United Brachial Plexus Network, Inc.

Hello everyone,
My daughter, Kalyn 9 months, has just been diagnosed with a neuroma. The doctor (Dr. Abbott at Beth Isreal)thinks she needs a nerve graft. We have appointments with Dr. Waters in Boston and Dr. Kozin at Shriners for more opinions. I am very interested in getting input from those that have gone through this. Kalyn has just recently been able to play with her hair and feed herslf a cracker while laying on her back. The elbow extension is slight but there, and she is doing the army crawl pulling her shoulder forward. She cannot get her shoulder above 90 degrees while sitting. The therapists say she is still improving. I am finding it very difficult to decide wether to have the surgery or not. Will she improve on her own? Will the surgery allow for significant improvement? Will she need multiple surgeries to get back to where she is? AHHHHHHHH! So I was hoping that those that are dealing with this and that have dealt with it could tell me their stories and help me with this imposible decision. Thank you!!!!
Tiffany

I think it is great you are getting 2nd opinions. We brought my 10month old to see Dr. Abbott when she was 2, 3 and 4 months and he suggested nerve surgery. we went on to see 3 other bpi specialists who said that she did not need nerve surgery but probably secondary surgery (muscle/tendon transfer) in the future. I was told by one BPI specialist that most specialists agree when nerve surgery is/is not needed. However, many of them disagree on when/if secondary surgery is needed. I am just so happy that I did not listen to Dr Abbott and have the nerve surgery when my duaghter was 4 months old. She has made so much progress since then. Most people do not know she has an injury. This is just our experience with Dr abbott. I am sure there are many out there who have had good experiences. I really feel 2nd opinions are so important. If for no other reason but to educate ourselves as parents. Good Luck.

Who decides when and if to have the surgery? Is it recommended by the bpi specialist or neurosurgeon or is it something that we as primary caregivers decide with the recommendation from their doctors? At what stage of improvements with PT would I know if my daughter might need surgery? We've been wondering this ourselves where we are new at this whole BPI injury with an infant 2 months old -- injured on her right side during delivery.
If you have any suggestions and/or recommendations as to what we should be looking for, please let us know. Comments are welcome albeit negative ones too. I would like to find out pros and cons of surgery as well.

Hi!!! I'm sorry to hear that you have to go through all of this. You came to the right place to talk about things. My daughter, Hannah, had nerve surgery at TCH when she was 6.5months old. She had neuromas on the C5&C6 nerves. She had several nerve grafts done. She did also have secondary surgery at 11 months old. She is doing great, and is 95% recovered. I don't regret the nerve surgery at all. If you are not sure get another opinion. Go with what your gut feeling tells you. I will only say one thing that the nerve surgery is time sensitive. The other surgeries are not. The nerves die after 1-1.5 years. This is why the surgeons like to do the nerve surgery before a year old. Good Luck with your decisions. I don't think Dr. Kozin or Dr. Waters do alot of nerve surgeries, they do more of the secondary surgeries. Others on this board would be able to tell you this. TCH does look at video tapes of your child for free.

Good Luck and go with your heart,

Lisa

Lisa, Thanks for listening and taking the time to reply. We haven't even talked about surgery yet but I'm learning alot from the loads of information and topics discussed in detail. We are doing therapy with her every chance we get so the arm, hand, elbow and shoulder don't freeze the muscles. ROM seems to help but I'm also doing stretching exercises because her hand is cupped like a waiters tip. We go back to see the neurologist again for her 4 month check up. From your experience would you recommend it be in our baby's best interest to speak to him about surgery? In the meantime, therapy once a week seems to give us a great chance to see hands on what exercises best fit her needs at this early stage. Would it also be your recommendation to explore the idea of surgery with her neurologist if we don't see major improvements by 4 months. If he declines would you also recommend we seek a second opinion at that point. I'm not afraid to speak my opinion especially where we are her best advocate to seek out the best care possible for her advantage. If we decide to seek out a second opinion do we have to submit a video before Dr. Waters will meet with us and see her? We have been told that there are a great group of doctors at NEMC in Boston. She is currently under the supervision and guidance of the neurologists/specialists at NEMC.
Thanks,
Trish

Hiya Trish
This is definately a decision that the parents make, as caregivers, I am here to tell you we declined the original advice to have surgery ASAP by two seperate BPI surgeons(aka specialists?) and we have experienced good recovery, actually even one of the surgeons said we no longer needed it, that was a while back and we have not been in to see the surgeons again at this point in time,
It is YOUR decision

Here's a good page for you to read:

go to the home page of this site
and click on the link on the right side for INFORMATION FOR NEW PARENTS

there it talks about timelines - functional assessment, etc.

Also - now would be a good time to also read the general brachial plexus page and the obpi page in the awareness sections here - go to the home page and click on the right side on anything that says Awareness and then go to Resources area.

You get a neuroma when you have a rupture. (rupture = tear) It could be a complete rupture or it could be a partial rupture. A neuroma happens when two torn nerve ends try and grow together - but they don't know how to do it - so they create this gristly hard white growth. Sometimes some of the nerves within it actually connect and sometimes not.

Since primary surgery is a very important surgery, it is my opinion that you want to go to the BEST there is. A top bpi specialist neurosurgeon will be able to easily assess whether there is a need for primary or not.

I wish you and your little one the best,
francine

http://www.injurednewborn.com/maia/homepage.html

Trish and Tiffany
My son was about 1 or 2 weeks shy from being 10 months when he had primary. The surgeon told us that because he was "older" that we could only expect about a 85% of recovery but had he been in sooner to have the surgery that he would have had a higher recovery rate. I wish I would have taken him to TCH sooner for surgery...
Paula

When we went through our decision, we got opinions from 4 surgeons, we did one consult on the phone with a nurse in a BPI group, we discussed with our dd's pediatrician, OT, PT, and neurologist. What helped me was really finding out if they would recommend it and why (or why not), would they think she'd still be a candidate later on, the pros and cons to doing it now or later, the outcomes I could expect with/without surgery. Once I understood where their philosophies were coming from, it made our decision much easier. We were able to decide for ourselves what made the most sense to us, which philosophy followed our own goals for our child. FYI, we did not have much consistency in our answers from the surgeons...so it did make it a harder decision for me. I'm sure most will find that there is a wide variance of opinions among the specialists.

Hi Paula,
Thank you for your reply. I am so sorry that you too had to make this horrible decision.
My heart skipped a beat when I read how you regretted being able to do the surgery earlier. I am terrified that it is too late for full recovery for my daughter.
I am wondering how your son is doing now? Was the surgery worth it in your opinion? What has he recovered?
Thank you for your help, I know that this isn't easy.
Tiffany