No Supination and External Rotation

[JenH]

Hi! I posted to the board a while back and am posting again because I need feedback. My daughter is Mikaylee, she will be a year on Feb 15th. She has left sided Erb's and got a lot of function back, she lacks external rotation and supination which they said would come in time. She had a baseline EMG at 6 months, the doctors here in Minnesota said they would repeat in 3 months and if they saw no further innervation they would try neurolysis. They had only seen one other child who got back everything but external rotation and supination and he did well with the neurolysis. We repeated the EMG and everything was pretty much the same but this time they told us the surgery probably wouldn't help, in fact, she might lose some of what she's gained. I am at the crucial window as she is almost one. I just wanted to know if anyone else had the same diagnosis and what I should do? Should I just accept what they say, get a second opinion, make them do the surgery because any shot at improvement is better than just waiting to see if she needs tendon transfer down the line? Any feedback would be helpful-Thanks! Jen

[Kristie]

Jen,
We are in a similar boat. My son just turned one. He has had tons of recovery but still lacks in a few areas. We recently moved to West Virginia and started seeing a new BPI doctor in Pittsburgh. He recommended neurolysis for Ian (my son) as well. I always try to get a second opnion. We are going to do the video to Texas and maybe even try to see a third physician. I would be intrested in finding out why they think your daughter will lose stuff with this surgery?
Check out this link:
http://ubpn.org/awareness/A2001Rstorment.html

It will take you to the awarness page where it mentions that some kids can recover up to two years of age. I am hoping to postpone surgery until then if I can. Please e-mail me and we can exchange phone numbers I would be great to talk! krogers@saintmail.net
Kristie

[Sonia]

My daughter Kendall is 17 months and has a left BPI. She has had no surgeries and is recovering on her own. In the last few months, her suppination has really started to come in, she can even blow kisses! She still needs to work on the strength issues with suppination but is capable of doing it. When she was 1 year old, she was not suppinating at all. We have been taking her to Texas Children's every 3-5 months for evaluations. So far no surgery has been recommended. We take her back Monday for another evaluation.

[TNT1999]

Hi, Jen. I'm sorry that you're faced with these difficult decisions. Our decision for nerve surgery for Nicole was pretty straight forward b/c her injury is so severe. I really feel for parents whose children have borderline injuries and just don't know what to do. I would always recommend that people get a 2nd opinion, no matter who the 1st opinion was with. Where in MN did you go? There is a BP clinic at the Shriner's hospital there and Missy who posts here has had a very good experience there. Also, you can send a videotape to TCH (TX Childrens Hospital) and see what they say. I don't feel a videotape is too great of an assessment though when the injury is so borderline, so if you can get to TCH for a hands-on evaluation, that would be even better. As far as, should you make them (the MN drs) do surgery? Well, no, I would definitely say no to that. I mean for one thing, you can't really make a dr. do surgery. More importantly though, even if you were successful at convincing them to do surgery, would you really trust a dr. to do a surgery that he/she is recommending against and that he/she is saying might lead to loss of movement. I don't know if you've read about the Mod Quad procedure (muscle / tendon transfers & releases, nerve decompression, neurolysis) -- you can read about it at TCH's website (http://www.texaschildrenshospital.org - Patient Care Centers - select a center - Brachial Plexus). Anyway, they do the neurolysis as part of that procedure and TCH might recommend that you just have them do that all at the same time rather than a surgery just to do neurolyis. I have no idea what they will recommend, of course, but have heard of them making that call in other cases that aren't as severe. Our daughter has had surgeries at TCH and we are pleased with the surgeons there and very confident in their abilities. If you would like to know more about our experience, feel free to email me whatever specific ?s you have. Also, checkout http://www.injurednewborn.com/maia/homepage.html and you can read of one family's BP journey with their sweetie, Maia. BTW, sometimes surface EMGs are inaccurate and the best way to see what's going on is by physical exam and sometimes also by an intra-operative EMG. Another reason to get a 2nd in-person evaluation. I hope this helps. -Tina

[Connie&Andrew]

Hi
My son just turned 2. I just wanted to let you know that we saw a lot of improvements this past year. He had very little supination and external rotation at 1 year, but he has gained quite a bit. He still has some deficiencies, but he is very functional. He has not had any surgeries. We never had any EMGs gone, so I can't help you with that question.

I just wanted to let you know that there is hope that your daughter will gain more in the next year.

[CW1992]

Hi! I would suggest getting another opinion. It might help you to make a list of everything that has been told to you so that you can ask specific questions and compare the answers during your doctors appt. (like - 1st doctor told me this, what is your opinion??) I also wanted to say that my child continued to improve up until somewhere between 3-1/2 to 5 yrs old, but her muscle strength was so strong by then that it was hard to tell sometimes if she was still improving or just stronger. She started to supinate after her 1st birthday and it was a gradual thing - she still can't completely supinate but functions well. Her supination showed up gradually as her muscles became stronger. She can supinate farther if she sticks her elbow out in front and her hand is close to her chest. Her external rotation seemed to really get going more around 2 to 3, it's not perfect but she is capable. Again I think her external rotation came more and more as her muscles got stronger. She has had no surgeries. I do not see having surgery as a chance for improvement in all cases, especially if there is arm movement. (My opinion only - and every child's cirmumstances are definately unique) I sometimes think that surgery may only complicate what would have come back on it's own, risking further problems and set backs which might lead to further surgery) I hope you find the answers you are looking for and I wish Mikaylee a very happy first birthday! Christy

[francine]

Happy Birthday to Mikaylee!!!
Good luck in making your decisions - I know it's extremely difficult and heart wrenching.
I wish you the best,
francine

[Kathleen Z]

I would definitely suggest getting a second opinion if you are considering surgery when it's not so black and white. I have also heard from some doctors and read in some literature that the neurolysis procedure is somewhat controversial. Some doctors feel that simply clearing away scar tissue (no nerve grafting) from a nerve that is already growing back, has no real effect on the child's final outcome. Meaning that they would do the same with or without surgery. Also, how involved is the neurolysis procedure? Would it more/less involved than a muscle/tendon operation? Would it definitely give better results than muscle/tendon transfers? Hope this helps a little. I know how difficult a decision it is to decide about surgery. Just pray for God's wisdom.

[christy]

Kristie--where in WV? I am there as well...I have emailed you.

[Kristie]

Christy,
Parkersburg! Near the border of Ohio. I did e-mail a response but thought I would post for the benifit of others who might be close too.

Kathleen,
We are thinking that Ian is going to be recommend to have this surgery as well. I would love to know what literature you have read that talks about the outcomes. I need info to make this decision.

The reason our doctor would like to try doing just neurolysis is he has found that it sometimes helps gain range of motion thereby elinmiating the need for muscle and tendon transferes. There is no promsies so later you might have to have another sugery. From what I have read on the web site TCH does preform this procedure as part of the Mod-Quad (depending on if the child needs it). I am intrested in trying just neurolysis because it might mean no moving of muscles. I worry about what Ian might lose if they move muscles. The bummer is it might mean more surgery. It is definatly a tough call.

Any info that anyone has would be greatly appericated!

Kristie