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
guruâ€) 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 skillsâ€. (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.htmKnow 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 nerveâ€- there in California. Her name is Wanda Crook.
Here is the link to their center in San Diego
http://californiafacialnerve.org/meet-our-team.htmI 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 “neuromaâ€- 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=7456455Here is the surgeon’s actual webpage
Dr. Milton Waner, M.D., F.A.C.S.
http://www.nyhni.org/faculty/milton_waner/index.htmlHere 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 “teamâ€.
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_nervesThis explains the facial nerve
http://en.wikipedia.org/wiki/Facial_nerveYou, 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 termsâ€.
National Geographic’s Brain: the complete mind
http://www.amazon.com/Brain-Complete-Michael-S-Sweeney/dp/1426205473Know 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 groupâ€
I found this link that maybe helpful to you at St. Louis Children's Hospital
“Facial Paralysis and Mobius Syndromeâ€
http://www.stlouischildrens.org/content/medservices/FacialParalysisandMobiusSyndrome.htmYou 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
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 “caregiverâ€(and parent.)
Here is our link for caregivers
http://www.anausa.org/caregivers_overview.shtmlCyber HUG. You WILL get through this! Think positive thoughts.DHM
