United Brachial Plexus Network

i have been doing the wait and see game 3yrs from every doctor who is in that theory of wait and see. i have been here for 3 years and i have not worked and have dedicated the last 3 years doing research and traveling to everyone in the us. what is so troubling is that we have no consensus of treatment. dr. nath / no negative thoughts please!!!!!!!!! was at a Picnic today and proved to my gut that this is what i need to do. i am well educated and very informed and the thought that waiting could not be the best thing makes since. i now that the non nath users have very different opinions but, i really want to here from the people who have had the mod & tt. i decided not to have the surgery from what i read from others before. the thing is that what if he /nath is wright? i am scared but confident that i am making the right decision. please anyone with uplifting stories of successful surgeries please email me mshatraw@aol.com

thank you
please no dogging the docs
michelle mom of 3yr robpi

My son had Mod Quad (NO TRIANGLE TILT) at 14 months old. HE had nothing, I mean nothing, he couldn't have reached the top of his head is his life depended on it. He couldn't bring his hand to his chest, his arm was still just hanging there. He did have primary but we hadn't seen any results yet. As soon as we went to the clinic to get his splint off, mind you we lived in Houston at the time, so we took him back to Dr. Nath for splint removal, something that Dr. Nath doesn't see much of. I had given Brandon tylenol before we left thinking it would help with some of the pain. Dr. Nath took the splint off and laid Brandon's arm to his side carefully, all of a sudden Brandon had an itch and raised his affected arm to his head and touched the top of his head to scratch it. WOW, Dr. Nath left the room to compose himself and when he came back in he said that he had never seen that before and he was overwhelmed and he apologized. Brandon is now 8 has not had FORMAL therapy since he was 2 and is doing great. He literally does just about everything else everyone else does. There are a few things he has to work at, but it's too early to think of them right now. Dr. NAth is truly an incredible man, let alone a wonderful doctor, that is my opinion. Last time we saw him, about a year ago, he was amazed at Brandon's progress, you have to do what you feel is right. There are always CRITICS. GAYLE mom of Brandon 8 1/2 ROBPI !! If you want I can send you pictures of Brandon just send me your e-mail address.

I will also add here, that I can only speak of my experience with the staff at TCH and Dr. Nath, we weren't really afforded the oppurtunity of a second opinion, because we were military and it took all the scissors I had to cut the red tape that they put in front of me, just trying to get him to TEXAS, there was no way that I could've fought for another opinion. In some ways it makes me sad that I Wasn't able to secure that second opinion, but in other ways, I am glad because I didn't have to weigh two totally different opinions and figure out which was right.


Message was edited by: brandonsmom

Hi Michelle,

I know for me, I would want to know of the sucessful and unsucessful surgeries. My son had the mod quad and tt. Mod Quad did seem to give him more overhead movement. After tt Peyton looked great! We were working really hard to get his overhead movement back. But about 9 months post op the typical posturing returned. Arm is rotating back inwards, scapula has elevated again, in fact, it is elevated more than before surgery. Dr. Nath told me this. We were told to redo the surgery. I know there are several other children who have regressed after this surgery also. This surgery is so new, there are no long term results on this one. Dr. Nath could not guaranty that if we did the surgery again that Peyton would not regress again. So for us we are waiting. It is different for everyone. Peyton has the tt when he was 7yo. I am just sharing our experience, I guess it's not the uplifting story that you are looking for but I feel I need to share. Good luck in your decision.

Michelle

I too listened to specialists and doctors who took the 'wait and see' approach for 2 years with my daughter. I found Dr. Nath early in 2006- when my daughter was right at 2 years old. Dr. nath performed the mod quad at 25 months (5/11/06)- and we saw incredible results. She went from raising her arm about 70 degrees actively to 120 degrees- which is where we are now. What incredible results!

We had the triangle tilt 11/15/06- Olivia was 31 months old. At first I was disappointed. Even though I knew it wasnt realistic I wanted immediate results- which I did not really get. We are now 3.5 months post surgery, and it is to the point where I literally see improvement EVERY DAY! She is doing things like attempting to butter bread herself- and not doing a half bad job! She is reaching across herself, and using her left arm to do things when she would have used the right before. What tremendous progress!

I too have met other parents who, for whatever reason, did not like dr nath. To them I say- we saw many doctors who offered no hope. This man is the only doctor who has offered us any hope. He has HELPED my baby- and for that he is my hero.

Veronica
Mom of Olivia, 34 months, Bi-OBPI

Michelle, you shouldnt let anyone talk you into doing or not doing anything. It is your child and your decision, whatever it may be.

Best of luck to you!

Mandie

Marnie,

Has Peyton regained all of his overhead that he had before the TT?

Kate

Hi Kate,

yes, Peyton has regained all overhead movement, but did lose supination and other movements gained from surgery.

My son had primary(nerve)surgery with grafting at 5 months and a secondary surgery incl. mod quad and the predecessor to the TT at age 2.

He is age 6 now and has ~85% use of his arm. Only trouble he has is with supination.
We see our doctor every 6 months. Last visit was in January and he got a thumbs up.
He is out of therapy and has been for about 3 years.

We do stretching at the shoulder and elbow to loosen up those areas. He is also on the TES machine at nite for muscle growth and to help with very minor winging.

All in all he is doing great!!!!


Message was edited by: Matt's Dad

Hi all,

I've been reading your posts, as our daughter will almost certainly need secondary surgery and I'm trying to educate myself about it. Aria is a bilateral OBPI, but only needed primary surgery on her right arm. So, secondary surgery is almost certain on her right, and a possibility on her left.

I agree with what all of you said about not dogging doctors!!! It's so hard to find a doctor you trust - especially after it was a doctor who facilitated in the injury we are all dealing with! If you find a doctor you can trust with your child, it's such a godsend.

We go see Dr. Kozin, who we trust completely. And, I've noticed from many posts, those who take their children to Dr. Nath have only positive things to say.

As Aria had primary only 1 month ago, secondary is a while off. However, I would truly appreciate more information. My e-mail address is: m.hemingway@adelphia.net Especially if your child had both primary and secondary - I would appreciate knowing how long it took your child to recover from primary, what movements they got back, and how you knew it was time for secondary.

Thank you so much!!!

Hi brandonsmom

I am considering nath for both surgeries and I have a 2 year old with ROBPI. I would love to see pictures. It is such a hard decision as there are lovers and haters of nath...I would love to hear more..pook779@sbcglobal.net

Holly