United Brachial Plexus Network, Inc.

thank you jason. i checked out the web log and saw your surgery on there. i'm glad you're doing well and that you feel you made the right decision on going with nath. you mentioned on page 8 there is more info - i couldn't find it. what is the topics name or can you please send me a link to the thread?
thanks jason - would love to read your mom's comments on there if possible.

Hi

You won't read anything negative about Nath (or any other Dr) on here as UBPN won't allow it, but I will say, please investigate thoroughly any Dr that your boyfriend might consider if he eventually decides to go for surgery, and I do mean thoroughly. What he is considering is no walk in the park, believe me, either physically or psycologically.

Your boyfriend is very unique because he is bilaterally affected and considering surgery after 10 years, and I'm afraid he may be a target for a surgeon who would want to use his case to further his/her career and not truly have his welfare at heart.

Can I ask why he is considering this after so many years? Particularly as you say he is regaining more movement lately? Be honest, are you sure it isn't because you are pushing him too hard and getting far too caught up in what you have read on these boards?

Don't get me wrong, I don't blame you for one second for getting excited about reading some of the successes on here, but please always bear in mind that these injuries are extremely complicated, totally unique to each individual and what will work for one person certainly won't neccessarily work for another. Getting washed away on a wave of enthusiasm isn't such a bad thing, but always beware of creating false hope. False hope is cruel in the extreme.

I hate to be brutal here, but I am a bit worried about your motives. You have been together for only a year, so you would not have shared the most awful days/months with him when he was first injured, nor gone through all the psycological trauma that we all go through when injured, and he would have gone through far more than a lot of us.

The man you see now is the result of years of coming to terms with this injury, and pushing him too hard toward surgery could open up a huge can of worms for both of you, although I must admit, it is your boyfriend I am worried about.

The fact that you were concerned about what your parents and family would think of his hands rang big alarm bells with me. If my boyfriend, or any of my friends thought that way for even a split second, they
would be sent down the road, no mistake.

I'm sorry if the whole tone of this post is a bit sharp, but I hope you can appreciate my honesty by posting how I feel. I have been the Chairperson of the UK TBPI Group charity for 3 years, and have been studying these injuries for years before that. We have a very active group in the UK and I have spoken with many people worldwide who have considered and gone through the kind of surgery that your boyfriend is thinking about. The surgery is very long, very difficult and not always successful. You both really have to bear this in mind all the time. The period between surgery and some regain is measured in many months, sometimes years, and involves huge amounts of physiotherapy, during which time, life is kind of put on hold while all the focus is on the arm. It takes much dedication, and as I say, the results can never be guaranteed.

I just want to end by saying, are you sure he has those avulsions? It is extremely rare, in fact in all my research I have never come across it, for someone with that many avulsions to regain any truly useful function without surgery of some kind.

Did he have a full programme of diagnostic tests in the early days? EMG's etc will always give a very good indication of what nerves are damaged and how severely, but they can only indicate. Actually 'going in there' for a look can truly determine the damage, and most if not all surgeons agree on that.

I sincerely wish you both luck with this, and hope this post hasn't upset you, but just made you think a bit more about what you are doing. It would be great to get a post from your boyfriend too on here, maybe he could tell us more.

Lizzy f

I have to echo what Liz says about pushing anyone into treatment after so long unless they really want to do it for themselves, not their family or anyone else. If I decide to get treatment or surgery now, I'll do it, but the idea and motoivation would have to come from me, it's nobody else's business including my husband. And that's me, with no use at all of my bpi arm.
It's a good idea that you are keeping a file of possible doctors, I do hope you are basing it on something other than the doctor's bedside manner. For surgery this complex a solid background of experience over decades would be what I was looking for, experience in an injury like mine, ie adult tbpi ten years old or more. Some of the world's foremost adult bpi doctors are grumpy old buggers!
It's also a good point that Liz makes about not being able to criticise doctors on here, there have been cases where very expensive surgery has had poor results and where the follow up care has been absent to neglectful. The posts about these things are removed. One woman was so persistent that the doctor involved threatened to sue her for posts here, but he still refused to help her after the surgery she had left her worse than before and unable to work. He is a prominent doctor famed for his lovely bedside manner, but believe me, that manner evaporated quickly when she asked him to fix what had gone wrong.
There is one other thing that's been bothering me recently, that is a spate of posters that never post here before their surgery and post afterwards 'advertising' their doctor. They don't seem to post for any other reason or in a support capacity, and they usually are very recently logged in. This used to happen on the general message board to the extent that it was brought up at an international symposium of bpi docs, it was impossible to get solid information about doctors without a barrage of adverts for one particular hospital and doctor. For a long time there was the mistaken belief that there was only one 'best' hospital, this obviously affects support very negatively. Check how long a person has been logged in by clicking on their name and beware that bpi is big business involving, for some doctors, million dollar incomes. I apologise to any genuine posters, but I do have to say 'advertising' is creeping in on here.
Please be aware that a doctor who never turns away any surgery may not have your best interests at heart. Ask each doctor how many cases like yours he has long term results for. Ask to speak to others who have had the same procedure.
And good luck!
Jen NZ

