Need help

[Princess]

How is misfiring determine & what is it? My doc & therapists feel firing in my pects & deltoids but I cant my arm at all. My traps are strong enough & they take over but in the process, they feel firing in my my pects & deltoids. I'm not sure what that means or if any function will come back...

[Princess]

Hi all. I've been doing a lot of research these past few weeks & have found 3 specialists in NY that work on brachial plexus injuries (the injury I sustained). I've booked appointments with each of them to see if there is any kind of special surgery that may restore function in my left arm. Although only one doctor participates with my insurance (Dr. Abbott), I'm getting a second & third opinion b/c this is important enough for me to pay out of pocket expenses. If anyone knows any organizations that may financially assist, please let me know. I've read up on nerve reconstructive surgery & will be inquiring soon to see if I'd qualify as a candidate for this special surgery. I want to go there prepared with informed questions. If anyone thinks of one that I missed, feel free to share. Lastly, if anyone knows of or reads anything valuable, please pass it on. This is really scary but long overdue. Wish me luck (fingers & toes crossed)!!! I'll keep you updated...

Dr. Rick Abbott- Beth Isreal Medical Center - appointment 2/10

Dr. Scott Wolfe- Hospital for Special Surgeries - appointment 2/14

Dr. Andrew Price- St. Luke's-Roosevelt Hospital- appointment 2/21

QUESTIONS FOR SPECIALISTS

Do I qualify for surgery?
If so/if not, why?
If yes- what are my options?
How risky are the options?
What are the disadvantages ?
What are the advantages?
How long is the surgery?
What are the statistics? Percentage of people who got better/got worse?
What is the recovery process, how long?
How much will the surgery cost? Hospital stay? Rehab? Inquire all expenses, payment plans?
This is by far the hardest experience of my life...its comforting to know there are wonderful people out there who truly understand & are willing to help!! Thank you all!

[jennyb]

Good questions you've come up with there Princess, here are some I've taken from the TCH website about how to evaluate a facility. The advice is for families with injured babies as that is the specific area of expertise of this particular facility, so I changed the word 'child' to 'adult' and the words 'erbs palsy' to 'trauma bpi'. Changed this way, these questions are good ones for injured adults to ask prospective specialists. Some would have you believe that the treatment protocols for tbpi and obpi are similar, they are not! Maybe we need to get together a page of questions for everyone's use.

How to Evaluate a Brachial Plexus Program

We believe that one of the most important questions to ask your doctors is how much experience they have with brachial plexus and trauma injuries in adults.

If the answer is vague or they don't know how many of these cases they see or operate on each week, this should be cause for concern. Remember, children with brachial plexus injuries are completely different from adults and require different management.

Ask also how many total BRACHIAL PLEXUS OPERATIONS IN ADULTS are done per week and per year, and how many have been done in total.

It is well established that the more numbers of a surgical procedure done, the better the patient's outcome, with fewer deaths and complications.

This seems obvious, and the principle has been shown in numerous studies

Ask what the evaluating team consists of. Is it a multidisciplinary approach with specialists from many relevant fields, or does it consist only of surgeons or only of medical doctors.

There are other questions on the site about things like whether the facility has research capability etc, I just pulled off the top few which are important to tbpi.
I'm not sure who is the best known/most experienced tbpi specialist in the US, any ideas anyone? Does any specialist deal mainly with tbpi in adults and has been for some time, in order to provide the long term outcome studies you might need to see? Remember also that your age, the severity of your injury and how soon after the accident the surgery is performed have a great bearing on the result-remember this when reviewing results of any facility-you want to see numbers of ADULTS with injuries comparable to your own getting good results.
Looking forward to seeing how these guys stand up to your interrogation Princess!

[Princess]

Thanks Jenny. This is very helpful & I have added it to the long list of questions. I'll use it on my next two appointments coming up. It would be great to get together a list of important questions, that would be useful to others, its definitely a good idea!! My very first appointment was this afternnon & here are my findings (anyone please feel free to comment & share what you know or advice):

1.Do I qualify for surgery?
Yes, never can really tell, needs to get in & take a look inside.

2.If yes, why? If no, why?
There are 5 nerves that control the function of the arm. If a few are avulsed & some are in tact, they will work on those in tact to try & get movement.

