Date Set/Decision Made

[heyct]

OK. So I did it all a little backwards  . I made my surgery date at Stanford just so I'd be "in" once I finally did decide. Good thing. I got the last appointment w/Dr. Jackler in May as he's not available until July.

As everyone else, I've gone on the emotional roller coaster. Thank goodness for this forum & encouragement & support. I have found out that I am "special" after all. Most people have facial spasms POST-op, but I have it PRE-op. I'm posting this update because in my searches on this site, I found very few who had it pre-op & just as few who were informed that it may be a facial schwanomma prior to surgery.

My facial spasms are approx. 2 minutes long. Usually start at the corner of my eye, to the corner of my mouth & completely freeze. They mostly happen when I am exercising but have started occurring early in the morning.

I've had my consults at UCSF, Stanford & House Clinic.. They all recommended the same: surgery guys=surgery, radiation guys=radiation.It makes it all very confusing. I'd leave one ap.ed "Wide Decompression" if it were a facial neuroma.  This is drilling extra space around the facial nerve in the skull, to give the tumor some room. Everyone said if it is a facial tumor, they will close me up, then recommend radiation treatment. I made it to the support group meeting in Sacramento & everyone was so supportive, it was great to be amongst my own kind:) But, no one there has had facial spasms prior also. It's been a tough decision, but here's how I figured...

With Radiation, the tumor will never go away. It will most likely swell before it shrinks...if it ever does. Therefore my symptoms will get worse & possibly stay the same. Stanford gave me some reading material & what hit home was: The tumor's surface will then be uneven & rough after radiation. I figured since the tumor is already pressing on the facial nerve, it will still be there & still aggravate my facial nerve, thus, I chose surgery. Surgery date is May 20.

I received a wealth of information from both House Clinic & Stanford. Does ANA have a site where they post these PDF files?

Now on to arranging childcare for my 20 month old. This part has been more stressful than deciding on treatment as I hear I may not be able to lift him anywhere from 2 weeks to 2 months post op. Oh yea, also shopping for big glasses, decent pajamas, coloring all my gray so I still look good  & lots of chapstick.

I hope this helps other fellow pre-op facial spasm patients.
Carolyn

[Migoi]

Congratulations on making your decision...and for having a surgery date that is relatively soon.

Neither of the guys (surgery or radiation) thought you should be wait and watch? That's interesting... I suppose it was because you are already having some fairly severe symptoms.

One thing to consider...gather your local (as opposed to us out here in the ethersphere) support network around you. Be direct, they love you and are willing to do anything for you but probably don't know what and actually may be having difficulties accepting this themselves. While AN's are difficult for us 1/100,000 folks...it's also very hard on those around us, especially that second tier of folks that might not have been able to educate themselves as thoroughly as you have.

While you are probably strong enough to make it though with minimal support...it will work out much better if you get everyone involved.. you and they will be glad you did.

Again, congratulations... here's to wishing 100% positive outcomes...

..take care.. tim b

[Lilan]

Carolyn, our stories sound somewhat similar. (Though in my case, absolutely no one recommended radiation, even Dr. Chang @ Stanford!)

I hope if they do get in there and find a facial tumor, even if they can't remove it all, they can thin it out or remove some bone or do something to relieve the pressure on the nerves.

I know how scary it is to have early facial symptoms. You are in great hands and I'm sure they'll do well by you!