Amputation

[jennyb]

Hi Tina, sorry to hear about Manse-I have a cousin whose name is Mansur but we all call him Manse...
Jacko is on holiday in Namibia or somewhere exotic right now so he won't reply for a while, but there are other amputees posting on the website he mentioned, here's the message board address http://pub28.ezboard.com/badultswithbra ... usinjuries
I was offered amputation as I too have a full bpi. I didn't want to do it at the time, I felt it would make me feel like a cripple in a way that a flail arm doesn't, still not sure how that works but it's still how I feel nearly 23 yrs later. However, I haven't ruled out amputation completely, I'm nowhere near as self conscious at 44 as I was at age 21, and I think I might have saved myself a bit of wear and tear on the spine if I'd done it sooner, a flail arm is heavy to have hanging off you. Somehow, I'm still not ready for 'the chop' and you should encourage Manse to get counselling about it, you need to be quite well adjusted for what may be a traumatic experience. Jacko's right, it doesn't help the nerve pain at all, but the possibility of a prothesis giving some functional use of his arm might be a good thing. It might be good for him to 'talk' to others both with and without amputations, the message board I posted above has some very helpful people who will be able to share their experiences with him, with the added bonus that many of them are bikers (and many continue to bike, with one arm.....you have been warned!)
You can email me or most other people on this message board by clicking on their name, everyone is very helpful and supportive.
Hope this helps a little, let us know how things go. Regards Jen NZ

[christy]

OK, I have a question here. What is the difference in the babies and the adults having avulsions? No hope, not even with surgery? Katie had her primary surgery with a girl her same age (same birth date and all) when they were 5 months old that was total avulsion c4-t1. She only has had primary and she is doing amazing things with her arm. In fact, in some areas she does better than Katie (who also had avulsions) but I think most of that is due to a more quality of therapy issue. So back to the ?--does the surgeries not work for adults?

Thanks

Christy

[lizzyb]

Hi Cristy

Interesting question...the short answer I think is that there are way too many different 'types' of injury in both adult trauma injuries and injuries to babies to generalise or give a precise answer.

A member of our group was told by a very well respected surgeon that there have been well over 60 different documented types of injury to the adult BP and they are still counting. The causes of the trauma injury are so many and varied and usually are accompanied by other injuries that can complicate things futher. The roll call thread on here gives an indication. As we all know, the number of different surgical procedures for both adults and children has increased dramatically in the last three or four years, and many of these new procedures are used in treating the adults too.

BUT, and it is a big but, as it is with the babies, not all these procedures are or would be any use to all the adults for many reasons. Muscle wastage could be a problem along with other individual complications. Each individual has to be carefully chosen for certain surgeries for a variety of reasons.

I can use my case as small example; my injury was very severe and was complicated by other life threatening injuries which is the case with many adult TBPI. Because of the nature of my other injuries, I was not a candidate for the nerve graft involving the sural nerve from my leg. It is a very common surgery here, I was not suitable for it, but I did have the intercostal nerve graft, which is also a fairly common surgery for the adults. This eventually gave me elbow flexion, even though I have total avulsions of all 5 nerve roots.

I believe that there is always some hope of some regain of function in both adults and children, even sometimes without surgery.

I'm sure someone will correct me if I'm wrong, but I don't think that there is much difference in avulsions in adults v the same in a baby; after all, avulsion means the same at any age, but in either case, the avulsion sometimes leave a stump that can be worked on..but thats something I believe can only be discovered by the primary surgery (what we call exploratoty here in the U.K.)and the surgeon will then make a decision what to do while he or she is 'in' there. There have been cases also when avulsions have been diagnosed by EMG or MRI but have been in continuity when the BP has been examined surgically.

Something that could influence a decision to operate or not is how quickly the effects of certain surgeries are seen. The results from nerve grafting will be evident far sooner in a child where the nerve has less distance to grow than in an adult. The older you get, the more time you have to give up, sometimes years, to therapy etc after the surgery and it could involve time off from work/school or whatever for sometimes very little regain in function, and some people are just not prepared to do that. We can mostly always choose for ourselves and whether we choose to have surgery or not is a different matter...

Sorry for the long winded reply! I probably haven't even answered your question and just gone off subject as usual!! :0) What I should have said was yes SOME surgeries work for SOME adults, but there are many complications and things to be considered first, as with all surgery.

Liz B

PS; HAPPY NEW YEAR!!

[admin]

Hello Jenny. Thank you for your reply to my query. I have been reading the message boards on this site and the UK site for some time now and found a lot of usefull information from experienced people like yourself. I hope that my husband Duncan will eventualy access the site himself but in the meantime I am finding the info on his behalf. I hope that I will receive some more info re amputation when jacko returns from his holidays. I was surprised that you said that you still had not ruled out amputation even after all of these years. I know that in Duncans case or should I call him manse, he is not worried about the body image issue probably because he is older he is more concerned about the inconveniance that the arm causes to his everyday life. He is only 6 months post multiple injuries so he has not had time to really come to terms with his change in lifestyle and I am sure that it must take a long time to adjust to this most painfull and devastaing injury. You are right in suggesting that he has councelling or at least the right support in making this decision hence my request for more information. It is a major decision which is irreversible!. Thanks for the warning about one armed bikers! I have found the website! Unfortunately even if Manse wanted to ride again he wont be able to as he has some loss of visual field due to his head injury and a few other problems as well. Hopefully the vision may improve with time but I think bikes are out for the moment. Thanks again for your support and Happy New Year to all Tina

PS I have just had a preview peek at this message and found that it has been referenced as "guest" I thought I had registered when I sent the first message. To send this I clicked on "reply" should I have logged in first?.