3.If yes- what are my options?
Only recommended Grafting at this point not intercostals nerve transfer b/c that primarily works on the muscle. If there is small distance in nerve gaps, artificial material can be used in grafting. If the gap is large they will take nerves from my leg (knee down to ankle, outside the calf) use nerves to make bundles to help bridge gaps, provide a conduit to attach to other. If big distance (nerve gaps) & nerves are taken from legs, will feel numbness on outside of foot (by the outside of the ankle).

4.I understand that there is a higher success rate when surgery is performed 2-6 months post accident. Is this correct? How much of a disadvantage does it make for me being 9 months post accident?
Most of these types of operations take place around 6 months post accident. More concerned with muscle atrophy (lifespan approx up to 18 months). Right now, 9 months post, is prime time for surgery.

5.Is there a difference between females getting this surgery as opposed to males?
Not aware of any differences, injury more common in males

6.Is age a factor? Weight? Physical condition?
Yes, younger & healthier have better chances. My age, 26, is fine, not dangerous.

7.Re: intercosal nerve transfer from ribs to arm- What nerves would be reinervated? What nerves would be deinervated & how will the area be affected (numbness, pain, soreness- will it be permanent or get better)?
Intercosal nerve transfers are more for muscle tone. May be considered down the line. Under impression from medical records C7-C8 are avulsed. Said that I need good nerve supply from C5-C6 need to be in tact to work with. I need to double check records cuz rehab has me down as ROOT AVULSION C5, C6, C7.
If grafting performed, chances are: 70% Deltoids, 60% biceps
From Elbow down (forearm, triceps, fingers)- slim to no chance, under 20%

8.If surgery is successful, how much function would be expected to return? What is the percentage of return expected? Length of time function returns?
Nerves grow an inch a month from spine. For deltoids- need 7” For biceps- need 15-16”
Shoulder can be strong enough to not have to wear sling. Can take a year + for function to return. 60-70% chance.

9.How risky are the options?
Not very risky. Only risk is artery injury which severly compromises blood supply to arm. Other than that, just a scar from knee to ankle.

10.What are the disadvantages? Short term? Long term?
Scar, numbness, artery injury.

11.What are the advantages?
Surgery usually results in less nerve pain. Sometimes pain improves for a period of time.

12.Will it take a "series" of operations or done “all at once”?
First they will wait to see if any shoulder and/or bicep movement returns, then will go further. Series of surgeries, if there is improvement then they will think of next surgery.

13.What are the side effects of the surgery?
Scar, numbness.

14.Will I need to be on meds during, before or after? If so, what kinds and how long?
NO

15.How long is the surgery?
It will take ¾ of the day.

16.When under anesthesia, will I need to be intubated?
General anesthesia, will require intubation b/c surgery will be long.

17.What are the statistics? Percentage of people who got better/got worse?
60-70% chance

18.What is the recovery process, how long?
1 year+

19.Approx how much will the surgery cost?
Approx 30-40K. 2-3 day stay at hospital.

NOTES:
Doctor unprepared, was away on business last week & didn’t review medical records.
Unimpressed
Didn’t seem very knowledgeable
Didn’t review MRI films either, said to come back to meet with entire team. Wants me to leave films so he can review them w/radiology & discuss on next appointment.

[Princess]

The doctor understood (from hospital medical records which are 200 pgs long so he may have missed something b/c he was out on business & reviewed them in front of me for the first time) he understood that C7-C8 are avulsed (totally ripped out of the spinal cord). He said that I need good nerve supply from C5-C6, that they need to be in tact so they can work with it. When I came home, I checked my rehab records & they note ROOT AVULSION C5, C6, & C7. I will double check the info, my chances may be different. I’m seeing a specialist this Friday so I’ll see what he says & I’ll have the facts straight.

[francine]

Princess - these are great questions - this post is very inspirational for those going through the same thing. Sometimes people don't know that it's ok to interview doctors like this and make a decision on who YOU want to work on you. So - thanks for educating all of us! Looking forward to reading more answers and how you will make a decision on who to go to.

