United Brachial Plexus Network, Inc.

Hi all. Just an update. I'm hanging in there, going to therapy & trying to regain any movement I can. I've been using electric stimulation & my arm has gotten stronger although the movement is about the same. I can only move my arm a few inches out and forward but I compensate by using my traps. My shoulder moves up then out a bit. I want to give it a year & see what I get back on my own. After a year I'll consider the muscle transfer, since that can be done at any time. The thing is, if I do the muscle transfer, that'll only allow me to bend my elbow. It'll leave a long scar from my knee (where they take the muscle) all the way up to my thigh, then I'll have a scar from my shoulder to my elbow where they plug the muscle in & a scar around my breast where they take some nerves & hook it up to the muscle. I may loose sensation in my nipple as well. The muscle that they take from your leg is similiar to the bicep muscle but its bigger so once they transfer it to my bicep its oddly shaped & obvious that something is wrong, it looks different plus there's a long scar. So I'm not so sure if all of that is worth getting elbow movement. Then I'll need another surgery where they fuse my shoulder to my scapula. Basically they connect your shoulder to your backbone & make it one piece w/metal, its irreverisible & makes me nervous b/c its so permanent. That would allow me to not wear a sling & might give me a little bit of movement. The way it works is everytime I move my backbone my shoulder will move a bit since the two are connected & one piece now. Those are the only options I know of at the moment. Advice, comments, thoughts, anyone?? A

Princess

I hope you get some recovery before you have to make this choice... Thanks for updating us...

Kath

Princess - wow these sound like very scary decisions. My heart goes out to you. I hope that you find peace in whatever decision you make. Good luck to you,
francine

Hiya...not heard from you in a long while; I was wondering how you were getting on.

My thoughts about late surgery are pretty well known; my personal take on this is there is far too much damage caused for so little gain in movement; however, each person obviously has to make up their own mind for their own unique circumstances, and I would and have supported anyone who has made a decision to have surgery, and I always will.

Many people when they are first injured or in the very early stages of coming to terms with this injury will go with any and every treatment, including surgery, in an effort to regain movement however small. This is a natural reaction to any trauma...you just want to be 'normal' again and will go thru anything to get that way. I did when I was first injured and that is why I had the intercostal nerve graft 3 months after injury. Looking back, I don't think I would have bothered although the surgery hasn't caused me any problems, I can't help wondering if I would have regained any movement anyway if it had been left alone.

In the early days after injury, it is easy to make the decision to go for surgery; at a much later stage of recovery, making such is decision is a whole different ball game. I personally feel you are doing the best thing by waiting to see what comes back by using therapy. The muscle transfers in adults are as you say a very invasive procedure with a recovery/results time measured in months followed by up to 2 years of fairly intensive therapy...it's a lot of time to take out of a busy life. At the end of the day, if the only movement regained is elbow flexion, then you have to ask yourself is it worth it.

As time goes by, your focus will shift from 'regain' to 'recovery'...these words do not mean the same thing...I consider myself fully recovered even though I have very little regain of function. The difference might seem a small one when you think about it, it isn't.

Good luck in your decision...please keep in touch and let us know how you are.

Lizzy B :0)

I know of tbpi who had these kind of surgeries but they mainly have some hand use which gets augmented by this secondary surgery. I didn't realise it could look so extreme as your description, altho I know it's very complex surgery.
I think it's a good thing you're waiting to see how things heal on their own, as you may be aware my biceps returned at least 2 yrs post trauma and I had no surgery of any kind and was considered a hopeless case. Liz has commented on her own surgery and I can confirm I have known at least one other tbpi who felt the same.
I can't put things as eloquently as Liz but I do feel that you have gone through a very public process of acceptance and moving through the injury here on these message boards and I think the process will continue. We all went through it and altho we all take different amounts of time to get there, most of us ling term get somewhere we are happy to be. If I was offered surgery tomorrow which would give me more function I would decline it, I feel fully recovered. My specialist actually advised me against chasing a 'cure', he was the person who introduced me to the idea that recovery was very much more than the arm, and that ongoing treatment can interrupt the recovery process. We are all different in what we want and need and only you will know how far down the 'return of function' route you want to go before you feel as though your recovery is complete. You will know in your heart what you really want and need and in the meantime your body and brain will get on with the business of life with what you have now.
Thanks for sharing all this Princess, you have probably helpd others more than you know.

Princess,

Don't rule out amputation as an option. I am 39 and suffered basically the same injury as you, in the same way when I was 21. I avulsed c5,6,7, and severely damaged T1,2. My left arm is completely paralyzed, along with my shoulder girdle muscles, but like most on here I have some bicep motion which is interesting but useless in any practical sense.

