We live in NE. We have an apptment with Dr. Kozin in PA on April 9th. After speaking with our local Shrine/Temple. They "want" us to go to the Shriner's hospital in MN. It was crushing for me, because after reading here and researching, I had my heart set on meeting with Dr. Kozin. (Which I think we will still do.)
The BPI specialists in MN include Moran (from Mayo) and Ann Van Heest (Gillette). Has anyone had any experiences with either of them? Why does PA seem to be a more popular choice? Maybe Philly is closer for you than MN or are there other reasons?
I searched the message boards with key words and all the information that I read was from 2001-2002. I am hoping for something more recent. (Dr. Drake was mentioned then, but was not one of the names I was given.)
Thank you for all of your information.
Nicole
Cole's Mommy (10 month ROBPI)
Shriner's in MN
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marieke
- Posts: 1627
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- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
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Re: Shriner's in MN
Amy can give you some insight on this, she lives there and was a patient there until recently, she still sees Dr. Moran too.
Good luck!
Good luck!
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mommieinneed
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Re: Shriner's in MN
I had the same response from our local Shriners. They wanted us to see someone closer, well we did and it sucked. They just told us that if a closer Shriners could work that it was easier for them to help out.
We saw the local Shriners and are now going forward with seeing Dr Kozin. Hopefully we get a better outcome from him then we did our local Shriners.
We saw the local Shriners and are now going forward with seeing Dr Kozin. Hopefully we get a better outcome from him then we did our local Shriners.
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hope16_05
- Posts: 1670
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- Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
- Location: Minnesota
- Contact:
Re: Shriner's in MN
Nicole,
I have to say, I love the shriners in MN! I have only had one bad experience there and that was with Dr. Van Heest. I am thinking that she does better with little kids and not teens. I have heard nothing but good things about her but my experience was not good at all. If you want details, please email me and I will explain the situation hope16_05@yahoo.com
I love Dr. Moran, I think he is the sweetest Doctor ever and is very willing to do whatever research is necessary to help. He will contact all the other specialists to fid a solution. In my opinion, seeing Dr. Moran is a lot like seeing Dr. Kozin an dyou will get very similar answers because if Dr. Moran soesnt know it right off the bat, he does not hesitate Dr. Kozin. If you choose to go the the shriners in MN I think you will get the same response that you would from Dr. Kozin. I have been seen by both doctors and I would trust them both equally. I still see Dr. Moran but I still keep in touch with Dr. Kozin, they are both greta about answering my questions.
I still get to see Dr. Moran even though I am no longer at shriners (too old) because he works at Mayo too. That mad ethe transition into being an adult much easier knowing my dr will still be able to see me and I wont have to switch.
The post about Dr. Drake that far back was probably mine. He did my first surgery at the shriners in MN but as far as I know he is very retired. He was really old when I was 5, lol.
If you have further questions or I missed anything please et me know but I think you would be please with the care at the shrines in MN. Good luck with what ever you decide!
I hope your little Cole is doing awesome!
Hugs,
Amy 21 years old ROBPI from MN
I have to say, I love the shriners in MN! I have only had one bad experience there and that was with Dr. Van Heest. I am thinking that she does better with little kids and not teens. I have heard nothing but good things about her but my experience was not good at all. If you want details, please email me and I will explain the situation hope16_05@yahoo.com
I love Dr. Moran, I think he is the sweetest Doctor ever and is very willing to do whatever research is necessary to help. He will contact all the other specialists to fid a solution. In my opinion, seeing Dr. Moran is a lot like seeing Dr. Kozin an dyou will get very similar answers because if Dr. Moran soesnt know it right off the bat, he does not hesitate Dr. Kozin. If you choose to go the the shriners in MN I think you will get the same response that you would from Dr. Kozin. I have been seen by both doctors and I would trust them both equally. I still see Dr. Moran but I still keep in touch with Dr. Kozin, they are both greta about answering my questions.
I still get to see Dr. Moran even though I am no longer at shriners (too old) because he works at Mayo too. That mad ethe transition into being an adult much easier knowing my dr will still be able to see me and I wont have to switch.
The post about Dr. Drake that far back was probably mine. He did my first surgery at the shriners in MN but as far as I know he is very retired. He was really old when I was 5, lol.
If you have further questions or I missed anything please et me know but I think you would be please with the care at the shrines in MN. Good luck with what ever you decide!
I hope your little Cole is doing awesome!
Hugs,
Amy 21 years old ROBPI from MN
Amy 28 years old ROBPI from MN
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dsk727
Re: Shriner's in MN
Thanks for posting information. We are taking our daughter to Gillette for the Brachial Plexus Clinic and evaluation in May. I assume she would see Dr. Van Heest. She was seeing Dr. Breningstall a nuerological pediatrician formerly with Children's Hospital in Minneapolis and now he is also with Gillette. I hope your experience with Shriner's is a good one!
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ZaidraZavian
- Posts: 44
- Joined: Thu Sep 02, 2004 4:15 pm
Re: Shriner's in MN
That is funny how your local Shriners suggested MN. We live in Baton Rouge, La. and our local Shriners only asked me where would I like to take my daughter and I told the PA, to see Dr.Kozin. That was 3 years ago and they have paid for me to take her ever since. But don't give up. The doctors in MN may be wonderful physicians. Good Luck!
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Cole's Mommy
- Posts: 95
- Joined: Sat Dec 15, 2007 2:48 pm
Re: Shriner's in MN
Good News...our local Temple is paying for one of our plane tickets and our hotel stay in Philly. We made it in using a loop hole...the MN Shriner's does not see children under a year, and Cole is 10 1/2 months old...so it worked for this appt. Our appt. is April 9th with Dr. Kozin. I will feel better having him see Cole and hearing his opinion about the possibility of continuing care in MN if necessary.
I will update when we come back!
I will update when we come back!
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Cole's Mommy
- Posts: 95
- Joined: Sat Dec 15, 2007 2:48 pm
Re: Shriner's in MN
As Always Amy 
, Thank you for all of your information and words of encouragement!
, Thank you for all of your information and words of encouragement!