Hi Jenny, I was hoping you can email me the Dr's name.... just incase I need to look for someone else for my "after surgery" care.

thanks everyone and thanks for the link jason, it worked.

jenny, others have also emailed me off the board and i appreciate all the info on these drs, good and bad. we've talked through all the things you bring up about doctors - and of course experience and honesty about expectations is paramount. actually had a conversation about this a year ago, bc we don't really want a cowboy doctor using us to hold their title.

until we actually know specifics, we're not at all sure that we even would want to go through with surgery. we're just merely making the initial contact with doctors to see what the deal is. he's decided it's a good idea for people to at least be aware his case is out there, rather than remaining invisible and waiting for advances. i agree and i'm trying to *help* him with the grunt work and be as supportive as i can - sometimes we all need someone to lean on. sometimes a little love and support gives you the strength to deal with life and it's disappointments. i need his support too sometimes. as for having surgery - that would be a whole 'nother discussion. right now, it's baby steps just in opening up the whole idea again, which as you can imagine, is huge.

i was just being honest earlier when i said this is a huge thing for everyone in my life, my parents included, and i love them all, so i want to protect them all naturally. of course i can't ultimately, but it's not my intention to hurt anyone here. no one is doing anything at anyone else's expense, please don't worry.

lizzy - yes, those avulsions are all correct as of the early diagnosis and were made by more than one dr. initially they had told him he would get his hands back completely, but that turned out not to be the case. he thought it would be temporary at first. in terms of all the other stuff, and i mean this with no disrespect bc i do appreciate your concern, i think there is a fine line between caring and pushing. to me, caring for someone's best interest and pushing them to do something they don't want to are ultimately worlds apart, trust me. but i do think you might consider that, at this stage, it takes guts to be in my position as well and not just ignore his situation like the rest of the world does. i don't appreciate the insinuations - if i was a mother this would be unacceptable to say to me, but since i'm "just" a girlfriend, i suppose it seems i have less of a right, nor any brains, to want the best for him. yet i spend all my time with him and am the closest person he has! i don't know too many people that would have the courage to take on the difficulties that come with the territory unless they had to. for me, it's the right thing and i'm doing my best to handle it well. we've worked together for 3 years, btw, and only dated for 1, so we're good friends above all else. i actually don't want to continue talking about or defending our relationship online, i thought it would be a more supportive environment for those with bpi and also those who have loved ones with it, but i don't feel that is the case any longer. there's a nicer way to say things lizzy, and a more sensitive way! so i welcome informative and supportive posts but enough with the questioning of motives. neither of us are going into this blind here and we'd never hurt each other. we are being careful. it's not easy, as you know, but we are careful to check in with each other and keep things light overall when possible. it's all very personal, and i don't wish to have to continue to explain myself beyond that - it's just too hard on this type of impersonal medium to convey who we really are and the nuances of it all...

as for getting him on here to give you more info on his case - if he wants to it's up to him, i am pretty sure he's reading this, but hasn't jumped in yet bc it's not his style. since you are very knowledgable on this subject though, i think it's a good idea for you to know about his case too. i will post next his original diagnosis.

again, thanks for all your support and wise words - i too don't want you to be upset - like you, we're just trying to make sense of this world together.

good luck!

here's the diagnosis:

I suffered a significant stretch injury while
> unconscious in January 1996,
> resulting in bilateral brachial plexus palsy. Upon
> examination by Norick
> Janian, M.D., my Neurologist, it was found that root
> avulsion had taken
> place from C6 to T1. The most severe damage residing
> in the C8 to T1 levels.
> These findings are dated April 4, 1996.
>
> I received an MRI on April 26th of the same year.
> The process found a thin
> elongated area of decreased T1 and increased T2
> signal within the cervical
> spinal cord, extending from the level of C5 to the
> top of T1. The axial
> images could not rule out the possibility of cord
> edema or myelomalacia.
>

"it was found that root avulsion had taken
place from C6 to T1. The most severe damage residing
in the C8 to T1 levels." I am trying see what is worse than an avulsion. If there is an avulsion from c6 to c8 what was happening that was even worse damage from c8 to T1 asI thought the avulsion was as as bad as it could get for an area.

His effects to me sounds like classic central cord syndrome. originally when he went to hospital did he have any other symptoms like weakness in legs or a cathetar as generally those symptoms clear up but e residual damage can be left in upper limbs, hands usually, (in shoulders in my case). Traumatic Bilateral tbpi is quite unusual.

Anyhow sorry you seem to be offended by peoples opinions but a lot of people here have experience beyond 20 years of the world of tbpi and really are trying to help. Muscle atrophy is difficult to reverse if the nerve connection isn't there and some doctors will tell you the muscle motor endplates die after a year or two. EMG's generally give you an idean of whats firing. But I am only talking from my own experience. Muscle/tendon transfers can be done at any stage and as I haven't researched any hand recovery there may be something for him. And fingers crossed for stem cells! excuse the pun.

