ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: anissa on May 09, 2009, 12:02:54 am
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I met with my neurotologist yesterday. He was very pleased with my progess and said he just needed to see me again in five years for an MRI. ??? Seriously? He reassured me that regrowth is less than 1% in AN total removal surgeries. I reminded him that I did not have complete tumor removal, he reviewed the op report and told me come back for an MRI in one year, I'll meet with the neurologist again then also. It made me nervous that he went from five years to one year based on that little fact. I'm mostly relieved to have it moved up, not because I like having MRIs but I do want to keep on top of things.
One thing I noticed is that I have a ridiculously small chart for a person that just had brain surgery! Not that thats important but I thought it was strange. :D
Nothing else to report. I have the very slightest of facial weakness shown in the eye on my AN side but not even hardly noticeable. I still have a metallic taste in my mouth on the right side only and I'm hoping that goes away soon. My jaw is still a little sore on the AN side also. I have two bald spots in my hair from the head clamp during surgery, one the size of a nickel and the other the size of a dime. He said is was probably caused by the pressure of the clamps but when all else fails blame it on the anesthesia boys ;). I had to be positioned on my left side for the whole procedure because of my chiari malformation thus requiring the head brace/clamps. Thats about all my complaints, all fairly petty and boring. And in that respect, I'll take boring. :D
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they left abit of my tumour behind to save the facial nerve, i had a scan 6 months after the op, then 1 year after that, my next scan is due oct . this year
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Anissa -
I think you're smart to go with the MRI in 1 year - as opposed to having the next one in 5 years.
I know that all docs have different "rules" but my AN was completely removed and I had a MRI at the first and second year anniversary marks - and was just told yesterday to make sure I have one next year.
I don't mind being in the TOG (tube of gloom) and I've found I really like the annual reassurance that my doc and a radiologist are both looking at my scans "just in case". Although I've been quoted the "only a 1-2% chance of regrowth", the odds of me having an acoustic neuroma in the first place weren't too great either. You just never know.
It's nice to hear that your recovery has been "fairly petty and boring" - IMO that's exactly what you want ;D
The metallic mouth should go away in time - I wish I could be more specific than that - but mine lasted for months and then one day it was just gone.
I hope things continue to go smoothly for you.
Best,
Jan
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Anissa ~
Thanks for the positive update! An annual MRI seems like a sensible way to monitor the area and be alerted to any possible re-growth. Your post-op issues seem to be similar to those of us who were blessed with good surgical outcomes. A few minor annoyances but nothing the least bit life-altering. I'm happy for you and wish you continued healing and a great life. :)
Jim
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He was very pleased with my progess and said he just needed to see me again in five years for an MRI. ... One thing I noticed is that I have a ridiculously small chart
These are the exact benefits one hopes for when choosing surgery! Congratulations! (Even if you get an MRI a bit sooner) ;)
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Anissa,
Wonderful news! I'm glad to hear you're doing so well. I am going for for my first post-op MRI sometime next month and will request annual MRIs if my doc doesn't suggest them. I've found the TOH doesn't bother me in the least and I would rather be safe than sorry -- I know regrowth is unusual, but as we've all seen, it does happen. I'd like to have the peace of mind knowing that I am AN-free, or should I have a regrowth, I'd rather know sooner than later.
Wishing you continued wellness,
Wendy
p.s. hope your hair grows back too. :)
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That's good stuff Anissa! Boring is just dandy. I'm also glad you spoke up about your MRI and the fact that they did leave some behind. I've learned that you really have to be your own advocate and not be afraid to question your doctors! I was wondering how you were doing- glad you provided an update! Keep up the good and boring news!!!!
Kathy
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Boring is excellent!
At my last appointment, the neurotologist starting explaining my MRI report, and I had to point out that he was looking at last year's report. Fortunately they all look the same now anyway. I hope your one year MRI is equally uninteresting.
If I had to pick, I would say I hope the taste issue clears up first. That would bug me more than the others, I think.
Glad to hear you are doing so well.
Steve
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The metallic mouth should go away in time - I wish I could be more specific than that - but mine lasted for months and then one day it was just gone.
I’ve still have the metallic taste too. My doctors told me that should go away, but here it is two months out and still….nothing! :(
I’m looking forward to the day when it’s just gone!
I’m happy that your doing well Anissa, and glad you spoke up about the MRI. I go for a baseline MRI on the 31st and then every year after that.... and they got all of my tumor.
Scarlett