Nerve Surgery not recommended, HELP!

[crystalline]

Well, I could use a few opinions from all of you. Lily has an ROBPI and is now 8 months old. We go to the Brachial Plexus treatment center in Akron, OH and they have been great, our orthopedic surgeon has learned from Dr. Kozin so that has been very reassuring.

Because Lily has plateau ed, they referred us to the Pediatric neurologist at Childrens. She had an EMG and we met with the Dr. yesterday. He does not recommend surgery for her because she has had good recovery.

I am confused because she still has no useable function in her arm, she cannot bear much weight on it and can only barely get it to 90 degrees and cannot reach her mouth. The EMG said that her hand is getting good nerve signals and it gets worse the closer you get to her shoulder. She can't even reach her mouth, how is this a good recovery!

He offered to do an MRI and then maybe go from there, but he also stressed that the scar from surgery and the 50 percent chance of it working just wouldn't be worth it.

Who has had nerve surgery or hasn't and what do you think? We have little time to make a decision and we just don't know what to do. What if we push for the surgery and it doesn't work and she has this big scar and we put her through it for nothing? What if we don't and it could have made a huge difference?

Thanks, I really appreciate anyone that has input.

[katep]

I would get a second opinion ASAP. I think you can make a movie and send Dr. Kozin the youtube link.

I would not settle for that recovery if I were you. Microsurgical techniques have come a LONG LONG way in just the last 5 years. Most surgeons are now doing very targeted repairs rather than the attempt to just reconstruct the entire plexus like was done just a few years ago. These targeted nerve transfers can tremendously boost recovery. I think the rate of improvement is vastly better than 50%!!

Kate

[Kaiden'smom]

I also would recommend getting a second opinion as soon as possible. If you call Dr Kozin, he can usually get you in pretty quick. I don't think I'd want to rely on a video eval for this with such a short timeframe left to get the grafts done if needed.
My son didn't have a nerve graft, he gained back biceps at 6 months and it was decided he didn't need the grafts. He's now 21 months and doing very well. Dr Kozin did do the ACR surgery at 11 months old, after we had an MRI done at 8 months old and his shoulder was subluxed. He gained back external rotation from that surgery, but hasn't gained much height. He's gets up to about 90 degrees, sometimes a little bit higher. We go back next week for another follow up visit.

[3princessesmom]

Crystal,

I too, like these others would recommend you getting a second opinion. Our daughter just turned a year old with a ROBPI- she had nothing, the term they used for her was a "total OBPI." We traveled to see Dr. Kozin in December, because all of the doctors here where we lived just wanted to experiment on her. Abby underwent surgery in March and from then to now has regained hand, wrist, extension to 90 degrees. Of course I realize that our daughter was much more severe but you have to be the ones to advocate for your child. We love Dr. Kozin and his team, and trust what he says. He has done wonders for our daughter- I would at least see if they could see your daughter for a 2nd opinion. Please let us know what you decide to do!
Anna

[katep]

I just suggested a video because while you are waiting for that appointment you can get an initial impression and talk to Dr. Kozin about your daughter. He could also probably tentatively schedule the surgery and have your initial appointment/exam during the same trip. That is what we did with Joshua's ACR surgery with Dr. Kozin. We scheduled Joshua's shoulder surgery based just on talking with him and Dr. Kozin's examination of Joshua's MRI. Of course, he thoroughly examined him before surgery (the exam/appointment was on Friday and the surgery was on Monday). But we were flying all the way across country and so we did combine it all into one visit.

Kate

[crystalline]

Thanks everyone, I went on the Shriner's Philly website and I was wondering how is the best way to contact Dr. Kozin and maybe send him a video. In the meantime I think we are going to go ahead and at least schedule an MRI here.

Since Dr. Kozin is the orthopedic surgeon, who does the nerve surgeries? Where has everyone stayed and has anyone driven? My husband doesn't fly but we live in ohio.

[ashley4]

i am new to this sight too and we are in contact with dr. nath's office in texas. we where refered there by our physical therapist, neorologist and peditrician. they are wonderful and helping us to get things moving along with insurance. surgery hopefully in oct. for a mod quad and nerve transfer. you can send video's to dr. nath too. that is how we have done everything and even talked to him personally. type in erbs palsey in a search engine and he will come up. my daughter ashley will be 4 months old tomorrow.

[Mardelle]

Get 3 or 4 more opinions from Specialists...do not accept the advise of just one or two...you need more answers to your questions. I have a nerve graph within 5 months post trauma. It was imperative said Dr. Alan Hudson. The other Dr. Susan McKinnon studied under Hudson and went against him. Saying she would wait 18 months. I had a choice to make all alone. I chose the radical highly experimental procedure. Today, I am happy I did. Your child is only 8 months old. Most of what she needs to learn is something you need to assist her with anyway...You are her best care in terms of Physio/OT-work on her all the time...if she has strong nerve feed reports...then training is everything...I cannot imagine how difficult this must be for you, but I know from my own experiences, training is everything and staying positive too...
Scars are nothing when you have the use of a limb...you are her voice...ask for spiritual guidance also...put it someone else's hands once in a while...it works for me
I will keep you both in my thoughts and prayers...

With Peace, Light & Love,
Mardelle

[3princessesmom]

Crystal,

I agree with all of these parents, you are in the same place that we were a couple of months ago, I understand how you feel. Believe me when you meet or talk to these doctors you will just "Know" which one is right for your daughter.
I agree with you to schedule an MRI and home then you when you meet with the doctors they can have that to refer too as well. Maybe you could send that ahead of the appointment with them.
Shriners sponsored us for the initial consultant visit in December and paid for our flight, booked and paid for our hotel room, and planned everything for us, that was great. All we had to do was show up and follow the Itinerary, that was wonderful since we were worried about our daughter and did not know the city at all.
Dr. Kozin does the surgeries himself. He has a whole team that sees these children when you take them. We liked it because everyone, nurses, PT/OT and the team of doctors with Dr. Kozin see the child at the same time. They talk and discuss the plan of care right there with you, very open and thourough, so the right hand knows what the left hand is doing.
We just returned from out 4 trip up there in July for check up from her surgery. My husband does not like to fly either, we drive, we have a GPS and by now have learned our route and how to the to and from. Shriners will even pay for your gas. We stay that the same place, Linda, Dr. Kozins care coordinator makes your reservations at a Ronald McDonald house, about 10 minutes away from the hospital.
Please do not be worried about the scars, they are NOTHING when you see the results- we just cried when we saw her move her fingers (2) immediately after surgery, then mover her arm after 3 months.
The best way to reach their office is 1-800-281-4074, ask for Linda Filipone- his nurse care coordinator, explain the urgency, they will get you in, they did us! If you want to call direct it is 215-430-4074, or Dr. Kozins email (he does respond quickly) is skozin@shrinenet.org
I would love to share in more depth our experiences, You and your family are in my prayers. We have walked that road, and understand, always remember go with your heart and advocate for her. Email me anytime! We wish you the best! Please keep us posted