Author Topic: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)  (Read 9319 times)

Akeelas

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Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« on: June 13, 2010, 10:41:00 pm »
Hello everyone,
Our 6 year old daughter has been diagnosed with facial nerve schwannoma, and our ENT has recommended surgery.
Would like to know if there are any doctors specialized in facial nerve schwannoma treatment. We live in the LA area.

we couldn't find any facial nerve schwannoma forum and we found this forum to be closely related and also very helpful and informative.

Please share your thoughts and any information that you think would / might help us find the right doctor.

Thanks,
Akila

ppearl214

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #1 on: June 14, 2010, 05:04:45 am »
Hi Akila and welcome. I'm sorry to hear of this situation...... especially on one so young.

Although they primarily focus on Acoustic Neuromas... and since you are based in the LA area.... you may want to contact House Ear Institute (HEI), based at St. Vincent's Hospital in LA, to see if they can give you a name for a facial neuroma physician, but moreso... for "pediatric" facial neuroma.  Their website:  http://www.hei.org/

I am not personally aware of HEI doing facial or pediatric (although they may but with a focus on adults) but maybe they can refer a specialist for pediatric facial neuroma surgery.

One other is radiation (not what you and I tend to generally think of when it comes to radiation). There are highly, targeted beams of radiation processes now done.  A great resource is the Cyberknife Patient Discussion forum (www.cyberknife.com).  Dr's (radio-oncologists) donate their time and energy to help answer patient questions. I am aware of a youngster (I think he was 10 or younger) that was treated with Cyberknife (CK) that had his "Patient Story" published on the website but you would have to check with the dr's on that forum.  They will need the specifics of the growth to help better guide as well.

I would also check on any of the pediatric hospitals local to LA.

My thoughts and wishes to you all.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Cheryl R

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #2 on: June 14, 2010, 06:39:20 am »
Akila,    I am sorry to hear of your daughters facial neuroma.    They are treated the same as acoustic neuromas but have to be more careful.    You are fortunate to be in LA and can contact the drs at HEI there.      Do you know the size of your daughters.    I have had one and my dr removed mine and I was told ahead that if it is was severed that he would be taking a part of a nerve from by my ear to graft in which he did do.     I did have paralysis for several months but it did improve to have some movement back.   Some drs remove part of the tumor and do radiation to help take care of the rest of it.                   Your daughter is very young to have a tumor and also will need to be watched as she could possibly have NF2 and have more tumors in the future.              I did not go to HEI and live in Iowa and go to Univ of Iowa to my neurotologist.                  Also one can not tell for 100% sure it is a facial neuroma until one does have surgery.    I was having some facial drooping but also one can just have pressure on the facial nerve and cause some symptoms.   
   I am sure this is very scary to you now and we can be of help and support as we have been thru this!
                                                   Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Akeelas

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #3 on: June 14, 2010, 10:28:03 am »
Thanks to Cheryl and Phyl,
We don't know the exact dimension of the tumor but the Drs were sure that it is a facial nerve schwannoma , they say it is pretty long almost the entire length of the nerve from geniculate ganglion to stylomastoid foreamen and (given her age) hence radiation may not be a good option. She had been diagnosed with a  facial paresis since she was one and we did a MRI when she two, but they couldn't find anything then. We had been having yearly checkups (MRIs were never taken) with our neurologist from that point but we were never referred to an otolaryngologist, until recently when we wanted to know if we could do something about the facial weakness. That is when we did the CT and MRI and the diagnosis was made. The more we learn about the surgery and treatment  options the more overwhelmed we are and if not for this forum we felt really lost.  Thanks for all the support and please keep sharing all your thoughts and knowledge for we do feel hope when we read them.
thanks again,
Akila

Cheryl R

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #4 on: June 14, 2010, 04:59:53 pm »
Akila, You are going thru a very unusual case with your little one.      I esp now would get hold of the HEI drs as they would have been the ones to see an unusual situtation and hopefully have an answer how to do the best care.     Children with tumors are not common but more common if do have NF2.   This is not neccesarily what she has but they would have some of an idea how to treat it.      It would be very overwhelming for you.      I have a 6 yr old granddaughter and would hate to have her be going thru this.      We are thinking of you and keep us posted as to how it is all going.                     Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

moe

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #5 on: June 14, 2010, 05:59:26 pm »
they say it is pretty long almost the entire length of the nerve from geniculate ganglion to stylomastoid foreamen 

Dear Akila,
Wow that was a mouthful in your post, doesn't sound good.-maybe because I read the words "entire length."

Welcome!

 I'm so sorry to hear about your daughter's condition. Sounds like Cheryl has lots of good info to share, one of the few with NF2.
Keep coming back and let us know how things are going, what the doctors are saying etc. Since you live in the LA area, you have HEI right there. I'm sure they would be interested in your daughter's case and may be able to steer you somewhere where they specialize in pediatrics.

