Author Topic: MRI rotten news  (Read 8135 times)

Larry

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MRI rotten news
« on: December 22, 2008, 10:40:52 pm »
Hi all,

I have been in watch and wait mode for 3 years now and just saw my ENT man following my MRI that i just had. In 15 months, it almost doubled in size. It was 11mm now its 18mm and a lot wider than it was before. This measurement is taken from the bone so only the part that is protruding into the brain. last year it was just hovering on the brain stem, now its pushed its way in.

I see a Dr Fagan and he suggests that the cut off for watch and wait is 15mm and, well, we know that 25mm is the cut off for radiation.

I won't go near surgery again so looks like its the GK machine for me. The machine we have in Sydney is not the newest so I'll have to check it out first.

I have to say that it's so easy to advise people or suggest what to do and encourage etc but when its "you" the message is hard to receive.

Everything is closed now so I'll have to make an appointment in the new year.

Whats that old saying "Sh.. happens.


Laz


2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

sgerrard

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Re: MRI rotten news
« Reply #1 on: December 22, 2008, 11:24:10 pm »
Rotten news indeed, Laz.  >:(

I think you are already SSD from the surgery, and as far as I know, that would be the only concern regarding how new the GK machine is. If you are at 18 mm, you are well within the comfort range for doing GK. It sounds to me like it is time to just set it up and get it done. Who knows, maybe it will tidy up some of the residual symptoms you have been having.

Maybe not exactly what you had in mind for a New Year's resolution, but what else can you do? You have an AN that is growing, and it needs to get treated. I know you have paid your dues, here is hoping that you can have a successful GK treatment and be done with the thing for good.

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.

Kate B

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Re: MRI rotten news
« Reply #2 on: December 22, 2008, 11:53:04 pm »
Laz,

I agree, there is something to be said when the news relates to you. The tough part will be harnessing the emotional energy.  But a new year and a new amount of emotional energy is on its way. Also, on the making lemonade side from lemons, 18mm allows you to consider GK as a form of treatment.   

We will be here to support you!
Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Jackie

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Re: MRI rotten news
« Reply #3 on: December 23, 2008, 12:36:47 am »
Hi Larry,

So sorry that the news of regrowth is not what you wanted to hear! We, that are wait and watch right along with you feel your anxiety and frustration right along with you! When I read your post I just cringed as it's the news we all hope to avoid! The good news is you have treatment options that aren't as invasive as the surgery you already endured! Just know that we care and our hearts and love go out to you and know that you are in my prayers for this to be final for you! Good luck and keep us informed! Blessings are coming your way,
Jackie
« Last Edit: December 23, 2008, 12:39:02 am by Jackie »
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

lacey7

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Re: MRI rotten news
« Reply #4 on: December 23, 2008, 12:45:37 am »
Laz,.
I'm so sorry to hear that news.  I also agree, that it's really alot harder when it's you.
I agree....surgery is hard, so now you know your option to take.  I think it's easier to go and just get it over with.  For once
and all.
I DO agree, it's the pitts.
But, I'm sure you will do fine, and just keep looking forward.  We'll all be here for you.
Lacey
Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.

Sue

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Re: MRI rotten news
« Reply #5 on: December 23, 2008, 01:37:46 am »
Aww Laz, I'm sorry that darn thing has grown.  It's a bummer all right!  You are stronger than "it", so hang in there, kiddo.  You know you have the power and might of the entire ANA Forum to watch your back. 

Huggles,

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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Derek

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Re: MRI rotten news
« Reply #6 on: December 23, 2008, 04:15:52 am »
Hi Laz...

Give that little bugger a good zapping and let it know that you are the boss!

You are a very positive guy who has given lots of support to others in our 'family' and now its our turn to support you. You will win this contest...no doubts whatsoever about that and we will be with you in spirit all of the way.

Hope Santa is extra specially good to you this year...hang in there and very best wishes for 2009.

