Newbie

[tdworkin]

I am brand new. This is my first post. I have tried several times to send it, but am not technologically gifted. Perhaps this one will "go."

I am just getting into the AN lingo thanks to my very recent diagnosis.

My symptoms are some hearing loss, imbalance (I always thought I was just clutzy) and that dang tinnitus. Left ear only. I am getting pain twinges in my left temple- off and on, only last a short time. I've always gotten lots of headaches (I teach 5 and 6 year olds). I have always been healthy, but seem to be breaking down mechancially since I hit 50. This includes five surgeries in five years; the last was 11/2005 spinal fusion L3-4 and 5. I used to take advil in threes.

So, when I couldn't hearing the crickets with my left ear, I went for a hearing test- which showed some loss but not a huge one. That dr. sent me for an MRI 6/18/07 to rule out "anything crazy."  He called that same day and said to go see a specialist for my "about 2cm vestibular schwannoma." He "expedited" the appointment for me but it would still be a month til I could get an appointment. He assured me this was a very slow growing thing so no rush.

I went to his recommended ENT at U of Penn yesterday 7/23. The dr. did a quick exam after numbing my nose; he did not look at my MRI films- just read my original ENT's report. He suggested gamma knife or the neurosurgery to "kill or remove a 2.5cm tumor." He said either way, I will lose my hearing in that ear. He is sending me to his neurosurgeon partner on 8/28 for his opinion. That was the earliest he could see me.

I cried all the way home and then started reading on this site. More reading today- and now I am confused and think I must go elsewhere for another opinion.

I am hoping to get the WTT list soon (I just signed on yesterday) so I can talk to someone in my area. (I live one hour north of Philadelphia.)
I have a very supportive husband (he's the one who found this site for me) and he says we will go anywhere in the country to get the best treatment.

I am glad this support outreach is available. I am scared but trying to stay level headed. I want to make a thoroughly investigated choice. I don't want to "wait and see" too long; neither do I want to rush into the one U of Penn direction. Is there anyone out there who can offer their wisdom and experience? I would appreciate hearing from you.

I guess the line my kindergarten colleague and I used to banter back and forth- "IT'S NOT A TOOMA" (from Schwartzenegger in "Kindergarten Cop") is no longer funny...

[Battyp]

Hi Td and welcome to our exclusive little club.
First, take a deep breath.
second my hats off to you teaching the younguns they can be exhausting! (taught K-6)

There are several patients up your way or at least in PA
Static for one. Do a search and her screen name will pop up.
I'm sure they'll be along momentarily.

Question?  Do you currently have hearing on your tumor side? If you have serviceable hearing and want to try to save it then you are looking at Microsurgery (retrosig, subocciptial( they are the same thing), or middle fossa) radiosurgery is an option and I'm sure those who are more versed in that will be along shortly.

Hang in there we're here to help.

Hugs Michelle

[Lorenzo]

Hi td,

Welcome (and sorry I had to say that too)! First thing as it has already been said to you, this is a slow growing thing so there isn't really that much rush involved in this. You have time to research all your options and see which one suits you the best. Microsurgery is indeed an option as Michelle said. I had radiosurgery, CyberKnife to be more precise. So I can talk more about that. If you're interested in that option (my AN was the same size and ear as yours) there's a good site you can read all about CyberKinfe on:

http://www.cyberknifesupport.org/

They have a lot of information. The forum there also has a few very helpful doctors on it that are always willing to look at MRIs and reports and give their opinion.

Accuray (makers of CyberKnife) have a list of where CKs are located within the US: www.accuray.com 

The hearing preservation in my case was a bit of a myth really. I had some serviceable hearing left before treatment, but after treatment I lost more of it making it even less useful. The tinnitus and 70% hearing loss I had before treatment were bad enough for me not to consider hearing preservation as a main factor. In the end I chose CK because I felt a lot more comfortable with the treatment, and the post-treatment situation. It may sound odd to say, but personal preference has a lot to do with one's choice, I think. After all, you have to live with your choice for the rest of your life. Once you get into talking to specialists, ask for experience and go for the most experienced person you can get, for whatever their treatment speciality is.

So, again, do as much research as you can, talk to as many specialists in their field as you can and make an informed choice. As for  us, we're all here to help you, your husband found a great place with lots of wonderful people! We're all here to answer questions and help if we can.

All the best

Lorenzo

[Lorenzo]

Hi again td,

Good post from Bruce and he's right. The size limit for radiosurgery is around 30mm, depending on what the location of the An is. The reason for that is that post-treatment the AN can swell before shrinking back again over the following 6-18 months or so. Not always, but it happens. Happened to me. Anyway, at the time of picking Ck I was thinking that the sooner I got radiosurgery treatment, the better, particularly in view of the possibility of swelling. Just something to keep in mind.

