One year CK results.

[Tisha]

I haven't been in awhile, but I feel the need (for those out there researching) to see CK results in from forum participants.

Pre-CK tumor:  1.6 x 1.1 x .9

6 month MRI:  1.8 x 1.3 x 1.1   darkening in the middle

1 year MRI:  1.8 x 1.3 x 1.0  darkening in the middle

Basically stable.  I'm hoping to see more shrinkage later (the .1 in the 3rd dimension is too small to count, I think).

Hearing is stable from 6 months, even a little better in pure tone high frequencies but nothing I can really tell.  Equilibrium is even better than it has been for 3 years...that is a real plus.  So far so good.

[sgerrard]

Good news, Tisha. Looks good, sounds good. Stable is all you need.

Have a great year #2. 

Steve

[ppearl214]

tisha, tisha, tisha!

Great news! We LOVE the word "stable"... the measurements are most certainly within the margin of error (+/-2mm) and the sucka' is stable! Well done!

continued wellness wishes your way! You are rawking it!

Phyl

[leapyrtwins]

Great to hear from you Tisha.

Glad the news is good!   

Jan

[Jim Scott]

Tisha ~

Thanks for sharing your 12-month MRI report with us.  'Stable' is always the goal of radiation treatment and you've achieved that so, congratulations!   I'm also pleased to learn that your equilibrium has improved and that your hearing is relatively stable.  You're doing quite well - and I'm sure that will continue.   

Jim

[Tisha]

Thanks everyone for your good wishes!  I don't think about my AN very much anymore, because it's my other ear that bothers me.  I have to wear a hearing aid in that ear and it's slowly getting worse.  Bought a new hearing aid, can't get it to where I like it, going back and forth to the audiologist, taking it in and out constantly to test my hearing with the TV...ugh....

I do have a question.  Why  is it necessary to have a 18 month MRI?  Why not yearly?  The 18 month MRI will not be covered by insurance until I meet my deductible.  I don't have the money in my FSA as that $5K went to kid's braces and a new hearing aid.  Since the  MRI's are so expensive, I'm considering putting it off until next January unless there is a very very good reason why I shouldn't.   Tumor is stable, hearing stable, balance good.   Of course, I would like to know the size of it, for my own curiosity, but I could wait 6 months for $2K.

[ppearl214]

I do have a question.  Why  is it necessary to have a 18 month MRI?  Why not yearly?  The 18 month MRI will not be covered by insurance until I meet my deductible.  I don't have the money in my FSA as that $5K went to kid's braces and a new hearing aid.  Since the  MRI's are so expensive, I'm considering putting it off until next January unless there is a very very good reason why I shouldn't.   Tumor is stable, hearing stable, balance good.   Of course, I would like to know the size of it, for my own curiosity, but I could wait 6 months for $2K.

Hey Tisha

I will try to share how it has been explained to me (others, please chime in if you have been told different).

It takes approx 2-3 yrs (give or take) for the AN, post-radio, to show that things are on final track.  As you may have read here.... many (including myself) report things that have cropped up further down the road (past 1-1/2 yrs mark.... mine was temp and fixable).  As you are still within the timeframe of "things that could crop up", the teams generally like to keep monitoring and will advise when they feel comfortable for one's situation to extend between MRI's.  I was told after my 2-1/2 yr milestone that I would then go yearly for head MRI's.  For me, I was not told that sooner.

You know what your personal, financial situation is. I'm sure that MRI centers are also willing to work "payment plans" with patients if necessary.  But, you know what is best for your wallet. My FSA gets spent in a "New England Minute" (ie pretty darn quick) and can well understand if your's goes "poof" easily as well.

I would think the team would make the recommendation for the 18 mos MRI for their reasons to stay on top of the AN situation.  I, personally learned, that even though mine looked stable after the first year.... I did have issues crop up down the road and MRI's were able to show the team exactly what was/was not occuring.  I think its a safety net call for all those involved... for your team to track and... to help give you peace of mind.

Not sure if this helped.
Phyl

[Tisha]

Thanks Phyl,

I guess I never realized things could go wrong.  I just thought it actually would continue to get bigger (which since it does that so slowly, waiting an extra 6 month wouldn't make a difference), or shrink.  Never realized other issues could pop up!

Tisha

[sunfish]

Hey, Phyl, what "issues" cropped up 18 months afterward?  Of course, I'm curious since I'll be having my treatments next week.  I know you can get swelling, hearing loss, etc.

[ppearl214]

Hey, Phyl, what "issues" cropped up 18 months afterward?  Of course, I'm curious since I'll be having my treatments next week.  I know you can get swelling, hearing loss, etc.

Sorry I missed this sunfish... my bad

I did have a short bout with enhanced hearing loss and tinnitus (more than my "usual").  Short course of anti-inflammatories (via CK dr's orders) helped.  Was back to my ole' self within a week.

Hope that helps!
Phyl

[davjack]

That is such great news! Your post is going into my little Journal of Happy Thoughts 
DJ

[LilShell]

What a shame that you have to pay for your MRIs over there.  I've not paid for a single one here in Australia.  At the public hospital the government fixes it all up!  

[sunfish]

Tisha, how long have you been wearing a hearing aid in your "good" ear?  I just got my aid for my AN ear last October.  It took several, several trips to audiologist.  I don't think we ever really got it "right," but I've been amazed over the past month at how seamlessly my aid fits into my life - I never notice it, never change to all those programs I thought I'd use, etc.  So I originally thought I would get it right by going to audiologist, but I think it turned out to be more of a "getting used to" process.

FYI - I had CK about two weeks ago, and I've had some increased tinnitus which appears to be settling down, but otherwise, I'm pretty much back to normal for now.

[Tisha]

Hi Sunfish,

I've been wearing a digital hearing aid in my non-AN ear for 2 years now.  I've been losing hearing in the ear very very slowly for 11 years before my ENT practically shoved one in there for me!  LOL!  It was wonderful, I couldn't believe how much better I was..not having to say "what", all the time..  Of course, that was before I started having issues with the AN and my hearing in that ear was perfect..not distortion, everything clear, not tinnius...basically perfect hearing.

Now, since my AN ear has all the AN ear symptoms (distortion, noisy places, tinnitus), my hearing aid ear doesn't seem to "work" as well...but I know that's just due to all the issues with both ears now.

I really feel deaf without it, unless I'm outside or it's quiet inside.  I just get tired of wearing it by 8:00 at night.