United Brachial Plexus Network, Inc.

Hi , Vanda here my son 13 years robpi was told nothing could be done as well other than just try to strengthen what is there by standard physio exercises.We had limited success with that and his shoulder deformed as well. But don't lose heart, the Drs already mentioned are excellent drs and should surgery be of help they would be excellent people to consult. Please know that some very good drs have success approaching the same problem from a different angle with different surgical techniques - but there are many great success stories from all of them and their varied techniques -but find out how each one would approach your son's condition and why. One dr. you must also check out is Dr.Pape in Toronto. She is not a surgeon but her techniques work absolute wonders - my son has had incredible gains since starting to follow her protocols last spring. If surgery is in the picture you will want to make sure you have gotten the muscles to their best . There may be some recovery hiding there that you haven't been able to tap into with what you have been doing so far. There was huge gains for us once we started following her protocols and we are not done yet. The new recovery we are seeing at age 13 is so dramatic it is likely to change the surgical recomendation. Even if it does not change the surgery needed it gets the maximum potential use of the muscles back which should make surgery more successful.Please feel free to e-mail me and do check out Dr.Pape's site at www.tascnetwork.net and check out the conferences she is having in Toronto to help therapists, drs and parents know what to do and when - for the best results and recovery. And how to prepare for surgery and get maximum recovery afterwards. This has been the most helpful thing for my son in 13 years of dealing with this-there is new hope.

Hello Tammy,
Welcome to the message boards. We take my three year old son to see Dr Nath. We have been extremely pleased with him and the amazing results we have seen in our son. Dr. Nath has been there for us like family. He is only an e-mail away, when I have questions or concerns he is quick to respond with a plan. You can mail him a video of your son and see what he thinks before you make a trip to Texas. Here's his web address...
www.drnathbrachialplexus.com
My son Bradley had a primary nerve graft, Mod Quad, and the acromioplasty which addressed his shoulder dislocation and deformity. As I said, we are amazed at the results and couldnt be happier. Good luck to you and Blake. I am thankful there are specialists out there that can help our children. If you have any questions, please ask. We are here to help and support you. I'm so glad you found this site:-)

Dr. Rahul Nath in Houston.
www.drnathbrachialplexus.com

All the best to you and your son.

Janet

I have not posted in a long long time but felt I should answer this question as well. We have had evaluations with Dr. Nath in person and TCH video with Dr. Waters. I love Dr. Waters- he manages Kailtyn's case and responds by personal e-mail within hours. He spends a long time with us in the office-and answers all our questions. he is very please with Kaitlyn's progress and suggests no surgeries but monitors her by visit and yearly MRI now that she will be 5 she has her first Cat scan in Feb. I feel he is very careful about suggesting surgeries and I myself find his manner and professional ways to match our thinking way better than other doctors we have consulted with. The best thing is to meet with several and go with your gut as they're recomendations do not always agree. Prayer sbe with you.

Hi Tammy!!! We have been going to TCH and Dr. Nath. They are all wonderful doctors. We are going to be start going to Boston Children's in January. What part of TN are you from. I am also from TN. Feel free to email me personally. Best of wishes for you and your son and your family.
njacoby499@yahoo.com

Natalie

Hi Tammy and welcome to UBPN. Im sorry to hear about your son. I too, have a son, age 12 that is traumatic brachial plexus injured. Accident in 2003. He has surgery with Dr. Shenaq at Texas Childrens Hospital last April, and sadly to say, they are no longer excepting new patients because they have put the BPI clinic on hold because the deaths of 2 Drs. down there. But, Im not saying he still isnt a possibility either, depending on what is recommended for Blake. Just search around and ask all kinds of questions. People around here are great with help and this site has alot of info offered. I live in NC, on the NC/TENN line, so not too far from you probably. E mail me if you like.

Our son has had surgery at two different clinics. Texas Children's and Shriners. We are beyond thrilled with the results of Matthew's past surgery from Dr. Kozin at Shriners.

We have consulted with many different specialists over the years and the best advice I can give you is that we feel it's beneficial to gt multiple opinions because each doctor has a different approach. Some facilities perform surgeries other's don't. Ask questions, do your research, interview doctors via phone/email.

Welcome to the boards.

Cindy

I personally would suggst that you meet with Dr. Shenaq. For our family, Nath was NOT the answer. There are a great many people who think that he is only doctor worth seeing, but I am here to offer you some more suggestions. Dr. Shenaq was actually Naths boss at TCH. He is a HIGHLY skilled surgeon and a very kind and loving man on top of that. The minute he steps in the room you see his love for these kids. AND he is not too quick to operate even though he is a surgeon. My child has a severe injury and I know that had we gone to other doctors, we would have had a LOT more surgeries than we have had thus far. We are not done by any means, but Dr. Shenaq is allowing the body to react to the work done previously, instead of rushing into a surgical procedure, even if that procedure may be needed in the future. Also, you may want to look at insurance coverage. These surgeries are VERY costly, notot mention all the travle expenses that you will accrue. I have heard that there is a doctor doing these surgeries that does not accept insurance. This may have changed recently, but I would investigate it if I were you. The bottom line here is to get multiple opinions (you can still schedule an appt. with Dr. Shenaq in his office-you just will not be in the TCH building) I just needed to tell you that from my experience and from others that I have spoken with, not all of these doctors are created equal. Do your homework and beware of a surgeon that is TOO eager to operate. Good luck to you.

Where is Dr. Pearl located? Thanks.

Dr. Pearl is in Los Angeles, but I haven't had any luck getting hooked up with him. He is at Kaiser Permanente along with Brad Edgerton. I have heard that they will see people outside of Kaiser, but it is quite expensive. When I called in June, the nurse didn't seem to know anything about that and said she'd "look into it". I never heard back from them after that.

Here's his email from a recent paper of his, you might try that:

michael.l.pearl@kp.org

Sorry I can't be more helpful.

Kate