Recently Diagnosed

[FranDS]

About 1.5 months ago, I got out of the shower and felt like I had water or wax in my ear and had tinnitus.  I tried some home remedies for a week and when they didn't work, I went to my primary who irrigated my ears.  When that didn't work, she referred me to an ENT who found no infection or physical problem, game me a hearing test with a result of only 28% hearing in affected right ear, and sent me for an MRI.  The MRI shows a 7mm acoustic neuroma - very tiny.  My ENT recommended surgery; however, not one to take any one individual's word on something like this, I surfed the net and came to realize that this was not the only choice.  My ENT recommended a surgeon in Miami, who I've seen mentioned on the forum, but did not see much about him on the Internet re: AN surgery; and I know it is important who you chose and how many times they've done a particular surgery. 

Anyway, I know I have time and am doing more research.  Because my right ear has very little hearing as a result of this AN (which must have been there for some time w/o my realizing it), I am not as concerned about losing hearing in that ear (my vanity does, but not the intellectual side of my brain).  I'm more concerned about what surgeon to chose if I go that route or the radiation route and if there are any really good choices in FL, GA...maybe even NYC - anything on the East Coast.  Although, from what I read, I prefer the House Clinic, I don't fly; even if I did, I was wondering if there would be ear pain because of the AN.

How do you find out the number of particular operations a surgeon has done? 

This forum is wonderful and I'm happy there is something like this for support and help.  I feel better already!

[ppearl214]

Fran,

Hi and welcome to our exclusive family! :)  The drinks and jokes are terrible but the support is top-notch!

I went through the same decision making process as you 3 months ago and had my radiosurgery (CK) treatment 6 weeks ago. It's overwhelming to go through the decision making process and I commend you on trying to become the best "well informed" patient that you can be.

There is so much available up and down the east coast, from Boston (where I am) that offers world class micro- and radio-surgery (all forms) to Univ of VA to Duke to Emory Univ in Atlanta to many facilities in FL.  It's so difficult to just throw out a facility or dr's name from the "good" coast *looks over shoulder for Gennysmom!* but you have come to a terrific place for recommendations and such.

House Clinic is certainly a wonderful place for AN micro-surgeries as it is their "forte", having performed too many AN surgeries to count anymore.  If you are looking to stay on the east coast, do you have specific areas that you would like to go for treatment?  I'm sure closer to home base is what you seek first but many here can chime in with recommendations if you help us narrow down an area.  Also, since your tumor is still considered "small" (less than 3CM), are you also checking into radio-surgery as well?

Regardless, as the cruise director to this fun ship, I wanted to say welcome and know we are here to help in any and all ways we can!

Phyl

[Battyp]

HI Fran and welcome!

You must have been referred to dr. telischi?
I consulted with his team.

I had surgery done at moffitt in tampa with dr. brem
Onebad350bird had surgery with telischi
Jd had surgery at tampa general with dr. lovern(I think that is how you spell is name)
I know anotnelli from shands does surgery for an and know someone who did their surgery
friedman does gamma at shands, he's done surgery one someone I know but think now his focus is more gamma related
There are a few places in orlando I've read about

I had trouble flying within weeks of my diagnosis but will tell you I'm one of the few and mine tumor was involving my brain stem.

With your tumor being so small I'd honestly encourage you to consider gamma or ck.
There are many sites with information, I found a few interesting ones last night.  Unf. I didn't have the time to do any research because by the time the doctor diagnosed me I was very sick.

I once saw a list on how many tumor surgeries doctors have done but for the life of me can't find it now.
If you ask the doctor point blank they'll tell you.  Have you requested the materials from ana?  they are very helpful.  There are also lists of questions you can find online that are important to ask.

email me directly if you'd like I'll be more than happy to share what I know and what I have.

[Gennysmom]

I echo what Batty and Phyl are saying, welcome to our "little" club, and my additional advice is since yours is small, 7mm, you should have plenty of time to watch and wait, and do your homework.  I'm a month and a half away from surgery, I've known for 2 1/2 months, and that time has been invaluable to making me comfortable about my decisions.  There is every experience under the sun on this forum, and please ask us anything.  I'm over here on the "Best" coast ***runs right over Phyl because she was looking over her shoulder and didn't see me*** so would refer you to Batty and crew from her list as to Florida resources!

[Battyp]

I'm on the "better" coast...Kathleen can have "best"  LOL  Darn semantics will get you everytime     We don't have all the doom and gloom here just the sunshine and winds  LOL

[FranDS]

Thanks for the welcome everyone!  And you're all correct...I have some time to think about this.  My first instinct was to go with gamma or some sort of radiation treatment, but I don't know yet.  I know they both have their pros and cons. Battyprincess, yes it was Telischi but am I right about his expertise cochlea implants?  Names are good...at least I know of places to start in the area.  But if FLA doesn't satisfy me, I will continue on.  My insurance company may not appreciate it, though!

