United Brachial Plexus Network, Inc.

Princess, do tell your mother to be careful. I did the range of motion twice a day on Jeff for 2 full years until I finally did damage to my arm. I had to stop doing it and was taking Celebrex. Even though his arm was very fragile and thin doing those exercises was very taxing on my left arm.

Thank you Pamela. I'll let my mom know & keep it in mind. Who ranges Jeff's arm now? Is your arm better now? What exactly happened to it?

Third Specialist. Met with Dr. Price this morning.

Here are the findings:

How much experience do you have with brachial plexus and trauma injuries in adults?
Works with children mostly (injury at birth) but also adults



How many total BRACHIAL PLEXUS OPERATIONS IN ADULTS are done per week and per year, and how many have been done in total.
Approx 12+ annually.



Do I qualify for surgery?
Potentially but need to understand limited expectation. My injury is very severe.



If yes, why? If no, why?
According to CT Myelogram, the results show a C6, C7-T1 root avulsion. They can work with the C5 nerve root & do nerve grafting for shoulder movement. DISCREPANCY: HHH medical records state C5, C6, C7 -- need to clarify.



If yes- what are my options?
Possibilities include nerve transfer, grafts. They use serul nerves from legs to give shoulder movement, it’s not a significant for elbow flexion. DISCREPANCY: known to recover elbow flexion per Dr. Abbott, UBPN, & Dr. Wolfe.

They also don’t do much muscle transfers as it is fairly new. They don’t do intercostals nerve transfers due to low success. Him & Dr. Grossman don’t believe in re-routing C7 from the “good arm” & plugging it in the other side. Some people do it but they don’t agree with it, don’t think it’s worth it. It’s high risk, why touch a perfectly good extremity & chance it. They believe it’s a “long run for a short gain.” Also, if my lotispis muscle (under armpit) was in tact- could have transplanted but that muscle has been destroyed.



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?
Best if surgery is performed within a year so 9 months post accident is running towards the end of the window of opportunity. DISCREPANCY: research shows best if performed 2-6 months post accident, per Dr. Wolfe & UBPN.



Is there a difference between females getting this surgery as opposed to males?
Not that he knows of, in his experience.



Is age a factor? Weight? Physical condition?
My age is considered young, weight, physical condition is also OK.



What about regaining finger movement, T1 is not avulsed, how does that work?
Not much of a chance, if any, it will be very minimal & not functional.



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)?
They don’t do this kind of surgery due to low success rate. When using serul nerves from legs, the nerves they deinervate are sensory nerves & other sensory nerves cover it so legs will remain unaffected. DISCREPANCY: I’ve been told that outside ankle & some areas of the foot feel numb per UBPN.



If surgery is successful, how much function would be expected to return? What is the percentage of return expected? Length of time function returns?
Not enough info to determine percentage. Need full EMG & nerve testing done. If function returns it will be for “helper” functions only. It will “help” to assist the other arm but not fully functional. Expectations are modest at best but no use of hand & fingers.



How risky are the options?
Not very risky, long surgery, under anesthesia.



What are the disadvantages? Short term? Long term?
None mentioned.



What are the advantages?
It will lessen pain & return minimal arm function, mostly shoulder. Will not need to wear a sling. As of now, subluxation is not bad. There are procedures that can avoid further subluxation where they tie gortex (??) into the humorus. Need to find out more about this.



Will it take a "series" of operations or done “all at once”?
One major operation then therapy. DISCREPANCY: The OT who evaluated me there told me I’d probably need 3-4 surgeries, Dr. Abbott & Wolfe advised more than 1 surgery will most likely be needed as well.



What are the side effects of the surgery?
Under general anesthesia, no real side affects.



Will I need to be on meds during, before or after? If so, what kinds and how long?
Not anymore meds that I’m on now.



How long is the surgery?
About 8 hrs



When under anesthesia, will I need to be intubated?
Yes, long surgery



What are the statistics? Percentage of people who got better/got worse?
Everyone is different, do not get hung up on percentages & numbers. Some shoulder movement, some elbow flexion at the very best.



What is the recovery process, how long?
Will be hospitalized for a few days in a collar & sling. Results may show in as little as 6 months but results & recovery can take up to 3 years. Intense therapy needed.



What does 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?
Yes, multidisciplinary team of doctors, he is an orthopedic doctor, Dr Grossman (who is the one who mainly performs the surgeries) is a trained plastic surgeon, other doctors are also there in relevant fields (nerve specialists, OT etc..)



Have Aetna HMO. How much will the surgery cost? Hospital stay? Rehab? Inquire all expenses, payment plans
Dr Grossman’s office will try to get authorization from my insurance since this is such a specialized field.



Keeping up with the passive movements and stretches keeps the shoulder pretty flexible; even walking along and letting it swing helps to keep it supple and the circulation going. Can I not wear the sling at times or would it be harmful?
Advises sling, arm shouldn’t hang freely while walking, could injure/break it.



