I'm back, unfortunately.....

[Tumbleweed]

 I posted on CK forum and Dr. Medbery says my scan appears pretty normal. Still a bit anxious though as I've had sporadic flare-up of some symptoms in the past few months.

JB, it might help you to know that symptoms flaring up don't necessarily mean anything relating to tumor size or the treatment's efficacy. I've had flare-ups happen twice in the weeks leading up to my followup MRIs, and in both cases my tumor actually shrunk in size! Once the tumor damages your cranial nerves, you are susceptible to flare-ups regardless of what the tumor is doing. It's like having any other weak part of your body; when subject to stress, it's the first thing that's going to start barking.

So please put your mind at ease. Your MRI, according to Dr. Medbery, shows you're doing okay.

Best wishes,
TW

[jb]

Just to update, I saw my doc today and the final verdict is that the tumor is a bit larger. It's still possible that it's just changing shape ("evolving", as doc says) as there appears to be less tumor in the IAC now (really surprised at this with all the tinnitus and fullness I've had lately). My doc doesn't want to jump to any conclusions on regrowth vs. no regrowth, so I'll need to go back in 6 months for yet another MRI. Feel like I've spent 4 yrs in a circle to arrive back at W&W stage. 

TW: I appreciate your point that size change either way can tweak the nerve. I'm hopeful that the change they saw in the IAC component might be causing a temporary symptom flare.

Also, I PM'ed Ellen, so maybe she'll let us know how she's been doing.

Thanks,
JB

[Tumbleweed]

TW: I appreciate your point that size change either way can tweak the nerve. I'm hopeful that the change they saw in the IAC component might be causing a temporary symptom flare.

To clarify, that's not what I meant to convey. What I tried to say is that your tumor doesn't have to grow in size for your cranial nerves to act up. They are weakened and will act up every now and then when your body overall isn't 100%. To make an analogy: If in the past you had a very bad respiratory infection that scarred your bronchials, you would be more susceptible to bronchial problems/symptoms going forward. It's a similar thing with cranial nerves: once damaged (by an AN), they are bound to act up in the future -- even if your tumor isn't growing larger -- because they are in a weakened state.

I hope that makes sense. Bottom line: flare-ups are not necessarily a cause for alarm. It doesn't say anything about your tumor size.

Best wishes,
TW