Hi Quichelorraine
Sorry if you've been put off by some people's tone, possibly including mine! We really are trying to help, and you must appreciate that however well you know your boyfriend's injury, you cn never know how it is to live with this yourself. I think the paragraph that may have caused some concern to Liz (and a couple of others) was this one...

........" 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..."

as a person with a bpi I truly do not see what your parents or other family have to do with his injury. It's really hard to understand what people mean in this medium, and very easy to misunderstand, that paragraph does read as though you have concerns about what your family think of his injury, and that was what made me react and presumably the others who have made similar comments. You will probably understand how a message board full of people with bpi might react to such a statement- it reads as though you want him to get something done about the injury in case yourfamily don't like it. It reads as though the motivation to get something done about his injury isn't coming from him. As I said, it's easy to misunderstand on the internet, if that wasn't your meaning I apologise again.

Thanks for the diagnosis info, you did originally say he had avulsions from C5 to T1, but from your second post I see that's not the case, I hope there's something the docs can do to help if that's what he wants.
I hope you continue to visit here and ask questions, we can be a spiky lot occasionally. I hope you can understand why we reacted as we did-some people here have lost relationships because of the injury-ok anyone who judges someone by how well they use their arms probably isn't worth having, but it's a sore point. All the best to you both, let us know how things go!
Jen NZ :0)

ps...just seen your line saying you just want "the best" for him. Sorry quichelorraine-my non working arm IS the best for me, it's what I have to live with. You probably don't mean to offend, but wow it doesn't read very sensitively!

hi jennyb,

i know it's a sensitive situation for everyone involved and i certainly don't mean to offend you or anyone else. you see, there are so many factors that i'm up against with my family already, being indian, and bc he's vietnamese, etc...(guess you don't see that very often)..none of these things really matter to me - but there are many cultural barriers that the older generation hangs on to, and being immigrants, my parents had a real set idea about what they thought their kids would do, job wise, etc and i've recently quit my job and am following my passion, which they are already nervous about....so things have been tense between us besides all this. i haven't followed that path that most indian americans do...and they are disappointed in my career (i'm not interested in making money!) and in my personal life (i'm sure they'd love to see me date an indian - for them their culture is slipping away!), so there are many contentious points between us and as someone from a close knit family, i'm just concerned that our relationship is on the line (me and my parents). also, my boyfriends bpi was caused by a drug overdose, heroin, indirectly, and even though it was a long time ago, that kind of thing carries a certain stigma with mainstream society no matter how long ago it was, and again for immigrants and older people, my parents, this is all a lot to take in at once...not only the injury, but the way it was caused, which is tied in their minds - it's scary for them. i on the other hand am sometimes scared for different reasons, bc we are close to taking the relationship to the next level, possibly marriage, having a family some day etc. and i just wish they were more open and that i wasn't giving them what they perceive as a hard time. but i am in the process of letting that go - just wanted to let you know it's a lot more complicated and not just about the injury and our future together that they're worried about. so i guess i've been freaking out lately about a lot of things, for both of us. we're both in our twenties and still have a lot to figure out about ourselves, so it's just a rough time. anyway, sometimes i wish he could have the only one thing he was ever truly passionate about, and that was playing music. it's hard bc since i'm embarking on a journey as an artist, he knows what that's like and we have great conversations about it. and sometimes i can see and hear in him a desire to create music again. since it had been a while since anyone had been supportive of him as far as what he wants to do with his life (which is currently computer related, something he's good at but not fulfilled by) and i think it's important that he have that. he's actually a web developer and IT person for the same company we both work for. i'm not saying by any means that he has to, but he wants to see what his options are and i'm by his side for that. i definitely check in with him often and he knows that i would never want to push him either way. frankly, the idea of surgery scares me, with all its variables. i just want to keep him safe, and surgery is anything but...

for now he's just making calls and doing physical therapy again. most of all, we love each other and this is only a small part of our relationship. we are in love...which is scary but also thrilling. so, forgive me if i've spoken in haste, my intentions are not to upset anybody, it's a tumultuous time, bc i've recently moved to be closer to my parents and everything is hitting up against each other. he doesn't really care about my family and what they think, he's clear about who he is and is not susceptible to such rubbish as what other people think - but i'm still careful to make sure he knows that i care for him no matter what...
anyways, i'm sending good thoughts your way and although he's the one making all the calls and writing the emails, i'll let you'll know how things go.. thanks for writing jennyb.
oh and when i say "best" i mean i want him to know what his options are. it's hard bc this is so experimental and no one really has any answers. i just don't want him to regret 10 years from now not having known what was out there...i know in some ways he feels that he let the last few years slip away. i hope this sheds some more light on everything. he's a very self assured, smart, confident person with a ton of friends and someone that most people look up to...he's the kinda person where you have to earn his respect - he's very opinonated and witty. just someone you really want to be around and i know that he's comfortable with who he is and that that doesn't come overnight. i don't see him in terms of his injury ever, i see him as a person, just as he doesn't see me as indian, or anything else i may happen to be, but just as a human being.