TBPI

Treatments, Rehabilitation, and Recovery
francine
Posts:3656
Joined:Mon Nov 05, 2001 12:52 pm
Re: TBPI

Post by francine » Sat Feb 01, 2003 7:07 pm

Hi Gene - With all due respect, I'm just curious to understand why you find the Medical Resources list to be lacking? I went through the whole list and it is a VERY comprehensive and the top bpi doctors are right there. The top docs already know how important UBPN is as a vehicle for bringing information to our community - many of them write articles for the Outreach - and they understand that the suppport groups all over the world have their place in helping their patients. At the recent Narakas symposium in Paris, (the conference for bpi specialists worldwide) a group of support group leaders were actually invited for the very first time to the symposium to share information.

Any doctor that refuses to list on a internet site such as the UBPN site is someone (in my opinion) that has no vision for the future. The internet is not going away - this is the new way of life. And if they don't get up to speed soon they are going to fall behind real fast.

There are only three full time brachial plexus clinics in the world. Dr. Birch in the UK, Pr. Gilbert in Paris and the Texas Group. All three groups work on obpi and tbpi. They are all listed on here and no one had to 'fight' to get their information. That alone should say something about how they honor UBPN and the work that UBPN does and how important the internet has become to the population they serve.

-francine



jennyb
Posts:1183
Joined:Fri Nov 02, 2001 5:24 pm
Injury Description, Date, extent, surgical intervention etc:January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.

Re: TBPI

Post by jennyb » Sun Feb 02, 2003 7:56 pm

Just in case anyone gets confused-appearance on the UBPN Medical Register doesn't indicate any particular unit is 'better' than another unit not appearing on the list, or that it is endorsed in any way by UBPN. I thought newbies might get confused....please also bear in mind that the 3 factors which most affect how good a result you get from surgery are; severity of injury,
age of patient and time elapsed since accident, much more so than which bpi specialist you use.

Thanks for the link Gene, someone posted it a while back but I lost it. It's very encouraging that tbpi issues are being taught this way and the names of the tutors are mostly familiar to me from reading papers they have published, presumably they have been picked for their tbpi skills. If you have found any specialists in your research not listed in the medical directory as having been approached, please give UBPN their name, the more specialists there are 'visible' worldwide, the better. Hopefully one day they might reach a concensus on the best way to treat tbpi and choices will then be easier to make.

lizzyb
Posts:809
Joined:Sun Nov 04, 2001 6:36 am

Re: TBPI

Post by lizzyb » Sun Feb 02, 2003 8:23 pm

Hello..just to clear up something else that may be confusing..there are far far more than three 'full time' units or clinics within hospitals worldwide that are dedicated to treating BPI . Some of these centres have been treating BPI for many years and have pioneered the surgical procedures that are employed today. With the freeflow of information that the internet affords anyone with a connection, an intelligent search will find these centres relatively easily.

admin
Site Admin
Posts:19873
Joined:Mon Nov 16, 2009 9:59 pm

Re: TBPI

Post by admin » Mon Feb 03, 2003 4:32 pm

hey glad to here he is getting sensation back and the goose bumps are a good sign to unfortanetley so is the pain ask the doctor about a tens unit that sends electrical impulse to help ease the pain keep in touch and let me know how his progress goes

hdcrash
Posts:104
Joined:Wed Dec 25, 2002 10:40 pm

Re: TBPI

Post by hdcrash » Mon Feb 03, 2003 4:41 pm

hey My doctors name is Yakuboff he is actually a plastic surgeon connected with univesity of cinncinati in ohio he has all my trust in what he is doing for me Keep praying for the best the evaluation they make is not always the case when they get inside the surgery is explratory at first then they fix what they find. so streched nerves can show the same symptoms as avulsed so if there telling you they are avulsed they could just be streched I wish you the best of luck. Chris

admin
Site Admin
Posts:19873
Joined:Mon Nov 16, 2009 9:59 pm

Re: TBPI

Post by admin » Sun Feb 09, 2003 1:00 am

just flippn thru and saw the hdcrash that has to stand for harley davidson tell me more about your surgery

Paul
Posts:254
Joined:Mon Mar 25, 2002 11:05 am

Re: TBPI

Post by Paul » Sun Feb 09, 2003 6:24 pm

Hi Francine I just went through the whole list my self and some 15 or that i know of here in the USA are not listed. When you say top bpi doc's I can'nt say that the missing are top, bottom or what. I know one from Virginia thats missing and could stay missing. Paul

francine
Posts:3656
Joined:Mon Nov 05, 2001 12:52 pm

Re: TBPI

Post by francine » Sun Feb 09, 2003 6:32 pm

HI Paul - send the list to Kathleen and she'll see if they were contacted already or not. If they didn't respond, maybe she'll send out another request... it probably would be nice to see the list of who was contacted and chose not to respond but I know that this kind of list wouldn't be too diplomatic on UBPN's part! LOL

njbirk
Posts:1806
Joined:Wed Oct 24, 2001 10:09 pm

Re: TBPI

Post by njbirk » Sun Feb 09, 2003 6:50 pm

And this is a good time to suggest new doctors/clinics because we are in the process of updating information and are requesting updates from all those participating so far.

Thanks everyone for your suggestions.
Mail suggestions for doctors to add along with contact information if you have it to kathleen@ubpn.org

Nancy

Paul
Posts:254
Joined:Mon Mar 25, 2002 11:05 am

Re: TBPI

Post by Paul » Sun Feb 09, 2003 7:24 pm

ok Nancy I will email them.......Paul

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