She is young and this is so much stress for you as parents, but at least at this age, kids bounce right back, they are very resilient. But no fun. Do you have other children?

Time is on your side sounds like so research research like you are doing.
Hang in there
Muareen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Akeelas

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #6 on: June 14, 2010, 11:39:25 pm »
Thanks for all the responses.

We have been going through the HEI website for the past 2 weeks, but yet to make the call (haven't decided on any doctors yet). After looking at all the responses we are planning to call them in next couple of days.

Just wondering, if anybody knows how the appointment process works at HEI. Can we ask for a specific doctor while calling in, or do we get assigned a doctor from their group by them.

Any inputs on HEI Doctors from ANA members who had been to HEI would really be helpful in making the decision.

Thanks again,
Akila

JerseyGirl2

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #7 on: June 15, 2010, 11:48:04 am »
Hi,

I live in New Jersey and had my AN surgery at House about two and a half years ago. I could not have been more pleased with the entire experience and felt that it was well worth the cross-country trip.

I would suggest just calling HEI and explaining the situation rather than attempting to pinpoint a specific doctor at this point. It's a relatively small group of doctors and I imagine they would discuss the case among themselves prior to getting in touch with you.

 Best wishes as you proceed,

Catherine (JerseyGirl 2)

Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Lizard

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #8 on: June 15, 2010, 09:19:17 pm »
I'm so sorry your daughter has a tumor at 6 years old, and welcome to the forum, please ask away, and we welcome you with open arms.
House is the best place to so so you are in the best place you can possibly be.  please let us know what they say. 
Take care and send my big cyber hug to your daughter.
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

4cm in Pacific Northwest

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #9 on: June 16, 2010, 10:18:33 am »
Akila,

Six years old with a neuroma is NOT really heard of, or experienced, on our forum. I think you are our 1st. However we are hearing of younger and younger patients… and we are here to offer you support in any way we can. I think you need a big HUG!

My suggestion is that you are in touch with one of the most experienced acoustic neuroma surgeons in our “acoustic neuroma” world. He is in his age 70’s now but still works at House Ear Institute in LA... as he has done more ACOUSTIC neuroma surgeries than anyone in the world. People fly from all over the world just for him.  (I see him as the ole “Acoustic neuroma guru”) I am NOT suggesting him as the surgeon necessarily but he is well known (and respected) and will no doubt be well connected with colleagues and surgeons- who specialize in the facial nerve… I found him to be this wonderful paternal grandfatherly gentleman :)  -who is very caring and shows great “people skills”.  (Trust me this is not the case of all neuro science doctors, prepare yourself, however this one is a gem.) I would suggest that you at least make an appointment to see him to see who, with a pediatric background, may be able to help your daughter and to put together a “team” for treatment.

His name is Dr. Derald Brackmann and he is at House Ear Institute in LA
Here is the link to his CV
http://www.houseearclinic.com/BrackmannDE_CV.htm

Know that you can also send in a MRI and they will give you a free one time over-the-phone consultation. Here is the link to that information.
http://www.houseearclinic.com/acousticneuromaconsultation.htm
(I did to know this and actually paid for and flew all the way to LA  ::) to see him- however I have NO regrets of meeting him in person -as he IS a very exceptional person. Just learn from my error and send in an MRI… but if you are already in LA it may not be a big deal to go there, for you, as it was for me from Oregon.)

 
Also know that 2 hours south of LA is a facial nerve centre. I am working with the physical therapist from that clinic that flies up to Portland Oregon to serve patients here- quarterly. She is also very compassionate. :) She too may have some information on pediatric surgeons who specializes on the “facial nerve”- there in California. Her name is Wanda Crook.

Here is the link to their center in San Diego
http://californiafacialnerve.org/meet-our-team.htm

I am not aware that they do pediatric cases but they may be able to point you to someone who does.
It is imperative that you take the time to do the research and interview surgeons and background check them, as you only want a team with MUCH success and experience under their belt.

You can check a surgeon’s background here on healthgrades. I recommend you do this, as it will show you any malpractice suits.
http://www.healthgrades.com/

There is a famous recent news story in Canada of a small boy, Maddox Flynn, who was flown to New York for a successful surgery… however I do not think the “cranial” nerve was operated on and the surgery may have been all external from the skull. Regardless you might want to contact this world renowned surgeon to see who he might recommend for a pediatric facial “neuroma”- as he too may have colleagues ....and also may even know of a specialist in California.

Here is an American news story about the Canadian parents’ perseverance to find a surgeon
http://abclocal.go.com/wabc/story?section=news/local&id=7456455

Here is the surgeon’s actual webpage
Dr. Milton Waner, M.D., F.A.C.S.
http://www.nyhni.org/faculty/milton_waner/index.html

Here is that family’s blog from the Canadian family who flew to NY for their child’s surgery
http://maddoxsjourney.blogspot.com/


I suggest that you contact both Dr. Brackmann in La and also Dr. Milton Waner in New York. They may actually know each other- if not OF each other. Between the two of them, and their collegial medical network, they may be able to assist you with find names to help put together a good surgical “team”.
 

