Author Topic: Newbie UK Poster  (Read 3860 times)

Islandgirl

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Newbie UK Poster
« on: December 29, 2012, 06:08:12 pm »
Hi Guys

I’m a new UK poster who has been reading your ANA discussion forum once in a while and which has provided me with a wealth of information and views from fellow AN sufferers.  I don’t really have any questions just now but for the story I am female 61 and was diagnosed with an AN in May 2011 about 1cm as far as I could gather at the time and have been a wait and  watcher since then.  In the summer of 2012 however following my second MRI with gadolinium it was found my AN had grown a fair bit by about 5 millimetres although no one seemed to be certain about this as the neurosurgeon pointed out to me there is a lot of variation in how these things are measured.  Well I knew all this already from you good folks.  My main symptoms are loss of high frequency hearing in my right AN ear and the dreaded tinnitus which for me is the very worst thing and there are times when I have wondered if I can continue to endure it.  Well we just do endure it don’t we because we have to.  My hearing loss has remained pretty stable in the last twelve months and I am praying it will stay that way.  Anyway back in August this year I was referred by my neurosurgeon to the UK’s National Stereotactic Radiosurgery centre which is in Sheffield in the north of the country (I live on the South Coast about 250 miles away) and my GK treatment is scheduled in just over a weeks’s time on 8th January 2013.  I pretty much know what to expect thanks to the information posted here on this forum and of course I am nervous about the whole procedure from fitting of the frame to possible symptoms post treatment.  I’ll let you know how things go and hopefully come back to you with a positive experience despite the fact that in truth I’m a glass half empty person if you get my meaning.  Thanks for listening.  I’ll  try not to make it so long next time but just wanted to say it's comforting to have other people out there who know what you are going through and are prepared to support and offer advice.   Happy New Year to everyone. 

Just as an aside I have visited the US many many times and seen much of your beautiful scenery in California, Arizona, Colorado, Utah to name but a few.  Absolutely amazing. 

Jim Scott

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Re: Newbie UK Poster
« Reply #1 on: December 30, 2012, 02:05:26 pm »
Islandgirl ~

Welcome to the ANA discussion forums!  Although I'm pleased to learn that reading forum messages have been helpful to you, I'm delighted that you've decided to actively participate.  We have a number of posters residing in the U.K. (Alison comes to mind) and I'm sure they'll welcome you, also.  I wish you a very successful, drama-free Gamma Knife treatment on January 8th.  Your promised account of the experience will be both informative and appreciated.  Thanks for posting!

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.

Tumbleweed

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Re: Newbie UK Poster
« Reply #2 on: December 30, 2012, 11:14:40 pm »
Welcome to the forum, Islandgirl! GK is an excellent treatment choice. Try to rest a lot for the first couple weeks after treatment (if you get fatigued), and you'll do fine.

Best wishes,
TW
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

Alison

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Re: Newbie UK Poster
« Reply #3 on: December 31, 2012, 01:42:36 am »
Hi Islandgirl,

I'm Alison whom Jim mentioned. I have a thread on here called "treatment in the UK" which may be helpful to you. If you can't find it click on my posts and it'll be there for you to click on to get all the comments from fellow Uk people . It also is a sort of timeline of my experiences from diagnosis to treatment. I had SRS at Bristol  last Thursday the 27th Dec. Please PM me if you want to talk more as GK is similar to the linac SRS I had and has the dreaded headframe!

I can also link you to a UK support group and several people on there have been, or are awaiting GK at Sheffield.

Good luck and ask anything you like, I'll try to help.

Alisonx
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)

Islandgirl

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Re: Newbie UK Poster
« Reply #4 on: December 31, 2012, 05:37:49 am »
Thanks to all for your replies and Happy New Year. I'll keep you posted.

Alison

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Re: Newbie UK Poster
« Reply #5 on: January 02, 2013, 03:08:36 am »
Hi Islandgirl

just to let you know I've replied to your message. (Check spam in your email in case it doesn't appear, as that sometimes happens oddly!)

Alisonx
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)