Yet another newbie

[Jim Scott]

Hi, Ernie:

O.K., you're 'officially' a member of the relatively rare group of people who have been diagnosed with an acoustic neuroma. 

I heartily concur with Tammy: you might do well to seek out more than one doctor's opinion and above all, don't be 'rushed' into surgery.  AN surgery is painstakingly delicate and serious.  It can leave you with problems you'll have to deal with for the rest of your life.  I did well and so have many others who post messages here but usually, those who only talk to one doctor and are hurried into surgery when there is no apparent need for extreme urgency regret it, later.  Just a thought. 

Check out this 2007 thread from a fellow (Adrian) who used to be a frequent visitor here and had his surgery at Tampa General.

http://anausa.org/forum/index.php?topic=4141.0

His initial post gives links to doctor's websites that may interest you.  He had his surgery and did quite well, too.  I trust this will be helpful and you'll consider consulting other doctors before making your final treatment decision.

Jim

[cindyj]

Hello Ernie and Welcome!

Glad you're here, but sorry you need to be!  As you no doubt now know from your 12 hours of reading, this is a great place to be...

Please be sure to take a breath (and maybe get some sleep ) before you make any treatment decision.  As others have said, you should not feel pressured or rushed into any decision.

Take care and please let us know how we can help!

Cindy

[EJTampa]

I'm back from work now.  Wow, you guys write so much!  I will, of course, seek additional opinions.  I know I have an AN, but I also know I have options.  I asked the doctor if there was any harm in waiting until the first of next year to decide, and he said that should be perfectly fine.  He mentioned that most people have very slow growth, so it is unlikely that it would cause any harm.  I have a wedding cruise in January (a Niece), and I don't want to be worried about recovering in time.
 
I think I am going to have to go back through this thread to look for all the questions I missed.  I remember someone asked what I do for a living, so I can answer that one.  I am a meteorologist (not a TV one though).  My wife is a registered nurse, and I think she is having a tougher time than I am with this. 
 
For the record, I'm not that concerned about living with visual defects.  I'm most concerned about the tinnitus, and the possibility of severe post-op headaches.  I haven't ruled out radiation yet, but my current doctor (who is pretty young) seems to be against it for my situation.
 
Oh, I have tickets to game #2 Saturday night for the Red Sox and the Rays!  Go Red Sox!
 
Ernie

[leapyrtwins]

Ernie -

I'm even rarer than Tammy    I didn't have tinnitus pre op and still don't post op.  No bragging, just pointing out that everyone here is different.

The same applies to serious post-op headaches; some have them, some don't.  There are no hard and fast rules when it comes to ANs - there are no guarantees either.

I didn't get the impression from your post that your doc was "rushing" you into surgery, but I do agree with the idea of getting a few additional opinions - especially if you feel you need them.

Like Jim, I was going to suggest Tampa General.  The docs there did wonders for Adrian.

Jan

[Omaschwannoma]

Hi Ernie,

Welcome to the club, I know I'm late in welcoming you but I see everyone else did a superb job in that!

For doctors in Tampa, check out Dr. Bartels.  I don't know where you are specifically located (don't tell us) but I had my surgery done at Shands at U of F in Gainesville with Drs. Antonelli and Lewis.  I highly recommend Dr. Antonelli (neurotologist).  Check him out for second opinion.  Also Dr. Friedman who runs the SFR radiotherapy end of things.  Even though your doctor discouraged you from this option, why not go for one or two opinions in this area of treatment protocols?  Better to cover all bases here before you make your decision.  You'll feel lots better you did. 

Given the size of your tumor I know most docs are in agreement that size does matter regarding difficulty in saving the facial nerve and they do recommend having one undergo surgery before the tumor becomes larger than 2cm. 

If you are having an important event in January and can wait, IMO I would do this as one doesn't know how they will heal after surgery or radiation.  Each vestibular schwannoma is different and each person heals differently.  Doctors will not be able to make a definitive call on your reaction to treatment, but usually they will say give yourself 6 weeks to three months, some patients take up to one year, where others have gone beyond the one year mark (my case for example).  Feel free to ask me questions regarding my process if you want as I won't go into it now to save time in getting this to you. 

[msmaggie]

Hi Ernie,

This is a pretty elite club you have just joined.   Not just anyone can get in!     All the advice you have gotten is great.  I too am wrestling w/where I want my sugery performed, as alll the drs. I have consulted with said surgery was the best option.  I was going to House, and still haven't ruled that out, but I have also had my MRI read by the Barrow Institute and have talked to them.  The surgeon here in Houston has a very good reputation, so I have big decsions to make since I want this done in December.  Make sure you have done all your homework before you make any decsions.  There is a lot of info out there and it takes time to sift through even part of it.  If you know anyone in the medical community, lean on them.  I think I have talked to all of my husband's old college buddies  more lately than he has, since most of them went onto medicine!

Keep us posted on your progress.  We want to be able to encourage you.

Maggie

[Sue]

Another AN'er welcoming you aboard, Ernie.   I am so glad Jim mentioned Adrian's posts.  Yes, please look them up!  And be sure to look into all your options.  If you do elect to do surgery, just make sure they are a highly experienced team.  And read Adrian's posts.  He had a large AN and he was very happy with his surgeons. They are top rated in Florida.

