Author Topic: MRI shows growth :(  (Read 3485 times)

skamper

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MRI shows growth :(
« on: December 04, 2012, 08:45:48 pm »
Had my follow up MRI from translab April 2010.  Looks like the small piece they left has grown.  Neurosurgeon is suggesting gammaknife.  Wasn't the news I was hoping for today.  Told me to call back tomorrow for more information after the over read by the radiologist and to set up an appointment with his radiation doctor.
At least they said I could be sedated for this procedure, I'm seen what this looks like and I don't think I could sit wide awake through something like that.  I have a hard enough time just doing the MRI ;)
Will keep everyone posted.  If anyone has had gammaknife and has any information that might help put me at ease, it would be greatly appreciated.
God Bless,
Susan
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013

Alison

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Re: MRI shows growth :(
« Reply #1 on: December 05, 2012, 08:37:42 am »
Hi Scamper,

Sorry to hear about your regrowth. I'm in the UK and awaiting my Linac SRS which uses the same headframe technique as Gammaknife.
I too was a bit concerned about a procedure that screws a frame to your head! But I researched as much as I could and many people on here who have had the frame mostly with gammaknife in the US, have reassured me that the frame isn't as bad as all that. They give you head numbing injections, which probably are no worse than dental injections, I hope, so I don't know if you would need sedation?

If you look in the radiotherapy/surgery posts loads of people have posted about GK. You could also click on the threads in my posts history where people kindly answered my worries about the headframe and pin sites scars etc. I think I've asked about everything I could think!

In the UK we don't get much choice but in the US, if you are US based, you may also be able to avoid the frame with cyberknife. Just a thought.

Alison

CPA and IAC AN 14.5mm x 10mm x 8mm diagnosed August 2012 treatment in UK SRS Linac with headframe  Dec 2012 MRI 4 month post April 2013 was 18mm x 13 x 7.8 (this April MRI was not measured until Jan 2014) MRI January 2014 was 17mm x 11.4 x 8.3 (one year post)

Jim Scott

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Re: MRI shows growth :(
« Reply #2 on: December 05, 2012, 02:25:58 pm »
Hi, Susan ~

I'm sorry to learn about your regrowth.  Post-surgery AN re-growth is relatively rare but radiation (GammaKnife) should solve the problem.  I underwent FSR and no headframe was required but a tight-fitting soft plastic mask was (think of a hockey goalies mask).  No pain, just boredom - but the radiation did the job of rendering the remaining AN unable to replicate, which effectively 'kills' it, although, like a dead leaf on a tree, it will remain in my skull but with no ill effects.    I'm sure the GK procedure will be quite tolerable. 

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.

cindyjarrett

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Re: MRI shows growth :(
« Reply #3 on: December 05, 2012, 06:14:13 pm »
Susan,

I had gammaknife on October 12, 2012, at the University of Virginia.  I was in and out in six hours.  Arrived that morning and was given IV.  When they attached the frame, I was given anesthesia.  I felt absolutely nothing and was only under for about 5 to 10 minutes.  Next you have an MRI with the frame attached.  The gammaknife doctor maps out your treatment while you wait.  I was then in the machine for 38 minutes with music playing.  They immediately took off the frame, which I was dreading, but it was a piece of cake.  I felt fine.  Some people get headaches, but I did not.  They then gave me something to eat and drink.  Since I tolerated that, they said I could leave.  Where the frame was attached healed in about a week.  I do not have any scars. 

Any other questions, I would be happy to help you.  Good luck!
Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

skamper

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Re: MRI shows growth :(
« Reply #4 on: December 05, 2012, 09:38:27 pm »
Thank you all for the info, it's always reassuring to hear from someone who's been through it first hand. 
Alison, I will try and look at your threads as well.
I try not to do too much research, I sometimes scare myself worse.
I will keep everyone posted, the doctor's office called me back today and suggests I have the gammaknife since the piece left has grown over the last two years.  I will make an appointment as soon as they call me back with the radiation doctor.
Susan
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013

skamper

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Re: MRI shows growth :(
« Reply #5 on: December 06, 2012, 08:36:58 pm »
To anyone out there who has had gamma knife.  What is the healing time?  I believe I'm only going to have one treatment.  Work was just curious how many days I would need to be off.  I am scheduled on the 17th for a consultation for gamma knife.  I just have no patience :)
Thanks,
Susan
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013

It is what it is

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Re: MRI shows growth :(
« Reply #6 on: December 07, 2012, 10:02:47 am »
I also had some tumor left on my facial nerve and am sad to hear about your regrowth.  My thoughts are with you.

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Twindy

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Re: MRI shows growth :(
« Reply #7 on: December 07, 2012, 02:50:36 pm »
I had the procedure on a Tues and went back to work easily on Friday.  Was tired on Tuesday afterwards, Weds a little tired, but not bad.  I babied myself because I felt I deserved it!  Probably could have worked on Thursday, but took that day too. 

skamper

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Re: MRI shows growth :(
« Reply #8 on: December 07, 2012, 10:36:26 pm »
Thanks Twindy, are you required to take so many days off?  How do you look after it because of the screws?  Someone said your head gets wrapped ;)
Susan
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013