Who to do surgery?

[diverdan]

I am being treated for a brachial plexus injury sustained in a cycling accident in May 2005. I have no motor function in my right deltoid and infraspinatus. I have seen a Neurologist and an Orthopedic Surgeon, obtained an EMG, a shoulder and cervical MRI, and I am currently undergoing PT to maintain range of motion and slow the muscle atrophy. However, there has already been a great deal of atrophy in my shoulder. My Orthopedic Surgeon referred me to a Neurosurgeon for another opinion regarding the source of paresis and treatment. All requested medical notes, MRI film, and EMG results were provided to the Neurosurgeon. The Neurosurgeon is the only one in my town who belongs to my HMO; yet he has communicated through his clerk that he will not see me. When asked why, no explanation was provided nor will one apparently be provided to the referring Orthopedic Surgeon. Can anyone tell me why, in general, a Neurosurgeon would refuse to consult on such a case and why he would give no explanation? Should surgery on a Brachial Plexus Injury be performed by an Orthopedic Surgeon or a Neurosurgeon?

[babyryd]

Sorry about what you're going through. It's bad enough to have to deal with this injury without having professionals turn away without explanation. Unfortunately, BPI "specialists" are few and far between. Don't be discouraged if you have to travel to find the surgeon you are most comfortable with and who has the most experience/success treating this type of injury. Many of us on this site have done just that. I don't know where you live, but we traveled 3000 miles for our son Chase's surgery (age 7 LTBPI). It is odd that that surgeon is refusing without explanation. BPIs typically require a multidisciplined team consisting of neurosurgery, orthopedics, plastics and hand and upper extremity. Because we're dealing with the nervous system, our comfort was in neurosurgery, however there are very well known and respected surgeons in the plastics field as well as in ortho. I do hope you find someone you're comfortable with soon. We're a PPO, but we had our insurance verify "provider" status on all of the surgeons we were learning about prior to scheduling consultations - I know it's different with an HMO, but if your referring physician can not refer you to an HMO provider, maybe you need to work with your insurance company. Best of luck to you and press on.
Lourdes

[cbe411]

With my personal experience neurosurgeons are not always familiar with BPI. Some of them are intimidated, for lack of a better word, by the injury as they do not know how to treat it. I would see a BPI specialist ASAP and see there...... I am sure that you will have many more options! DO NOT GIVE UP!!!!

COurt

[EllenB]

Hi Dan,

I'm so sorry about your accident. How did it happen? (My 18 yr old son was hit by a car while cycling about three years ago.) The other posts on this thread are correct - and because microsurgical techniques have been developed by both plastic surgeons & neurosurgeons, you'll find good referrals to both disciplines.

I'd encourage you to include Mayo Clinic in Rochester MN on your short list - primarily for the reason that the team consists of three excellent doctors who combine fields of neurosurgery, orthopedics & hand specialty (within ortho). They have worked together as a team for years and can offer options that aren't always available elsewhere. Even though my son lost all five BP nerves (C5 - T1), Mayo did muscle/nerve transfers & John can now move his arm & make/release a grip. Best of all, after having debilitating pain, he is now pain free (partly from learning to stay distracted but also I'm convinced because he now has muscle movement in his arm.)

http://www.mayoclinic.org/orthopedicsur ... floyd.html

Ask any & all questions on this site - people are GREAT about sharing their experiences & have knowledgeable suggestions.

Keep us posted & take care,

Ellen

[creeker46]

i understand what your going thru,,i have severe atrophy,no deltoid muscle and very limited use of my hand and arm after 6 months of PT/OT.
i was injured in a car accident last oct. was released fron hospital last dec. am still having trouble with my doctors and insurance co. getting the proper care,, myself i was in a coma for 7 weeks and do not remember the accident,i was headed south on xpressway and a car going north lost the driver front tire and it became airborne,jumped the median and came thru the windshield striking me on the left side ( i was the passenger ) it broke a total of 5 vertabres 1 in my neck rest in my back according to the reports,, i broke 8 ribs,and have 3 plates and 15 screws in my hand and wrist,,.
anyways i live in michigan and have done alot of research on these plexus nerves. the doctor i am trying to go to see is julia terzis she's been doing this for many years and specializes in this area her web page is http://www.jkterzis.com/ hope this helps you,,
take care,,,,
brian

[EllenB]

Hi Brian,

I'll be interested in how things progress with Terzis. I'd understood that she wouldn't work with insurance & required a substantial up front payment from the patient in order to proceed.

Keep us posted -

Ellen

[diverdan]

Hi Ellen. Thanks for your response and all the others. I had a head-on with another cyclist. Big time bummer. Being an outdoorsman and sports enthuiasist has been my life as my wife is also a cyclist, diver and outdoorperson too. Thanks for everyone's support.
Dan

[Christopher]

Dan,
I researched & visited every top Dr. I could all over this country and was even told by some of the best to go where I ended up, at the Mayo Clinic in Rochester Minn. Like EllenB's son Jon (hi Ellen hi Jon!), I had a very solid experience there. Think about it, 3 doctors = 3 heads and 6 hands, at one of the finest hospitals in the world, it was easy math for me. The truth was, that the fact they work on a yearly salary regardless of how many patients they bring in or not, they are not allowed to advertise, and, the real one that mattered, there are three top minds that specialize in this arena of injury and they all work off each other. During my first consultation, they would go back and forth bouncing ideas off each other, which is what you'll want when you are opened up because no one know exactly what the damage is until they go in and find it, and the end result was much more than any other facility or Dr. could offer me in terms of possible return of function and use.
I wouldn't believe it if I read it here or anywhere else, so I spent a lot of money finding out for myself. I'm glad I did, it gives me a much needed peace of mind that I've done just about all I can do, and I learned a hell of a lot on the way from each Dr. that I met and talked to.
I wish the Mayo team could advertise, because I think it's a bit criminal depriving people of the knowledge that there are people out there that could make a serious difference in their lives.
What ever you choose I wish you the best, just way out your priorities. For me, I would mortgage my life to get my arm back.

Cheers,
Christopher

[Christopher]

Oh, and FYI, I'm an outdoorsman myself, and a lover of almost all adventure. And unfortunately, our bodies are the vehicles in which we experience most adventure and the outdoors, so mine is worth more than gold to me... I never new just quiet how valuble it worth was/is till some of it was taken away...

[diverdan]

Thanks for your insight, Christopher and good luck to you as well.
Dan