[admin]

Hello Jenny. Thank you for your reply to my query. I have been reading the message boards on this site and the UK site for some time now and found a lot of usefull information from experienced people like yourself. I hope that my husband Duncan will eventualy access the site himself but in the meantime I am finding the info on his behalf. I hope that I will receive some more info re amputation when jacko returns from his holidays. I was surprised that you said that you still had not ruled out amputation even after all of these years. I know that in Duncans case or should I call him manse, he is not worried about the body image issue probably because he is older he is more concerned about the inconveniance that the arm causes to his everyday life. He is only 6 months post multiple injuries so he has not had time to really come to terms with his change in lifestyle and I am sure that it must take a long time to adjust to this most painfull and devastaing injury. You are right in suggesting that he has councelling or at least the right support in making this decision hence my request for more information. It is a major decision which is irreversible!. Thanks for the warning about one armed bikers! I have found the website! Unfortunately even if Manse wanted to ride again he wont be able to as he has some loss of visual field due to his head injury and a few other problems as well. Hopefully the vision may improve with time but I think bikes are out for the moment. Thanks again for your support and Happy New Year to all Tina

[david wilson]

hey tina
just finished your post and i agree with liz that the only good way to diagnose avulsions is to go in and take a look. mri's are about 50% [a coin toss] and emgs are a little better. i feel you need to get to a bpi specialist asap as 6mo is getting to the outside of the window for best results from surgery.even if you decide not to have surgery, if he will regenerate spontaniously it would take 18-24 months minimum till it would reach the lower arm. stranger things than that have happened. i would suggest that you take the time to read back through the forums to see how widely different the injurys, surgeries and results have been. the one thread that is consistent is that it takes a long long time to get down this road of tbpi. i had the same reaction as your husband to my flail arm. cut it off and get me a good hook but it's not that easy or we would all amputate the offending arm and go on but you can see by reading the forums that the most disabling part of tbpi is the pain. having one arm is only an incovenience that can be dealt with next to the chronic pain that some endure every day. the best way to avoid that is to get those nerves back in contact with the brain so they have something to do other than make life a misery generating pain. hope i don't offend you with my rant but i have just faced the same realitys and it is hard to chew sometimes. hang in there
red

[jennyb]

hi Christy-to add a bit to what Liz says about some injuries leaving a stump following avulsion and some not-I think that's what are called pre ganglionic and post ganglianic avulsions, the ones without a stump are harder to repair. Because so many tbpi injuries are pretty violent (my arm was broken in 6 places and I was lucky compared to most) the nerves are far more likely to be torn out at the root, leaving no rootlet to aid grafting and with more often with all the plexus being involved. This also injures the spinal cord which is maybe why the pain is so bad in some cases. Adults nerves don't grow as quickly as childrens and their hands and fingers are much further away from the graft site, so hand recovery in lower root pre ganglionic avulsions is rare in adults, altho most people do seem to get biceps. Personally I couldn't see the point of an arm without a hand so I didn't go for surgery. Things are changing, though, the protocol now is to operate as soon as possible after the accident, one surgeon tries to do it within hours if other injuries permit, and it's often within days or weeks, 6 months is too long a wait when it looks like full avulsions are present. Unfortunately, not everyone can get to see a tbpi specialist immediately after their accident, I've read that for every 5 million people there should be one specialist bpi unit to ensure treatment as soon as the injury happens-and there just aren't enough units.

[Manse]

Thanks to all who have replied to my message re amputation. I know that Jenny and Liz have provided some common sense info and I appreciated the suggestion for caution from David. Duncan has been seen by a bpi specialist on several occasions but as Liz pointed out often the injury is complicated by other serious damage. In my husbands case his multiple injuries included severe chest trauma resulting in a paralised diapragm and trauma to his circulation which now includes a deep vein thrombosis in his axillary vein. Without good circulation it is unlikely that surgery would be successfull and the intercostal nerves are to damaged to be harvested for nerve grafting. But I am hoping to get Duncan back to the specialist to discuss surgery for pain relief. If anyone has any info on this I would be gratefull and I am still hoping for more info on amputation. I am pretty new to this message board and as yet I havent quite mastered the art of sending messages!! The last couple I sent seem to have disappeared so I probably hit the wrong button. I am now going to hit the "post message" button with my fingers crossed Tina

[Manse]

Yipee! it worked! Tina

[christy]

Thanks for the responses. I understand the pre and post ganglion. Katie's avulsions were at the root with no stump so the work was done primarily on the ruptured nerves and then some grafting to the lower sections of one avulsed nerve (c7). She too has problems with her hand but then again she has problems with her elbow as well. two years post primary and she can just recently start lifting her shoulder in a fairly good shrug--once and then it's gone for a long time, guess to weakness. I guess I just thought some of the adults were being told there were no surgeries available at all for avulsions. There is a Dr. here where I live that works on TBPI and he apprently gets to them rather quick BUT takes so long on sending kids out that they normally miss the primary window. And even though he trained at and seems to prefer TCH the ones he sends out he sends somewhere else (he said it was a financial decision to help the parents, we are furnishing him with resource material so the families can have a choice!). I can see where an adult would not have the time to devote so much to their recovery. Most of the kids therapies these days seem to be a full time job, especially the first several years. It takes three of us here to get all of ours in and even then we are pushing the limits sometimes. But yes, you did answer my question. THANKS!!!