Trouble finding Doctor

[billvxii]

I am at 5 mo.s tomorrow from my accident and I live in Az. I am having a load of trouble finding a Doctor that can, or even try to, repair my completely flail arm. I know that I am running out of time but no one seems to do adults and I understand that babies are needing too but I need help.
Can anybody tell me how to find a Dr that will talk to me, and maybe, fix me? Please.

[Christopher]

http://www.mayoclinic.org/brachial-plexus/

[Jedi2859]

Try the Brachial Plexus Institute in Houston. My injury isn't from an accident and they told me that they could even help me. Hope this helps.

[Dan]

If you are new reading this site, you might not have the background to know of Christopher's depth of knowledge on this injury and the Dr's who specialize in it. I mention this as a way to add emphasis to his recommendation to the Mayo clinic. If you were to talk to him, he could recite most of the Dr's around the world who specialize with BPI and the nuances of each ones practice.

I am sure instead of writing a huge post on the subject and listing all their contact info, he just cut to the chase and gave you a link to the one he thinks is best and can get you in based on your time frame. Which for some of the possibilities to help you, you are correct, time is quickly running out.

Keep us updated and come back to the site for some of the help that can be provided on this site about living with the injury, but first things first, get into Mayo and get the surgical help available.

Dan

[jmar]

dan, i hate to disagree, but the mayo is not the only capable place to go. i went to st louis with dr mackinnon and she did wonders with my arm. i would HIGHLY recommend her and the barnes-jewish hospital. i have a very high respect for christopher and he does know a lot, but saying the mayo is the only place to go is something i totally disagree with. dr mackinnon taught a lot of those drs most of what they know. the mayo is not the right fit for everyone. that is a very personal choice what the best option is for that person. from what i hear, the mayo is GREAT. but so are a lot of the other drs and clinics.

[thebrain]

Second what jmar said... I'm sure mayo is great and all, but they're not the only place in the country. I can reccommend Dr. Catherine Curtin at Stanford Hospital in Redwood City, CA, which may be a little closer, depending on where exactly in AZ you are.

[Master DIVER TOM]

I think that all the choice being sighted our Great and how each doctor stated here help the person posting. What drive me crazy is Treating doctors to began with, Why a person with our injuries have to ask here at ALL You guys gave some AWSOME picks !!! More I read post here to me is that treating doctors dont give a person a referral to a BPI specialist in some CASES, Go back to the treating doctor and have that doctor give you a referral to a BPI SPECIALIST Its to leave a person without a direction to get help and treatment. The injuries our hard to deal with add in no direction for treatment IN TIME!!!! leave us with emotional scares. ITS on the treating doctor to give the referral!!!! OR at least ones you guys post.

NO DOCTOR EVER TOLD ME ABOUT ANY TREATMENT FOR MY ERBS in my life < WHAT < I found this sight and found there was treatment I could of had, Tick off at doctors you BET!!!!

Tom

[billvxii]

Thank you all for your help.
And Toni, I feel your pain. My neurologist is my wifes boss and a personal friend. He is also very smart and had only seen this once before and it was an old case and there was no fix. He thought that was the answer for me until I took him the research I did.
Lack of knowledge sometimes is the reason but I don't know everything about Respiratory Therapy and that was my profession until this.
Educate, educate, educate and research always
Thanks to all answerers!

[Dan]

Just wanted to comment a bit further and add some clarity to my prior answer.

I agree 100% with both jmar and Brian, Mayo is not the only place to go!

There are many times writing a quick comment the nuances in what we are trying to say don't get noticed. One of the things I was paying attention to was the "urgency" of getting in to see a Dr. based on how long ago the injury happened. If you re-read what I wrote, I did add the "based on your time frame" and the fact that Mayo has a team of surgeons, the probability that you can get in sooner with them is why I commented the way I did. I realize that Dr MacKinnon, Dr Curtin and many other Dr's might be able to get patients in quickly as well, just going with the odds.

I think this goes to a bigger issue and that is making it easier for those of us with traumatic injuries to get information from this web site. To that point, Chris and I are on the board of directors for the UBPN and we are working toward that goal and we know we can improve how people with injuries can get info on Dr's that specialize with traumatic injuries and not the birth injuries.