Fortunately we are in an era where the Internet can allow you to connect with other parents who may have gone through this similar thing. You, as the parent, will just have to spend some hours surfing the net, making phone calls etc – as you get a better understanding of all of this. But know the resources are out there- you just have to dig and find these… and know how to filter the junk and misleads.

I can imagine, as a parent, you also may be overwhelmed with all the jargon the doctors are using – particularly those in neuro science.


Here is a link that explains the basic of the cranial nerves
http://en.wikipedia.org/wiki/Cranial_nerves
This explains the facial nerve
http://en.wikipedia.org/wiki/Facial_nerve

You, as a parent, are going to have to give yourself a quick crash course on the physiology of the brain. I highly recommend this book that is full of illustrations and really helps to explain the brain- in “layman’s terms”.
National Geographic’s Brain: the complete mind
http://www.amazon.com/Brain-Complete-Michael-S-Sweeney/dp/1426205473

Know that the tumor is not IN the brain but BESIDE the brain it growing on the facial nerve. It does not affect cognitive ability but it can grow causing pressure in the head- so eventually can be life threatening if not treated.  Usually facial neuromas are benign. (Ie not cancer)

I put into Google search engine
“Pediatric facial nerve support group”

I found this link that maybe helpful to you at St. Louis Children's Hospital
“Facial Paralysis and Mobius Syndrome”
http://www.stlouischildrens.org/content/medservices/FacialParalysisandMobiusSyndrome.htm

You could also contact them and see if they have colleagues in LA. ?

Because this is a pediatric case you MAY have to go out-of-state for treatment. Contact your health insurance to see if you can do this and are covered to do so.

I think it is imperative that you find a parent support group that can help you. In the meantime please know you are always VERY welcome here. I will do some more research to see what else I can find… I suggest you do the same.

Hang in there MOM- you are going to get through this! (I am assuming that Akila is a “female” name- if I am mistaken and you are the Dad- I apologize.)

Keep asking us questions. There is a wealth of great people  8) on this forum…. And we have some with facial neuromas too. I do NOT know of any pediatric “facial” neuroma parents but we do have a few “acoustic” neuroma patient parents. Hopefully between us all -we can steer you in a direction that WILL offer you the best help and care you can get for your daughter… not to mention support for you the “caregiver”(and parent.)

Here is our link for caregivers
http://www.anausa.org/caregivers_overview.shtml


Cyber HUG.  You WILL get through this! Think positive thoughts.

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

4cm in Pacific Northwest

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #10 on: June 16, 2010, 10:38:21 am »
...One more thought...

Dr. Kartush in Michigan does "facial" neuromas and has done a few patients here on our forum. He holds the patent on the facial nerve probe used in surgeries. I know that this is not a California contact... but he may be worth contacting to as he may have colleagues in pediatrics that he recommends

Here is his link
http://www.michiganear.com/about-mei/our-doctors

Just an idea...

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

moe

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #11 on: June 16, 2010, 11:07:39 am »
DHM,
As per your usual, AWESOME informative post! You're the best!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

JSC

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #12 on: August 01, 2010, 01:36:38 pm »
Hi Akila,
I am sorry you are in this position.  Please know that there is hope.  Our daughter was diagnosed with a 2cm facial nerve schwannoma in Oct. of 2002 when she was 16 years old.  Dr. Slattery at HEI advised watch and wait, which we did
until Dec. 2007.  At that point, he advised GK.  She underwent GK at Good Samaritan in Dec. 2007.  She graduated from college in May 2008, made a beautiful bride in June 2009 and is a very happy newlywed and RN now!  We thank God everyday! 
Take Care!
Jan C.

chris71982

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #13 on: April 19, 2012, 06:57:24 pm »
Hello All,

I have a three year old with a large intraparotid facial nerve schwannoma.  I am trying to locate a doctor that has dealt with this situation on a child.

I was wondering if anyone knows how to contact this person, or knows who their doctor was.

Thanks.

pjb

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Re: Facial Nerve Schwannoma -- 6 Year old (Los Angeles)
« Reply #14 on: April 20, 2012, 07:28:43 am »
Hello All,

I have a three year old with a large intraparotid facial nerve schwannoma.  I am trying to locate a doctor that has dealt with this situation on a child.

I was wondering if anyone knows how to contact this person, or knows who their doctor was.

Thanks.

Oh my I am so sorry to hear of little toddler having this not sure of the intraparotid but hoping it is still benign please contact HEI they are great surgeons if they cannot do it I am sure that they can recommend someone who can on a child. Please go to the best that is so crucial to these tumors...My prayers and thoughts will be with you and praying all goes well and I am sure it will.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

 


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