I saw a BPI specialist (Dr Nath) yesterday for the 1st time in 11 years, and was surprised he didn't tell me I was way too late to do anything.
He suggested a nerve transfer from my good brachial plexus (scary!) to the injured side. That would take 2 years to grow down my arm, then a muscle transfer to my bicep, then my lower arm. The whole process would take 10 years, and has a 70% chance of success.
I'm so shocked this is possible that I don't really know what to think.
Have any of you had this procedure, and how tough was it? How much arm/hand use did you gain back, and was it worth it? I searched the past postings, but didn't see much about this type of nerve transfer.
Dr Nath said he has done about 40 of these, so I'd love to here from one of you, but any input would be appreciated
My son had some similar surgeries over five years ago at the Mayo Clinic in Rochester MN. They have done hundreds of these surgeries, and I like that there are three doctors in the group with different specialties (orthopedics, neurosurgery, hand specialist) who work together. I'm not sure if Dr. Nath has a team now or if he works alone so you might want to ask about that. And his background is in plastic surgery as opposed to neurosurgery/ortho. Both specialties developed micro-surgery techniques independent of each other. I guess plastic surgery might have developed more from an "outside in" perspective, and neurosurgery from an "inside out", but I could be wrong. There are good doctors in both disciplines.
John had a complete BPI (all five nerves avulsed). The Mayo doctors (Bishop, Spinner, Shin) took part of his nerve from his good arm & moved it over, and they also did gracilis muscle/nerve/tendon transfers from his inner leg to his arm. They also used one of his phrenic nerves, as well as some intercostals. I can send you a pdf file with two articles about the surgeries and experience that were published in Outreach (a ubpn publication) a few years ago - if you want to give me your email address. Mine is LNBram@bellsouth.net
John's surgeries were done within six months of the initial accident. Anything done after the original muscles have atrophied would need to involve bringing "donor" muscle in (i.e. the gracilis) since it would be too late for original arm muscles to recover.
If you want to get another opinion, I couldn't more highly recommend the Mayo Clinic! Hope this helps.
Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury: -dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries: -2 Intercostal nerves grafted to Biceps muscle, -Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts. -2 Sural nerves harvested from both Calves for nerve grafting. -Partial Ulnar nerve grafted to Long Triceps. -Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle. -Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility: Brachial Plexus Clinic at The Mayo Clinic, Rochester MN (all surgeries successful)
"Do what you can, with what you have, where you are." ~Theodore Roosevelt
Hi Heddi,
I had one gracilis transfer to biceps area, using 4 intercostal nerves from the ribs to innervate it and my biceps as well. Half of my left side (uninjured/heathly side) C7 was transfered over to my deltoid to help keep my shoulder in socket. It helps it with subluxation, but is not functional beyond that for me.
The other shoulder option would be a shoulder/bone fusion, which I've seriously considered and met with specialists about.
I assume that Dr. Nath was considering one gracilis transfer for elbow flexion (biceps) and the other for hand/grip flexion.
His decision to transfer nerves first, let them grow to the target area and then transfer the muscle afterward once the nerves have completed their growth, is the first time I've heard of that strategy. I actually brought up that idea with Dr. Thomas Carlstedt in London years ago, and he said it would be optimal, but most patients don't have the patiences for it.
Like Ellen suggested, I highly recommend getting a consult, at the very least, with the doctors at the Mayo Clinic as well. They specialize in adults with BPI and have been instrumental in getting many of surgical techniques incorporated in BPI repair strategies here in the U.S.
I'll write more when I get back home Sunday.
Be well,
Chris
FYI - there was very little loss of strength in the healthy arm from the C7 transfer from uninjured to injured side. What was lost came back over the following months.
You're right about Dr Nath's plan. I think I'd rather have the deltoid activated, though.
I'm one of the impatient ones, and would rather not wait for the nerve to grow down. I'm 42, so 10 more years for all this to be done seems almost too late. I'm sure I'll still be active then, but how much will it help me?
Hi Heddi,
I also agree that you should look into the mayo clinic. They also did my nerve transfer surgery. They were discussing options for my shoulder/deltoid down the road. These did not include anymore nerve transfers as they need to be done within 6 months. I dont know much about the surgery, but it involved live muscle transfers as Ellen mentioned. I will be there in September so I hope to find out more then. However, I am hopeful they can do something to get me some shoulder stability and movement. My surgery was in November and i have not seen anything in the shoulder yet. I do have slight movement in the bicep so that is encouraging.
Didnt mean to ramble just pass on my thoughts on the team at mayo. I definitely think you should try to get a consult there as well!
good luck!
Robin
hi again!
my race was july 20th. felt great to be back out t here. it was a tough day. river was rough and the current was not going my way! so as you might imagine, swim was tough. onward and upward. i have some new goals. century ride in august, another triathlon in september and, my first marathon in october! This will all lead up to Lake Placid next July (if i am lucky enough to have gotten a slot. will find out next week i hope) i find that the more goals i have the better i am. not that raising 3 very busy little boys isn't enough! i do wish i could get rid of the pain and am getting ready to try out the amino acids Christopher has been talking about.
how are you? when is your next race? how's the swimming?
yes, i will let you know what they say in september! did you call there?
Swimming against a current is tough--good job sticking it out.
Is the triathlon in September another Olympic distance one? Good luck with Lake Placid; how exciting!
I know what you mean about the goals (although I don't know how you do it with 3 kids). I just feel more motivated and positive when I'm working towards something.
I'm doing a sprint triathlon in 3 weeks, and my swimming is finally improving. I went crazy and signed up for a 2-mile swim in October, so I hope it keeps getting better. My husband is doing the 5-mile swim, so at least I'm not that crazy
Haven't talked to Mayo yet--I'm still gathering information, but suppose I'll have to do it soon.
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey". There is NO SUCH THING AS A DUMB QUESTION. Sharing helps to Heal. HUGS do too.
