new to the AN club

[cathyroe]

Well, as I read someone here say "welcome to the club that nobody wants to be in", I had to finally face the music (that I can still hear) and join the forum. Diagnosed last November with 11mm X 5mm, I have visited Docs from New York to L.A., and the odd thing is how many different answers I get to the same questions.
I have been reading the forum posts a little at a time, it honestly is pretty hard to do. I've had to work my way up to it, I guess.

But now, I think I am ready to make some AN friends and stop feeling so isolated. There is no support group within 3 or 4 hour drive, so.... I hope to join the forum and find support here. So many questions.....

I am currently watch and wait, and obsess constantly (is that my eye twitching? is that an itch on my cheek or is it going numb? you know the mind games...) One doc I talked to said there is no danger to the facial nerve unless you go through treatment, but after reading posts here I get the impression that the good doctor is mistaken. Right?
Actually, it is fatigue that seems the worst. Anyone else feel that way?
 
My MRI in May (6 months after the first one) reports "no significant change". So, I watch and wait. Another MRI next month.
Yep, this is the club that no one wants to be in, but since we are here....hello and best wishes and prayers to us all.
Thanks for being here, I look forward to making new friends here.

Cathy

[Derek]

Hi Cathy and a very warm welcome to this 'exclusive' club. It appears par for the course that the professionals each have their own take on which is the best treatment choice therefore whilst time is on your side you must do your maximum research before making the ultimate decision which will be YOUR decision and it will be the right one for you. My advice after almost 12 years in 'watch and wait' would be to stick with that option for as long as possible ensuring that you have annual MRI scans whilst acting upon the advice and guidance of a consultant in whom you have complete trust.

Glad you found us here and we look forward to helping you along your AN journey.

Best Wishes

Derek

 

[mesafinn]

Hi Cathy:  You are not alone!  We are here to help, support, encourage, and root for you!     P.

[arizonajack]

Welcome, Cathy.

A word of caution about Watch and Wait.

It has to do with your hearing. Even when the tumor doesn't grow it's still eating away at the acoustic nerve and it often doesn't take very long to lose all serviceable hearing on the AN side.

How has your hearing progressed in the past year?

[Derek]

I have no wish to be confrontational with fellow contributors to this forum but I have been sceptical of the often stated claim on this forum that an untreated AN will cause the tumour to 'eat away' at the acoustic nerve and result in inevitable hearing loss.

In furtherance I have discussed this claim with a renowned AN consultant who assures me that an untreated AN does NOT continue to 'eat away at the acoustic nerve' and that any degree of hearing loss on the affected side is solely attributable to the increase in the size of the tumour.

I am concerned that such an unfounded statement may cause those newly diagnosed with an acoustic neuroma to be apprehensive about considering 'watch & wait' as a viable and safe treatment option with the added caveat (as always!) that such a decision is always made acting upon the advice and guidance of a consultant in whom you have complete trust and that regular MRI scans are undertaken. Any escalation in symptoms and any increase in tumour size over 2mm should be the prime indicator that it is time to consider other invasive treatment options. Until then 'wait & watch' (in my considered opinion based upon nearly 12 years in 'wait & watch') remains the safest option with lesser risks of morbidity and be aware also that neither of the invasive treatment options carries any guarantees that hearing loss will not develop post treatment.

Regards

Derek

[arizonajack]

I have no wish to be confrontational with fellow contributors to this forum but I have been sceptical of the often stated claim on this forum that an untreated AN will cause the tumour to 'eat away' at the acoustic nerve and result in inevitable hearing loss.

Also not to be confrontational, but nobody said "inevitable", only that there was a RISK of further loss of hearing during Watch and Wait and AN victims should take that into consideration because once the hearing is gone, it isn't coming back.

My own hearing went from some to none during my own period of Watch and Wait while my AN grew by about 20%. Even though my hearing was gone I wasn't taking any chances on further AN growth.

Kill the alien when it hatches and you won't have to fight it when it's 10' tall and trying to eat you alive. 

[Derek]

A word of caution about Watch and Wait.

It has to do with your hearing. Even when the tumor doesn't grow it's still eating away at the acoustic nerve and it often doesn't take very long to lose all serviceable hearing on the AN side.


Just to clarify...the above quote appears fairly straightforward in that it commences with a 'caution' about 'watch and wait' then specifically states 'that even when the tumor doesn't grow it's still eating away at the acoustic nerve'. That claim is totally incorrect and the implication is that the incorrect assumption will result in the loss of all serviceable hearing on the AN side which is simply not the case as only enlargement of the tumour can result in hearing loss.

