Post-Treatment > Cognitive/Emotional Issues

the feelings ? nervousness of dealing with the AN

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carter:
my emotions feel as if they go through a roller coaster .... 

1.  first with the hearing the words "AN".
2.  then telling others.
3.  makign the treatment decision.
4.  waiting for the CK
                firing the dr
5.  decision making again
6.  waiting once again.

then waiting for the issues to come.  thank goodness that i have had little side affects to date.   so after 7 weeks, i am feeling good and thinking that i am on the way to having the emotional issues behind me ....  but i have a scheduled MRI at 8 weeks - this is Tuesday the 10th and a dr visit two days later.

i read that most of the time, no change is noted until much later ...  but i am as nerveous as a long tail cat in a room of rocking chairs!!!!!  why is the MRI scheduled so soon?  and of course, the what if's????

call me a wimp?   just wondering when / if the MRI vidual gets better????


thanks for listening

ppearl214:
Hey carter.

I hope you understand that I moved this to the "Cognitive/Emotional Issues" forum as I believe it would be better suited here.... thanks for understanding.....

As with anyone enduring AN's or any other ailments in their life, the key, to me, is how to "cope"? How do we cope with  the waiting processes? Trying to figure out the best docs or the best course of action/treatment?  How do we cope with the day to day reality of these things that affect us?

You're far from being a wimp and I have to commend you for having the strength to note it here... on this forum... so that others can chime in with support for you. It takes a great deal of courage for someone to open up, as you have.. .and I honestly have to commend you.

I, personally, don't have answers to the questions I posed above... but, for me, I gain my inner strength by those around me... and yes, even the wenches and scallywags on this site/forum.  In our case, to me, it really does "take one to know one"... and since we are all on the same ship (PBW, of course!), then we understand. The forums are one terrific source of support, as you and many (myself included) have learned......

I wish I had the answers... I don't... I doubt anyone does... but I know what works for me to help cope.. and one of the things, for me, that works, is being able to open here... to those that truly do understand.

so, that's my 2 cents worth... hang in there.... try to take a deep breath each morning to remind yourself that you can fight the good fight... and that is what it is... a good fight.. and you will win!

Phyl

texsooner:
Carter, first of all you're not a wimp. I don't think any of us are that have(or have had) an AN. I know you had CK, but my doctor also ordered an MRI at the 2 month mark after my surgery. I remember being all nervous with anticipation to meet with the doc to tell me about that MRI, but he told me the main purpose of that MRI was just to get the baseline going forward after the AN removal. Even so, I wanted his feedback on what that MRI looked like and he said it was "ok"...didn't see any problems. My next MRI will be at the 1 year mark(in August) and he will compare that one with the 2 month post op MRI to see if there are any notable changes.

Anyway, I think different doctors have different schedules on having MRI followups, so this is just probably your doc's normal routine to have it done at 8 weeks. I'm sure all will be fine. Stay positive.

Patrick

Jim Scott:
Carter:

I was tempted to suggest you go around singing "Who's Afraid Of An MRI?" (to the tune of "Who's Afraid Of The Big, Bad Wolf" ) but decided that might seem flippant.  :D

In all seriousness (and in my opinion) just about everything associated with an acoustic neuroma is vexing to some degree.  The fact that the majority of our pre-diagnosis symptoms are either invisible or attributable to other sources is problematic.  Once diagnosed, the relative rarity of an AN and subsequent lack of understanding of the medical aspects (by some physicians) and the lack of understanding by friends and family can also be a burden.  Now, post CK, you're worrying about what might (or might not) happen in the future as a result of the radiation.  Although this is unproductive, it's also quite normal.  Although I've undergone both surgery and FSR, I have no guarantee that re-growth won't occur, but I decided some time ago not to think much about that until an MRI shows re-growth and/or my former symptoms return.  Because they haven't and my last MRI (8/08) showed necrosis and tumor shrinkage, I'm pretty confident that my AN is finished.  I refuse to think otherwise.  Why should I?  In fact, in your case, why shouldn't you think that your AN is also a goner?

I was required to have an MRI 6 months post-op - and it showed nothing.  I had another at a year post-op - and it showed some 'enlargement' of the remaining tumor.  My neurosurgeon, a  cautious fellow, ordered another MRI be taken 3 months later.  That MRI showed a decrease in tumor size, confirming his suspicion that the enlargement shown on the 1-year MRI was due to swelling of the remaining tumor as an after-effect of the FSR.  I had another MRI 3 months after that - and it showed the beginnings of necrosis.  I had my 2-year MRI scan on August 1st, 2008.  That one showed continued necrosis and some tumor shrinkage, so, my vigilant neurosurgeon has moved my MRI scans to an annual basis, which, considering his cautiousness, tells me that I'm probably 'out of the woods'.  He would never say that, it's just my assumption - and I'm sticking with it.   We choose how we'll 'feel' (emotionally) about any issue - and I choose optimism.

I understand and can empathize with your emotions but I suggest you wait for the MRI and if there is something to worry about, do it then.  In the meantime, don't allow tomorrow's (possible) worries affect how you feel today.  Enjoy your good recovery.  The follow-up MRI is simply a precaution.  If you have no symptoms, you're likely going to continue to enjoy a smooth recovery.  Of course, swelling as the tumor dies can occur and cause some problems, but until that happens, and it may not, don't let these concerns control you.  Enjoy the days and be thankful for an apparently excellent outcome from your CyberKnife procedure.  I'm very thankful for my good surgery/FSR outcome and I enjoy every day.  I hope you'll choose to start doing the same.  :)

Jim

moe:
Great advice, Jim. BTW you look great for being an older person :D Lots of wisdom in your thoughts.
I'm a middle age lady. Just remember Carter that it is a small growing, benign tumor. It is a nice tumor, the best you can get. It is your friend- the AN.
Maureen

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