United Brachial Plexus Network, Inc.

Hello Friends,

Here's the update I promised. As a refresher Eric is my 21 year old son who suffered complete BP injury to his left arm July 2000. Had surgery Oct. 2000 with Dr. Tiel in New Orleans. Nerve grafts/transfers involving C5 and C6. Dr. Tiel was very impressed with Eric's recovery to date. Had an EMG which confirmed Deltoid and Bicep starting to come back. Eric can move his arm away from his body against gravity probably about 12" (maybe a little less than halfway to his waist). It's very encouraging of course but a long way to go. The surgery isn't expected to bring about any return to other muscles although his P/T says she thinks he'll get some triceps. It was pretty much confirmed that he will not get back use of his hand. There is additional surgery that can be done but is so invasive (moving things from the leg including skin, muscle, nerves, etc.) and the return it brings is so minimal that it is probably not worth the effort. Hopefully the future brings further advancements in this field. As far as Eric's life goes, he gets best pain relief from distraction but every day is still filled with suffering. The only time he gets total relief is when he drinks but pays big time the next day. He is currently a full time college student studying psychology and english and also works 20 hours a week in a warehouse job. He is still struggling to accept his situation and what his future will bring. It has been very difficult for my husband and me because we'd do anything for him. Does anyone have advice on how to react or what to do when he "freaks out"? Not as often as before but every once in a while he really has emotional breakdown, screaming, slamming, etc. One time he even punched a hole in the wall with his good hand. He doesn't want to be on medication, won't go to counseling but yet he needs help. I have talked to him numerous times about this board and I think I'm close to getting him to participate. He asked me to post the question about finding physical activities that he might be able to do. Anyways, I know this is lengthy so I'll leave it at this. Love you all!

Hiya Nancy and Eric;

Yeah its hard for someone of his age to cope with this life-changing injury...I well remember meeting a young lad in Stanmore (the specialist hospital in the UK for bpi's) who was 18 yrs and had all 5 major nerves avulsed. His mum and his grandma, who he lived with, used to visit him everyday and all 3 would sit and cry, sometimes for hours. It was awful for the simple fact that we all just didn't know what to do to help them; we were all new to the injury ourselves. I have often thought of him over the years, and wonder how he got on. Hopefully, he picked himself and his mum and gran up, and made some positive moves towards his future as a new person, like your son very definitely has.
Eric sounds like he is a real positive kind of person; studying full time AND working..blimey, I could never manage that with both hands! He seems to me to be getting on with life and coping fairly well...he is still very new to the injury, so the odd episode of explosive anger now and then is only to be expected..I think we bpi peeps ALL get that somtimes.
The surgery thing can be a problem; should you go for it...should you leave it...to be perfectly honest, (and this might well upset a few people,) I think sometimes surgery causes more probs than it cures. It gives false hope of a useful recovery in most adult cases of bpi at the moment. You have to at some point say enough is enough; if the surgeons can't give you back a fully funtioning arm, why bother? It comes as a certain kind of relief to admit to yourself that it almost definitely won't, then you can put it behind you, move on, make the most of and be positive about what you have, Once you have come to that decision, it becomes a lot easier to come to terms with it.

All of us lead pretty full and active lives; having lost the use of one arm really isn't a prob; look at Jenny with her horse riding for instance, and I have personally met so many other people with bpi's who hold down demanding jobs, raise families, ski, bike ride to name just a few. Eric, you are more than an arm; far more. It would be great if you could persuade Eric to post here Nancy; I think it would help him a lot to talk to other people...I feel like I know him already! ;0)..as for coping with seeing your son go thru all this; well, speaking as a mum myself, I do know how heartbreaking that can be...and my heart goes out to you...if you would like to 'talk' more, please don't hesitate to email me...sorry 'bout the long reply...all the best...Liz xx

Hi!!

