United Brachial Plexus Network

We currently live in NE, and are working with the TCH in Houston. We started this process back in December and today we are going for a CT. My daughter is 11 and she is well aware of her injury and what maybe ahead. The good news is we have never had surgery and she is at about 80%. I guess I am more worried than she is. I know today will probably seal out fate toward having surgery. As after 11 years of continious therapy we still have zero external rotation and limited pronation, among a list of other smaller limitations. She has adapted quite well and I am very proud of the hard work she has put in all these years in PT and OT. Hopefully, if nothing else she will be prepared for the long road to recovery after the surgery.

I believe the surgery we are considering is the Triangle tilt surgery. I will keep this post updated as information flows in.

I was just wondering if there is anyone else in a similar situation as us? I would love to find a pin pal for my daughter, that is close to the same age and maybe shared similar experiances.

Thanks so much for reading!


Candi and Erin

We are back from the CT. We brought home the disk, and decided to look at it. There is a huge differance between the left and right shoulders, scapula, and clavical bones.

Now I am questioning every decision I have made in the past.

really bummed

Candi

Just to clarify, it is not TCH you are working with but Dr. Nath. Dr. Nath no longer has privileges at Texas Children's Hospital and no doctor there does the Triangle Tilt.

I suggest asking to see before and after CT scans (not just one) before you decide on this surgery, if your intent is to correct the abnormalities seen on the CT scan.

Kate

I do appoligize if I stuck a nerve you are correct that Dr. Nath is the doctor we will be seeing, if we decide to have the surgery.

I am also not sure what before and after CT Scans you are asking for. She has only ever had two. One before she was two, where everything look functional, not exactly normal. And the one yesterday.

I dont take the idea of surgery lightly, I think that would be evident in the fact that She has not had a single surgery in 11 years. But the reality is, after 11 years of therpy, she still does not have any external rotation and the right arm is rotated in, I dont think 11 more years of surgery will correct it either.

Yesterday I was very emotional, not today. I will look at all the facts and have many many conversations with Dr. Nath, and our PT, OT and our doctors here. Before any decision is made, I have a strick set of boundries that the results of the surgery will need to fall under.

I was referring to before and after CT scans from other children who had had the same surgery. If your motivation for surgery is an abnormal CT scan, I would want to see how much a particular surgery affected real CT scans from other children.

Kate

My motivation is to give my daughter what 11 years or intense therypy can not.