ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: keithmac on May 27, 2014, 03:57:49 pm
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Hi guys. I'm Keith from the UK, an RVer since 2004, now a regular snowbird visitor based in AZ.
First symptoms appeared December 2009 in AZ but diagnosed only in 2013 after my hearing deteriorated significantly. Now I'm on W&W and expecting recent MRI scan results shortly. My AN was 14x9 mm last fall and I'm hoping it's not grown significantly since then.
I'm a member of the Brit. ANA (BANA) and have joined ANA to help improve my overall understanding to help me with an eventual choice of treatment.
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Hi! I also am on W&W now for a year in August 2013. I am due for my MRI in July. I am very nervous to say the least. I live with the occasional dizziness and ear pain every day but Advil helps a great deal. Then of course the dreaded ringing in the ear! It is a hard decision on what procedure to take if the tumor shows growth. I have read all about radiation and it seems to cause side effects that may be lasting. On the other hand, surgery has side effects too. It is a gamble both ways.
Good luck with your MRI Keithmac! Let us know how it turned out.
Best wishes, MG :)
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Hello and thanks for your good wishes.
Since I wrote my opening posting I've had the good news that there has been no discernible change in my tumor since my scan last fall. That's what I was hoping for although I'm still waiting for the official W&W continuation verdict from the professor in charge of my treatment.
I hope your next scan shows no change as I do appreciate the dilemma about what treatment to opt for. Shortly, through BANA, I'll be visiting a center in one of our hospitals that has a cyberknife unit as I'm expecting one day to have to make a choice and I want to be as informed as possible. I think website forums are also a great way of getting background information and this one is very well structured and informative.
I suppose I've been lucky - if having an AN can ever be seen as being lucky! - that my symptoms have been spread out over a considerable time allowing me to acclimate to each separately. I'm sorry to hear you get pain in your ear. I have had tinnitus since 2009 and experienced balance issues which now have passed, but thankfully I didn't get pain - I do feel for you.
Please let me know how you go on in July and I'll keep my fingers crossed for you.
best wishes, Keith
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Hi Keith,
I am so happy to hear about your great report! ;D Thank you for keeping your fingers crossed for me in July. I will let you know how it goes.
Take care, MG
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Good luck to you both! I too am in W and W. Just Dx in December 2013 and had my repeat MRI 5/23-no growth-yay! As my MD says-the good news is it's small-the bad news is it's small. It really is hard trying to decide what to do....
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Thank you Beth. Happy to hear yours didn't show any growth. All we can do is wait and see what happens.
Take care, MG
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Hi MG! To me W+W is much more complicated than to only wait and see what happens. Don`t forget the watch part which I interped as, do something! I became very pro active in getting myself feeling better. Much of what I (we) did has been writen down in the W+W Brigade posts in the AN forum. All involved please make a note and at least give it a look. All I can say is its 7 years now W+W and I`m a bit older and feeling a bit better. My 1 cm intruder has been stabilized and symptoms have been reduced to very minor annoyances. Best wishes, Mickey
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Hi - I may be the "queen" of W&W, going on 12-1/2 years. There are quite a few of us "oldies" - Mickey and Derek who have gone the W&W route for awhile. I have had some minimal growth - started at 9mm and now at 14 mm, but no symptoms and I am faithful about following up with my yearly MRI's. I did ask recently if I could go two years but was told there could be sudden growth spurts. It wasn't easy at first, thinking each ping, zap, etc., was due to the neuroma but, at this point, days will go by that I don't even think aboutit. Mine is actually on the 9th cranial nerve but is very close to the 8th. It is just like an AN but would affect my swallowing, gag reflex, and cause hoarseness - no problems yet.
Good luck and keep us posted,
Sheryl
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Thanks Mickey and Sheryl.
It gives me hope that you all have been on W&W for so long. I will keep in touch.
MG :)
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Hi - I may be the "queen" of W&W, going on 12-1/2 years. There are quite a few of us "oldies" - Mickey and Derek who have gone the W&W route for awhile. I have had some minimal growth - started at 9mm and now at 14 mm, but no symptoms and I am faithful about following up with my yearly MRI's. I did ask recently if I could go two years but was told there could be sudden growth spurts. It wasn't easy at first, thinking each ping, zap, etc., was due to the neuroma but, at this point, days will go by that I don't even think aboutit. Mine is actually on the 9th cranial nerve but is very close to the 8th. It is just like an AN but would affect my swallowing, gag reflex, and cause hoarseness - no problems yet.
Good luck and keep us posted,
Sheryl
That's a long time on W&W, Sheryl, and I'd love to be able to match that. Only time will tell if I'll achieve success!