I know exactly what you ar going through! My son Ryan suffered a TBPI last February. I am dreading the one year "anniversary". He avulsed all 5 nerves and had a very lengthy 14 hour operation (that's another story). My son Ryan is 11 years old. Anytime you ever need to talk please e-mail me and I'll give you my phone number or I could call you anytime. As we all know, some days are better than others. Sometimes as a parent you have to be the strong one and push aside all your fears and anxieties and when they finally surface it can be very hard. I know! Today happened to be one of those "bad" days for me. You know where you just want to crawl under the covers and stay there for a week! It's good to talk to people that have been through this. I would keep trying to encourage your son to visit the board. Sometimes it's the only thing that can make you feel better, just knowing that your not the only one going through this. I find that helping others has helped me. Does that make sense? I know it's hard to see Eric when he has his bad days and his temper flares. Ryan doesn't have a temper but his way of dealing is withdrawing from everything (he gets this from me). He has isolated his friends and has given up on any sports. When we went to the camp that was offered this summer, it was a godsend. Ryan for the first time since his accident felt "normal". If you have a support group in your area encrouage Eric to be a role model for the younger children. I am so glad to hear that he leads a active "normal" life. That is one of my biggest fears about Ryan is wondering what he is going to do as a career when he gets older. All of the jobs that he always talked about (bricklaying, carpenter, heavy duty equipement operator) seemed impossibile. If Eric can work in a warehouse (my husband works in a warehouse so I know how physically hard it can be) then I believe Ryan can do anything also. Sorry this is so lengthy, but trying to help people cope is dear to me! E-mail or call anytime!

Lizzyb,

I read your post regarding surgery and have to admit to some surprise. You state that if the surgeons can't give you back a fully functioning arm, why bother? but as the parent of a child with a bpi, my perspective is so different! I would like to explore this a bit more with you, if you don't mind sharing your insight?

My feeling is, and has always been, that we will take whatever we can get. Any tiny improvement in function is blessed and welcomed, whether it be as a result of surgery or therapy or time...I have no illusions that my son will ever have a perfectly functioning arm. But surgery has improved his abilities so dramatically, I find it mind-boggling to think that we would have even considered not giving him that opportunity for greater function simply because it wasn't going to be 100%.

I am so curious to learn more about your perspective, as it is so completely different than mine, and from other adults I have spoken with who have lived with this injury. I hope you will consider sharing more of your thoughts.

Thanks,
Bridget

I'm on the same page here as Bridget.
Having just had surgery for my obpi last January at the age of 47 (then), I have had a delightful 10 months of recovery and gaining of new movement and range of motion. I am so grateful for the changes this has brought about in my life. There are so many things that I can now do that I have NEVER been able to do. I do not have a fully functional arm but I am so grateful for the new functions I can now do.
Nancy

I came across this site and was very interested in this. My brother had a severe bp injury about 8 months ago and nobody has even mentioned surgery - they said either he would get use back in time or it never would come back. I didn't realize there were even any surgeries available or this sort of injury. What kind of surgeries are available? He is regaining some strength in his hand but his shoulder droops and has to wear a sling. Any information would be appreciated.

Dear Bridget and Nancy

I hope you don't mind me replying to both of you this way; it saves my poor aching fingers!

First of all, I must stess that I respect anyone and everyone's decision on whether to have surgery or not, and would NEVER try and influence anyone's choice in this matter. It is a decision that always should be made only by all the people/family involved in each case, with the best interests of the injured person foremost, using all the skilled medical advice available. Everyone who cares for someone with a bpi would wish for that.

Each case, both tbpi and obpi, can produce so many variations and combinations of injuries, that it is impossible to generalise about something as important as surgery. The very complexity of the brachial plexus presents vastly differing symptoms, when damaged, between one individual and another, particularly in tbpi survivors. I know that you ladies know all this, but please bear with me; I think I needed to say that here to partly explain what I meant in my previous post. Each person must make up his/her own mind about surgery, taking into account their own unique injuries. Deciding not to have surgery is also an option, and it is O.K. not to have it.

