Hemangioma help

[Cathy64]

Looking for advice from some experienced users here. i was diagnosed with Bells about 6 years ago, never had complete recovery. Was seen by PCP, neuro, ENT at that time. Scans were negative for AN. My left eye starting giving me more trouble last year, and had some plastic surgery including a gold weight in the lid. In March of this year, my left side of face fell completely (kind of like the Old Man of the Mountain, if you live in NH, you know what that means). It was a sudden change, thought it was recurrence of the Bells, and went back to neuro (a different one from the first). Scans negative, labs negative. Did some searching and found that reanimation surgery was possible and got an appointment. I was pleased to find out I was a candidate for this type of surgery and my face could be returned to near normal. However, a hunt was started for the culprit, "this is not Bells palsy". More scans done, and low and behold, all these years I've had a facial nerve hemangioma. Had a consult this week with a tumor specialist.Over the past couple months, worsening tinnitis, some balance problems, feels like I am falling over, but not actually falling. Feeling stuffiness in my head, foggy at times. The surgeon said surgery very complicated, will make me worse then I am now, or wait, get the reanimation surgery, if tumor needs to be removed, can do later but would be more difficult to do because of what occurs with the reanimation surgery. I am wondering if anyone on this forum has a simailar story or experience. The longest part of the tumor measures 9 mm. There doesn't seem to be a best option (i've thought of just running away ). I am scared of all options. Thanks for your helpin advance.

[alabamajane]

On that thought,, ( about MA eye and ear,, ) check out ( or google) Dr Tessa Hadlock who practices there ( and according to website,, is on the ANA medical advisory board since 2008,,, ),, she was recommended to me by my neuro dr concerning facial surgery as " one of the best" for the gracilis free flap surgery.

Perhaps she could be of help to you. Good luck!

Jane

[Cathy64]

Thanks everyone for your replies and your kindness. I, too, am fortunate to be near Boston, and Dr. Hadlock will be doing the repair surgery. I am scheduled for early January. The tumor will remain where it is, as my facial nerve is already gone, no sense in going through the trouble of taking it out as there is nothing to preserve. So I will be having the gracilis muscle transfer and another shorter process after that. It is relieving to know what the plan is, as I was getting quite anxious about this. Thanks for all your support!