Newbie

[mellowrama]

Hello all,

I was just diagnozed yesterday with a 22mm an.  I saw an ENT named Brad Pickett in Albuquerque today.  My hearing is still perfect, and I'm 42.  My sypmtoms are mainly facial numbness, fatique and a little dizziness.  I'm getting some more specific MRI's in a week or so, meanwhile I'm considering my options.  THe doctor seems to think that since my hearing is good that I should wait 6 months and then have the gamma procedure, with that being the best option in his opionion to salvage any hearing.  I don't know if I should consider the "fractioning" treatement (maybe with dr. slatter ? in LA) or a second opinion (not sure there is many options in NM).  ANy feedback would be appreciated!

mel

[SuzeAN]

Hi, welcome!

I just wanted to mention www.CKsociety.org website for you they have information about cyberknife.  When I was diagnosed in July 2005 with a 2.5cm I opted for cyberknife after much researching.  Had the procedure done at Barrows in Phoenix.  You will find lots of patient experience information on this message board about gamma, ck, and microsurgery, this is a great place to start.  Also for more radation information I believe you can try www.irsa.org. 

Keep a positive outlook!

Suzan

[Gennysmom]

From what I understand from everyone here, you can send your films to House Ear Clinic in LA for a free consultation.  Since you probably have the full range of choices, research and a couple of opinions is certainly not a bad thing.  Good luck, and welcome to our world! 

[Larry]

Your an is still on the smallish side and I think you have been given excellent advice. I had middle fossa surgery 4 years ago and it has grown back. I am waiting at present but when the an grows any more, I will have gamma knife treatment.

Search this site for comments on the different surgery options - middle fossa, trans lab and restrisig. Also cyberknife and gammaknife radiation treatments.


laz

[Battyp]

HI Mel and welcome.
Waiting for treatment really freaks me out as...I was misdiagnosed for 8 mos and during that time lost my hearing.  I presented with ringing in the ears and by the time they figured it out I had no serviceable hearing.  From what I've read and understand once you lose your hearing you don't get it back.  To me it's not worth the chance.  Most of these suckers are slow growing (I think mine wasn't).  Most places will give you a second opinon by sending your MRI's and reports to them. 

I would def. look into gamma or cyber if i had to do it all over again and had the option. 

Best of luck to you!
Michelle

[Kilroy1976]

I agree with Bats, waiting freaks me out too. I don't understand why your doctor would want you to wait six months only to have gamma knife at the end of it. "Watch and wait" is a good option for some people, but if you're going to end up having radiaiton anyway, why wait? Certainly take some time to research your options, but if you're already having symptoms I'd say the sooner you deal with the problem, the better. But then, I'm no doctor... Best of luck in your decision and treatment!

[mellowrama]

Thanks for all your feedback!

I'm already thinking about not waiting 6 months, and possibly ck treatment....does anyone think that one place is better than another?  I was thinking that the drs experience would matter most with all treatments...

thanks,
mel

[matti]

Mel - I agree with everyone else...why wait. My symptoms were much like yours, I had perfect hearing, facial numbness and dizziness. The tumor is already compromising your facial nerve. I would definetly look into doing something now, than wait 6 months.

You are so right, experience is the most important thing. I did not have CK, but there are a few on the forum who will help guide you in the right direction.

By the way, welcome to our club! You will find alot of support, info, inspiration and last but not least...humor.

Take care
Cheryl

[ppearl214]

Hi Mel and welcome!  Sounds like you are certainly getting good feedback here and if you are serious about researching CK, then the CK Support website can help as well (www.cyberknifesupport.org/forum/default.aspx). I just completed CK here in Boston 7 weeks ago and I'm doing fine. Some post treatment symptoms that were shared with me in advance, so nothing bad.  If you are in the midwest, I know CK is available in Oklahoma City. I think if you also go to the manufacturer's website (www.accuray.com/), it will list locations near you that have CK. If it's not updated, you can go to the Cyberknife Support board. The doctors there are pretty familiar with locations.

Anyway.... regardless of what you decide, whether it be radio-surgery or micro-surgery, know that you are far from being alone... there's great support here. Trust me, I know all too well having just gone through my treatment. They're nuts around here but have the best dang hearts around!

Be well.  My inbox is open if need be.
Phyllis