[EJTampa]

I think I'm going to be saying thank you alot over the next few days as you all make me feel very welcomed!  While I'm not really in the wait and see club, I do have some time to consider options.  I read most of those posts that Jim asked me to read (Adrian's experiences), and wow, that was some scary times for them!  I'm glad he was happy with the results.  I had to do some searching to find the post-op messages, since they started new threads .
 
I will definitely look into the surgeons Adrian used, but I haven't ruled out radiation either.  I know my ENT isn't crazy about it, but I still want to talk to a radiologist as well.
 
Ernie

[sgerrard]

... but I haven't ruled out radiation either.  I know my ENT isn't crazy about it, but I still want to talk to a radiologist as well.

It is not unusual for ENT's to not be crazy about radiation, usually because they are not aware of how successful it is with small ANs. It doesn't mean they are not good ENTs, only that they may not be current on every possible treatment for every possible ear-related condition.

Talking to a radiation oncologist about it makes the same sense that talking to a surgeon about surgery does. If possible, an oncologist that has treated ANs with Cyberknife or GammaKnife. Maybe Jerome Spunberg, for instance, in Palm Beach. Here is a link to the new Cyberknife support site, where he is an online doctor; you could also post a question for him in the forum there.

http://www.cyberknife.com/forum-doctors.aspx

By the way, a radiologist is different, they are the ones that read MRIs and X-Rays.

Oh, and welcome to the forum.

Steve

[MAlegant]

Hi Ernie,
Just to add to this thread, I have far fewer headaches post-op then I did pre-surgery.  In fact, I have had no severe headaches at all.  Also, I still have my hearing and my tinnitus is tolerable to the point that I do not notice it (unless I'm in a very quiet place).  As Jan says, we are all so different, or, rather, our tumors are different, that it is difficult to predict what anyone will experience.  I do know that at 3 months post-op I feel pretty good, have resumed working and playing and am learning to deal with residual symptoms that I hope will resolve.

 I agree that you should check out Dr. Antonelli--I have heard great things about him and his team.
Best,
Marci

[wendysig]

Hi Ernie,
Sorry I'm a little late coming to this thread but I wanted to welcome you to our group.  Your an is small and I'm glad to hear you'll be getting other opinions.  My doctor is young too, but that can be a good thing.  Although I don't know any doctors in your area (as you can see, I am from NYC)  there are lots of wonderful doctors out there and I'm sure you'll find the ones that are a good fit for you.  Whichever treatment choice you make, be certain it is what YOU want, not what a doctor persuades you to have.  Unless the location of your tumor is a determining factor,  the size says you have a choice between stereotactic radio surgery and microsurgery.  I'm glad you've read so many posts because as others have said, knowledge is power -- the more you have, the better you will feel when you make your choice.  I wish you luck as I know this is the hardest part of the process (at least it was for me).

Best wishes,
Wendy

[EJTampa]

Hello again!
 
Got back from the ball game (Red Sox at Tropicana Field) at 3 AM!  Slept in this morning even though I was supposed to get some stuff done around the house.  Stephen King was 3 seats to my left (same row), pretty cool.  Snapped a picture or two of him.
 
I'm a sox fan, but it was a great game, and good to see an extra innings game go to the Rays when playing at home.  My wife was wearing a rays shirt, while I had my Fenway shirt on .
 
Hmmm, this post looks off topic.  So lets fix that.  Thanks, Steve, for the link to cyberknifesupport!  Lots of good discussion there.  I had to dig into the archives because they recently moved to a different forum format (I think).  Even without talking to a radiation oncologist first, I'm leaning toward CK.  The only real symptoms I have are hearing loss and Tinnitus, so I think less invasive is better.  If we could just stop the growth of the tumor, and if I can get used to the ringing, I'd be a happy camper.  Don't worry, I'm still gonna get second/third opinions.
 
Ernie

[leapyrtwins]

No one has mentioned, so I will, for you to google "House Ear Institute" in L.A., California.  I am here now.  They are world renown for performing AN surgeries.  The best 'first step' with House Institute is that you can send a copy and for FREE OF CHARGE they will evaluate your MRI and give you a second opinion over the phone at no expense to you.  It's at the very least a free service that I would explore while researching your options.

Ernie -

as Cheri mentioned House (HEI) is world renown for performing AN surgeries and they will give you a free consult.  Just keep in mind that HEI generally recommends surgery over radiation, since that is what they are experts at. 

So, if you are still open to radiation as a possible treatment choice, make sure you consult with some doctors who do radiation also.

Wish I  would have seen Stephen King - I think I've read just about everything he's written; I'm a huge fan 

Jan

[EJTampa]

Hi Jan,
 
Here is a pic that I snapped of Stephen King at the game:
 

 
You can click that image to make it bigger (I think).
 
I am still open to radiation, so I will be checking that out next.  If I decide on surgery, I will definitely look into HEI.  Thanks so much for all the great information!
 
Ernie

[EJTampa]

Picture wasn't clickable, so here is full sized so you can see it...
 

 
I'm working 10 PM to 6 AM, in case you are wondering why I'm still up .
 
Ernie