This is indeed a slow growing thing so there's no immediate rush. Mine grew from 24mm to 26 in the space of a year which is when i was treated.

Hope all this helps and is not too confusing!

All the best

Lorenzo

[Static]

TD,
I'm in your area and I sent you a private message.  Let me know if you want to talk.
~Karen

[Obita]

Hello tdworkin:

Welcome to the forum!!

Second, third and even fourth or fifth opinions are necessary until you KNOW who with and which route you
want to go.  In the end, you will know it in your gut when you have decided on the right doctor/treatment.
Then, you will want the AN dealt with yesterday so you can move on.  I was very much at peace once I made
the decision and had the date set. 

Good luck to you td and I hope you and Karen can hook up. 

Kathy

[tdworkin]

Thanks, everybody. I appreciate everyone's sharing of their experience, strength and hope.

I really do not know all the lingo or understand all the procedures yet. It is very overwhelming but I get the message you are all telling me and am grateful for it. 

The U of P neurosurgeon can't see me until 8/28 so waiting is frustrating. I called Jefferson today and got an appointment with Dr. Wilcox on 8/14. Now, I am waiting for a call back from the neurosurgeon he partners with hoping to get in to see him ASAP, too. Are there really physicians who actually give you feedback just by reading your MRI and not seeing you in person?

I am so glad you are all "out there."

[Lorenzo]

YEs, they do indeed read MRIs without meeting you in person. For example, in my case, I live in Europe so all my dealings with my docs were by e-mail. I sent the set of MRIs over to Stanford (where I eventually went to have radiosurgery using their CyberKnife) and got a reply back a few days later. After that it was a case of asking a lot of questions, getting a third opinion and organising the trip. Once there of course I did have a face to face consultation with them.

I'm sure other hospitals offer the same service. I know that the doctors on the CyberKnife Support Group forum do.  Not sure about surgery though, maybe somebody here would know. But I suspect that it is also the case for surgery.

All the best

Lorenzo

[Captain Deb]

Hi TD,
Jefferson is a world-class facility and they just hosted the Acoustic Neuroma Association's Bi-annual Symposium where many of us here on the forum met face to face after communicating online for months and, for some of us, years. You would be in excellent hands should you decide to have your treatment there. Again, as others have said, explore your options and find the best fit for you.  And welcome to the ANA forum!  The support I have recieved here, both before and after treatment, has been truly remarkable. It's nice to know that you are not alone on this AN journey and we're here to take it with you every step of the way!

Be Well and Sail On!

Capt Deb

[OTO]

tdworkin - the House Clinic in Los Angeles will review your MRI (send to them by mail or overnight delivery) and call you for a consult.   Usually one of the executive assistants will call first to set up a time when one of the doctors can call you.   Usually later in the afternoon (California time).  It will be within a day or so, after they get your MRI.   Do a google search on House Ear Clinic, some where on their website will be the address for the MRI consultation by phone for free.   Be aware that they will almost always recommend surgery....     If you do decide on surgery, House Clinic is probably one of the better places for surgery...

[sloxana]

We have a lot in common having both been recently diagnosed (mine on July 9).  Let me just encourage you by saying that the wait until you see the doctor after finding out you have an AN is really difficult, but once you see him/her it's much, much easier to bear.  At least that was the case for me.  My doctor really eased my fears and was so calm that I left his office feeling like a huge burden had been lifted from my shoulders!  Am I still undecided about my treatment?....yes! but I now know I have many options and lots of time to decide.

I'm really sorry you have to wait so long until you see the doctor.  I only had to wait 2 weeks.  Can you get on a waiting list?  Sometimes a doctor's office will put you on a waiting list and call you if they have a cancellation. 

Let's stay in touch and we'll get through this together!!  I'm so glad to have found this discussion board, aren't you?

Susan

[Joef]

I am hoping to get the WTT list soon (I just signed on yesterday) so I can talk to someone in my area. (I live one hour north of Philadelphia.)

My parents are in Bucks county (Plumsteadville I think)... anywere near there? I down there every few months or so....

[ppearl214]

hi td and welcome. Many here have given excellent suggestions and true food for thought. There are many of us that are on the WTT list (myself included) and are always available to loan a good ear if need be. If you don't receive your WTT list for your area soon, please let us know and we'll be glad to help out.  As you can see here, we are all here to support you during this "journey".

Again, welcome.
Phyl