Those who are newly diagnosed and contemplating all of the available treatment options, particularly 'wait and watch' must be furnished with factually accurate data to assist with their all important decision making process.

Regards

Derek

[arizonajack]

Those who are newly diagnosed and contemplating all of the available treatment options, particularly 'wait and watch' must be furnished with factually accurate data to assist with their all important decision making process.

We're in agreement on that.

[Mickey]

I stand by DEREK....  In 2007 diognosed I was crushed, especially with who wanted to this and who wanted to do that to me. Thank God there were alternitives like what I found on "The Wait and Watch Brigade" board, in a pro active setting. I`ve followed it ever since adding my own ideas into the mix and have come up to some very good quality of life years. I`m feeling actually better than when first diognosed ALL respects.. It may not be for everybody but in my opinion should be the first step if possible with such a slow moving tumor. Wishing all my AN friends the best! Mickey P.S. Thankyou Derek!

[Echo]

Welcome Cathy!

I started out on a very similar road as you.  I hung around in the background here for many months reading as much as I could prior to joining in.  There were times whether reading posts or medical articles that I could not last more than 15 minutes without feeling totally overwhelmed.  I can tell you it does get better, and you will meet many wonderful people here to help support you - especially at those times when you feel overwhelmed.

My AN was 1.8cm when diagnosed.  My first 6 month MRI report was similar to yours "no significant change".  I decided at that point to monitor my symptoms (not obsess) for 6 more months while continuing my research into treatment options. The Dr.s and the literature I read mentioned how slowly AN's grow so I felt I had time Wait and Watch while continuing my research.  My next 6 month MRI reported my AN had grown to 2.4cm - so much for AN's growing slow!!  My hearing on my AN side went from 70% to 40%.  I developed some fairly significant balance issues and decided Wait and Watch was no longer an option for me.  I made a decision to move forward with Gamma Knife and have no regrets.  I didn't rush my decision and I made sure to get several consults.

As for the exhaustion you asked about, well that goes with the territory.  I've struggled with it for the past year and it has increased with my balance issues.  Several people told me to listen to my body and get lots of rest.  It's good advice!  I think in the early stages the exhaustion came more from the stress of living with the AN, learning about it and trying to decide what to do.  My exhaustion now comes from my brain working overtime to help correct my balance issues and perhaps from the Gamma Knife treatment.  I work full time, and make sure to take 15 - 20 minutes at lunch to find somewhere quiet to sit with my eyes closed and just rest.  It makes a huge difference in getting through my day! 

Feel free to email me anytime you feel overwhelmed!
Take care,
Cathie

 

[Petrone]

Welcome Cathy, 

How about we'll be your support group!  You might get differing views on this forum (already have, though all with good intentions), but you seem to have a pretty good handle on the situation.  Trust your own judgment and continue to do your due diligence. W&W is often a perfectly viable course of action for an AN in the 1.1 cm range. See what your next MRI shows and decide then if any further action is needed.

In the meantime, take good care of yourself! A healthy lifestyle goes a long way in dealing with our unique situation. Get plenty of rest, eat a healthy diet, exercise regularly, etc.  If you haven't been doing some or all of those things previously, then start now!  Keep a positive attitude and don't let this little "bump" in the road keep you from living and enjoying life! 

Wishing you all the best!
Petrone       

[Gloria Nailor]

Welcome !  So sorry you have to join our ranks.  I stalked this site for months before I joined.  I would become very overwhelmed after reading what everyone had been through.  I was frustrated also, because everyone has such a different experience, it would be wonderful if there was one way to go with the same outcomes for everyone, but it just isn't that way. It's tough to be going through this and it helps being able to see what others with the same diagnosis have been through. Take care and welcome !

[TexasSprinter]

Cathy--I'm a few days late replying but welcome to the "club."  I had AN surgery last December, lost my right-side hearing (what was left of it) in the process, and the surgeons were not able to get much of the tumor because of the angle of approach and the position of the facial nerve.  Since then, I have been debating whether to watch and wait before another surgery or to do another surgery and get it over with (given my age, it's highly likely I'll have to do something at some point).  Anyway, just wanted to say that it's completely understandable that you are fatigued by constantly thinking about the tumor--I am as well, which is an important factor for me as I decide whether I can continue to watch and wait.   Best of luck to you, whatever decisions you make.