How soon can you do the surgery?
Needs to be scheduled in advance, next few months



The OT, Lorna Ramos, also evaluated me & stated the following:

Ø Dr. Grossman does the nerve surgery/repair, muscle transfers

Ø Dr. Price does more secondary muscle transfers

Ø I will most likely need more than one procedure done, series of 3-4 surgeries done months or a year apart (DISCREPANCY: Dr.Price said 1 major surgery)

Ø Surgery reduces a lot of pain

Ø Brachial Plexus Specialists are not very known & hard to find. Europe known to have treated this injury first for about 25 years, US has been doing it for about 15 years.

Ø Surgeries conducted in Miami Childrens Hospital where they have the best set up


Comments:

Not impressed with this doctor. He stated that most nerve transfers/grafts are done w/in a year but research shows best results are w/in 2-6 months post accident. He also didn’t state a percentage of chance that I may have, very veige about it. They work mostly with children; I need one who specializes with adults. Discrepancy with nerve root avulsion, crucial to get clarification! Need to find out more about C7 re-routing from good side to bad side & muscle transfers- find out success rate.

Princess,

Haven't heard anything from you of late. What's been happening? Have you had surgery yet? My thoughts and prayers are with you!!

John just had his second free muscle transfer on Wednesday at the Mayo Clinic and everything went well. A Discovery Channel film crew spent two days with us for an upcoming special that will probably air in October. They filmed a little of everything leading up to and including the actual surgery and John being brought into his room in ICU.

The surgery lasted about 9 hours, they used his left gracilis muscle and four intercostal nerves. They also plugged in some sensory nerves from the intercostal area so that he will ultimately have the ability to determine some sensation in his hand. The weird thing is that once the nerves begin working, he'll not feel the sensations in his hand, but in his chest area!!

He should be discharged on Wednesday or Thursday of next week. The doctors OK'd him to do the Bike Ride Across Georgia (BRAG) with me on a tandem bike in June. We'll do 420 miles over 7 days. The Discovery Channel may come down and film part of that event, since John's accident occurred on a bicycle and because of his passion and desire to get back on the bicycle. We'll let you know when it will be broadcast.

You take care of yourself and let us hear how you are doing.

Gene

Hey Princess

I thought you had a doctors appointment in April was I wrong?

Let us know how you are doing please.

Kath

I know what you are going through. I was in an atv accident in May/99 and the C5 and C6 nerves in the brachial plexus were torn completly, about 2 inches away from my spine in the neck area. This pretty much shut down my left arm. Eventually I could sort of lift it out about 10- 20 degrees in front of me, more less by swinging it out and trying to hold it there, it hurt to do that, and I could move my fingers. I hear the pain and movement gets better for some as I hope it does for you but I still have the pain in my neck, arm, thumb and index finger. I was recomended by my Doctor in Yellowknife, Nt to Dr. Lobay a very well know Plastic Surgeon at the University Hospital In Edmonton, Alberta Canada and throughout Canada. I would recommend him to absolutely anyone with this injury. I saw him about 3 months after the accident and he was all to familiar with the injury. He said if I didn't regain any movement at the elbow he could do a muscle transfer from my back to my arm to make it bend at the elbow but he wanted to wait another 3 months to see if I regained any movement. I also had an EMG and an MRI about three months after the accident. With the MRI there was still to much swelling in the neck and around the nerve to tell where the injury was. The EMG pretty much pinpointed the C6 & C5 nerve to possibly be totaly severed somewhere close to the spine and maybe the roots had been pulled right out. Then I kind of knew what I was dealing with but Dr. Lobay still wanted to wait awhile to see if I gained any movement before he moved the muscle. To sew the nerves back together wasn't really an option he or I wanted to deal with because there are some major blood vessels in the neck where he would have to go in and they couldn't be touched. I went back To Dr. Lobay about 3 months later and there was no change. He put me on the list for the operation. He is an awesome doctor and he takes the time to listen and explain things to you. He said he could take a long peice of the Lattissimus muscle from the left side of my back and route it into my arm and attatch it to my forearm and I will be able to use it to bend my arm. This kind of freaked me out at first but eventually I delt with it. It was about 18 mths after the accident i had the operation and about a year max recovery from the operation. I still have all of the original injury pain but the operation has healed. The muscle missing from my back doesn't seem to make a real difference besides the scar. There is a rather large scar on my back, a smaller one under my armpit to help him feed the muscle through, and another one from my bicep to my forearm where he did a bit of work to attatch. At first you really have to use your mind to get it bending. It's kind of like bending your arm with the top of your back but after a couple weeks it came more natural. I would recommend it if you don't get much improvement at the elbow. It isn't real strong but I can bend it and it does help at times. I can open most doors and get it on to the counter and things like that and I have taken up flying as a hobby and maybe a career as an instructor. I took my Ultralight, Private, and I am about half way through the Commercial. I sat on the right side in my ultralight training and rested my left hand by the throttle. In the Private and Commercial I sit on the left side and use what power I have in my left arm on the yoke and I use lots of trim to do some good flying. I passed in the top 10 % of the school in the Private. If I wouldn't have had the operation from Dr. Lobay I most likley woudn't have made it this far in flying. Flying is the perfect remedy for taking your mind off the injury and the pain as are alot of other hobbies. It has been four years since the accident and I have come along way and you will to.

