Guaranteed damage to the facial nerve?

[Lilan]

Steve, thanks for your kind note. The heman patients can't run and can't hide from hearing my story! 

[leapyrtwins]

Two opinions is probably not enough for a heman. Too many doctors, even those very experienced with ANs, simply have never seen one. So don't be shy about continuing to hunt, or push the ones you have to explain everything.

As Lilan correctly states, even doctors who are very experienced with ANs, are unfamiliar with hemangiomas.

Make sure you do your research, and consult with other doctors if you have to; you want the best possible outcome.

Jan

[lholl36233]

Thank you Lilan and Jan.

I'm sure Jan remembers me from back in June 2008 when I first started to post.  8/24/09 is the first time anyone ever said the word hemangioma to me.  I really feel like there is no better place for me to be on the East Coast than MGH/MEEI.

Has anyone had their facial nerve cut, replaced with a graft and had their face return to normal?  You can probably understand the doctor's hesitation when my only current issues are hearing loss and tinnitus.

Nothing will happen until I see Dr. Loeffler at MGH on 10/7 about the Proton Beam Therapy.  I doubt Dr. McKenna would have referred me unless he thought there was a good chance I'd be a candidate.

Wouldn't it be exciting if, 6 months from now, I became the first hemangioma patient whose tumor shrunk with proton beam therapy?  You never know...

[Lilan]

Absolutely, that would be great! Someone has to be first, and it might as well be a forum poster who will apprise others of her story! 

I look forward to hearing your updates -- I am both interested in your case and hoping for the best outcome for you -- and very curious in the academic sense!

[lholl36233]

Thank you Lilan.  I feel like we are kindred hemangioma spirits.  Mark your calendar to look for an update from me late afternoon/early evening on 10/7...