Yr 8 update CK

[mwatto]

Just had my annual MRI and all going well - AN has shrunk yet again now at 10 mm so basically has reduced by more than half.  Hearing stable as yet no hearing aid. I still get nerve pain from time to time but not as bad- the specialist said " to be epected". Unsure if from shrinking or what- seems to come and go at night.

[DanFouratt]

Michelle,

Congrats!  Eight years and going strong.

Take Care,

Dan

[mwatto]

Thanks Dan - just thought I would post as positive! A friend of mine In Perth is also going well - we had CK at the same centre hers has shrunk also. 

[ppearl214]

Michele,

Congratulations!!!!!!!! 

I just celebrated my..... 20... yes, 20 years post-CK for my AN. it was 1cm at time of treatment.... over time, now reduced to a 5mm blob 

Just sending these good vibes to you for continued wellness! Time to celebrate!

Phyllis

[ppearl214]

Dan,

Woohoo! Congratulations! Continued wellness wishes to you!

Phyllis

Thanks Dan - just thought I would post as positive! A friend of mine In Perth is also going well - we had CK at the same centre hers has shrunk also.

[mwatto]

Thanks so much Phyllis!! I am so pleased to hear how well you are going. Very reassuring!

[DanFouratt]

Phyllis,

20 years is awesome!  Great to heat that.  I have 17.5 more to catch up with you and I will!

Thanks for sharing,
Dan

[ppearl214]

Hi Dan,

I have a sneaky feeling you will catch up!   At the 5 year mark, for me, it when we saw that it was a done deal. Now, we just continue to monitor.  Yep, 20 years this past April. It truly was an overwhelming day for me after thinking back all of those years ago.  Quite humbling.

Continued wellness wishes to all!

Phyllis

Phyllis,

20 years is awesome!  Great to heat that.  I have 17.5 more to catch up with you and I will!

Thanks for sharing,
Dan

[ppearl214]

Michele,

You've got this! For me... and for those I speak to on the Mentor list.... the waiting is the most challenging part of having radiation on an AN.  You really have to have mental strength to endure the wait... and, of course, have people like me and the rest of us in your corner.   So I'm cheering you on......... strength.... you've got it!

Phyllis

Thanks so much Phyllis!! I am so pleased to hear how well you are going. Very reassuring!

[mwatto]

How lovely of you Phyllis! Thank you! This forum has been wonderful for me emotionally- its also kind of sad that I had to join a USA org to find it as did not experience that in any way in Australia.

 I am always available also to help mentor others because I still remember vividly how terrified I was  - especially since for two years I had been told I was 'imagining' my vague symptoms and then I basically diagnosed myself from Google.

The way the MRI news was delivered to me was shocking too - a nurse called me at 8 am to say 'sorry to inform you, you have a brain tumor- please see the doctor at 5pm. No, I cant give you any more info.'  When I saw the doctor she said 'well the bad news is you were right after all- it is an AN. The good news is thats benign!'  Post treatment I did not have any real support either until I joined here. The resources also helped me a lot to recover and understand things.

[ppearl214]

Hello Michele,

Well, regardless of how you found us, you and here and one of us... and I say that in a good way!   Such a community here and these forums are kept as peer-to-peer so we can feel safe and happy sharing and caring with others in our shoes.  Glad you found us!

I'm not sure how the AN Community is in Australia (if my old brain remembers correctly, give or take a number of years ago....), we had some from Australia join us here. Try doing a "search" and see what crops us.

Keeping those wellness wishes coming your way!
Phyllis

How lovely of you Phyllis! Thank you! This forum has been wonderful for me emotionally- its also kind of sad that I had to join a USA org to find it as did not experience that in any way in Australia.

 I am always available also to help mentor others because I still remember vividly how terrified I was  - especially since for two years I had been told I was 'imagining' my vague symptoms and then I basically diagnosed myself from Google.

The way the MRI news was delivered to me was shocking too - a nurse called me at 8 am to say 'sorry to inform you, you have a brain tumor- please see the doctor at 5pm. No, I cant give you any more info.'  When I saw the doctor she said 'well the bad news is you were right after all- it is an AN. The good news is thats benign!'  Post treatment I did not have any real support either until I joined here. The resources also helped me a lot to recover and understand things.