United Brachial Plexus Network, Inc.

I have just read Ellen's post about her son and how well he is recovering and it gives me some hope for the future as I was in a motorcycle wreck on Dec 1st. I have a tbpi and I am now seeing a doctor at Loma Linda for surgery. I am confused about a couple things though. At the mayo clinic they were able to fix all the avulsed nerves and get some motor function back. While some of you here have just got elbow flexion back and the doctor said that was all they could do. My doctor has said the same thing. I am concerned because that is not all she can do. Seeing as how its been proven wrong. Is there any difference in the surgery from patient to patient? is it just the hospital i'm going to? Is there anyway I can tell my doctor that she is wrong but not offend her? Or am I wrong? I, like all of you, just want relief. Any answers would be great

There are so many variables to be taken into account when comparing one persons surgical result to another. Age of the patient has a lot to do with how good a result can be expected, as does the 'age' of the original injury.

Also, on paper, the injuries may look the same. For instance, having all 5 nerve roots avulsed. This could mean they were avulsed pre-ganglionic, or post ganglionic. These differences could mean(and I stress the word 'could')that the surgeon would take a different appproach in attempting any repair.

In Ellen's sons case, (and I know Ellen will almost definitely post here later) as I understand it, his avulsions were not 'fixed' as such, but other things such as other nerves and muscles were re-routed and replaced to regain movement. The avulsions are still there i.e. the original nerves are still unattached to the spine. Please correct me if I am wrong Ellen! :0)

One final thing that has to be mentioned is the skill of the surgeons themselves. Bishop, Spinner and Shin work together, and this fact alone makes them unique in the U.S. and almost certainly unbeatable in being the best there is at the moment for treating TBPI.

So your particular surgeon is probably right. I'm sticking my neck out here, but it is highly likely that alone, your surgeon does not have anywhere near the combined skills that the surgeons at the Mayo have.

If I was in the U.S. and in your shoes, I would try to get to see them and get an evaluation of any chance for surgical repair. It certainly couldn't do any harm, but always always bear in mind that each and every injury is way different from another, even if it seems the same. All the best, and good luck. :0)

Lizzy

Hi Oscar,

I'm sorry if my other post was misleading. Yes, John had all five bpi muscles completely avulsed - so there was no way they could be repaired & work. Instead, Mayo rerouted nerves from other functions to his injured arm. John then had to reteach his brain that when he "thought" to move another muscle, the nerve would move the arm instead.

John does have the movement I outlined, but not anything close to original strength or range. I think muscle strength depends on having more supplemental nerves attached than is possible with the one reassigned nerve...

Re the Mayo team approach - one thing that sets them apart is that each of the primary doctors has a different specialty (ortho, hand, neuro). They think independently & then reach consensus as to what approach makes the most sense for each patient. Mayo probably has a pretty long wait-time these days for appointments (word is getting out about them, but also they are apparently handling some of Drs Kline & Tiel's patients since LSU had so much damage in the hurricane last year.) Mayo often sends patients to Dr. Allen Belzburg at Johns Hopkins Hospital, and his team can offer many of the same surgical options. So you might want to add him to your list as well.

Hope this helps - and keep asking questions. It's a LOT to learn!

Take care,

Ellen

I may have been misleading in my question. I did mean re-routed. Sorry. I am 24 in great health and shape, well before the accident anyway. My body recovers fairly quick. I had a lacerated liver, collapsed lung, broken collar bone, broken fingers, fractured foot, broken ribs, and busted knee all from the accident. I wasnt supposed to make it at all but I was up and walking within 5 days and out of the hospital within 13 days. This happened on Dec 1st so I am starting my 4th month now. Thats why I need to get this done ASAP. I am pretty sure If I can atleast get this done I will have a chance since I have defied doctors a bunch of times already. I know that I will never be 100% again. I would settle for 50%. Thats just some of the background from my accident. I have heard of a BPI team in Texas. Anyone know anything about them?

My husband had complete avulsion from a motorcycle accident as well. The neurosurgeon here in Sacramento was not experienced in the injuries and consequently told us to "learn to live his flail arm". I decided (firmly) that listening to just one doctor was not an option. Continue to press your doctor to seek expertise and information, or do it yourself would be my advice, that's what we did.

Is Loma Linda in California? We traveled from Northern CA to Southern CA to Dr. Edgerton (listed on the UPBN network of surgeons). My husband has had two nerve transfer surgeries for his severe injury; at least we have a shot at some movement in the future. No movement yet, but at least has some sensation returning and less pain. It's hard to go through the research, surgery, and recovery, but the time will pass anyway. Be your own advocate, do not take "no" for an answer.

Oscar, I just saw on another topic page that you do live in So Cal. You have a resource much closer than Arizona. Dr. Edgerton is in LA, at the Kaiser on Cadillac Drive, just off the 10. He and his full team of specialists operate a Brachial Plexus Clinic. Look him up; I'll check back to see if you found him. He is also on this web sites resource lising for surgeons.