Now Six Year Wait and Watcher

[bob.e]

Diagnosed Dec '99.  Two part AN or 9th crainial schwannoma.  Doing great with no growth, no treatment, no problems.

I know that wait and watch isn't good for everyone and has certain risks.  Just posting this for general info.  Good luck everyone!

P.S. Sorry about the double post.

[Dabs4811]

Wish I had waited and watched.  My tumor was only 7 mm, very small.   I only have dizziness all the time and funny taste occasionally now but it's more than I had anticipated.  I didn't have much input before I had surgery in April 2006.  Family and friends urged me to "get it out." 

Hope you keep up the good work.

Dee from Michigan

[ppearl214]

wow Bob!!!! Sounds like so far, so good!  Hang in there and sending wishes that "head booger" grows no further!

Phyl

[tatianne]

thats amazing, good for you.
Im newly diagnosed, 8mm x 3mm, and im trying to decide what to do.
Im 30 years old.
How old are you and how big was your AN on diagnosis ?
How big now ?
Do you live with any symptoms ?
Sorry for all the questions but your story has great interest for me.
 

[BevM]

Encouraging news, thank you!  I have been advised to watch and wait with 9.5mm; however, I am experiencing significant symtoms.  I am wondering if you have symtoms such as Tinnitus, ear pressure, feeling of fullness, headache, neck pain, imbalance and if you have received any kind of treatment of symtoms during your watch and wait?

Thanks!
Bev

[tatianne]

Bev, mine is 8mm.
I have tinnitus, ear fullness, headache on my AN side and the other side, neck pain, hearing loss and once in a while balance problems.
Im meeting with the neuroptoligist on Monday, i guess he will suggest to me at that point what to do.
Im wondering if with all these symptoms he will suggest to wait and see, or do they just suggest that for patients who have hardly any symptoms.
Bev what does your doc say about your symptoms ?
If you dont mind me asking , how old are you ? Im 30.

[krbonner]

Im wondering if with all these symptoms he will suggest to wait and see, or do they just suggest that for patients who have hardly any symptoms.

I was diagnosed in June 2005 after presenting with fullness, tinnitus, almost complete hearing loss, and dizziness/balance problems.  Even with all that, I was advised by the neurotologist to take the watch-and-wait approach with repeat MRIs every 6 months to monitor any growth.  At the time, he felt that the risks of surgery were much more than the risks of waiting and I agreed. 

One year later, with my second follow-up MRI, we found the "head booger" was growing faster than most (almost 5mm in a year) and was starting to encroach on my brain stem - thus the plan for surgery this fall.  But, in the end, you're the one that has to be comfortable with your decision after weighing all the risks and benefits of all options, knowing how they relate to your life.

I'm 35, by the way!  ;-)

Katie

[Windsong]

Hi Bob.e,

I think that's great that you've had six years of watching and waiting with your An.

I was wondering about what you meant re two part An and also I find it interesting that you said yours was on 9th nerve as i think that's the hypoglossal nerve???  For some reason this strikes a chord in me.... no idea why.

Thanks for any further explantions on that.

Best wishes,
Windsong

[bob.e]

No growth and no symtoms that I can tell.  I was diagnosed in Dec 1999 when checking for cause of migraines.  Two part schwannoma with one part .8 cm and the other oblong at about 1.2 cm.  It's mostly associated with the vagus nerve (9th cranial).  Probably have another MRI later this year.  Most of the time I forget this even happened and wish I hadn't told anyone.  Never did tell my family.

I'm pretty careful about getting plenty of exercise and eating right.  I have a specific diet and routine.  Not saying that has anything to to do with my luck, just mentioning it.  I've been flamed before for mentioning my approach so I don't disclose it anymore.  To each their own.

Considering what could have happened I am grateful for everyday I wake up healthy.  It is a gift.

Good luck everyone!

[Battyp]

Bob are you kyaking in your pic?
WOW! 
We will not tolerate flaming!
Yes, everyday is a gift...thanks for popping in and sharing with us!

[Obita]

Bob:

I love hearing wait and watch stories.  It means they can and do grow slow. 

Best of luck to you!! 

Kathy

[Nancy Drew]

Thanks Bob for sharing your watch and wait story.  I was diagnosed in Dec. 2005 with a very small AN (4mmx5mm), and my six month MRI showed no growth. I have no symptoms except for problems with background noise.  It is encouraging to hear that you have been able to do the watch and wait option with success.  I hope the same is true for me.  I have my next MRI in May 2007, and I hope to follow in your footsteps.  It gives me a lot of hope to hear your story.  Best wishes.  Nancy

[Captain Deb]

No flamers here! At least not anymore. Congrats of having the guts to wait it out! Kayaking is almost as fun as sailing! Now no one flame me on that'n!
Capt Deb

[antoinette]

Bob, being a "wait & watcher" for 16 years (knowing the name of AN for 9 years plus a prior 7 years of "obvious symptoms), I can relate to what you write. I feel grateful someone started a topic for the wait & watch patients. There are more of us that meet the eyes. But this is still an oddity.
In the old ANAUSA there was one who had been waiting 17 years.That was in 2002, but I knew about her since 97. And there was 2 more, plus I. I often felt out of place among the patients who had treatment.
Do you think we could keep this topic open for W&W to join.?
I also try to minimize my tumor with a reasonable diet and also use my symptoms to learn what is affecting the AN and in what way.
It is now such a long story, I will not pour it in one post, I have try this before. No response.
My success in using myself as a gunny pig is paying off in spite of the continuous growing of the tumor and the discovery at the beginning of 2 more schwannomas, one very close to the AN and one in the kidney area. All seem to have started at the same time. I have been very successful with the one in the kidney though surgical removal would be easy there.
Diet is very important, and drinking mostly water is primordial, at least to me.
Thanks for your post.
antoinette
 

[rezski]

I am a 1 year watch and waiter.  Last summer I had just had a completely different major surgury and was  not ready for another.  This year no growth and as my doctor put it "we don't treat a rock".  He also mentioned he has some patients going back a few years to the beginning of his practice that have had no tumor growth after diagnossis and no treatment.  I am leaning towards radiation for when I do have to make a decision on treatment but for now I have till next summer's MRI free.  Any change in symptoms would of course warrent checking as well but so far so good.  And ski season is just around the corner!