Regards

Derek


Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Brendalu

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Re: MRI rotten news
« Reply #7 on: December 23, 2008, 05:27:18 am »
Laz,
It sounds like you got a lump of coal in your stocking this year.  Not fair.  Use it to heat the barbeque grill and get that sucker zapped.  I'm wearing my pirate sox for ya.
Merry Christmas, Laz, the day is coming when you get a great MRI report.

Hugs,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

HeadCase2

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Re: MRI rotten news
« Reply #8 on: December 23, 2008, 07:37:14 am »
Hi Laz,
  As the hippies used to say, "Bummer".   I agree with your GK plan.  If I end up with regrowth, I'll go with GK or CK.   We'll be thinking about you and sending good vibs your way.
Regards,
  Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

yardtick

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Re: MRI rotten news
« Reply #9 on: December 23, 2008, 09:29:11 am »
Laz,

Another bump or should I say pothole along the road of your adventurous AN journey.  Yeah poop does happen, but I know you, our beloved Laz from the land of down under is as tough as they come.  Move over all you Aussie leading men, we have our very own Laz and he is going to kick some serious AN butt. 

Thinking of you my friend.  Enjoy your family and friends over the Christmas holidays. 
Anne Marie oxoxxo

Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Jim Scott

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Re: MRI rotten news
« Reply #10 on: December 23, 2008, 05:41:07 pm »
Laz:

Not much of a Christmas present but then, you've probably been a bit naughty at times, I'm sure.  ;)  Seriously, we know that 'watch-and-wait' is usually a temporary position and so, the dreaded re-growth has occurred.  So, yeah, fecal matter happens. 

You're right about AN treatment advice being easy to dispense but a lot harder to receive when it's your AN.  Frankly, I consider all advice, including my own, to be worth about what someone pays for it. 

For now, I can only I send you my wishes for a successful GK treatment that resolves some of your long-standing post-op issues.  Regrowth is always a depressing state of affairs but you're going to take care of this thing once and for all - and show us how it's done.  Stay well and stay positive.

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.

jerseygirl

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Re: MRI rotten news
« Reply #11 on: December 23, 2008, 07:16:51 pm »
Hi, Laz,

Sorry to hear the news! Whatever you do, I wish you the best of luck. I am not sure what kind of version of GK machine you are looking at but I would think that the skill of the doctor creating the treatment plan is even more important. Please, ask how many ANs the doctor treated. I, for one, would not want an inexperienced oncologist just like I did not want an inexperienced surgeon.

              Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Tumbleweed

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Re: MRI rotten news
« Reply #12 on: December 24, 2008, 02:06:44 am »
So sorry to hear about your accelerated regrowth, Laz. I know kinda how you feel. When my AN grew about 50% in volume in 5-1/2 months and started pressing against my brainstem (while I was in W&W mode), I knew I had to seek treatment. But I was still shell-shocked.

That said, I can't imagine what it's like to go through surgery, only to have the thing grow back. Sheesh, my heart goes out to you.

FWIW, I think you've made a wise choice to seek GK instead of surgical resection.

Hang in there.

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

Larry

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Re: MRI rotten news
« Reply #13 on: December 24, 2008, 04:45:41 am »
Hey everyone,

Thx for your well wishes - they do help, they do perk me up. I couldn't imagine having to go through this thing alone. My family is terrific and very supportive buit they haven't been through the ringer themselves so their advice is listened to but not taken that seriously. Their support is vital but it's you guys that I get the encouragement from coz you know exactly what its like and the words have experience / meaning behind them.

Once again, thx for the support. It does give me fighting power.

Donnalyn, I might take you up on that chicken soup!!!! - couldn't hurt (lol)
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

LADavid

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Re: MRI rotten news
« Reply #14 on: December 24, 2008, 09:13:18 pm »
Hey Laz -- there's nothing I can add to what's been said.  But you have a good group of people standing behind you.
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments