Brachial Plexus Seminar

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
m&mmom
Posts: 1395
Joined: Sun Nov 04, 2001 9:34 am

Re: Brachial Plexus Seminar

Post by m&mmom »

Denise,
I'm not sure what role they're playing. I did not help in organizing this seminar, I'm just helping get the word out about it and making the registration form available online via my website. I would suggest calling the contact person at Shriners. I do know that Hershey has some type of bpi docs down there, we started checking them out when we were thinking of moving down there.

Cindy
admin
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Re: Brachial Plexus Seminar

Post by admin »

I know of a "BPI" doctor who moved from Buffalo down to Hershey, PA. When he left Buffalo in 2000 he had only done 3 BPI surgeries and the first one took 12 HOURS. He had watched BPI surgeries performed at TCH and came back ready to perform them. He was confident that our child would not need surgery. Our child ended up with 2 avulsions, a rupture, and a severe stretch.
m&mmom
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Joined: Sun Nov 04, 2001 9:34 am

Re: Brachial Plexus Seminar

Post by m&mmom »

I debated posting in response to this issue. I'm not defending a wrong judgement call however 4 years is a lot of time for a bpi surgeon to grow and become educated. We were contantly on the ping pong table of being told surgery now or wait a few months, sometimes it's just the nature of the injury. In regars to primary surgery lasting 12 hours, we were told it could take that long from the docs at TCH. Matthew was back there for about 8-9 hours and for a half hour they were discussing whether or not to remove a huge neuroma because his hand function was at 50%. These decisions take time to make and the doctors do not actually get to see the severity until they operate. I already can see the direction this thread is going and all I wanted to do is inform everyone of an upcoming seminar.

Cindy
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Brachial Plexus Seminar

Post by Kath »

I think that this is a great opportunity for those who have never attended any type of medical panel on bpi to hear the latest advances.

I am so happy it is open to everyone.

Kath
Kath robpi/adult

Kathleen Mallozzi
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Re: Brachial Plexus Seminar

Post by admin »

No harm meant! I just think that people need to ask a lot of questions of whatever doctor they see. Just because a doctor says that he could do the surgery doesn't mean that they have had a lot of experience. This particular doctor said to us "if you've seen one BPI you've seen them all" and that bothered me. I just think that parents should beware of which doctor they choose.
Julie-work
Posts: 128
Joined: Fri Oct 18, 2002 2:23 pm

Re: Brachial Plexus Seminar

Post by Julie-work »

Cindy,

Thanks for getting the word out. It's too bad that it wasn't the weekend we are going to be down in Philly! Maybe I could try to convince my daughter's therapists to go since it is closer.
Denise_Nach
Posts: 23
Joined: Tue Nov 19, 2002 10:23 am

Re: Brachial Plexus Seminar

Post by Denise_Nach »

Cindy, As with you, I too hesitate to respond. I was just suprised to see them listed. 7 years ago we were told by them that nothing could be done for our child and he would just have to adjust and live with it. Unfortunately we then missed out on the prime time to have the primary surgery done. Which is why the name caught my eye being part of the Consortium. I am actually glad to hear they have some drs. specializing in bpi now. I remember Lisa D. mentioning to me several years ago that a dr. from NY was moving to Hershey who worked with the team at TCH. I was wondering if one of the drs. listed for the days seminars was that dr. from Hershey and if maybe he or she might be an option for a second opinion. I didn't mean to start a debate. Your post directed us to your website for information so I assumed you had further information about the sponsors. I was just asking a question and purposefully didn't mention why I was asking so as to not sway the direction of the thread in a negative direction. It was an honest question.
m&mmom
Posts: 1395
Joined: Sun Nov 04, 2001 9:34 am

Re: Brachial Plexus Seminar

Post by m&mmom »

Denise,
The guest post was the one that could have possibly started a debate and I didn't want to see that happen. Any time someone mentions another doctor vs TCH around here it seems to happen rather fast and I wanted to keep the focus on the seminar. Believe it or not I have actually gotten a couple of emails starting trouble. I also just checked the updated brochure I received the other day and Hershey Medical Center is no longer on the list. My apologies for any misunderstandings. Thanks.
Cindy
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Re: Brachial Plexus Seminar

Post by admin »

this looks like a very educational meeting
thanks
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Brachial Plexus Seminar

Post by admin »

Although I know there are some people who feel it is their "duty" to protect and promote their doctor and not engage in anything that might involve another doctor. It seems quite immature to me that you wouldn't try to find some new information or point of view that is out there. NO ONE knows everything about this injury and when information presents itself I think we as parents should put our personal bias aside and think about our children's welfare. So even If no one on this list is my personal choice of specialist or surgeon. I might learn something new from one of the speakers listed, and I would never pass it up just to stroke my own ego.
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