[Battyp]

Stick with your first instinct!  IMO it's better to go non invasive before invasive..especially with a small tumor and time on your side! 

Honestly, Telischi is an ENT and does An surgery's with Marcos who's a neurologist.  I'm not sure about his speciality being cochelar implants.  I can't say I was impressed with him when I met him.  Especially keeping me waiting and then not reviewing my mri until after my appt when I was told he was reviewing them prior to coming in the room. 

[Sue]

I just think it's great that your ENT recommended an MRI so fast.  I went to my ENT with the same problems and they pooped around, treating me for allergies, until I finally felt numbness on the left side of my face, before I was sent to a neurolgist, who ordered the MRI. I may be wrong, but I think the sooner it's found, the quicker the treatment, then maybe more can be saved.  Good luck with your treatment, whatever you decide.

[dowdog]

Hey Fran,
The description of your experience and diagnosis is very similar to mine.  The fullness in the ear, the ENT, hearing test, MRI progression toward the diagnosis of right side AN.  My diagnosis date was 4/21/06.  My symptoms in the order of their annoyance to me are: unsteadiness when walking...especially at night, constant ringing in the AN ear, loss of about 40% hearing in right ear, very sporadic facial spasms.
The highly recommended neuro-otologist I went to see ordered three further tests to obtain more information.  A CT-Scan to see if the bone that the nerves run through was being widened by the neuroma.  An ABR test to see how the hearing nerve was being affected and a ENG test to see how the balance nerve was being affected.  He just called me today with the results which indicated to him that "you should have the tumor removed".  I told him that I didn't want to have surgery and he said, "have a consultation with my partner who does Gamma Knife".  So I guess that is the next appointment.
My main frustration right now is that while I prefer to watch and wait, my balance seems to get a little worse each week and I don't want to lose any more hearing than I already have.  He said that my neuroma is borne or was born(I am not sure) on the Upper Vestibular Nerve and is Pressing on the Auditory Nerve. 
I would like to know if I do the gamma knife, will the balance issues get better and will I keep the level of hearing that I currently have.  I know this all depends on a lot of variables.  Up until today I was doing fine with the idea of just watching and waiting.  I would have another MRI in six months and get by with my symptoms.  Now today after talking to the Dr. I feel really bummed.



 

[FranDS]

Dowdog, how large is your AN? Exactly where is it located? I understand your wanting to watch and wait, but don't feel bummed.  Did you get another opinion?   Do you have copies of MRI (most imaging centers will copy to a CD for you) to send to a couple of other physicians?  You may lose your hearing in the effected ear no matter which option you chose, but, truly, that's the least of your worries - at least for me it is.

You and I were diagnosed just about the same time (April-May), and I'm still researching.  However, my AN is only 7mm.  Although I'd love to go to House Clinic in LA, I don't fly...so I'm invesitgating hospitals in FLA - Moffit, Shands, maybe Emory in Atlanta, hoping to make the right decision. 

[dowdog]

Hi Fran,
I just talked to my Neuro-otologist about the results of my 6 month MRI.  He said that it showed growth of 2 millimeters since April.  It is now 12 millimeters in size.  He said it is still relatively small and therefore he would support my choice of continuing to watch and wait.  Why would I want to have surgery or radiation?  My symptoms are annoying but would they get any better as a result of either treatment modality?  Would the feeling of fulness in my AN ear go away?  Would the constant ringing in my ear go away?  Would my hearing get better?  Would I be free of the unsteadiness I feel when walking at night?  Would I stop getting headaches daily?  From everything I have heard from Doctors and everything I have read the answer is "Not necessarily.  All those things might get a little worse and other things like total hearing loss, facial paralysis, and CSF leak could happen in addition if you have treatment."

So I will have another MRI in six or seven months.

[Dealy]

Dealy from the Midwest. With that small of a tumor-if you want to go the radiation route-I would suggest Johns Hopkins in Baltimore Maryland. They have done over 400 AN's with radiosurgery-FSR. We have two on this site-including me that Have had FSR at this facility. I know it's a tough decision to make. You still have time with your AN being that small. However the hearing is another issue. I had one removed surgically-when radiation was not even available Statewide leaving me deaf-  bacik in 1988-So I have had one sided hearing for 17 years. Bothered me at first but I got so used to it I never even noticed after awhile-you adjust. If interested In Johns Hopkins I can send you a personal e-mail with contact person. Good Luck on your choice.

[vcschaub]

Even though my AN was small, I decided to take action after 18 months of watching and waiting. My tumor grew by 2 mm and my balance and hearing were slowly getting worse so I felt the benefit of action was to prevent any further deterioration. I also felt that my small tumor would be easier to operate on than if it grew. Of course, surgery has its risks but continuing deterioration was what prompted me to action. I had a great outcome. Of course, one can still wait and watch and hope symptoms will not worsen.