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 patientsâ€¦ 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 â€œacoustic neuromaâ€ world. He is in his age 70â€™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 â€œAcoustic neuroma guru
â€) 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 nerveâ€¦ I found him to be this wonderful
paternal grandfatherly gentleman
-who is very caring and shows great â€œpeople 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 â€œteamâ€ for treatment.
His name is Dr. Derald Brackmann and he is at House Ear Institute in LA
Here is the link to his CVhttp://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 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 MRIâ€¦ 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
She too may have some information on pediatric surgeons who specializes on the â€œfacial nerveâ€- there in California. Her name is Wanda Crook.
Here is the link to their center in San Diegohttp://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 surgeonâ€™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 surgeryâ€¦ however I do not think the â€œcranialâ€ 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 â€œneuromaâ€- 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 parentsâ€™ perseverance to find a surgeonhttp://abclocal.go.com/wabc/story?section=news/local&id=7456455
Here is the surgeonâ€™s actual webpage
Dr. Milton Waner, M.D., F.A.C.S.http://www.nyhni.org/faculty/milton_waner/index.html
Here is that familyâ€™s blog from the Canadian family who flew to NY for their childâ€™s surgeryhttp://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 â€œteamâ€.
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 â€“ as you get a better understanding of all of this. But know the resources are out there- you just have to dig and find theseâ€¦ 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 â€“ particularly those in neuro science.
Here is a link that explains the basic of the cranial nerveshttp://en.wikipedia.org/wiki/Cranial_nerves
This explains the facial nervehttp://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 â€œlaymanâ€™s termsâ€.
National Geographicâ€™s Brain: the complete mindhttp://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
â€œPediatric facial nerve support groupâ€
I found this link that maybe helpful to you at St. Louis Children's Hospital
â€œFacial Paralysis and Mobius Syndromeâ€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 findâ€¦ I suggest you do the same.Hang in there MOM- you are going to get through this!
(I am assuming that Akila is a â€œfemaleâ€ name- if I am mistaken and you are the Dad- I apologize.)
Keep asking us questions. There is a wealth of great
on this forumâ€¦. And we have some with facial
neuromas too. I do NOT know of any pediatric â€œfacialâ€ neuroma parents
but we do have a few â€œacousticâ€ 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 daughterâ€¦ not to mention support for you the â€œcaregiverâ€(and parent.)
Here is our link for caregivershttp://www.anausa.org/caregivers_overview.shtmlCyber HUG. You WILL get through this! Think positive thoughts.