Facial Nerve Schwannoma - 3 year old (Philadelphia)

[Amypatel]

Hello everyone,

Our 3 year old daughter has been diagnosed with facial nerve schwannoma and her doctor recommended to wait and watch for now because of the position of the tumor and her age.  She has weakness on the right side of her face since she was around 6 months old.  We have been to multiple doctors at CHOP and in the DC area but no one picked up the facial nerve schwannoma until recently by a doctor in Boston.  The doctor recommends we monitor the tumor every 6 months by MRI or CT scan and perform a cross nerve graft to restore her smile.

We would like to know if there are any pediatric doctors specialized in facial nerve schwannoma treatment. We live in the Philadelphia area.  We are willing to travel any distance to help our daughter!

We really appreciate if you can please share your thoughts and any information that you think would help us find the right doctor.

Thank you,

Amy

[alabamajane]

Amy,
I did not have a facial tumor, but an AN that was adhered to facial nerve therefore I have paralysis.
My Dr. suggested I see Dr. Tessa Hadlock, Massachusetts Ear and Eye Infirmary in Boston MA. She specializes in facial reconstruction. I'm not sure about on children though.

He says she is very proficient at the gracilis freeflap graft on the face. This is where she uses a thigh muscle to connect to nerve to produce very satisfying smile. There are several types of grafts available to help produce a better smile; however, in his opinion this particular procedure has most satisfying results.

I am so sorry to hear of your sweet baby's tumor! Watch it carefully and I do wish you well in a search for pediatric surgeon. In all my time on this board, I don't think I've seen a post about a child so young. I'm sure others will have some thoughts also.
Hugs and good thoughts,
Jane

[elsie]

oh, she is young.  makes recommendations difficult.  i see a doc who specializes in facial issues, specifically, paralysis.  he does nerve graft as well, i believe fron the ankle.  i am not a candidate, so not sure.  i really wish i had a doc for the tumor, possibly House Clinic or Dr. friedman in LA, Dr. Battista or Wiet in Chicago, other national docs, may have referrals.  You have to get that beast out first.

[AndiLew]

Hi, I had a FNS removed and nerve grafted from my forearm about 8 months ago.  My surgeon is Dr. Matthew Old at Ohio State University James Cancer Hospital.  I know he has also dealt with patients from Nationwide Children's Hospital here in Columbus.
In my case, I am starting to get facial movement back, as well as symmetry or "filling in".  I was told by Dr. Old that in patients my age (40) he usually sees 70-80% movement regained after nerve grafting.  After surgery he was confident that my recovery could be 90%.  It might be an option worth looking into for your baby. 

http://ent.osu.edu/directory/head-and-neck-surgery-physicians-faculty/matthew-old-md/

[RubesBYU]

So sorry to hear.  I've been doing wait and see since 2008.  Although the tumor has grown, my facial nerve is still strong.  My hearing has deteriorated but I can still hear.  Biggest issue I have (fortunately) is that I cannot sleep on my right side due to pain and pressure when I wake up in the morning. 

 I have been going to Dr. Friedman at USC the whole time and have been happy with him.  I think we are going to start a type of treatment soon to attend and stop the growth.  I'd recommend at least calling him to see what he says.

 Best wishes for you and your daughter, I have been close to 9 years symptom-free (in terms of facial paralysis) hopefully your daughter's does not progress any further. 

[Kamishawn]

Amy,

My 23 month old son has recently been diagnosed with a facial nerve schwannoma on his 7th cranial nerve. I’ve been researching online and keep coming back to this post. Would you be willing to share your experience with your daughter with me? I know this post is a few years old, hoping you are still connected on here.

Thank you,
Kami

[alabamajane]

Kami,
So sorry about your son’s diagnosis.  I know that is hard to deal with as he is so young,,,

Just a suggestion,, you may want to private message Amy through the icon under her name and perhaps she will respond more quickly.  I don’t think she has been on here since September.

Best of luck in your search for the best doctor you can find.
Wishes for peace,,,
Jane

[Kamishawn]

Thank you Jane! I will do that.

Kami