I am happy to receive suggestions on how we "traumatics" can be served better by this site. I only ask that you send me a PM or an e-mail at dan@ubpn.org and not put it in an open forum.

Thank you all for your input and wanting to help others that come here looking for help during a difficult time.

Dan

[Christopher]

If you are new reading this site, you might not have the background to know of Christopher's depth of knowledge on this injury and the Dr's who specialize in it. I mention this as a way to add emphasis to his recommendation to the Mayo clinic. If you were to talk to him, he could recite most of the Dr's around the world who specialize with BPI and the nuances of each ones practice.

I am sure instead of writing a huge post on the subject and listing all their contact info, he just cut to the chase and gave you a link to the one he thinks is best and can get you in based on your time frame. Which for some of the possibilities to help you, you are correct, time is quickly running out.

Keep us updated and come back to the site for some of the help that can be provided on this site about living with the injury, but first things first, get into Mayo and get the surgical help available.

Dan

Dan,
Thanks for your post.
You're right 100%!

I've written & rewritten the same stuff on this forum hundreds of times and it's all there for whom ever has the desire or curiosity to search it.

The time is way past due for there to be a MUST READ page on this website for all newly injured. With a standard breakdown on what to expect & what is possible.

It is extremely common & costly for injured individuals & families etc to be misinformed. It happens at least 75% of the time. The medical community doesn't have a strategy to share and teach the latest research done around the world. The CRAZY thing is the most common surgical technique used by the extremely small minority of actual practicing BPI specialists was being used in the 1960's! Practical use of newly created medical surgeries travels very very slowly within the medical community. Surgeons must learn from other surgeons. Unfortunately that is slower than the Pony Express in getting practical news into the surgical theater.

It's your arm, it's your life, do with it as you choose. I interviewed as many BPI as I could afford to (financially & time wise). I researched as much as I could possibly absorb once I discovered that the best of the best in Los Angeles (USC & UCLA which were rated in the nations top 20 for neurology) and they had no real clue what to do, and wanted me to wait.

I went to Harvard, to Yale, to Columbia, LSU (David Kline, the godfather of TBPI surgery), Stanford, USC, UCLA, Dartmouth, U of Chicago, and as far as Europe to the UK.

I ended up with to the best I could find. That was the Mayo Clinic. Other top BPI specialists recommended I go to the Mayo instead of themselves, because the Mayo Team could offer more advanced techniques and a team of 3 surgeons all operating in unison together all with different view points but able & willing to adapt that view point to the best one suggested.

Once I met a depressed 23 year old kid at the Los Angeles airport on the way to the Mayo for his first consultation, I was going for a check up. I could tell he had BPI because of his slight and atrophied shoulder hiding under his sweatshirt. He was injured 2 years previous. His mom was a surgeon, his father was an internal specialist. Both of his parents were MDs and practiced in good hospitals and were well educated. The kid was wrongfully advised by a "top neurosurgeon", that was a close family friend, to wait it out. That kids whole future was changed because of lazy parents in my book. It pissed me off to no end, and it still does. They should have known better, but then again so should 90% of the worlds neurosurgeons that advise people to wait or give them antiquated & outdated medical options.

Do your research. It's your life.

For me the question for a surgeon is this:

What is the BEST surgical outcome you (and/or your team) can offer?

I did this, compared notes, and ended at the Mayo. There are other very competent and caring BPI specialists I met, and that are out there that I haven't met, but in the end, they couldn't offer what the Mayo could. It's that simple for me.

I would've given my left & right testicle and more to save my right arm. But that's me. Your relationship to, and the importance of, your own arm is your own and only your own.

more questions:

How many times have you done this specific BPI surgery?
What is the surgical outcome success rate?
How long will the desired outcome take (months/years post surgery)?
Are there any other BPI surgeons that you are aware of that offer better outcomes?
How do you stay up to date on the latest techniques being practiced around the world (Asia, China, India, Europe, etc)?
Where were did you get your education?
Where did you complete your residency?

and there are more questions, but I hate the inefficiency of typing with one hand and the inefficiency of typing the same stuff over and over and over....

Good luck,
Christopher