[cathyroe]

Thank you SO much, everyone who replied. I have been terribly remiss in answering only because I am so overwhelmed that every time I try, I have to go lay down instead!

Derek, I want to know how did a "self reduction" of your tumor. Meditation? Affirmation? It just happened naturally whether you thought about it or not?

Arizonajack and Derek, I THINK my hearing hasn't gotten to be a lot less in the past year, and Derek, I so much hope you are right when you say you have discussed this with an AN expert and an un-growing tumor does not eat away at the hearing nerve.
But does it eat away at the Facial nerve if it's not growing?

My constant quandary:

If the tumor is NOT growing, will the hearing nerve continue to be damaged?
If the tumor is NOT growing, then is the facial nerve at risk to be damaged?
If the tumor is NOT growing, will the balance nerve still be at risk?

If the tumor is NOT growing, WHY would someone choose to radiate it with GK or CK?

Is Cyber Knife safer or  better than Gama Knife?

I feel physically terrible all the time. Tinnitus, yes... blocked full feeling in my ear, yes... but it is the fatigue that feels paralyzing. I sleep 12 hours and can only stay up a few hours after that! TesaxSprinter, thanks for affirming that this is a part of the AN package.

If I the tumor is NOT growing, and I choose GK or CK, is there anyone who can attest to actually feeling better after the radiation?

If you get GK or CK and the tumor swells, won't that deteriorate the hearing and facial nerve because the tumor gets BIGGER?

I know everyone here has asked these same questions. I wonder if there is an answer that all docs agree with... so far, none of the docs I talk to have the same answers.

Mickey, I am encouraged to hear that you are feeling better now than when you were first diagnosed.  That sounds hopeful.
How did you do it? Supplements? Meditation?

Cathie, your story gives me a clue as to the fatigue. You had GK not long ago, only in Sept. Are you feeling even better now?

Petrone, you and I are in agreement on the healthy lifestyle. I am vigilant with diet and exercise. I have been a professional dancer all my life, and still (try to) get to ballet and dance classes, still work out everyday and teach dance. I think this is why my balance is still okay.

But my face and my eye.... I keep thinking I feel something tighten or twitch....makes me NUTS. And scared.   

Well, I have my 6 month MRI today. So I will have some decisions to make next week. Thank you all so much for being there.
Cathy

[Derek]

Hi Cathy...

Unfortunately I have no magical panacea as to exactly how my AN has gradually self-reduced from 2.5cm when initially diagnosed aged 58 years in 2002 (when I was advised to have 'early' surgery) to the present 1.3cm as I approach my 70th birthday. But upon diagnosis I did a tremendous amount of thorough research into all of the available treatment options (microsurgery / stereotactic radiosurgery / conservative management) and thereafter made a well informed personal decision that subject to regular MRI scans; no escalation of symptoms and acting upon the advice and guidance of a consultant in whom I had complete trust, I would opt for conservative management (watch & wait) for as long as I could safely do so. My main reasons influencing that decision were that of all the available treatment options, conservative management had the least risk of morbidity /side-effects and these should not be underestimated. Also, advances in treatment are constantly being updated and refined with corresponding reduction in the associated well documented risks associated with invasive treatment be it microsurgery or radiosurgery if I were ever to require such treatment.

This decision together with a rigid overhaul of my general lifestyle including a healthy diet and regular exercise combined with a very positive mental attitude that I was going to be the one in control of the AN and not IT controlling me has stood me in great stead over the ensuing 12 years with the added bonus that I am in far better general health than I was pre diagnosis!

Be assured Cathy that I have it on the good authority of a very well known stateside consultant that a benign acoustic neuroma, particularly one which does not show any evidence of enlarging, does NOT 'eat away' at the acoustic nerve nor any other nerve. If it remains static and there is no escalation of symptoms then it is best left in peace. My maxim has always been that if it behaves itself it can stay.

Also remember that whatever treatment option is decided upon whether it be invasive or conservative, a regular MRI scan will always be required for the rest of our lives to ensure that there is no enlargement or re-growth of the tumour so in effect even if an invasive treatment option is selected 'watch and wait' will still be applicable. I appreciate that there are only a few of us on this Forum who are in 'long-term' watch and wait mode but I do believe that this is because far too many of those who are newly diagnosed unnecessarily opt for early invasive treatment.

Also Cathy, the occasional eye 'twitching' etc is often attributable to mental stress and fatigue of which your AN could be a major contributor but this should subside in time.

Best of luck with your MRI scan today and we look forward to some good news from you.

Regards

Derek