United Brachial Plexus Network, Inc.

I know the feeling, been there once before.
I almost was on my way to texas but my insurance was a bit of a problem, but sometimes things happen for a reason. I found Dr. Grossman in Miami, and I love him. I do agree with someone above that you should also go with your gut. But second opinions are always good as well. I had seen Dr. Grossman and he suggested surgery and I had also seen Dr Nath with TCH and he suggested surgery as well. Feel free to email me if you have any questions sleeplessinfl2000@yahoo.com
Good luck,
Dana

There is a certain amount of choice that you lose by going with a "free" system. This system is "program defined". If your child doesn't fit into the "program" then they are sent away. If your child needs certain modalities and those modalities are not part of their current study protocols, your child won't receive those modalities (i.e. electrical stimulation). If you do not agree with the surgeon on certain things, you will be asked to leave the program whereas in a paid system, this wouldn't be a problem. I know of a few families that received therapy on an ongoing basis at Shriners but once they disagreed with the surgeon on a particular surgery, they were asked to leave. There's something wrong with this thought process and it doesn't matter how good the surgeon might be if this is the thought process he is using.

As far as therapy going, I don't believe that has anything to do with who the doctor is. My son had primary surgery and less then a year later he didn't need therapy of any kind. My son was able to crawl at 8 months old with no support. He didn't need therapy for a year and a half, until he had his recent surgery. I think the issue of therapy has to do with the individual child, not who is doing the surgery.

Kara,
None taken at all, we go there and I know the billing process. I get questioned a lot from people on this board about why we switched from TCH to Shriners and cost being an issue so I try to rememeber to state that cost isn't an issue when I post.

A lot of people here feel that TCH is the place to go and personally I don't agree with their secondary surgeries so we choose not to go there.

Normally whenever a question gets asked on which clinic is the best it gets emotional because we all feel that we're making the best choice for our children.

Cindy

Kelly,
I feel that this past surgery had everything to do with it. Should we have chosen TCH for caps at the time Matthew was dislocated we would have had a failing procedure to repair it. After attending the symposium I know that Nath's new procedure would have addresses a secondary issue of Matthew's dislocation not the root cause which was anterior capsule tightness. Cutting bones would have solved the problem short term but his arm would have still continued to be pulled in. His arm is now in the proper position with free motion.

Cindy

Guest,
I do find this odd, possibly the parents got offended and blew the story out of sorts instead of working through the issue. I'm not going to get into the conversations I had with individuals when I was disagreeing with the caps surgery, I can see how parents would get offended. I have several conversations about e-stim there and haven't had an issue and we still continue to go there.

As far as thought processes go if the surgeon had a procedure that would give my son a remarkable recovery I would put my differences aside for the time being and help my child, I would not let that get in the way. I'm loyal to whoever can help my child at the time not what's going to happen 5 years from now. I know for a fact that Dr. Kozin has told people to go to other institutions and he would perform the follow up. There's always 3 sides to the story. And as far as other people being asked to leave clinics it happens at well known clinics also. I know another family who was recommended to have surgery from a Shriner's surgeon and they denied it (I don't agree with it, the surgeon doesn't agree with it) however they still continue to go.

Cindy

Cindy,
I don't have a problem with you, or what doctor you use. I just don't agree with you bashing other doctors. That is what bothers me and I'm sure others. I'm glad Kozin is helping your child, that is what we as parents do, find the doctor that is best for our child. Each family is different and so is each doctor. We look for the doctor that will help our child. We shouldn't be fighting over who's doctor is good and who's is bad. These doctors wouldn't be doing what they do if they weren't any good. You don't like Nath, that is fine, but give it up. We should be helping this parent get through this, not telling her which doctor is wrong. They have the degrees we don't. I go to Texas, because I feel that is right for my child. I'm not going to sit here and tear down all the other doctors out there. This is crazy. I'm not trying to step on anyone's toes. I'm sorry if I offend anyone. I just think it is stupid to fight over doctors.
Kelly

Excuse me, I saw no where where Cindy was tearing down Dr. Nath. She simply stated the fact that the surgery he was offering wasn't the one she choose for her son. I see no reason why every time a conversation like this comes up people need to get all clicky. The OP asked "if you didn't like a doctor for a specific reason and it may help someone else, tell us why." Cindy simply does this and ends up getting her butt chewed. Other posters gave reasons why they didn't choose various other Drs and yet narry a word is said to them. This is ridiculous.

I am making a request that all continue to be respectful of others in their posts. We don't want to stop the flow of conversation but we also don't want others to feel that they are being attacked. It is a fine line and the board moderators will be using their best judgment in either deleting or allowing posts to remain. Please try to understand.

Nancy Birk
UBPN President

Our son wasn't diagnosed until he was nearly 4 mos old, neither the OB or Pediatrician told us, just simply it would resolve itself by the time TJ was 6 mos old and he might need a little physical therapy at about a year old--- wow does that feel like a lifetime ago!
A cousin I was visiting (she's an ot) looked at TJ and told us it was erbs palsy and to get him to a neurologist right away- the soonest appointment was 8 weeks later!
I did as much research as I could at that time on the internet- that's how I originally found the boards (very different back then!) I found out about TCH and the great works they were doing, about Dr Grossman, the Philly clinic, the thought of flying all over the country was daunting. When we went to see the neurologist we were told we had an expert in our own backyard, we were referred first to Dr Zimbler at Boston Childrens (he no longer performs surgery) and from there referred to Dr Waters- we did send a tape to TCH when TJ was about 6 mos old but we were told the same thing that Dr Waters had told us, we were comfortable having Dr Waters so close by, he's been doing erbs studies for years, and he's one of the leading experts. He's published countless peer reviewed articles and I'm glad we made the decision we did.
Although we would have gone anywhere in the world to get TJ what he needed, it felt that much nicer having all of our family nearby to help out after surgery. I also have to say Dr Waters is more conservative when it comes to surgery, in my opinion, you'd be hard pressed to find another doctor NOT recommend surgery when Dr Waters has. I also have to say I've met other children and families who've had surgeries with Waters and elsewhere- and by far, the scarring left after surgery has been the best with Dr Waters-- based on what I've seen- keep in mind, I've only seen a handful of kids scars- 15 tops. If someone is looking at TJ, they would never find his scar from his first surgery, this could be all me from scar massage and such- or it could be the surgery style (I'll still take credit he looks so good) but other kids with Waters that I've seen are the same way.
We were much more comfortable with a wait and see approach based on TJ's recovery from birth- he had only finger movement, no thumb and the rest of his arm had no movement until he was about 3 mos, then he started raising from the shoulder. We were not looking to rush into surgery for something that could resolve a little more with time. We did finally decide on Dr Waters' secondary surgery when TJ was 20 mos old, and he was dislocating, nothing aside from the surgery was going to correct that. Now again, TJ is almost 5 and we're going in for the Osteotomy- this surgery could be done later in life, but we're of the opinion, it won't change the fact that the surgery is needed, and we'd rather do it before he's in school fulltime this september.
Your decision should not be based on anyone elses decision, it should be your own- go with what you feel is comfortable, go with your gut like someone else said. You will find the right doctor for your family, right in your backyard, or maybe around the world. We each do what is best for our own families.