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Anyone seen both Waters and Kozin?

Posted: Mon Jul 07, 2008 4:08 pm
by momto5
I would like to know how similar or different they are in their general approach to treatment. Specifically regarding tranfer surgery or other treatments such as OT.

Thanks,
Cindy

Re: Anyone seen both Waters and Kozin?

Posted: Mon Jul 07, 2008 6:34 pm
by katep
Cindy,

We went to see both of these doctors and they had quite different recommendations for our son. You are welcome to email me (my address is on my profile).

Kate

Re: Anyone seen both Waters and Kozin?

Posted: Mon Jul 07, 2008 7:29 pm
by Samsmom
We went to both Waters and Kozin for an evalution before doing muscle transfers. They each had a little bit different oppinion. We went with what we thought was best for our son and chose Dr. Kozin to do the surgery. I liked Dr. Waters as well but I just felt that for this particular surgery I liked Dr. Kozin's approach. We are happy with the decision we made.

Re: Anyone seen both Waters and Kozin?

Posted: Mon Jul 07, 2008 9:43 pm
by nkjacoby
Dr. Waters did the Free Gracillis Muscle Transfer for my son. I liked his approach and honesty. He did a great job and was very kind to my family and I. You may email me if you would like.

Re: Anyone seen both Waters and Kozin?

Posted: Tue Jul 08, 2008 8:12 am
by claudia
We take Juliana to both Kozin and Waters. There are times that they have been in agreement and times that they have had really divergent views.

We take Juliana to Kozin more often because he is closer and because Shriner's does a better job of getting you in on time. My biggest complaint about seeing Waters (and it isn't about Waters himself) is that the scheduling at Children's Boston is TERRIBLE. We have waited hours there for our appointment. We even almost missed our plane home because they were so bad about keeping the appointment. Perhaps it has improved since they opened the office in Waltham.

We are actually going to take Juliana to see Waters at the end of the summer or early fall.

I really like both of them. They are both wonderful with the kids and explain themselves well without being condescending.

you can't go wrong with either doc.

good luck,
claudia

Re: Anyone seen both Waters and Kozin?

Posted: Tue Jul 08, 2008 8:19 am
by claudia
Cindy,
I just wanted to add. Shriners has the policy that if they do surgery, you have to agree to come back for cast/splint removal and a week of OT with their OTs. I don't know of another facility that requires this. I am very much in favor of it. I think it will be the way of the future for post-surgical treatment of bpi. The OT policy is something that weighs in Kozin's favor as we look at potential surgery.

I just think it shows a level of committment to bpi surgery and treatment. I know it is a hardship for some. And, I'm sure there are people who have opted for a different surgeon/facility so that they would not have to travel again.

However, about a 100 years ago (or does it just feel that way?!), when Juliana had surgery, I desplinted her. I used to bring this up a lot to Dr. Shenaq. Parents should not be desplinting a child. It was nice that their OT/PT made themselves available to people's therapists, but there is nothing like being there and doing things hands on with a professional.

claudia


Message was edited by: claudia

Re: Anyone seen both Waters and Kozin?

Posted: Tue Jul 08, 2008 9:22 am
by momto5
We are just trying to decide what we should do. We live in Alabama and there just aren't any doctors here that have treated more than 1 or 2 children. It took me a long time to find this board and I am a pretty good googler! Anyway we did hear of Waters (1100 miles from us) and have an appointment with him next Wed but now that we know that Kozin is also good and about 250 miles closer to us we were hoping to get appointments in the same week but it didn't work out.

Our daughter just turned 4. She is adopted from China so we have no birth history. We adopted her when she was 26 months old so too late for the primary surgery.

You all know more and have much more experience than we do. Do you think given her age that if we waited until March and got appointments with both doctors in the same week we would be hindering progress? I just don't know how big and issue time is at her age.

I was told by one doctor that she has damage in C5,C6 and C7. She has never had an MRI only x-rays. She can use her hand she just has limitation in arm rotation and is unable to put her arm over her head.

Any comments/opinions are welcome. I now know that Waters/Kozin do have different opinions and that is beneficial for us to know. Claudia thanks for the cast/spling and OT comments that helps a lot.

We are just confused and dealing with just now coming to understand more fully the life long impact of this injury will have on our daughter. Honestly, it is a bit overwhelming.

Cindy

Re: Anyone seen both Waters and Kozin?

Posted: Tue Jul 08, 2008 5:24 pm
by Tanner's Mom
Cindy,

Overwhelming indeed. Boy, I remember those days and all the tears and frustrations that accompanied them. As parents we have so many important life altering choices to make for our children and so many doctors to chose from. I think the first few years of my son's life my head spun from morning til night. It was such a hard time and so very confusing and frustrating. Hang in there...you will sort through things and find your way.

