Carolyn here again. Got my stitches out today & more info on my dastardly hemangioma, since I was so out of it after surgery.
As posted earlier, it is very rare. The doctor described it as cotton candy completely engulfing & compressing my facial nerve. I still have to do followup MRIs as there was a small portion they could not get to in my skull. The hemangioma is slow growing, as the AN, but I sure pray I don't have to go thru this again in another 10 years! I don't wish it on anyone. My only new side effect is I now have a "fullness" in my deaf ear. They said that was normal, now that I am completely deaf. We also talked briefly about hearing aids. We'll come back to it later, but apparently there are a couple new technologies coming out soon. One is a removeable retainer in the mouth!
I'm doing fantastic! My balance was long gone, so I already had compensated and am walking, turning my head well. Doing so well, the doc suggested I stop my medications!...ok, so I'm not going to do that quite yet. I can probably start driving short distances (haven't yet), but still won't be able to pick my son up for 2 months
For all those newbies posting, I just wanted to say:
The hair thing isn't that much. They shaved maybe less than an inch strip & the scar is tucked nicely behind my ear.
If you are scheduled for surgery, get into a good head space, whether it is prayer, meditation etc...Don't want to get too new ageish here, but I really found meditation during this whole ordeal. I feel I was in an excellent mind space before the surgery & truly believe it has helped me heal quickly. PM me if you want more details. Afterall, what else are you going to do laying in the hospital bed w/nausea, a lumbar drain & attached to IVs & doped up on painkillers!
Try to think & be positive!
Take care,
Carolyn
