ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Mickey on January 14, 2009, 05:17:11 pm
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http://anworld.com/wandw/ Mickey
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Mickey - wonderful, wonderful article - thanks so much for posting - I've decided to print it. As probably the longest "wait and watcher" on the board (7 years, two months), the article truly reinforced my decision.
Sheryl
p.s. - Hey Derek - are you out there? Hope you get to read this article and are keeping up right behind me ;)
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I think I had found that article previously on my various, and numerous googles. It is quite good.
One thing that didn't hit home for me, and rather particular to me - but may be of use for anyone visiting these boards, that the 2cm broad base guideline (with many exceptions) is only really the CPA size, those of us who are lucky to have the really small suckers 'intracanicular' haven't even started the countdown yet. So, while I have a 5mm x 8mm tumor - it is entirely intracanicular. To be honest, I am not sure if it has to growth 2mm or 5mm to get to the magical 1cm and thus entering the CPA but then I have up to that magical 2 cm mark before it becomes a danger to the brainstem (of course, other symptoms asides).
Another thing that I have seen repeatedly on studies - 'if you are over 60, you might never see growth' type phrases. I did ask my doctor since I am 37 years of age - 60 year olds' tumors don't necessarily grow slower, but 37 years old have more of a chance for the tumor to have a growth spurt somewhere in the normal lifespan.
I am a watch & waiter and pretty darn happy with the option. I do have my 6 month MRI schedule and we shall see what happens. I am researching - waiting for an appointment at the GK centre here in Toronto.
No clue where I will ultimately land, but glad I have the time to do my research and understand fully my choices.
Thanks for the post.
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Very informative article Mickey...anyone contemplating 'watch & wait' will gain confidence and encouragement to 'give it a go' subject of course to suitable advice and guidance from their consultant and regular MRI scans.
I am not one to willingly accept the ageing process but if there is substance to the theory that the AN growth rate diminishes with age then it is a bonus!...certainly hoping that I am in that 40% bracket!!
Right behind you Sheryl.....7th anniversary next month with my MRI due in March and neuro consultation in April... fortunately I have had absolutely no change or increase in symptoms over the past 12 months so with a bit of luck I will get my pass renewed for another year!
Derek
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I`m glad you have enjoyed the article. I`m with you in the W+W boat. I`m open to all information which may help everyone. Maybe some type of diet or supplement of interest may come next? In any case all the best!, Mickey P.S. Iv`e been very meticulas on my eating pattern and supplements. If someday it does seem to make sense I`ll post what I`m doing.
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Mickey,
Thank-you also for the confirmation of my Watch and Wait status. I have just reached my 2 year waiting time and hope also like you and Derek to be in that coveted 40%. My next MRI will be in July 09. Sending everyone best wishes and speedy recoveries for all who have been treated.
Jackie
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Great article I have a 2cm AN and am watch and wait for 8 years had my MRI on the 16th Jan 09 just waiting for results not expecting any change ,Annie
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Hi Annie...
I think you are on a par with myself and Sheryl for being one of the longest ANers on this board in fact you may currently be our record holder!
I presume that your AN was 2cm upon diagnosis and has not altered since? It would be interesting for us to know the circumstances of your diagnosis and any useful tips or regimes that you have undertaken during the past 8 years to keep the little 'bugger' under control!
Very best of luck with your impending latest MRI results...do let us know how it went!
Derek
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Hi Derek! I`ll give you a little tidbit! I know a W+W in my club who is going on near 20 years. He`s close to 80 now. Also know a couple more over 10 years! Just a little news to keep positive, Mickey
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Hi there Mickey...
That's really positive and encouraging news..particularly with regard to the chap who has close on 20 years since his diagnosis and is almost an octogenarian!
Any chance that you can sound him out as to the antecedents of his diagnosis; any growth rate over the ensuing years; his general lifestyle etc and most importantly any good advice he may have for us youngsters which you could include in the 'Top Tips' thread?