I think our family has seen more bpi doctors than anyone I know. I honestly got so overwhelmed and confused, I thought I was about to lose my mind. We too saw Waters and Kozin. They have their similarities and differences. It really is so unique on each child and the particular surgery they may or may not recommend. Actually, after flying to many states and seeing many doctors across the nation, we ended up narrowing it down to our two final choices....Waters & Kozin and I can assure you, it wasn't an easy choice to make. We ended up going with Dr. Kozin, but I have full confidence in Dr. Waters and feel comfortable highly recommend him. If you want more info about how we reached our decision just drop me a personal email.

Your child is truly blessed to have such an advocate on her side and have such a wonderful mommy who is willing to do her homework. It is actually much more convenient and less confusing when you just pick one doctor without truly considering your options but I am not convinced that is best in the long run. It really is a process and you will come through shining in the end. You just have to pay with heartache, confusion and frustration for now...but things really will get better so hang in there. Please know you are so not alone and what you are feeling is so normal. Just lean on all of us anytime. I could never had made it through without the support and friendships I made along the way.You really can't go wrong with either of these doctors. They are both excellent and highly respected by the national and international bpi medical community and for good reason.

All the best,
Lisa

Re: Anyone seen both Waters and Kozin?

Posted: Tue Jul 08, 2008 5:25 pm
by Tanner's Mom
forgot to add...I am so deeply touched and in great admiration of those who chose to adopt a child with special needs like a bpi. This injury demands a lot from parents and shows just how caring and giving you are.
Good luck to you,
Lisa

Re: Anyone seen both Waters and Kozin?

Posted: Tue Jul 08, 2008 6:21 pm
by richinma2005
Just wondering if you have looked at this doctor in Alabama, he is in the medical resource directory:

http://ubpn.org/medicalresources/me ... naire.html

Alabama BPI Specialists/Clinics
Richard D. Meyer, MD


Response to UBPN questionnaire:
NOTE: Only questions answered are included here
When was your Brachial Plexus Injury Clinic established?

1980 Identify what specialties related to brachial plexus injuries are represented by practitioners working in your clinic including physical/occupational therapists, if any.

We have adult and pediatric orthopedics, pediatric neurology, and O.T.’s. What do you/your clinic specialize in treating?

* adult brachial plexus injuries
* obstetrical brachial plexus injuries
* trauma or other brachial plexus injuries

Indicate the total number of brachial plexus patients you/your clinic has evaluated since your establishment:

Number of children (Obstetrical brachial plexus injuries):
over 200

Number of children (Trauma or other brachial plexus injuries):
55

Number of adults (Obstetrical brachial plexus injuries):
120

Number of adults (Trauma or other brachial plexus injuries):
350 State your philosophy regarding evaluation, referral and treatment of obstetrical brachial plexus injuries in children.

We prefer to see any and all obstetrical plexus injuries as soon after the first month as possible. We then watch them monthly and begin stretching, especially the shoulder but not before one month. If they appear to have a global palsy with no return by late two months, we recommend surgical intervention. If they are progressing at a normal rate, then we continue to observe. State your philosophy regarding evaluation, referral and treatment of trauma or other brachial plexus injuries in children.

With trauma or other plexus problems, we like to see them as soon as possible after the injury. Depending on the problem at 4 weeks we get baseline electrical studies and follow as necessary with conservative treatments or intervention as necessary. We believe in controlling the pain with appropriate meds. As Neurontin etc.. State your philosophy regarding evaluation, referral and treatment of obstetrical brachial plexus injuries in adults.

These patients are all referred to O.T. to see what their true functional deficits are, what their expectations are, and then we see them and evaluate to see if we can meet their expectations with surgery. If not, then we counsel them appropriately. State your philosophy regarding evaluation, referral and treatment of trauma or other brachial plexus injuries in adults.

As with the children’s injuries, we prefer to see them at one month, unless penetrating injuries, and then do similar evaluation. We prefer to operate earlier rather than later, and will do whatever necessary to achieve a functional result, be it free flaps, nerve transfers, or simple repairs. Indicate research efforts (include dates please) conducted by you specific to brachial plexus injuries.

We are currently investigating ways to do thoracic outlet releases endoscopically. Indicate any other facts that you feel would help families and individuals understand your practice.

We are one of the oldest brachial plexus injury centers in the country, and have done many repairs on both children and adults. We also begin treatment and evaluation on such painful conditions such as post radiation, post avulsion injuries, thoracic outlet and tumors. Do you accept any national/governmental payment for services or are you enrolled in any state medicaid plans? Please provide information on these plans and include which states you are enrolled in for medicaid services.

As a university center, we accept Medicare and all state medicaid plans.