My personal gamma knife experience 1-24-13

[robinb]

Yesterday was my one year anniversary from becoming a postie toastie and having GK.

I knew it was coming, but I was so busy I completely forgot about it! I think that's really good.

Not one spasm since Sept. 15th and the previous one was Aug 15th; so 1 spasm in over 5 months. No headaches, no twitching,no numbness. I now consider this whole thing behind me.

I had a follow up call w/Dr. Lunsford's office. They suggested I completely stop the Gabapentin,, which I had except before a flight. I had two trips last week and only took one. To my surprise they also would not order an MRI. They said since everything normal for me and only improvement I should wait till August, one year since my last MRI. He says the contrast/dye/whatever its called is too harmful to kidneys long term.

So I am OK w/this.

Life is back to normal pre AN and pre GK for me. (My hearing was getting worse prior to diagnosis, so this is my old normal)

For all of you newbies deciding on treatment, PM me any time, I will respond quickly.

Be well everyone.

-Robin

[robinb]

Due to a broken crown I have had lots of dental work last few weeks; Novocaine, xray, lots of drilling. Of course on upper AN side.

Fortunately, no spasms or other ill effects. I took the Gabapentin night before and morning of. Other than that, off the med entirely now for a month!

[mesafinn]

Robin:  HURRAY!   Besides the need to go through all that gruesome dental work, I'm glad the spasms seem to be behind you.   Here's hoping!!!     P.

[Echo]

Hi Robin,

Not fun having all that dental work done and what luck that it would be on your AN side.
Glad to hear that it didn't trigger any facial spasms and they seem to finally be gone.

Keeping my fingers crossed they don't return!
Cathie

[joanner]

Hi Robin,

I have an AN & I'm on the fence about whether to have surgery or radiation.  And I don't even know what kind of radiation.
I was just told 6 days ago that I need to do something but at this time I'm exploring.  You said you did a lot of research & I would so greatly appreciate knowing what you found out.  Anything you can tell me would be helpful.

Thanks,
Joanne

[robinb]

Hi Joanne-

Please send me a PM or call/email me directly any time. As I said, making the decision will be the hardest part!

[robinb]

Hi all-

I have nothing new to report; that's a very good thing!

Life is normal, although I may decide to try a hearing aid at some point after reading other posts.

[cagneyd]

Hello Robin.

I read your story before I had my Gamma Knife and I want to thank you. Your story made me less anxious. Thanks.

[robinb]

Hi Dan-

Glad you found it helpful.

Hope you're doing well.

[robinb]

I havent posted in a while, but nothing to report. All is good. No news is good news!

Going on a European river cruise in September, will schedule next MRI after we return.

[robinb]

Back from a great vacation; wonderful time, no issues with anything over the long flights. Yesterday was 1 year since I had a spasm. Going to schedule next MRI for some time in October and will report back once Dr. Lunsford has reviewed.

[robinb]

I had my MRI last week; radiologist report said no change in size, didnt mention the magic "necrosis" word. Said tumor appears to be stable.

Sent the report and disc to Dr. Lunsford, will see what his review says.

[ASG]

Woohoo! Congrats on the good news! For whatever its worth, none of my MRI reports have ever mentioned "necrosis" or any related synonym. Its always just a blunt string of technical phrasing meant for other providers. Dr. Lunsford has also never used the phrase "necrosis" with me, but instead uses more conservative language like "no evidence of growth" or "seeing changes in appearance". The only reason I know my tumor is looking "blacker" is by seeing the MRI images themselves first hand. Lunsford always keeps it pretty dry and even keel as you might expect.

Adam

[arizonajack]

My MRI reports don't mention necrosis either. Just describes the "enhancing extra-axial mass" and gives the dimensions.

[rupert]

My reports from the radiologist are always a little different from the surgeons.  I think the radiologist know the surgeon is going to look anyway so they don't put much into it. Just my opinion.  Here's a summary on 4 years between the radiologist and UPMC.  The same but, different.

Initial MRI.    Radiologist:  1 1/2 page report with size and other things.
                    UPMC:  Same as radiologist.

1 year post GK.  Radiologist:  1 page report,  same size and stable.
                         UPMC:   Slightly smaller with darkening in center, brain stem looks good.

2 year post GK.  Radiologist:   3/4 page report,  same size and stable.
                        UPMC:  Definite shrinkage and brain stem looks very good.

3 year post GK.  Radiologist:  1/2 page report,  same size and stable.
                        UPMC:   2mm smaller , coming off brain stem.

4 year post GK   Radiologist:   1/4 page report,  same size and stable.
                        UPMC:   Continued shrinkage , 3mm smaller continues to come off brain stem.