Questions about Middle Fossa surgery

[JerseyGirl2]

sorry about all the underlining in my previous post -- not sure how that happened. Maybe I'm NOT back to normal.

Catherine (JerseyGirl 2)

[ppearl214]

fixed Catherine... with the magic button that Mods get! No worries... will give underlining and BOLD and Italics lessons later this week!

Carry on!
Phyl

sorry about all the underlining in my previous post -- not sure how that happened. Maybe I'm NOT back to normal.

Catherine (JerseyGirl 2)

[wendysig]

Hi Dawn,

I'm glad to see that middle fossa is a possibility for you.  With 100% hearing in your AN ear I thought that translab might have been indicated becuase of the tumor location.  If you can save your hearing that would be wonderful.  I hope this works out for you.  As for returning to normal post-surgery, besides being SSD my balance issues are much better than they were before surgery and even if they never get better then they are right now, they are not a major obstacle in my life and don't prevent me from doing pretty much everything I did before.  Call me crazy but I plan to try bike riding and horseback riding in the spring and see what happens. 

Best wishes,
Wendy

[Captain Deb]

I think that depends on what your present "normal" is. Mine was windsurfing, sailing, rockclimbing, boogieboading, running, skipping, jumping, and all sorts of nutty stuff like that! Now I have the New Normal. A very different life, but a good one thanks to good docs and the right meds and the support of this formum.  Not eveyone ends up with headaches, especially if you don't have them to begin with.

Capt Deb

[Dawn]

Thank you all for your posts they are so helpful to me....as you may be able to tell, I am very scared/nervous/upset...etc  I know you all went though the same thing and many are still going through it.

Jerseygirl - thank you for what you wrote it was very reassuring to me to read that.  I would love to go to House but I live in NJ and at present just couldn't afford to go out there for the procedure and recovery time.  I have 2 young kids and wouldn't want to be away that far for too long.  I am setting up a consult with Dr. Post to get his opinion on what procedure would be best for me.  I currently have 100% hearing in both ears and a 40% deficit on my vestibular nerve.  I am also going to ask Dr. Joe Fayad from House tomorrow when he calls me back for referrals out here in NY

Thanks again
Dawn

[JerseyGirl2]

Dawn,

I'm positive you'll do absolutely fine in New York! I imagine you've read many posts here from folks who've been treated in NYC and they are certainly passionate about their doctors and the treatment they received. And I think you can be confident that Dr. Fayad will give you good advice.

I have to say that when my New Jersey doctor said "Go. To. House." immediately after giving me my AN diagnosis I was pretty taken aback and almost as stunned by that suggestion as I was by the diagnosis. Northeasterners (I'm a southerner, by the way) tend to be rather, shall we say, northeast-centric, so the thought of leaving the area for just about anything can be a shock. I actually kept my "going to Los Angeles for surgery" under wraps for as long as possible. I figured people would think that I must be on my death bed and CA was the only place that could treat whatever malady I had, or that I must be entering a rehab facility along with Paris Hilton and Britney Spears (this was about the same time that Britney's issues were in all the headlines). I'm very thankful that our only child was in graduate school at the time so I didn't have to face the dilemma of leaving a young child at home -- that's hard to do regardless of the issues.

I received a mailing from the New Jersey Acoustic Neuroma Association yesterday announcing a February 22 get-together in Toms River. There's nothing on their website (www.ananj.org) yet about this meeting, but if you're interested, please PM me and I'll send you the contact e-mail addresses to RSVP. I've only been to one ANANJ event -- an excellent mini-conference in Berkeley Heights last fall which was quite well attended -- so I don't know how large a crowd these smaller meetings attract. It might be helpful for you to talk one-on-one with people in different stages of the AN journey. Let us know what you hear from Dr. Fayad!

Catherine (JerseyGirl2)

[Dawn]

Hi Catherine,

I did get the flyer about the AN conference in Feb...

I had my consult again with Dr. Fayad he wants me to go for another type of hearing test to see what the results are, he said if they are not "flat" then there is a good chance I can retain 60-75% of my hearing with MF surgery.  He also said it is a little bit more tricky of a surgery b/c the tumor is deep in the IAC but that he treats it a lot.

He is sending me prescription for the hearing test he wants and will look into any docs in the NY City area that do Mid Fossa surgeries....

If anyone knows of any or have had this surgery in NYC area please let me know doctors names and how they did

Thanks to all
Dawn

[Larry]

I had middle fossa on a relatively small an (shouldn't have had it in the first place) - i was back at work in 6 weeks. I have had severe headaches since - thats 7 years now. I have a headache every day and for about 2 weeks in a month, they are debilitating. My hearing was around 70% at time of op and i lost it all. MF does not guarantee hearing preservation. I have SSD and tinitus.

The worse part is that it grew back and now i am faced with further action. i will be radiating the bast..d (excuse the french).

the top Sydney surgeon has now stopped doing MF because of the side effects from post op. Maybe i have blinkered vision but there seems to be a lot of posters that have had MF that have had some pretty severe side effects. Luckily, there are others who have come through it fine.

laz

[Pooter]

I'm not from the NYC area, but Drs. Golfinos and Roland have a wonderful reputation among forum members.  Those doctors are in the NYC area.  Debbi, who lives in NJ, used them for her surgery and raves about them.

Regards,
Brian

[wendysig]

Dawn,
I'm pretty sure Wayne (wcrimi) had middle fossa with Drs. Post and Smouha at Mount Sinai in New York.  I know he retained his hearing but I'm not sure to what extent.  I'm pretty sure I remember him saying Dr. Post was also able to save his vestibular nerve -- he might have done a graft.  You should PM him, I'm sure he'd be happy to let you know.

Wendy

[Dawn]

Thank you,

Larry sorry to hear of your results and wish you luck with the next course of treatment

Wendy - Thank you I will PM him to find out.  I am going to make appt for Dr. Post and maybe I will for Dr. Golfino, I see his name on here a lot and was thinking of him too....How have you been since your BAHA surgery?  Hope you are well.

Stay safe to everyone in the NY/NJ area tomorrow with the snow and ice

Dawn