Been watching and waiting for 5 years now!

[salomon]

l am a new member today,but wish l wasn't! l found out about this little demon in my head about 5 years ago because l was slowly losing my hearing over a two year period.Thinking it was related to environmental problems.Because l have been around noisy dirt bikes and jet skis for 30 years.My hearing loss is in my right ear.So guess where all bikes and skis pipes exhausts are...yup,right side.Ended up going to an ear,nose,and throat practice.Have to thank my doc for his persistence in figuring out what was really wrong.He sent me to Vanderbilt and l saw Dr Wanna.
Four MRI's later he sat down and said its time to do something while the tumor is manageable.But l must say that so many of you have much larger tumors! Mine is only 6mm at this time.l cannot even imagine how any of you dealt with it.At this point,l am trying to figure out who and where l want to go for the best result.Looks like the House Clinic is a great place to go.l am in the process right now in getting a CD of the MRI and a copy of the audiologic evaluation to send to them and review.But not ruling out Vandy and Dr. Wanna.
Now that l found the forum l can find out more about whats going on.And am also going to Knoxville to the next meeting with Tammy Hart's group! What a wonderful and awesome lady!

[mac84]

Salomon,
I was diagnosed last fall and have been on the WW since then and am also going to Vandy but seeing Dr. Rivas.

At 6MM why the rush to do something? Mine is 10mm and currently not really growing..just slightly.  Hang in there!

[Echo]

Hello Salomon,

At 6mm your AN is still at a size where I would think many specialists would tell you that you still have the option to wait and watch or proceed with treatment depending on what you want to do.  With a 5 year history behind you, is your AN growing?  What size was it when you were initially diagnosed?  Are your symptoms increasing or changing and causing you to consider treatment?

My An was 1.8cm when diagnosed and my neurosurgeon told me I had some time to make my mind up, about treatment but he did say sooner would be better than later.  In my case within less than a year my AN grew to 2.4 cm, so for me a choice really had to be made.   If your AN is not growing, you do not have any symptoms causing you grief, speaking to other specialists as you are planning to do is a really good idea - you just might find that you can wait and watch a little longer, if you choose.

Best of luck and welcome to the forum.
Cathie.

[salomon]

Cathie,At time of discovery,the tumor was 3mm,now (4 years later) it is at 6mm.The doc was not insistent that it had to come out,but thought it was at a manageable state at this time.My hearing has gone down considerably in the past year.And the hearing evaluation did show a significant change.
l'm on the fence as far as removal.And l am not a patient that just wants it out either.Quite frankly,the surgery scares the hell out of me.But if it is easier to deal with it now and my recovery is not as long,then this might be the time to do something about it.l have the rest of this year to figure it out and decide what to do.Thanks for giving me food for thought!

[PaulW]

Your tumour is very small, smaller than a pea... Surgery is no walk in the park and has significant risks. Watching and waiting until it is the size of a marble is not uncommon and is a reasonable strategy.. While it is so small, if you are seeking proactive treatment you may want to consider radiation.  The success rates on small tumours less than 10mm is around 98-99%
The amount of radiation needed to zap a pea is small, and risks low..

[salomon]

Appreciate your thoughts PaulW.l feel the same way.But l have a while to figure out what to do,so in the meantime l can try and educate myself.Also,RCl am not a good cadidate for radiation because of the location

[Echo]

Hi Salomon,

Since you are able to take your time and really look into your surgery options, make sure you thoroughly check into your surgeon of choice.  This is one surgery where you want someone with LOTS of experience removing AN's. 

Best of luck,
Cathie.

[PaulW]

I am not sure why you would not be a candidate for radiation due to the location of the tumour.
I have never heard of anybody not being a candidate for radiation for an Acoustic Neuroma unless the tumour was above 2.5-3cm in diameter.
All acoustic Neuromas are close to the brainstem and cochlear which makes it a little tricky. But that is why dedicated machines like Gamma Knife are often recommended. Or if you are chicken of the head frame like me Cyberknife.

The latest machines are a lot more accurate and little or no damage is done to surrounding tissue.

I do think it is worth getting more information on radiation for such a small tumour

[PaulW]

Here is an interesting paper...
85% of people had some testable hearing at 10 Years
44% hearing preservation at 10 Years
http://pfeifer.phas.ubc.ca/refbase/files/Chopra-Internationaljournalof-2007-68-845.pdf

[MG]

Hi PaulW,

Just found out that I will need radiation within the next year. My AN increased in size by 4 mm this past year. It is now 1.3 CM. I am a big chicken and don't like the sound of the head frame. Would you mind telling me how CK differs? Did you have a one time zap or more then one zap? Did you have many side effects months down the road? I am worried about headaches, facial issues, etc..

Thank you, MG

[PaulW]

I received CK in a single dose.
CK gets its accuracy by taking a 3d xray of the skull during treatment, and aiming the robot based on the xray. So if you move the ck robot moves with you.

Had no issues with headaches or facial problems..
But had more issues with what I already had... Balance hearing and tinnitus got worse, but all got better. It took about 6 months to feel better than pre treatment and 2 years to feel really good

Check out this website
Www.myacoustic.org
My experience was somewhat similar but problems were less bothersome.

[MG]

Thanks PaulW. I will check it out! Glad you are feeling good again.

MG

[rodneyd]

Hi MG,

You asked how the CK differs from GKnife.  From my discussions with the people at Swedish Medical Center in Seattle as well as reading the literature, CK uses a mask (rather than the halo that screws onto your skull in GK).  The mask is formed and molded to your face prior to surgery.  The mask is like the top of a pie, strips of material with holes that allow you to breath.  The mask is then attached to the carrier that you are laying on to keep your head still during the procedure.  It is critical that the head be immobilized, no matter which device is used.

The CK Team uses both an MRI and a Cat Scan to prepare a program to control the automated radiation device which will focus the radiation beams directly on the AN, in an attempt to minimize any radiation damage to surrounding healthy tissues.   A Team of doctors reviews the program prior to using it. 

CK can be administered with a single dose or multiple (fractionated) doses (typically 5).  GK is normally a single dose.

This is my understanding, but I have never had one, so other's may have more information.  Hope it helps.

[MG]

Hello Rodneyd,

Thank you for the information. I wonder if I would like a mask on with small holes for breathing. Sometimes I have to breathe through my mouth. When I lay down my nose gets stuffy. Oh well, it's either that or pins in your head!    It's back to trying to make a decision. Thanks again.

MG

[LethaGriffin]

Hi all! I had my AN surgery at Vanderbilt in April of this year with Dr. Rivas and Dr. Thompson (neurosurgeon). My AN was small but I did not like the thought of it being in there and causing further damage. I can't say enough good things about the care I received while I was at Vanderbilt. They are top notch. My surgery took about 11 hours and once they got me in the room, they allowed my 4 year old son to come in and he got to come each day thereafter. That meant a lot. With the surgery I chose (trans-lab surgery) I did lose the rest of my hearing but no facial paralysis. My balance was off some. I would walk beside the wall or whatever to have something to touch just to steady myself. In time that was better too. The more you can walk and do the vestibular exercises, the better it gets. There were good days and not so good days. Allowing time to heal is the key. In the end, I am glad I had the surgery and doing my normal activities again. Each person has to make their own decision.