Author Topic: Change in AN size before GK  (Read 4515 times)

Nancy Drew

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Change in AN size before GK
« on: September 12, 2008, 12:02:28 pm »
I am scheduled to have GK Oct. 7th.  I had my last MRI in May.  When they do the MRI before you have GK, can they tell if the AN has grown?  For some reason, in my gut, I feel like my AN has grown.  My symptoms seem worse lately.  I was just wondering if the docs compare the two MRIs, and if so, can they tell me if the AN has grown?  I am really curious.

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

Pascale

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Re: Change in AN size before GK
« Reply #1 on: September 12, 2008, 01:09:14 pm »
hello

Yes, they do an MRI right before the procedure just for that reason.

 I just finished my CK treatment and they did an MRI right before the fisrt session, and from my understanding, it has grown a bit. But they will use the latest MRI to setup the computer accordingly to the size of your AN so the GK can radiate the correct area.

good luck and think positive :D
Pascale

2.1 x 1.8 x 1.7 cm AN.
CyberKnife treatment completed on 09/12/2008 with Dr. Chang and Dr. Gibbs at Stanford.

:D

Nancy Drew

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Re: Change in AN size before GK
« Reply #2 on: September 12, 2008, 01:24:04 pm »
Hi Pascale,

I was just following your CK updates.  Hope all is going well.  I am really curious about the growth factor.  I have been in W&W mode since 2005 since it was small, not growing and no symptoms to speak of.  I had an idea that my AN was growing about six months before I had my last MRI.  I could tell that my hearing had changed in my AN ear even though I still have decent hearing.  In the past couple of months, I have started having tinnitus, ear pain, problems with altitude changes, and more word discrimination problems.  These onset of symptoms recently have made me wonder if my AN has perhaps grown since May when I had my last MRI.

I am thinking as positively as I can about my upcoming GK.  It was delayed from mid-Sept. until Oct. 7th.  Not a long period of delay, but it sure has increased the anxiety at times.  I know a lot of people are waiting even longer than I am.  Patience . . . . I keep telling myself.  It will be here soon.

Thanks and best wishes for a speedy recovery.

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

sgerrard

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Re: Change in AN size before GK
« Reply #3 on: September 12, 2008, 07:03:01 pm »
It will be here soon.

3 weeks from next Tuesday, in fact. :)

I would think they will take a pretty good look at the new MRI, and let you know if it is any bigger. They like to be able to tell you "good thing you are getting treatment" if they get the chance. It will have been 5 months, I would guess there is a fair chance it has grown a bit in that time.

Hang tight, your turn is coming up...

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Tumbleweed

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Re: Change in AN size before GK
« Reply #4 on: September 13, 2008, 01:43:23 am »
Nancy, the silver lining to your having to wait for treatment and also your worsening symptoms is that you'll probably be eager to receive treatment when the day finally arrives. As you know, the hardest part of all this is the mental part. Personally, I found myself occasionally (mildly) second-guessing myself leading up to the treatment. But whenever I thought about waiting even longer to take action, I realized I was happy that my treatments were already scheduled and coming up soon. My symptoms also began to worsen in the last several months leading up to my treatments, and this was a major impetus for me taking action and feeling overall good about my decision to do so.

Perhaps you're more resolute and at peace than I was about scheduling treatment. (I don't want to overstate my ambivalence; I knew in my heart I had to do it and that I was making the right decision, but about once a week my mind rebelled.) But if not, then this delay might just give you the perspective you need to fully embrace your GK session. Good things come to those who wait.  ;)

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Nancy Drew

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Re: Change in AN size before GK
« Reply #5 on: September 13, 2008, 04:39:47 pm »
Steve,

Thanks for keeping track of my upcoming GK date.  Some days I wake up, and I don't even know what day and month it is.  I wrote a check last week with Oct. as the month.  Wishful thinking that Oct. will be here soon, I guess. You are so right, also.  There is this need to hear the docs say that it is a good thing that I am getting treatment now . . . especially when I had a few doctors tell me to continue to W&W. 

My anxiety is so weird that it baffles people sometimes . . . or maybe not.  I am one of those people who goes to the restroom upon entering a movie theater.  Then once I get to my seat, I worry that I might have to go to the restroom right when the movie starts, so I go back to the restroom.  Then I go back to the theater, and then I return to the restroom one more time before going back to the theater.  I hardly ever see the previews.  Then during the movie I start thinking I might need to go to the restroom, but I don't want to miss the movie so I don't go.  But, I sit there and think about going to the restroom the whole time.  I am getting better though!  I have cut one trip out recently.  My friends just laugh, and they make sure I get the outside seat.  When I know in advance that I am going to the movie, I don't drink anythng the whole day hoping to dehydrate myself thinking I won't have to worry about going to the restroom.  Doesn't work.  You should see it when I go tent camping with my husband.  Just as I get settled down to go to sleep, I'll have these same thoughts of needing to go to the restroom.  We now have a three man tent with two doors.  I think you call this OBSESSIVE COMPULSIVE DISORDER.  The nurse did tell me, however, that if I need to go to the restroom at any time during the GK procedure, I can go without disturbing the treatment.  But, I'm going for the twilight sedation the nurse said was available. 

I'll make it.  Thanks for the support.  If nothing else, I'll just keep going to the restroom until Oct. 7th gets here.

