United Brachial Plexus Network, Inc.

ok so I was frustrated with TCH for no reschedule date so I made an appointment with DR Nath. Then we find out about Dr Laurent

We kept our appointment with Dr Nath and he said Dillon doesn't need primary..... WHAT???? I AM CONFUSED! Oh boy what a mess now. Dr Nath wants us to do a Botox injection into his triceps to weaken that and work hard on biceps. OK we can do that, but talk about conflicting opinions. I have wanted to go to Dr Nath for a few months now and have let the fact that he is "out-of-network" influence that decision.

Should we get a third opinion? Should we trust Dr Nath? Has anyone heard who will take Dr Laurent's place? Surely someone out there has heard from the office. Surely someone else has been waiting and waiting like us.............

Each surgeon has their own style and opinions. We have always been a fan of multiple opinions for that reason. We look at Matthew's issues, then speak to at least 3 surgeons to see who has the best approach to help his function.

Cindy

Dear Dillon's mom:

I am sure that tch will find someone to do their pediatric neurosurgery. I encourage you to call Lisa and find out what the time frame is.

Yes, Dr. Laurent did my daughter's surgery (with Dr. Shenaq), but give them a chance to get back up on their feet. It may be that Dillon doesn't need primary any more. Why don't you ask if Dr. Shenaq can see him.

claudia

I know a lot of families that were sent home prior to primary because their babies didn't need it anymore. They evaluate right before a surgery to make sure it's necessary. If it's not necessary, they send you home. Call Dr. Nath and talk to him more about this. Ask him more questions. Ask him exactly why he thought that Dillon didn't need it. If you need verification, then maybe you should consider an EMG. Best of luck.

Get as many opinions as you can, get them from other centers, get them here. Send videotapes to those who accept them, several centers as well as Texas do this. Good doctors always encourage getting several opinions, it makes sense.

Get another opinion! And if any doctor or center recommends one surgery over another, or recommends against surgery, find out how many of those surgeries they do do. Also, if you are talking about primary, ask who the neurosurgeon is who would be part of the team. Experience is very very important! That's why it is so heartbreaking that we lost Dr. Laurent, who did I think every primary surgery at TCH.

Good luck and what tragic timing for you and Dillon

We got turned away from primary by Dr Laurent on the 20th of October because Dillon had a slight cough.

On November 6th Dr Nath says no surgery needed... That is what is so confusing to us. Such a drastic difference of opinion from Doctors that used to work together.

Sending a tape to another doctor is a GREAt idea. Which doctors accept tapes for evaluation?

THANK YOU!!!!!!!

I would ask alot of questions-ask Dr. Nath, why is Dillon not a candidate for primary (is he showing a "flicker" of biceps, etc) or what is Dr. Nath seeing in Dillon that makes him want to go the route of botox? Also, when was Dillion last evaluated by TCH for primary? Have you noticed a change/improvement since then? I don't recall but how old is Dillon? Good luck with the video tapes-I don't know who else takes them but I think most of the bpi docs would atleast make an inital assessment of Dillon this way. Our daughter had primary at TCH (w/Dr. Laurent and Dr. Shenaq) and has also been to see Dr. Kozin at Philadelphia Shriner's. We've been very happy with both of these hospitals.
Shannon

I agree that another opinion is warranted here. And ask Dr. Nath why your child isn't a candidate anymore. Maybe there is progress that he is seeing (yeah if that's the case). Dr. Waters in Boston takes videos for evaluations, too. Here's his contact info.

E-mail: Peter.Waters@Childrens.harvard.edu

Dr. Peter Waters
300 Longwood Avenue
Boston, MA 02115
Phone:(617)355-6021 (Nurse at this phone number is Paula Donahue).

Good luck.

Tanya in NY

ok so we saw a third specialist and he said no primary nerve graft surgery needed........

WOOHOO!