I know what you are going through. I was in an atv accident in May/99 and the C5 and C6 nerves in the brachial plexus were torn completly, about 2 inches away from my spine in the neck area. This pretty much shut down my left arm. Eventually I could sort of lift it out about 10- 20 degrees in front of me, more less by swinging it out and trying to hold it there, it hurt to do that, and I could move my fingers. I hear the pain and movement gets better for some as I hope it does for you but I still have the pain in my neck, arm, thumb and index finger. I was recomended by my Doctor in Yellowknife, Nt to Dr. Lobay a very well know Plastic Surgeon at the University Hospital In Edmonton, Alberta Canada and throughout Canada. I would recommend him to absolutely anyone with this injury. I saw him about 3 months after the accident and he was all to familiar with the injury. He said if I didn't regain any movement at the elbow he could do a muscle transfer from my back to my arm to make it bend at the elbow but he wanted to wait another 3 months to see if I regained any movement. I also had an EMG and an MRI about three months after the accident. With the MRI there was still to much swelling in the neck and around the nerve to tell where the injury was. The EMG pretty much pinpointed the C6 & C5 nerve to possibly be totaly severed somewhere close to the spine and maybe the roots had been pulled right out. Then I kind of knew what I was dealing with but Dr. Lobay still wanted to wait awhile to see if I gained any movement before he moved the muscle. To sew the nerves back together wasn't really an option he or I wanted to deal with because there are some major blood vessels in the neck where he would have to go in and they couldn't be touched. I went back To Dr. Lobay about 3 months later and there was no change. He put me on the list for the operation. He is an awesome doctor and he takes the time to listen and explain things to you. He said he could take a long peice of the Lattissimus muscle from the left side of my back and route it into my arm and attatch it to my forearm and I will be able to use it to bend my arm. This kind of freaked me out at first but eventually I delt with it. It was about 18 mths after the accident i had the operation and about a year max recovery from the operation. I still have all of the original injury pain but the operation has healed. The muscle missing from my back doesn't seem to make a real difference besides the scar. There is a rather large scar on my back, a smaller one under my armpit to help him feed the muscle through, and another one from my bicep to my forearm where he did a bit of work to attatch. At first you really have to use your mind to get it bending. It's kind of like bending your arm with the top of your back but after a couple weeks it came more natural. I would recommend it if you don't get much improvement at the elbow. It isn't real strong but I can bend it and it does help at times. I can open most doors and get it on to the counter and things like that and I have taken up flying as a hobby and maybe a career as an instructor. I took my Ultralight, Private, and I am about half way through the Commercial. I sat on the right side in my ultralight training and rested my left hand by the throttle. In the Private and Commercial I sit on the left side and use what power I have in my left arm on the yoke and I use lots of trim to do some good flying. I passed in the top 10 % of the school in the Private. If I wouldn't have had the operation from Dr. Lobay I most likley woudn't have made it this far in flying. Flying is the perfect remedy for taking your mind off the injury and the pain as are alot of other hobbies. It has been four years since the accident and I have come along way and you will to.

Hi all. So sorry for the disappearance. I'm back at work & have focused a lot of my energy lately on my mental & emotional well being. Some good news I'd like to share...about a week ago I was at therapy & was able to slightly move my shoulder outward & forward. My therapist says that some deltiods are kicking in & since its been a year, its possible that any nerves that were torn may have regenerated. I really didnt ever expect to get any kind of movement b/c my avulsions are so bad but I'm going to work hard on strengthen it & seeing how much I can get back on my own. For this reason, I'm putting off any surgery for the time being. Since I'm already a year post accident none of the surgeries I qualify for are time sensitive so I can have them done at any time. I'm also looking into how much the surgery will cost me b/c insurance will not fully cover it. I'm doing well & hanging in there. Thank you all for caring enough to give me any input or advice that have helped make this experience a bit easier. You are all amazing people! I will be in touch...

Great news Princess! Regeneration can and does happen, here's hoping for more recovery. Glad to hear you're back at work and coping well, that is the BEST therapy for coming to terms with the injury, irrespectyive of what recovery you get.
Do keep us posted, I was wondering what happened to you. Did you see any other docs? Jen NZ

So far, i've seen 4 doctors in total: Dr. Abbott, Dr. Price, Dr. Wolfe & Dr. Nath. I'm going to wait about a year to see if I can get any movement back on my own before pursuing any surgical options. I'll be checking the boards occassionally to say hi, see how all you wonderful people are doing & hopefully learn of any new surgeries that'll be available in the near future. God bless!