read about my surgery at http://wwwdrnathbrachialplexus.com/weblog/index.php at the top search by date mine was 10/28/05 I see another person on their no other doctor would help on 11/2/05 remember to ask lots of questions.

[Jason]

try this I left out a .

http://www.drnathbrachialplexus.com/weblog/index.php

or you can just go to his web log from his home page.

[Jason]

best of luck to everyone