ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: MG on July 29, 2014, 07:46:56 am
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Hi Everyone!
My results are good after a year of W&W. At almost a centimeter when diagnosed there has been no change in size. I was worried that my AN had gotten larger because over the past few months I was having dizzy spells while walking and driving. It seems a lot better now and it doesn't nessasarily mean that it is increasing in size if you have these side effects. I feel so much better knowing this. I hope everyone on W&W have good results on their next MRI!
Take good care!
MG
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Great news. As a 12-1/2 year W&W glad to hear you are going to be able to continue. If the dizzy spells seem much better, what about the anxiety/stress possibility that can bring on that feeling?
Sheryl
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it doesn't nessasarily mean that it is increasing in size if you have these side effects.
Not increasing in size doesn't mean that it's not doing you damage.
Sorry to have to put a damper on your post but you should be aware of that.
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Congratulations on a good year. I was just dx a few weeks ago. My neuro oto guy wanted to jump right in and cut out my 1cm AN. Went to one of the best neurosurgeons at Duke who specializes in skull base tumors and he was all about how often these things don't grow at all and I should WW. I am all for this approach! If I need to get my head cracked, I'd like to wait as long as possible. If I don't need the surgery at all, that's even better.
He told me that excising AN's is the single most difficult form of brain surgery to perform, and that's from a guy who has done a gazillion of these with very good results. If he is telling me to not let him do surgery me right now, I'm going to listen.
Who knows, in a few years if we need ours out, they may have even better techniques. MAybe they could even come up with some kind of medicine that could kill the AN without having to open everything up. This surgeon was also telling me that as time goes by, radiation treatment is getting a better "reputation". In time, surgery might no longer be considered the "first choice" for AN's.
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Sheryl, Thanks for the good wishes. :) I think stress could be a factor but I think mine was just the same thing that brought me in to see the ENT in the first place. I was terribly dizzy last year and while driving I had an awful scare. As I said before I am slowly getting back to normal, ( if you can call having AN side effects normal) ::)
So nice to hear from someone that has been on W&W for 12 and a half years! Do you have any side effects that bother you daily?
Hope to keep in contact.
MG
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ANGuy, Thank you for the well wishes. I agree with all that you said. My Doctor in Gainesville, Fl. told me the same thing. He said if you have a small AN just stay on W&W as long as you can. He said having brain surgery is risky to say the least. I do hope that in the near future they will have a better alternative for us. I am willing to wait as long as this mini tumor stays mini!
Best of luck with your journey! Keep the faith! :)
MG
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Hi MG - I was originally referred to University of Florida in Gainesville as one of the best in the state for brain stem tumors. Never got up there from SW Florida. This was years ago before we became "snowbirds" so I elected to W&W and consulted with docs in the Boston area who all agreed to W&W. It has worked well for me. I can discern no obvious symptoms and keep a close watch, having yearly MRI's.
Good luck,
Sheryl
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Hi Sheryl,
That is good to know about Gainesville. If and when I may need to return there. I will go for follow-ups on my Mri but hopefully I can continue on W&W. I just wish I didn't have this dull pain and fullness on my left side of my ear/face. It comes and goes every day and I have to take Advil. I feel like I am sleepy all the time too. I am back on the treadmill again so that will help.
Keep the faith and take care!
MG
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Hi MG - Your symptoms sound just like mine - dull pain/ache, ear fullness coming and going, not unbearable and not every day and sleepy too. Mine's all on the right where the tumor is but will sometimes affect the left. I also occasionally will have a "burning" sensation on my tongue (like I burned it). All of these things can be chalked up to normal body sensations especially if you have allergies, sleep problems, sinus problems, postnasal drip, etc. I, too, use Advil but found a new product by Bayer called, "Bayer Back and Body" and find it helps the rest of my aches and pains too by only taking one instead of the two recommended.
I just made plans for my yearly MRI and doctor consult with a radiation oncologist close to home here in Massachusetts rather than driving up to Boston. I'm pretty sure if it is time to do something, it will be radiation.
Sheryl
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Hi Sheryl,
Thanks for the new medication info. I might try that. For some reason lately I haven't had to take the usual Advil until later on . Normally it was 7AM because of pain but now it's maybe around 9AM. These AN's are hard to understand! ??? But that's okay with me. The less meds I have to take the better. :)
I wish you the best when you get your MRI. Keep me posted!
Take care, MG