Most definitely any tiny improvement in function is welcome, but how tiny versus how invasive the surgery? I have had surgery in the past which has given me a very weak flexion of the elbow...it is, without doubt, no use to me whatsoever. If I had had more time to consider the surgery 8 yrs ago, and I knew then what I know now, I would not have bothered with it. That is my decision for myself, and I have met many people here in the UK that have also decided not to bother with surgery unless it will produce a USEFUL return of function....sadly, at this time, they can't really make any promises. (There is, however, research here in the UK regarding rejoining avulsed nerves to the small remaining stump from the spinal cord...)

That is really what I was getting at; the price of return of function vs. radical surgery I feel sometimes is too great; eventually, there comes a point when you have to say enough is enough, particularly in adult trauma injuries, and then it is much easier to come to terms with what you have, and move on. Having said all that, I can fully understand why people do go ahead with surgery, particularly in your case Nancy. I remember feeling overwhelmed with emotion when you posted all that time ago about how you could move your hand for the first time. It must have been quite an experience! I know very little of the surgery you had, and how many people have also had a successful outcome from this procedure and I am extremely interested to hear more, as would some of the others who post here I'm sure...if you have time! ;0) There was someone called Scott who used to post who also had some serious surgery and had return of useful function, but these are the only two surgeries of that kind that I have heard about, as opposed to the many others i.e. nerve grafts and transfers. I personally would love to learn more of these.

Surgery for very young children I (personally) think is an entirely different matter. If I was the mother of a child with a bpi, I would be no different I think from all the other mums; I would knock on the door of every surgeon and bpi expert until I had some answers, then make the decisions and probably go ahead with surgery. I think that you guys in the US are far more advanced in this field of peadiatrics as there are far more obpi's there than here. Decisions have to be made for the child's best chance at regaining function, and I have no doubt at all that these decisions are very, very hard for all concerned. Believe me, my heart goes out to you all; I am a mum myself and had to face some terrifying decisions about my son too, many years ago....(not bpi)

Older children and surgery must present a different set of problems; I expect the child may have his or her own ideas about surgery, return of function etc., because at some point they will possibly decide for themselves which way to go on this. All I'm saying here about this is the child should be offered the choice of no surgery as an option. Please don't berate me for this; it is only the way I see things, and sometimes I am not very articulate and these things 'read' all wrong in this message board environment.

I would dearly love to meet you both, and others, so we can all sit and talk about these things; see facial expressions, hear voice inflections; much more friendly!! I am only scratching the surface here regarding obpi; I have much to learn, about all aspects of this appalling injury. Maybe one day, when my health improves, I can come over and we can all have a bpi huddle and a drink together..!! Meanwhile, here at my house (and later in the pub..!!)Nov. 24th we will be having what I think is the first UK BPI gathering...about 12 people...a modest amount by US standards, but it's a start!! I am really looking forward to it...it will be great to talk face to face with people who just, well, know

All the best Nancy and Bridget..from Liz xx

P.S; Hope this has explained my comments a little...please feel free to email me to continue this... I would love to get some feed back....I also hope that this doesn't cause any bad feeling here; it wasn't meant too; anyone who wants to retaliate in a negative manner, please don't....or at least keep it off the boards, just mail me.

This has been a very interesting post all around.

I of course being OBPI and never having the option for surgery when I was young. If I were younger I would love to have the surgery that would allow me to supinate as nancy did.
I was so thrilled for Nancy and thrilled in the way only another OBPI can be. I don't mean to exclude tbpi in the thrill but when you live your entire life not being able to move your arm in so many little ways every little function is like finding a diamond...
Nancy's note at the TCH hospital... I could feel the thrill with her at paying the tolls.... So for many obpi what ever we get is a thrill because we don't really know what a perfect arm feels like...so with each movement we gain it seem more perfect...

No judgment no advice just my feeling on gaining more movement.
I did find everyone's post valuable and food for thought...
Thanks for interesting reading.

Nancy I do hope your son can begin to accept himself just as he is... He is the same person

I have always been bpi injured but I am not less because of it. I have always been more then an arm. When he begins to feel this way, he will begin to heal.
Kath