UCSF? Stanford? Facial Spasms?

[heyct]

Hi all,

Another newbie here. It's great to find your group, altho I must admit a bit nerve wracking learning about the possible side effects.

I was just diagnosed 2/09 with an AN 6 x 9mm. About 1.5 year ago I noticed hearing loss. Last Oct 08, I started having hemifacial spasms & finally made the appt. to get checked out. I must say, everything moved along quite smoothly w/appointments & UCSF was amazing in determining my diagnosis. Everyone including me feel I should take some kind of action.

I had my consults at UCSF w/Dr. Lustig & Dr. McDermott and am now completely undecided about what type of treatment I should have. Dr. Lustig (ENT) recommended surgery & Dr. McDermott (Nuerosurgeon) recommended GK. This is the "team" that would work on me. Has anyone else had experience with UCSF? I'm thinking of getting a 2nd opinion at Stanford. Hopefully it will clarify and not confuse.

I saw the US News 2008 Best Hospitals. It rated UCSF #4 in the nation, #1 on the west coast for Neurosurgery. Stanford is rated #7 nationally. But it does look like most of the members highly praise Stanford.

I'd also be interested in anyone else who has had facial spasms PRIOR to treatment and what their outcome is/was. The spasms are infrequent, approx 10-12x's a month & usually happen when I am working out or exerting myself physically. Should I stop my strenuous workouts? Is it making my situation worse? Dr. McDermott thought that since I am having facial spasms, there is the possibility the tumor could be on the facial nerve (definitely it's irritated), but of course, they won't know until they open me up. He was nice enough to say, they could open me up for surgical removal & if I pre-direct them, they could close me & then do GK.

So, while I'm trying to figure things out, just last week, I'm starting to feel mild pressure around my eye. It's what it feels like before a spasm only the spasm doesn't happen. I've looked in the mirror & I can't see a twitch. This pressure is constant & I'm starting to think my condition is worsening & need to take care of it sooner than later.

Anyways, thanks for being here!
Carolyn

[Jim Scott]

Hello - and welcome, Caroline ~

I'm pleased you found the ANA website and these forums but sorry that you have an acoustic neuroma.  I'm on the East coast and cannot offer you any credible information on USCF or Stanford, although I believe both are very reputable institutions.  As you'll soon learn, there are a variety of possible treatments and all carry some level of risk.  That is simply unavoidable, based on the location of these benign-but-difficult tumors, which we refer to as 'ANs'.  For smaller tumors, non-invasive radiation is often recommended but sometimes the tumor's location makes that impractical and in some cases, the patient simply wants the AN removed - for good.  We're ready to offer our experiences and suggestions but of course, the choice for how to address your AN is, ultimately, yours, alone.  However, we're here to help, advise and support you all the way so please stay connected here and keep researching and learning, as that will make you a better patient. 

Jim

[nteeman]

Carolyn,

I had hemifacial spasms prior to my treatment, it was the last symptom to appear before I went for an MRI.  It would happen once or twice a day, usually when I was shaving or working out. It turned out that I had a 2.5 CM AN on my left side (same side as the facial spasms). I had it removed here in NY on 1/27/2009 and did not have any facial muscle issues after the surgery. My hearing was already damaged prior to surgery and now I am SSD in my AN ear.

I did a lot of research before choosing my treatment and I recommend that whatever you decide make sure you find a Dr that has lots of experience with ANs.

This forum will also be a great source for you to get information and consult with others who have 'travelled the road you are now on.'  Don't hesitate to ask for advice. I know that this group helped me a lot.

Neal

[Syl]

Welcome, Carolyn.

I had surgery at Kaiser in Fremont with Dr. Kato. Her wonderful team of surgeons included Dr. Cheung from UCSF. I have heard that UCSF is a leader in brain tumor treatment. And that's why I chose to stay with Dr. Kato and her team. I did get more opinions before I felt comfortable enough to make a decision. I had originally decided on translab, then consulted with Dr. Cheung, and changed my mind to retrosig. Get as many opinions as you need to make a decision because it's a tough decision.

Syl

[Mark]

I'd suggest you do a consult at Stanford. Chang for CK and Jackler (formerly top UCSF guy for AN surgery) for surgery. UCSF really has no top notch doc for the radiosurgery side and I'm not sure anyone of Jackler's status has moved in to the surgery role

Mark

[heyct]

Things are moving along. UCSF will be presenting my case at their monthly Tumor Board meeting, so I will get the opinion of all neurosurgeons in attendance. Dr. Lustig has been great in responding to my emails & questions & at my request, immediately emailed Dr. Jackler for a 2nd opinion. Jackler responded within a couple hrs & my appt. is set for 4/14! I saw alot of people recommended Dr. Chang also, so I phoned his department. I will see him immediately after Jackler! Talk about brain overload:) FYI, Dr. Chang still does consults via mail for out-of-state residents.

A couple more questions:
Does Dr. Jackler still perform surgery? I thought I saw on this board that he might not.
Does Dr. Chang only specialize in CK? or does he do surgery also? Anyone out there who has used him for surgery?
If I go to Stanford, do I have to do all my followup there?
I was told my UCSF doc, McDermott was top for GK. They do surgery on approx 60 AN/year. Is that not enough? I know Jackler himself has done over 1,000. I know someone who had McDermott for a jumbo meningioma. This appears to be his main focus since it is on his business card. My ENT only said that's who he would team with for surgery & did not mention any other from UCSF.

In the meantime, I went to the gym yesterday & had 3 facial spasms during workout. It's so frustrating & embarassing. I guess it's just something I need to learn to deal with but I feel I don't want anyone to see me & just want to run & hide. OK, maybe running isn't a good idea. I guess I should tone down my exercise, but how else can I get rid of my post-pregnancy bulge? For any of you w/post-op facial problems, how do you deal with it? Does a shrink help?

Thanks for your support,
Carolyn

[OTO]

House Ear Clinic did 240-something AN surgeries in 2006 (at least that what they told me when I was going for my pre-op testing)...

[sgerrard]

Does Dr. Chang only specialize in CK? or does he do surgery also? Anyone out there who has used him for surgery?
If I go to Stanford, do I have to do all my follow up there?

Dr. Chang does quite a bit of neurosurgery, along with the CK. About 50/50, by some reports.

I had CK with Dr. Chang in 2007. I do all my follow up here in Portland, OR, and mail the MRI CD and reports down to his office.

Steve