ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: lifeisgoodnow on May 06, 2017, 10:13:51 pm
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Hi everyone,
I had an AN removed in 2004. I had my last MRI (I think a total of 5 between pre surgery and last one) in 2014. My doc pretty much told me, no regrowth at all and said that I no longer need a follow up MRI since it had ben 10 years.
What you your thoughts on this?
My eye has been dryer than usual on that side with a little twitching so of course I start thinking maybe I should get another one. (Twitching lasted one day and I am 53 so the dry eye could be a result of getting older.)
Hope everyone is well. I used to be LIfeisgood on this post but had to change to lifeisgood now for some reason. It's appropriate I guess.
I am on Cymbalta 20mg a day for facial pain and it is helping and for depression due to losing my dad. Other than that I am pretty good. I have suffered from lots of fatique pre and post AN but grateful to be alive.
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If your eye dryness and twitching is only on your AN side, a would think that an MRI would be a good idea.
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Thank you so much Dreading it but doing it. I will keep all posted.
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The data up to 10 years is pretty good. After 10, I'm not so sure. I would think that if someone becomes symptomatic they should get an MRI. If not, I think they should get one periodically, whatever that means (2-3-4 years). I actually would rather get one every two years not every year. I'm not a fan of the gadolinium.
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To determine growth (not find tumors) a T2-weighted MRI without gadolinium contrast agent will do the job. (Check this with your medical professional.)
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An MRI found mine after 14 years!
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Patti, that is scary that it grew back so large after all those years. How often did you scan post removal? Did you have symptoms? I really can't say I do but feel that 4 years is a long time to go without a scan for me. My doc told me at 10 years that I didn't have to get future scans b/c if it was not growing at 10 years, chances were slim it would. I was told that a "wafer" thin piece was left with no blood supply at removal. Better safe than sorry. I am waiting for the script to arrive and xanex so I am climbing back into the tube. I hope all is well with you. How did you recover the second time around?
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Is there any reason NOT to continue to get MRIs, to be on the safe side? (Besides obvious issues like inconvenience and cost.)
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Apart from inconvenience and cost, which as you've alluded are negligible in the scheme of things, the thing to watch out for is gadolinium contrast agent. It may not be good for you. Fortunately after your initial MRI, which should be done with gadolinium contrast agent, you can watch size by using a T2-weighted MRI without contrast agent.
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lifeisgood - first of all, my initial surgery was a total removal. all the follow-up MRIs showed no growth, even at 10 years. i was supposed to get one five years later. at the four year point, i decide to go to a local neurologist because of some symptoms. headaches were more frequent and came as painful bursts. most would go away as fast as they came. some would stay. the other thing was that at my part-time job, i felt incapable of remembering things. however i may have been re-acting to stress as my father had died a few months earlier and i was now in charge of my mother's life (1500 miles away). but i went and got the surprising news! i haven't had any changes since my radiation procedure. i am over-due for a follow up MRI because i switched doctors. i still get head-ache shocks and now some inner ear pain. BUT i have a very active life (exercising, social, travel) and think to myself that at this point nothing can be done anyway, so i am more patient than usual. i did fully retire after that bad MRI, because i felt i couldn't rely of my cognitive skills (and i still think so) and it was only a couple of years before my husband retired. so, i would highly recommend a new MRI. i should note that my cognitive defects started after my first surgery due to brain swelling.
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Hi Patti, when you had radiation because of AN regrowth, did you go thru another recovery period i.e facial nerve paralysis ? Thanks, Joan
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no joan because i still had facial paralysis from the first time. it didn't get any worse. i did have a period of facial spasms for a few months after the radiation. patti
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Thank you Patti. Did you go to Dr Wiet? I thought we went to the same doc. He retired and now I am going to Battista. I am going in 10 days for the MRI. No huge symptoms. I lost my dad as well a few months ago. One thing I can say for certain is the surgery wiped me out energy wise. I live with it but am tired most all the time. I am a single mom with a child with special needs and a teenager but attribute the AN surgery to wiping me out. I don't know if it's the single sided deafness or what but I feel iike I have chronic fatigue. Gone to many docs/nobody can answer that one. I was tired pre an as well so who knows. I try not to figure that one out since it is exhausting. :)
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No I did not go to Dr.W. I had my radiosurgery and follow-up exams with Dr. Garg of Montefiore. Not very happy with their communications, office management, etc. I never got return phone calls. So many more issues. So i'm going to a local person for now unless intervention is needed. Then I will search again.
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Went in for Mri last Friday. Will get results in a couple of days. took .5 mg xanex before MRI and fell asleep snoring in the tube. I had to repeat 10 min of the scan bc apparently I was moving around.
Woops.
Mary
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Please keep us posted!