10 years post surgery coming up

[lifeisgood]

I am curious how many scans I should have up until 10 years? I had 1 three years ago.  I had 4 prior to that . I am changing insurance and have met my deductible and thought that I should have one more before the end of the year.

I can't believe how much time has passed. I was diagnosed 2 weeks before my 40th birthday. I am turning 50 in Feb. Since then, I've had another child who was diagnosed with autism and am getting divorced.
I feel ok.  I have very little energy but am doing alright.  Does anyone else feel wiped out since their surgery?  I have no tears still and dry eye but it is manageable.  I still am self conscious about my face , especially in pictures but I feel pretty good about myself. 

facial pain is an issue. Probably the hardest part is not getting concrete answers about the pain. I remember asking my doctor why when I looked up to the corner of my right eye, the tinnitus got really really loud. He didn't have any answer.

Looking back over all the support I have received from this site, I am really grateful.
If you are recently diagnosed, you will get through this.  I was told my one doctor, that this is the best kind of tumor to get. 
I remember thinking that is a really stupid thing to tell someone but it now makes sense to me.
:0

[Kathleen_Mc]

lifeisgood:
Does one say congratulations on such a 10year anniversary? lol
I am nearly 23 years post op and like yourself continue to have issues of fatigue, at least it's the tumor thing I blame it on not that I'm getting old or anything! lol
Seriously it is to be understood that we would have issue's with fatigue given what we've been through, not sure of the treatment you had but if you have balance issue's your brain is constantly trying to work extra to keep that in check = more energy used , add on to this the constant effort to hear things = more energy used.....etc.
I, like yourself, still hate to see pictures of myself and/or even have my photo taken.....I forget about the facial issue's generally until I see pictures of myself. Despite all the "plastic" repairs I have done it is still noticeable (likely more to me than others) especially when I smile, unfortunately that has lead to me keeping a pretty stone face most of the time and others interput this that I am not a happy person when in fact generally I am.
In terms of how many MRI's or the frequency of them that is up to your doctor to decided, I don't think there is any hard and fast rule on this. I myself didn't have a follow up MRI after my first removal until 8 years post op, it was done for another reason and low and behold they found the tumor had regrown! I had just had my son so I then went into "watch and wait" mode until I had the regrowth removed several years later (it didn't need to be removed yet , medically speaking, but I couldn't deal with knowing it was in there and growing psychologically anymore). The idea of having follow up MRI's was never discussed with me by the DR who did the surgery nor the neurologist I saw at the time now my family doctor.
In terms of no tears, likely will continue to be an issue for life....drops drops drops!
And yes I have experienced the problem of doctors not being able to give concrete answers to all these things "we" experience, not a lot of doctors know much about AN's and the "after surgery" life and even those who work with patients like us don't have all the answers.....I have learned to sometimes stop questioning why and just carry on.
And yes you are right, if someone is to get a brain tumor AN is the one to get!
Take care, Kathleen

[Karen]

I too am coming upon my 10 year surgery date. My doctor told me not to dwell on my facial issues!!!  easyfor him to say.  he didn't have any aswers for me either about my facial numbness and discomfort.  But I am still thankful to be alive!!!  guesswe have to just suck it up and go on!   

[lifeisgood]

Thank you ladies. Thanks for the drops reminder. I don't use them EVER and I know I probably should so I will start at night too with ointment.

I just left am message with one of my surgeons regarding the scan.  I had one at 1 year, 3 years, 5 years and 8 years.  I figure it will save me $2000 to get it before Jan 1 when my new insurance kicks in.

Thank you for the reminder as well regarding why I am so tired. It makes so much sense. 


Mary