-francine

[sarmstrong806]

Princess-

I avulsed C6,C7, and T1 in a car accident over 2 years ago. I too have no use of my arm. So far I have had two surgeries. The first was a serul nerve graft, where they take one or both of your long serul nerves out of your legs. That did not work, so about 6 months ago I had a intercostal nerve graft to the bicep. The results of it look promising, as I have shape to my bicep and some good EMG results. There are many options for you to pursue, but I would say the key is to research different doctors. I lived in Dallas when my accident was, and all my doctors are in Houston. The BP Clinic down there is really great. My point is that there are tons of surgical options, but they require a philosophy of No Pain No Gain. At times it has been really hard for me, but life goes on.

[PamelaW]

Princess, Sounds like you have about the same amount of damage my son has. He has 4 nerves totally avulsed and only one to work with. He got the same 20% chance from the elbow down. It has been 10 years this May since his accident. He was 22 at the time. In June 2001 he had the intercosal nerve graft. There are definitely things going on in the elbow but not too useful yet. This board would have been so great at the time of his accident. Nobody had ever heard of a brachial plexus let alone injury to one. You are lucky in that respect at least.

You are already doing the very best thing you can do. I found the more educated you are on the injury and the more educated questions you ask the more they will answer. As Jeff went to a teaching hospital, LSU with Dr. Kline they answered most of my questions before I ever even got a chance to ask them. I had a notebook with a list and had every intention of going down the list. As his injury was before the internet I had borrowed my daughters nursing books and read everything about nerves and really studied nerve regeneration and growth and most particularly the brachial plexus. It sure made it easier to understand what they were saying.

Jeff's first surgery took 10 hours. When they got inside there was a lot of scar tissue that needed work too. He had the surgery within 4 months of the accident so he still was not totally recovered, but even so the recovery time from the surgery was minimal. He has never worn a sling since the surgery so it was successful as far as the biceps and with some real effort can use the deltoids to at least move the arm outwards. We flew from Louisiana back to Michigan 5 days after the surgery. If you are going to have to fly home be sure and tell the airlines so they can make some special seating arrangements for you. They put us in the front row of coach because the nerves taken out of his leg he needed more leg room. Had I known ahead of time we could have gotten him a first class seat, but didn't realize it. Don't know if all airlines do that or not. We flew Continental and they were quite helpful with him.

I wish you all the luck in the world for as much of a recovery as is humanly possible. Your attitude is great so that has to be a big plus.

[jennyb]

Thanks Princess, you're becoming a tbpi resource in yourself :0)

From the answers it does look as if this guy is at least familiar with current tbpi thinking-he said the op might give pain relief, that's something other surgeons have not known according to posts on these boards, a specialist would have to be right up on the tbpi literature to know that, the paper was only published a relatively short while ago, one even said it would NOT give pain relief, I'd be worrying about that guys tbpi general knowledge....
He didn't really answer the question about whether the surgery would be better performed earlier, he just said most surgeries are 6 months post injury-that is no longer the case in the UK where very severe injuries are done a.s.a.p, so maybe you need to ask WHY it's done earlier there-is it just the different health systems/circumstances/kinds of injury presenting or is there some kind of thinking behind it? Results are so hard to compare that the jury will probably stay out on that one for a while. I'd be interested to find out.
The recovery timeframe is pretty loose too, I've spoken to some who say they had results within a month (mainly healthy teenagers) and some who still had recovery happening many years later-there are no definites in nerve stuff. It really depends on how bad things are, and noone knows that for sure until they get inside and take a look. Sometimes a nerve is intact enough to keep a muscle alive but the strength doesn't build up for years, it looks like the nerve suddenly came alive but in fact it was there all along.
Thanks for the list of questions you sent me, we can definitely do something with that, and I think we can add on 'What reason do you give for that answer? Can you cite any studies to back up your view?' to just about every question, I'd want to know that the specialist has done as much research as me! He's getting paid for being an expert after all....

Looking forward to reading what your next guy says :0)

[Princess]

Thanks Francine! This is way too important so I need to be as thorough & knowledgeable in making a decision. I'm always full of questions so it just comes naturally to me. I'm still that kid that always asks "but why" when I dont quite understand something. I'll be posting more feedback once I see the other two specialists. I'm so scared!!! This feels like a nightmare & I want to wake up already!!!