I had the usual recommendation to amputate after 2 months, and had the normal reaction, hell no. But after 6 years, a nerve graft, and much therapy, my rehab doc contronted me and said I really needed to make a "definitive" decision. Harsh? Maybe, but it made me think. I had looked at alternative surgeries, herbal treatments, pyschic healing, the whole gamut. But at one point a harsh reality confronts you. After a number of years the muscles in the non-enervated limb will solidify into tendon and can no longer be enervated in a way that gives you any meaningful fine motor control, if at all. This is the point at which a decision needs to be made.

I decided I needed to move on with my life. As we all know, a flail arm makes it hard to enjoy any number of activities. Things like dancing, bicycling, hiking, cooking, sleeping, making love, etc.... I decided after several months of careful thought, many beers, and a talks with a helpful therapist to have the amputation.

It was probably one of the best decisions I have made in my life. I have *never* regreted it. When I am out on the dance floor, diving, cycling, etc, I am so glad I don't have that arm flapping around, getting in the way. I would recommend the same to anyone. It is very liberating and will allow you to complete your recovery and move on. I see people on here who have kept flail limbs for 20+ years and wonder how they could do it?

Try everything you can, exhaust your options, then think about getting the amputation. I have more function from my fused and amputated arm than I ever had from my flail limb.

As for the boyfreind. Fear not. There are plenty of caring loving people out there that don't care about your BPI. I have had a few girlfreinds over the years and now have a wonderful wife.

Good Luck

The decision to amputate is not an easy one, but as with Pegmatite, I agree that it is a most liberating event. I did mine 11 months after the accident (21 years ago), and it let me move on. I soon figured out that I was a one-handed person with or without the arm, and that I needed to focus on getting my life back. No one can claim it is easy but it is sure worth it.
My life is now as 'normal' as anyone. I'm married (after the amputation), have 3 kids, a career, sports, and am in excellent health.
Good luck with your decision Princess and do not hesitate to mail me if you want to go into this in more detail.

Deciding to amputate is definitely not easy. One of the clinchers for me was an incident backpacking. I had hiked 9 miles into the Olypmic Mts in moderately cool weather. Once at my destination my arm was bothering me so I decided to do some range of motion excercises. While laying down I lifted my arm above my head and within a few minutes was in the early stages of hypothermia. All of that nice cold blood in my arm that wasn't circulating and being warmed properly poured into my chest cavity. Chilling me very quickly. There were a few other incidents but that was a key one. Backpacking is much easier after the amputation. When it is cold I can put a wool stump sock on, I don't need complicated slings that get wet and dirty, I can have the sleeve of my clothes shortened and wear them in a normal, comfortable way, I don't have to worry about injuring a limb and not knowing until I see blood dripping on the ground (I used to do a lot of off trail hiking as a field geologist), I don't have to worry about frostbite on a limb where I have no feeling or sensation. The list goes on, and any vigorous activity will have it's own list of issues. Ever accidently drag your hand through boiling spagetthi(sp?) sauce? Sure, if you pay close attention you can avoid some of these things, but having to worry about something that is a burden at best is kind of a waste of time IMHO.

Body image is certainly an issue, it took me a while to get used to it but I had the help of a very good therapist and a supportive family. A plus - Not being bugged by people asking how I "broke" my arm everytime I was at the grocery store was a definite plus As an amputee people quit making assumptions that you are recently injured and then trying to make well intentioned but annoying chit-chat.

I feel that once I made the decision and had the amputation I was done trying to "get better" and started living a "normal" life instead of having all my energy focused on how I was going to fix something that could never be fixed. Recovery is all about maximizing your overall function, physically and mentally. You are now a one-armed person, at best you will get minimal mobility out of your bad arm. You now need to decide if that level of mobility enhances your function or inhibits it. IMHO if you plan on doing anything that involves complicated, rapid, or extended physical activity, you are better off having a below elbow amputation and shoulder fusion.

Please feel free to email me if you want to talk about it.

Princess,

Great to hear about your progress and our thoughts and prayers are with you for continued improvement over the next year and beyond.

Don't forget about the possibility of the two stage muscle transfer that John had at Mayo (I know insurance is an obstacle). The second one was in April. In the past couple weeks he's been able to "fire" one of the transplanted muscles, move its associated transplanted tendon and cause movement in his hand. Not a lot of hand movement yet, but we know the whole process will take another year to a year and a half. The encouraging thing is that this first movement is actually a little earlier than predicted.

All the best to you!

Gene

Does anyone know how to feel better about this injury & not allow it to make you depressed, angry & full of pain??? I've been injured for 1.5 yrs & still struggle everyday, emotionally, physically & mentally. Please share what helped you all. I want to be happy again!!!