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

Sheryl

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Re: Change in AN size before GK
« Reply #6 on: September 13, 2008, 05:51:39 pm »
WOW Nancy I thought my hubby was the only one with the weird restroom worries.  He does have some prostate problems but he's exactly the same as you.  He scouts out restrooms ahead of time, makes sure he has aisle seats in theaters, and we know where every fast food restaurant is along our trips.  Luckily as he is a "male" we bought two plastic urinals (one for each car) like the ones they have in hospitals.  I thought he may have a touch of OCD but he definitely has GAD (generalized anxiety disorder). 

He's still battling swelling/scar tissue issues from his CK done 10/1/07 on his meningioma regrowth and I'm still a 7-1/2 year wait and watcher on my 9th cranial nerve schwannoma (sort of like an AN).  When he did have his CK he mentioned his restroom trips and also postnasal drip which makes him cough and they said there would be no problem - just let them know.  He sailed through the whole thing without moving.

Sheryl
Larry
"Spouses doing it together - brain tumors that is"!!!
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Cheryl R

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Re: Change in AN size before GK
« Reply #7 on: September 13, 2008, 06:04:43 pm »
Nancy, Have you ever mentioned this to your dr as sounds some like over active bladder.       I unfortunately have some problem with it at times.                There are some meds to help but I have passed on their use so far.                 There even couild be a chance some of your daily meds could be a factor in it.        Or maybe it is just OCD.     LOL!              I sympathize with you!
                                 Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Nancy Drew

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Re: Change in AN size before GK
« Reply #8 on: September 14, 2008, 02:13:54 pm »
I mentioned this problem to my GYN once, and he sent me to the urologist.  He did an ultrasound, and my bladder was just fine. It is just a nervous thing.  I usually don't have a problems unless I'm at the movies, tent camping, right when I get to the doctor's office, before a massage, in the dentist's chair . . . . I could go on.  In most other situations I am just fine.  I am just weird . . .duh.  Also, I go nutty if I lose something.  Heaven forbid if I misplace my keys.  I will stay up all night looking for them, and of course, they are usually right under my nose.  I go to therapy about some of this stuff so it helps.  I just try to laugh at myself in retrospect.  What else can you do.  So, before I get caught for being off topic on my own post, I guess we should go back to the AN size thing!!!  Thanks for reading my posts.

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

sgerrard

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Re: Change in AN size before GK
« Reply #9 on: September 14, 2008, 03:09:09 pm »
First, a comment on AN size, so this post is partially on topic. ANs can get bigger over time. There, done with that. :)

My sister has a bit of OCD, particularly about leaving things in the car or at someone's house. It takes a good three or four passes to absolutely verify that nothing has been left behind. We just plan a bit of extra time for her. :)

I get the restroom visit issue sometimes when I am leaving the house. Even if I just went half an hour ago, and it is a short trip, I need to be certain that I will not need to go while driving. Just seems like a habit now.

I wouldn't worry about worrying about these things. :) A few little idiosyncrasies just make us humans instead of being robots. If they rise to the level of being debilitating and preventing you from being able to function, then you can worry about your worrying, or seek some help with it.

I doubt it will be an issue at your GK procedure. Once you get there, you will realize that if you can just chill out for a couple of hours, the whole thing will be over and done. With a little chill-out pill to help, that should be no problem.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Kaybo

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Re: Change in AN size before GK
« Reply #10 on: September 14, 2008, 08:37:52 pm »
Steve~
I never thought going to the bathroom before a road trip was strange at all - I thought it was a prerequisit!!   ;D  Even into my adulthood, he'd say "I better go try" or "Everyone go try before we get in the car!"  I say it to the girlies everytime before we leave!!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Nancy Drew

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Re: Change in AN size before GK
« Reply #11 on: September 15, 2008, 02:12:14 pm »
Hi!

Going to the movies tomorrow night.  If my compulsive bathroom habit caused too much emotional turmoil, then I guess I wouldn't go to the movies at all.  You are right, Steve, we all have our idiosyncrasies.  Maybe we should start a post so people can add to the list.  I cannot go to bed unless the closet doors are closed.  Goes back to childhood when my brother told me "monsters" hide in the closet.

Back to the AN size so we don't get our hand slapped (or at least called out on it!!!), it would make since that the AN could have grown since my last MRI in May.  As you pointed out, Steve, it will have been almost five months since my last MRI, and I really didn't notice any "changes" in my AN until about four months before that MRI.  So, if these ANs typically grow one to two mm a year, then it makes since that my AN has probably grown some more.  Especially convincing to me since I now have new problems popping up that I haven't had in the past--tinnitus, problems with altitude changes, plugged up ear, and some other minor stuff here and there.  I wonder what makes an AN decide to grow since mine had been in there for quite awhile without doing anything.  Like I have said in other posts, my AN was found by accident.  Who knows how long it has just been sitting there.  Or maybe it started out at 1mm, grew slightly over the years, then decided to take a vacation from growing, and now moving on up in size.  I think I made the right decision to have treatment now.  The date will soon be here.  In the meantime, I will work on the bathroom thing, keep my keys in the same place, and close the closet doors before bedtime.  However, on the "bright" side, I don't have to have a night light to sleep at night!!!

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

Nancy Drew

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Re: Change in AN size before GK
« Reply #12 on: September 17, 2008, 09:15:04 pm »
Happy to report that my OCD was at bay last night at the movies.  I went to the restroom only once instead of my usual three times.  Progress.  However, I thought I lost my car keys, but they turned up at the bottom of my purse after much looking around.  Thank goodness for great friends who get a laugh from my weird behavior.  I think people hang out with me because it makes them feel "normal".  If that is my purpose in life, then so be it!!!  Nancy ;D ;D ;D
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