United Brachial Plexus Network, Inc.

I'm having to decide whether or not to have my 5 yr go through the triangle tilt surgery, for some reason this decision is not setting right with me I just need more information before I make the decision, she resembles the movements on Dr. Naths web page, and I've had the 3-D scans done and spoke with Dr. Nath. I guess I'm just looking for more info on what was gained or not after the surgery. My daughter will not get the supination because her elbow are dislocated. IF any one has some insight on after the surgery, I would greatly appreciate the comments. Thanks

I got second and third opinions from other bpi doctors. Good luck.

You have to rely on your instincts. If you have reservations, do not do it. The other BPI specialists are telling patients to slow down with this particular procedure because of the lack of research thus far. We were scheduled to have this procedure done in July, but I didn't feel good about it, so we cancelled. After we do all the research we can do, we can only go with what our intuition tells us. Get more opinions, that is what I would advise. I hope that you have peace with whatever decision you make.

this surgery is not published and he is the only one doing it. it is not proven to work. she would be a guinnea pig. i would get a few more opinions.

ALice, you can only do what you think is best for your child. Do your homework and go with your gut. We went ahead with this surgery due to the fact that Alyssa could not hold her arm straight. She kept her elbow bent and flared out to the side and after her growth spurt in February, it had only gotten worse. She even avoid using that arm a lot, but when she did she was compensating a lot when she would reach for things. She would move her entire shoulder which only gave it a more slumped appearance. She just had her initial OT evaluation this week and she can now supinate 100%, which she could not do before. She lost about 5% of her pronation, but she has only been out of the splint for 2 1/2 weeks so that is something we are working on. Good luck in making your decision.

i would get a second and maybe third opinion. this surgery is not published and no one knows it's actual goods. i would never want my child to be a guinea pig!

Dear Alice,

We are a few days before leaving for TX for the TT. This has been the hardest week of my life. Second guessing myself, maybe we didn't do enough research, maybe we should have gotten more opinions. It'll drive you absolutely crazy. All I needed was one sign and I got it. We are going through with the TT. I hope you get that sign you need. Everything will then fall into place. Best of luck,
Mary Jane from NJ

i would get 2nd and even 3rd opinions on this surgery. nath is the only one doing it, it is not published, and no one knows what the future holds for it.

I think you need to go with your gut. I think some of these doctors are all about operating. I saw Dr. Nath last year with my daughter and he was so quick to say that she needed surgery and that I should have done it a few years ago. I was so surprised because she was 6 years old and I thought she was doing really well with her arm. I was so upset, that I went back to the group I have been seeing at John Hopkins and they told me I was crazy to do any thing to my daughter's arm. They said go take her for another opinion and see no doctor in there right mind should be doing anything to her. She is to functionally to take a chance at loosing something else. So I haven't done a thing to her. I think the bottom line you need to really go with your gut. Good luck to you.

I think you really need to go with your gut. I have been seeing doctors at John Hopkins since my daughter was three months old and I have not done any surgeries on her. She is 7 years old. She is doing really well functionly. Last year I took her to see Dr. Nath because I am always looking to make sure I am doing the best for her. Dr. Nath made me feel like such a bad mother that I missed the boat on doing surgery on her and I have to hurry up and get in to him so he could do surgery on her. Well I walked out so disappointed and upset with my self. I took my daughter back to Hopkins asap because I was besides my self. The doctors there looked at me crazy and said no way should she have any surgery. No doctor in there right mind should be operating on her. If you don't beleive us take her for another opinion, I went home spoke with my daughter's therapist and decided to leave her alone. One surgery leads to another surgery leads to another. You need to really go with your gut and what is in your heart. Good luck to you. Research Research Research!