Author Topic: the feelings ? nervousness of dealing with the AN  (Read 4918 times)

carter

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the feelings ? nervousness of dealing with the AN
« on: March 04, 2009, 11:19:38 am »
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
Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

ppearl214

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Re: the feelings ? nervousness of dealing with the AN
« Reply #1 on: March 04, 2009, 12:12:31 pm »
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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

texsooner

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Re: the feelings ? nervousness of dealing with the AN
« Reply #2 on: March 04, 2009, 12:46:16 pm »
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
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

Jim Scott

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Re: the feelings ? nervousness of dealing with the AN
« Reply #3 on: March 04, 2009, 03:31:38 pm »
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
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

moe

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Re: the feelings ? nervousness of dealing with the AN
« Reply #4 on: March 04, 2009, 08:09:18 pm »
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
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

suboo73

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Re: the feelings ? nervousness of dealing with the AN
« Reply #5 on: March 14, 2009, 07:17:55 am »
...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.....   Phyl

Carter,  When i first starting reading on this forum, i did not truly appreciate the phrase 'AN Journey.'  I was thinking, well, now i know what i have (a journey in and of itself!), so it is the 'best kind of tumor' and it can be fixed/treated, end of story - NOT!  :o  ---  Hearing the term AN from my sister, oh my gosh!  Hearing it again from my ENT - WOW! -  Then telling a family member, someone i have been close to all my life, sharing lots of good and bad times - she said something like this, "...well, we are all getting old, we are past our prime and falling apart."  OK THEN - how in the heck do i respond to THAT at 53 (i thought 53 was the new 40!)  >:( I did not respond and don't believe i ever will.  So much for support from that person! --  Now i wait, just like you - i feel sorry that you had the added craziness of the first CK doc you fired.  But you stood your ground (fighting that good fight!) and received the treatment YOU decided you wanted.  AWESOME!

My second MRI is due in early April - i can tell you i think about it, am concerned what they will see...  -- My mother or grandmother or someone wise i know used to say 'don't borrow trouble.' -- Well, i have to believe we are lucky to have such wonderful technology to screen and observe these issues.  I HAVE to believe that, or i would have continued to ignore my symptoms.  I learned a long time ago, after losing a child, that i want to know everything that is happening to me, want to know the odds of the condition, treatment, recovery, etc.  That's me.  --  So i agree to these tests, hope i can make a good decision when i need to, and try not to worry too hard otherwise.  (Not easy - i just try to stay busy.)

Most importantly, i am glad to be on the forum.  I cannot offer experience about treatment (yet) - but just try to contribute where i can.  These folks are fantastic - and that word is really too humble to describe what they have done for so many like ourselves.
Keep posting your thoughts - we all gain the collective knowledge and strength from those around us. (thank you Phyl.)  ;)

Sincerely,
Sue

suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

GeorgiaMei

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Re: the feelings ? nervousness of dealing with the AN
« Reply #6 on: March 14, 2009, 01:36:47 pm »
Hey Carter.  I just want to add that we all go through a roller coaster of feelings with our diagnosis.   Although we are "lucky" that it is an AN and not another type of tumor, and as Jim said, you will be okay, it doesn't make the process of diagnosis and telling others easy.  I hope you can let go of the "wimp" idea. Whatever anyone tells you, it is scary and nerve-wracking and we have all been there in one way or another-especially when with follow-up MRI's etc.  I hope you know that you are definitely not alone in worrying.  I hope you can do something fun this week: distraction is the best medicine for me!  (I have grown to love books on tape)  Good luck and let us know ow it goes!  Karen
3.3cm x 2.6cm : Translab resect 3/08
Post-op epilepsy , multiple clots in brain sinuses
Chronic H/A, Facial paralysis, Imbalance, Vertigo
CN VIII removed-deaf in R ear
Received amazing care from Drs. Roberson and Colen at CEI/Stanford (www.californiaearinstitute.com)

kate

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Re: the feelings ? nervousness of dealing with the AN
« Reply #7 on: March 19, 2009, 06:43:43 pm »
H Carter,
In addition to all the great advice others have already posted, I just want to add the importance of acceptance, which took me a long time to learn myself. Acceptance that you can't know the unknown, acceptance that it is natural to be afraid (without putting your self down and calling yourself names like wimp),  and also acceptance of your own incredible strength in coping with this so far. Kate
Surgery 5-1-2000,  3.9cm, Huntington Memorial Hospital, Pasadena, California. 
Gold weight first couple of years.
Palbebral eyelid spring 2004 by Dr. Robert Levine "saved my life."
 I  have been enjoying life a lot, even with a crooked face and one sided hearing.

Nancy Drew

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Re: the feelings ? nervousness of dealing with the AN
« Reply #8 on: March 26, 2009, 09:11:31 pm »
Hi Carter,

Have you received the results of your MRI yet?  Hopefully all is going well inside your head.  I had my first post GK MRI at three months.  Usually the doc does one at six months.  I was having weird sensations in my head, and the radiologist ordered a MRI earlier.  Good news, the AN is shrinking, but in the process they found out I had a bad sinus infection.  Just had sinus surgery last week, and I am on the mend.   I had more problems with emotions vs. physical symptoms with my AN.  Now that I am getting farther out from GK (see signature), the emotions are calming down.  This board is a good support system so use it as often as needed!  Hang in there and best wishes on "the journey".

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

 


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