D-Day for ALF - Gamma Knife - January 22, 2013

[robinb]

No news is good news.

Interesting to me that you have follow ups; was your procedure near where you live? I dont have anything till I do my six month MRI and send it to Pittsburgh.

[arizonajack]

No news is good news.

Interesting to me that you have follow ups; was your procedure near where you live? I dont have anything till I do my six month MRI and send it to Pittsburgh.

I live in Phoenix. My Gamma Knife was done at St Joseph's Hospital by a team from Barrow Neurological Institute's Acoustic Neuroma Center. Very convenient. My friend dropped me off in the morning and picked me up in the afternoon.

[Karenkay]

This thread is encouraging!!  I was diagnosed in January (on my birthday) with a 1cm tumor.  I've decided to go with Gamma Knife rather than surgery.  I also have MS and the recovery from surgery scares me.   March 28 is procedure day. 

Arizona Jack ... I appreciated your play-by-play narrative.  Exactly the kind of info I needed to read!!   


Karen

[Karenkay]

I should add that I'm having the procedure done at Mayo ...   Dr. Link

[arizonajack]

This thread is encouraging!!  I was diagnosed in January (on my birthday) with a 1cm tumor.  I've decided to go with Gamma Knife rather than surgery.  I also have MS and the recovery from surgery scares me.   March 28 is procedure day. 

Arizona Jack ... I appreciated your play-by-play narrative.  Exactly the kind of info I needed to read!!   


Karen

Hi Karen. I figured out from an earlier post of yours that you are about 52 now.

What are your AN symptoms (hearing, balance, etc)?

And what are all three of your AN dimensions?

If you don't mind saying.

[arizonajack]

Had my follow up with the neuro surgeon last week. Well, not even with the neuro surgeon, saw his nurse practitioner. Checked my vitals, balance, asked me about any issues (none) and told me everything I already knew about the next couple of years of periodic MRIs. Then I left.

My next report will be around July when I have my next MRI.

[Karenkay]

Hi AZ Jack,

I'm just learning all these new terms ...  like I mentioned earlier, I have MS and all symptoms were deferred to that.  Loss of balance, hearing loss, pressure...   and I've always had noise in my ears.  The tinnitus got louder and more deafening.   

Dr wanted new MRI to progress check my MS.  Hey guess what!  MS is stable, no new lesions.  Hey guess what!  You have a tumor.   Great, another new road to travel down.   

The measurements of the AN.  13mm x 10 mm x 12mm.

Good new with your follow up appt. I am praying I comethrough the procedure as well as you.

[arizonajack]

Hi AZ Jack,

I'm just learning all these new terms ...  like I mentioned earlier, I have MS and all symptoms were deferred to that.  Loss of balance, hearing loss, pressure...   and I've always had noise in my ears.  The tinnitus got louder and more deafening.   

Dr wanted new MRI to progress check my MS.  Hey guess what!  MS is stable, no new lesions.  Hey guess what!  You have a tumor.   Great, another new road to travel down.   

The measurements of the AN.  13mm x 10 mm x 12mm.

Good new with your follow up appt. I am praying I comethrough the procedure as well as you.

Yours is more spherical than mine but still small enough to be a good candidate for Gamma Knife.

I think it's a good idea to have the Gamma Knife while the tumor is still small. I was on watch and wait for 6 months and it grew 20%. Wasn't going to give it any more space.

The consensus is, however, that some things don't change whether you have surgery or radiation.

Those were some of the factors that I weighed when I chose Gamma Knife.

Best wishes for your GK Day. Your progress will be helpful to others that read here.

[dtorres135]

I hope to have the same journey as Arizona Jack.  GK scheduled for june 25th with NYU team.

[arizonajack]

Two months since GK.

Gained 10 lbs.

Don't know if that has anything to do with anything.

Otherwise, nothing new to report.

[PaulW]

I did the same.
Too much sitting on the couch feeling tired, and eating food to stop your stomach feeling queezy was the cause for me.
Happy to say i have lost about 35lb since 3 months post CK, BMI 27..
Cant say I have done anything proactive about it.
Feeling better did the trick

[arizonajack]

I went on a diet March 21 and lost 12 lbs as of today.

On a slightly negative note, tinnitus returned to my SSD side yesterday after being gone since October.

I hear an intermittent sound at odd intervals.

Play the Plink 20 sound at the following site. Turn your volume down until the sound is barely perceptible and you'll have an idea of what my tinnitus sounds like.

http://www.soundsnap.com/node/10048

Easily ignored but still a bit disappointing that it came back.

[jsanders1379]

Congrats on the weight loss- sorry about the tinnitus-maybe it will go away if its due to the necrosing tumor swelling...

[arizonajack]

Congrats on the weight loss- sorry about the tinnitus-maybe it will go away if its due to the necrosing tumor swelling...

Thanks.

Hope so.

[arizonajack]

Something really strange is happening.

No, not super powers, I've pretty much given up on that.

Monday I reported the recurrence of tinnitus in my AN ear and described the intermittent "plinks" that I was hearing.

By last night they were occurring more rapidly, like Morse Code.

Today, I don't hear them at all.

I'm sitting in a very quiet room on the computer.

Even more strange, I'm not hearing the tire hissing in my left ear, something I've had for about 9 years.

At least I think I'm not hearing it. There's something but it's a lot lower volume than what I'm used to.

Oh well, I guess I shouldn't look a gift horse in the mouth.

I'll update this thread if anything changes.