United Brachial Plexus Network, Inc.

Hi bigsel here, I've been on this site for a little while now, & i get realy jelouse when i read about all the people in the USA seem to be getting better treatment than us brits, have they got better specialists in this field? don't get me wrong, it's great reading about how other people are coming along & some of them even making some kind of recovery. Should i feel like this? am i the only one? or do other bpi's feel the same? it would be interesting to read your comments.

bigsel
scottish tbpi

Hi bigsel,

Tougth one this,From what i'v read the Americans seem to think where the ones with the superior docs,it prob depends on how much recovery you have to what you beleive.

I talked to my physio in detail about this recently,but basicly the amount of function you regain usually depend on certain factors :eg surgery performed asap what damage there is, what nerves were involved,your age , your weight, your fitness,do you smoke,your attitude but with out doubt for good results you prob need to have some movement in the lower part of yor arm,(wrist/hand) .

from what im told if your arm is totaly flail ,realisticly your never going to have a working hand, with out serious mouscle transfers.

the common approach is usually to have the nerve transfers done asap,its quite unusual to not get your shoulder,bicept working to some degree or at least be stable,but the amount of recovery is reduced by all of the above mentioned things,then i beleive after 3 yrs they will have a clearer picture of what to do next ie mouscle/tendon transfers.

A lot of people expect to have a normal arm afterwards and im sorry to say this really isnt going to happen,so people get used to living one handed ,my advise is keep pushing for more treatment and dont give in.

I saw a guy in hospital last week and after 3 yrs post op he couldent move his shoulder but hed had same surgery as me by same doc, this is how we got talking about recovery results.

I once offerd to meet a guy that was tbpi to let him see that there is a good chance of recouvery, but my physio didnt think it was a good idea as it was giving out false hope.

as for getting back on topic , feeling jelous is a natural reaction , I just feel personaly that i would have every avenue exasted before i gave in,i know for a fact that my surgeon was not keen on doing the cross neck transfer on someone (never been done in europe @ time) but the guy pesterd him so he did it,a case of he who shouts loudest gets heard

All the best bigsel

karl

blimey mate, where on earth did you get that info from?
We have some of the best surgeons in the world in the U.K. Quite a few of the surgeons, drs etc in the U.S. and other countries had their training in treating bpi here in the past, particularly in Stanmore hospital in England.
The only surgeon (to my knowledge) to have successful results re-connecting avulsed nerves to the spinal cord (only in rats so far..) is based in the U.K. Please don't think that we in the U.K. have inferior treatment of this injury, because it simply is not true. I'll email you Paul; please don't take offence at this message...! ;0)

Liz b

hi bigsel, yes, when i found these fora i came to the same conclusions as you, initially. I had turned down surgery all those years ago and now i thought....i should have had it! Now I know my specialist was just being realistic, I probably wouldn't have got hand recovery then and I probably wouldn't now, either, wherever I got treatment, my injury is too bad. I wasn't willing to undergo surgery for anything less than complete hand/lower arm function. I think I jumped to that conclusion because the info etc here is mainly about babies injuries and surgery, they tend to have a much better success rate than we do mainly because of the shorter distances nerve regrowth has to travel. Since then I've found that this surgery is fairly new in the states and they learnt from tbpi specialists in Europe, for instance Rolfe Birch from Stanmore, UK, regularly travels to the states to teach surgeons his techniques. There is the added problem for some US peeps of not being able to get any help at all, not even PT, if they don't have insurance, read some of Mindy's posts....she was wrongly diagnosed(with a bpi??? diagnosed as RSD?) for 2 years and now can't get insurance because of the injury, so both herself and her children now have no health insurance, she's now found out what is wrong with her arm but is unable to get any help with treatment. I don't know what the situation in Scotland is like, in england i found that every medical person i spoke to knew what a bpi was and what effect it was likely to be having on my general health, that made life as a bpi wearer a lot easier. I've only been in NZ a year but i'm finding the same applies here too. Another point is that there are far fewer babies injured in the uk (0.5 per 1000 births) so the surgeons in the UK are mainly adult tbpi specialists, there are roughly 4 times as many adult tbpi each year in the UK as injured babies. As Karlos says, a flail arm tbpi with a total or lower plexus injury may be unlikely to recover hand use despite surgery. So altho I think there are differences in the systems themselves, quality of surgery/treatment is i think pretty similar, but the UK surgeons on the whole tend to work more with adults. As Karlos says, you may have to shout a bit, that's always a factor in a universal health system. I currently get free health care here in NZ because my husband is a student, but once he starts working we will need health insurance and it may not be easy or cheap with an injury like mine....

Don't feel jealous about us here in the US. Half of the doctors don't know what a BPI is and you have to search high and low to find one that does. Every one that I have seen have told me that there wasn't anything that could be done, except wait and see what you get back naturally, in two to three years. I was 61 years old when I fell and caused the TBPI and now I am 63. I had one surgery. Then told by another dr. that nothing was actually done during the surgery, but that there was an incision and a look around and closed back up. I was denied therapy because there was no response and my arm was completely flail.I have had a lot of recovery. I think it was because I live alone and had to do everything by myself. Who actually knows why? Now another dr. wants to do a shoulder fusion in about 6 months. I still have a torn rotator cuff and I think this is why he wants to do the fusion. But as I said earlier, I don't think I will have it done. From what I have heard the UK has the best doctors and I was jealous because I couldn't get to them. I got so tired of being told to wait and see. Rhoda

swings & roundabouts bigsel with this injury. personally in the uk 14 years ago i was transferred straight to a bpi specialist. (withn 2 days) & most others in uk ive spoken to have been referred quickly at the time of injury. the problems come in the uk when you get other problems with the arm.........ie waiting lists arghhhhhhhhhhhhhh. so both systemns seem to have there faults

it really depends on how much damage youve done to how much function you get back, even with the best surgeons if youve avulsed to many nerves your arm is fked!!

i to was jealous when i first came to this board because people were talking about movement in there arms..........(i want i want!!!) i only spoke to jenny who also had a totally flail arm. but theres problems attached to having movement on the rest of the body & i came to the conclusion were all in the same boat even if we do get a little movement back. at least having no movement i dont have to do physio daily or any other daily therapy other than lifting beer with my "good" arm.

take care hazel

rhoda, wait & see is the most annoying thing to all bpi, and it happens just as much in the uk. They often don't like to operate on a stretch injury in case they actually impede recovery-i'm glad to hear you got some recovery anyway! did they ever tell you what they found when they looked at the plexus, so you know what kind of bpi you have? like hazel, i was amazed to find there are tbpi injuries less severe than mine and that some peeps could use their hands....wow! wish i could find a tbpi with their arm still on who's as long term as me (most amputate with a flail arm long term) so i could find out what's in store for my future, my good arm shoulder is so bad today (ummm i did one arm chin ups yesterday with the kids....yes i know i'm stupid :0)i can't put the kettle on...so hazey lift those pints one at a time only, you don't want to be overdoin it mate! take care all wherever you and your bpi may be :0)