Derek
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Hi Derek! I questioned him pretty good. He states he does everything in moderation nothing in excess, eats proper. He can`t attribute anything specific for his sucess. His hearing is almost gone on the AN side. His growth rate was very minmal over the years and hasn`t had a MRI in a long time. Perfectly normal in all ways with such a nice personality. We can only hope for this in our future! Also we will never know the actual rate people take this with them, but ther was one study that stated 1% of the population who die from old age probably have this. Mickey
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Thanks for the update Mickey...I am a tad surprised however that the gent in question has not had regular MRI scans in recent times...maybe that is one of his ways of coping with the condition 'out of sight - out of mind' perhaps?
I think the study you refer to may originate from the Scandinavian area where every deceased person is subjected to a post mortem examination hence the discovery of latent acoustic neuromas enabling the statistics to be formulated.
Derek
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Hi Derek,yes mine was 2cm when first diagnosed it has never changed .My circumstances of diagnosis was >>>I went to the doc with loss of hearing, dizziness and a strange numbness on one side of my head she said I was having panic attacks and put me on medication ,a year later I had no hearing left and while in town one day a hearing aid shop was giving free tests so I went in he said my loss of hearing wasnt natural and sent a letter to my doc who in the space of two weeks had me sent for a private MRI then to my consultant who gave me the option of an op in a couple weeks or watch and wait ,I decided to do the watch and wait ,I have MRI scans every 2 years .
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Hi Everyone - just catching up with this thread and a tad of insomnia (4:17 a.m. in Florida and very chilly)!!
Annie - although I always love to be ahead, in this particular race it's great to hear of others outlasting me (7 years W&W). Keep up the good work.
Even though my tumor is on the 9th cranial nerve, it is dealt with like an AN. In fact at my latest hearing test, I was quite concerned because the left side (supposedly good side) hearing was about 10% worse than the right (where the tumor is). I was told that if I was going to worry about it that I could have my two-year MRI early but neurologist and ENT did not feel any concern.
Decided to wait as other issues - two parents with Alzheimer's and husband with meningioma regrowth (treated with CK in October, '07) to deal with.
Derek - sounds like we've been downgraded but that's okay!!
Sheryl
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Hi Sheryl! My fellow W+W. Besides having what we have I do believe you have to count in the normal aging process for hearing loss which does happen for 90% of the population anyhow. Keep the faith, Mickey
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Hi Mickey - I didn't have a problem with the normal aging hearing loss (yeah right!!) since both sides were equally as bad, but when I heard the doctor say my left ear was worse than my right, I immediately thought of tumor on that side. One of the symptoms of AN (which I'm sure you know) is hearing worse on one side than the other. In the mean time I've heard from many who have unequal hearing and no tumor. There are people who wear only one hearing aid. I did contact my neurologist since I just had an exam with her in December and she said she felt there was still no problem waiting for the two years to be up for my next MRI. Of course they always tell you if symptoms get worse, please notify them.
Hope it's warming up where you are - here in Florida it may finally break "70" today.
Sheryl
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Hi Sheryl Does sound like you have a full plate. I`m just trying to be optomistic going into the future. Hopefully everythig will work out for the best. I wish my temp. was near 70. I`d gladly take 45 living hear in NY. Lets keep the faith! Mickey
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Great article, thanks
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Mickey,
thanks, I printed this article out a while ago, it's great!!
LisaP
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Thanks Mickey, that article made my day! I am still putting off my follow-up MRI, which means I have only the original diagnosis from November '07. I probably should be chided, but for now I prefer it here in la-la land.
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Bean -
sometimes la-la land is just what you need - certainly can make life easier ;)
Don't put the MRI off too long though.
Good to see you back. We missed you.
Jan
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Thanks, Jan, you are so right. It takes a beancounter to know one, but I'm acting more like a "creative type" than the analytic that I am! I am planning to ask my family practice doc to order an MRI when she does my annual physical in April. I'm sure that will really make her day (bloodwork, mammogram, "MRI", pap smear.... maybe she won't notice). It would save me from finding a neurotologist in another state and trying to find his/her office with my directionally challenged noggin. All I really want right now is to know latest size of it. Ironically, my husband is almost deaf and has tinnitus in his "wife-listening" ear and I can hear a pin drop at the house next door.