Making a decision.

[Jim J.]

This is my first post after visiting the Forum for several weeks. The people here seem very sincere and truly willing to help and I'm very thankfull for that. Just a short history and I'll get to my concerns. I'm 58 and was diagnosed with a 1.6 m.m A.N. in my right ear last June. I still have over 80% of my hearing. I had an M.R.I. after 6 months and again just last week showing no growth. I have the typical symptoms of tinnitus, dizziness, fullness in the ear, but nothing extreme and if they don't get worse, I feel like I can live with. I would love to continue with watch and wait but I have two main concerns. First I would like to save my hearing but what I understand is that evan with no growth the tumor can deteriorate the hearing nerve and may cause sudden hearing loss. I've seen two specialist in Atlanta and spoke with a Doctor at house clinic. The Doctors in Atlanta suggested Watch and wait because according to them my hearing can't be saved with surgery. The Doctor at house felt confident he could save my hearing performing Middle Fossa surgery. I tend to believe the House Clinic Doctor especially after reading posts on this site about House. My second concern is my insurance. At this time I have great insurance that will cover me where ever I want to go. What happens down the road at age 65 with Medicare or what worries me more is what happens next year when "The Affordable Care Act" takes effect. I don't know if I'll be able  to keep this great insurance and for how long. If the tumor starts to grow again in couple of years I may be stuck with less options. 
I realize that this is my decision and I'm the one that ultimately has to decide but I feel great reading all the knowledge and experience on this site and thought maybe you guys might want to share your thoughts on this. Thanks again for being a great resource.

[Jim Scott]

Hi, Jim ~

Thanks for joining the forums. 

I'll try to be succinct by offering the advice that, considering your age and 'great' medical insurance along with the full implementation of the controversial Patient Protection and Affordable Care law (in 2014) you should definitely consider having the Middle Fossa surgery at HEI in Los Angeles this year. 

ANs can grow quickly and without warning, compromising your options and definitely affecting your hearing in the affected ear.  With that knowledge and the uncertainties with medical insurance you referenced, having the surgery now instead of waiting seems prudent to me.

Jim

[mesafinn]

Hi Jim,

Welcome to the posting world, although I'm sorry you had to join us.

House is a great place, but if you've read the reviews here you will see that they virtually always recommend surgery.  Some here disagree with my assessment, but I stand by it.  Have you looked at GK at all?  It can help to preserve hearing if they don't radiate the cochlear too much (4.5 gy or less).

Having said that, surgery is a very logical option for many and House is a great place.  There have been some terrific people here who have had success with watch and wait.  But there are others here who have regretted waiting because symptoms increase and/or they lose hearing.

As you note, only you can decide, but given the uncertainties of U.S. health care....and uncertainties about what may/may not happen with your AN, some action might be merited.

Nothing but my two cents....I so respect what a personal decision it all is!

Cheers,

P.

[Mickey]

Hi JimJ! I was pretty much in the same exact situation as you 6 years ago. I looked at all my options and chose to W+W with minor symptoms. To me W+W was not going to be what it sounded like, but taking a pro active health stance instead, trying to naturally feel better. In any case over the last 6 years I've managed to keep my AN stable, migranes are now very rare and less potent, fullness is gone,  and tinnitus I`m used to after so many years. If you do decide to W+W please go over our W+W Brigade posts to be informed on how we manage. Best wishes, Mickey

[robinb]

I totally concur with mesafinn regarding House.

Living in CA, I did a personal consultation there. They push surgery as its whats they do, period. If surgery is your choice (and its your choice, no one else's) based on posts they are the best.

Also like you, I was fortunate to have insurance that allowed me to make a treatment choice and then to have it done anywhere in the U.S. After much research and speaking to as many people on the forum and on the WTT list, I felt confident in my decision to have GK at UPMC. Have had slight after effects. You can see my treatment journal on this forum and feel free to PM me should you wish to talk.

Good Luck!

[Derek]

Hi Jim...

From a purely personal perspective, I too was diagnosed at your age but with a 2.5cm right-side AN and was advised by my then neurosurgeon to have 'early' excision of my tumour. Following extensive research I decided to W & W and now over 11 years later my AN has self-reduced to 1.3cm and other than SSD on the affected side which is no problem to me, I am totally symptom free and because I opted for a healthy diet / lifestyle I have never felt in better health than I do now as I approach my 70th birthday!

There are of course pros and cons with all treatment options but medical intervention via microsurgery or radiosurgery has morbidity risks which I was not prepared to take and for me it has proved to be the correct decision. As Mickey suggests, have a browse through the posts in the Top Tips for the W & W Brigade 'sticky' topic but ultimately Jim, the decision is yours and whatever you decide upon it will be the right one for you.

Best Regards

Derek

[Jim J.]

Thank you so much everyone for your advice. There is a correction not that it makes a big difference. The tumor size is 1.6 c.m. not m.m.

I'm leaning toward surgery simply because it will take the stress and worry out of my future, although it could leave me with side effects that I might regret.
I guess everything has it's own risks. Thanks again

[jetatp]

Hi Jim

I was just diagnosed May 26th with an AN in my Left Internal Canal. After doing my research and with over 80% of my hearing in tact I have middle fossa
surgery scheduled next Wed June 26 at House. Dr Friedman and Dr Lekovic are performing the surgery. I really did not want to wait and like you now
I have great Insurance that covers the surgery. I believe that they are one of the best in the country and perform many of these type of surgeries
yearly. This is just my opinion good luck with your decision.

[LisaM]

I'm waiting and watching and following Derek's lead in the wait and watch brigade.  Self reduced with lifestyle change, diet change, supplements, yoga and meditation.  Still have my hearing and I intend to keep it.  I worry about a surgeon who promises to save hearing.  The middle fossa is the best shot at saving hearing but it's still surgery in your head near a whole bunch of cranial nerves.  I'd ask the surgeon how many middle fossa's he's done and if saved hearing in 100% of these surgeries.  Best of luck on your AN journey.

[PaulW]

When we are first diagnosed with an AN, many of us just want it gone.
We want to be back to how we were and the thing that has caused us this inconvenience removed.

I think this is a very natural reaction.

After stopping and thinking about it for a while.. What I really wanted, was to live out my life as normal as possible.

If that is your end goal, take a deep breath, your AN is smallish. you have time.

Surgery is one option, and if you really want it physically gone its the only option.
The downside of surgery is that it comes with inherent risks.
While many emerge from surgery and have a great result, it is a bit of a coin toss.
There is a risk that surgery could lead to a quality of life worse than W&W or radiation.
This is very difficult surgery and is why you should choose a team with extensive experience.


I believe about 5% of people on W&W have a tumour that shrinks, and never need intervention.
A small percentage have perfect hearing after 10 years on W&W.
Depending on the study it has been demonstrated that between 40 to 60 percent of people can remain on W&W and do not need intervention. Although hearing loss is a consequence for many on W&W.
Long term hearing loss after surgery is also high, and after radiation too.

I chose radiation because like you I wanted to deal with it, but did not want the downside risk that surgery might bring.

If radiosurgery didn't exist I would have chosen W&W because there is a fair chance that I could have been one of the 40-60% that don't need intervention.

I am nearly 3 years post cyberknife I still have my hearing, balance is good, and I live my life exactly as I did before diagnosis. I avoided the significant risk of surgery.
I could not be happier. The stress of whether the tumour was growing or not vanished the day I had it zapped