United Brachial Plexus Network, Inc.

Bp Operation after 2 years should I do it?

I am right TBPI from off road accident 2 years ago.
Full root avulsion c5-t1
4 months after the TBPI I have done bp operation trying to repair the nerves with grafted, but 1.5 years
After the surgery I have no use of my arm and I just get some very unpleasant pain from
Every touch and movement (tinuel sign).
I was coping with my injury ok and I was thinking of a deadline (let say 3 years) for chopping it of
3 weeks ago my doctor called me and told me about a new procedure that he thinks can help me.
(Taking the gracial muscle from the leg with blood supply and nerves and use it in the arm).
I am from Israel and so far this Nero procedure was done only twice…..

My biggest dilemma …. Should I do the surgery?

My points:

1) Let say the surgery is a big success and I will gain movement in the muscle, what are the benefits I will get from it?
I am talking about functionality...can this mussel make real improvement in my life?

2) 2 years with no real recovery….I think the train is long gone….

3) Healing time and going back to work ASAP – this type of surgery is much more intensive then normal intercostals nerve graft surgery.
I heard that you have to stabilize your arm for 6 months…..????

4) Experience – this is only the 3rd time that this surgery will be preformed in Israel, should this be a factor?


Any info and thoughts are more then welcome.

Hey Ami, its Courtney from the states! Here is a link for you to look at. http://www.medscape.com/viewarticle/480078 I have NOT had this procedure but many on here have, I dod believe that this is becoming a regular, for lack of a better word, procedure for BPI peeps! I ahve talked with my surgeon about having it done. i have heard great results with it.

There is a younger guy on here, like 16 maybe, who had this done..... I cant remember his name, I am sure he or his mum will share about it with you. They have been very pleased, to me knowledge.

Court xx

Hi Ami,

Make yourself comfortable - go get a cup of coffee & then start reading this longwinded reply.

I think Courtney's referring to my son John, who's now 17. And the article she referenced was co-written by our doctors (Shin, Spinner, Bishop) at the Mayo Clinic in Rochester.

Like you, John had all five bp nerves avulsed in November '01 so nothing could be done without transferring other nerves over. He had both gracilis muscle/tendon/nerves used in two separate operations, February & April 2002. The nerves transferred to help fire these (& other) muscles were:
- crosslateral C7
- phrenic
- four intercostals

One thing you wrote that confused me was that your previous surgery involved nerve grafting. That would only work if the nerve being grafted onto was still plugged into the spine. With all five nerves avulsed, I wasn’t sure what exactly was being done with your surgery. John had both transferred & grafted nerves. The transferred ones stayed plugged into the spine but the function changed (with training). i.e., one nerve taken from his right arm needed to “learn” to power the left one instead. The phrenic nerve originally only fired when John made a coughing motion. He doesn’t have to do things like that anymore to trigger muscle response. The sural nerves were grafted onto some of these transferred nerves to get quicker contact with the target muscle.

The gracilis procedure is called a Doi (double Doi if both are used). Apparently it's fairly common in Asia, but not many doctors perform it yet in the US. One advantage of it is that since a new muscle is brought in, the time lag between original accident & surgery isn't such an imposing factor. But I don't know what the outside time constraints are.

The surgery is very complex: each of John's operations involved all three Mayo surgeons working as a team, & duration of ~10 hours. The surgeons' specialties are orthopedic (including hand surgery) & neurosurgery. I'm not sure in Israel who would do it - and does that doctor work alone or as part of a team? Can you speak with the previous patients & see how they’re doing now?

It took ~ 5 months after 1st surgery for John to bend his arm, and 5-6 months after 2nd surgery for him to begin moving his fingers. He had to keep his arm immobilized for ~4 weeks after each surgery - but beyond that it was very important not to let the arm stretch down or bend back (such as might happen in a crowded hallway at school). A splint does fine. And at some point he was able to just let the arm hang down naturally – but I can’t remember when that was OK.

You asked really good questions – hopefully some have been answered above:
Functionality. What’s tricky here is that the ultimate degree of recovery (movement & strength) is completely in John’s hands now. And he’s already gotten pretty resistant to the extent of daily therapy he should be doing. All that to say, a cautious prediction would be he’d have the ability to grasp something like a soda & bring it up to his face. Not much in terms of functionality, but HUGE in terms of pain management. John was on massive amounts of painkillers until the movement started coming along, and then the pain signals kind of backed off – since the brain thinks “move” and the arm indeed does. John just takes one pill/day now. So my perspective is that even limited movement is very worthwhile since the worst thing about the whole injury, all along, had been the debilitating pain.

I think it’s critical that a very experience team of doctors perform this surgery. Of course, I don’t know how doctors become “experienced” without starting somewhere! But it is very complex surgery.

There is another person from Israel who has posted on here. Would you like me to give her your email address?

Finally, should you come to the US, I hope you'll consider including the Mayo Clinic on your short list. Not only are they rated very highly (#1 in neurosurgery & orthopedics in a recent U S News & World Report), they're also among the least expensive.

The UK surgeons are also highly regarded & travel expenses would be less – but I’m not sure what procedures they can offer.

Feel free to contact me directly if you'd like additional info.

Keep us posted,

Ellen

Thanks Ellen you were the one I was refering too! Ami hope her insight has helped a bit! Keep us posted on how you get on!

COurt xx

As the others have told you; the mussle transfer is not only possible, but fairly common for the Mayo crew. The problem is whether you have the nerve viability left to hook a gracias mussel transfer up to. Generally the surgeons have to go looking for nrves to plug into the mussel transfer to get them to work.
It can be "begging from Peter to pay Paul." Pulling good mussels and good nerves from places that work for an experiment seems to me more than a little risky. It's a blackhole at some point. Live with it!
Onepaw