9 months post ck

[sher]

Hi everyone,
I thought I would give you and update. I am 9 months post ck and was doing fantastically until about a week ago, the dizziness, headaches and fullness returned with a vengence. I have not had a phone call or follow up at all since Jan, when I made the call and they did an MRI. So I guess it is time for another MRI to see what this booger is doing. I am hoping that it is swelling and not growth. I guess I could just wait until the 1 year mark which would be the end of sept. Not sure what to do.. any suggestions from my friends here? How wonderful it is to be able to check in periodically and see how everyone is doing.
Sher

[ppearl214]

Sher!    So glad to see you and thanks for sharing this with us (also.. moved to "PostTreatment as you are certainly a "toastie postie"   )

Ya know... sounds about right for the timeframe you are in and the chance of potential swelling this far out post-CK.    I know my docs have noted to me that sometimes, the outside of the AN may not show the swelling potentially going on and it may actually be occuring inside the AN, but maybe a short term course of anti-inflammatories (ie: Ibuprofen, steroids, etc) may be of help, if they feel its necessary. I was just about the same timeframe as you when I had the sudden temp onset and here's hoping your situation resolves soon.

I'm so glad you checked in.... pls don't be such a stranger and pls keep us updated on how you decide to proceed..... btw, if so, will you be following up with the CK team?  In speaking with many, including Medbery and Spunberg, it is usually recommended you follow up with the CK team (maybe the neuro onc on your team).  Just a thought...

Hang in there... you KNOW I'm cheering you on!
Phyl

[wendysig]

Sher,

I would say  that if you are having symptoms, you should let one of your docs know.  It could very well be uyour bran booger swelling that's causing the problems, but better to find out now and put your mind at ease instead of stressing out until September.  I hope everything checks out okay.

Best wishes,
Wendy

[leapyrtwins]

Sher -

no suggestions from me (I had surgery; don't know a lot about CK) - just wanted to say hi and thanks for the update.  It's good to hear from you.

I, too, hope your symptoms are being caused by swelling.

Keeping my fingers crossed,

Jan

[goinbatty]

Just wanted to share my experience with CK.  I had some issues crop up around 6-7 months.  Nothing major, just noticable and irritating.  Ibuprofen helped.  Seems like I took it for about 3-4 days.  I have to watch it with Ibuprofen because it tends to irritate my stomach.  Since that time, occasionally I'll get stinging type feeling down in there.  A few Ibuprofen and it clears up. 
Hope your symptoms resolve soon.
Sandra