My personal gamma knife experience 1-24-13

[robinb]

Interesting, thanks for posting. This is only my 2nd post GK MRI. My last radiologist report had me worried but then it turned out UPMC was satisfied w/it and not concerned. Will post again when I hear back.

I guess only us AN'ers use the word "necrosis".

[rupert]

I haven't read through all your posts to know if you look at your own disk or not.  I always look at mine and measure and do all that stuff.  They usually show darkening in the center at first then that kind of goes away. After time they seem to get whispier, if that's a word.  I also measure and can tell it's smaller so hearing that  from the surgeon also,  is always good.  My point to all this is: just don't get too rapt up in all the tech stuff.  If everything is fine they will tell you that. Relax and don't stress over size and "necrosis".  LOL.  I have a hunch you'll be just fine.   B.

[robinb]

So here's the response from Dr. Lunsford:

While I think that tumor imaging follow up shows minimal tumor volume increase, which we see in about 4-5% of patients, there is no evidence of continued activity or growth. There may be delayed shrinkage over time. Unless there are any new clinical symptoms, we could probably get a new MRI scan in a approximately two years, or sooner, if you feel like there are any new concerns. 

At this point I consider my case closed as I had already moved on prior to this based on how I feel. So unless things take a turn for the worse, I am done w/the discussion board for the next two years. I am grateful to everyone that helped me on the way.

I will always respond to PM's and to those that contact me through the WTT list.

-Robin

[ASG]

Good stuff. See you in two years when we're all driving flying cars.

[Bonnie B.]

Hi Robin,
great news.  Your latest MRI report is about the same as mine.  GOOD NEWS!!!  My doctor has me getting another MRI in 12 months so, in March, I am positive it will continue to be great news.

Bonnie

[mcrue]

Thank you for posting this thread. It has been very informative for those of us considering radiation.

As you know, it can be a difficult decision process choosing between radiation or microsurgery. Each has their own set of "pros and cons."

Glad to see everything is going so well. We're looking forward to hear about your 2-year successful update!

[DizzyMamaIL]

Thanks for the journal and thanks for putting the link to it in your signature. Very helpful!

[robinb]

Well I have been off the forum for a little over two years, although I continue to connect w/people that contact me through private messages or the WTT list. Yes no news is good news. Life is great, working usual 60+ hours a week, however we now take a 2-3 week vacation. Last three cruises and just booked another for 2017.

I had my 2 year MRI yesterday and sent the disk off to Dr. Lunsford. Will report back when I hear from him. Still have constant tinnitus and no usable hearing on the AN side. Used to it now.

Still carrying around excess weight, started new regimen with a personal trainer/coach and dropped 7 lbs so far.

When I hear from Dr. L I will report back. Best to all for a wonderful 2017!

[rupert]

Cruise on my fellow UPMC AN alum.   

[cathyroe]

Thanks for the update, Robin. Please let us all know what Dr. Lusford reports back. I know it will be good news!

[robinb]

I did get the radiologist report; says tumor unchanged. Will see what Dr. L. says.

[robinb]

Email from Lana today saying "Dr. L evaluated my images....everything looks good, you will get his official letter soon."

Those of you that had treatment with Dr. Lunsford know that his letters dont say much more, other than when to get my next MRI. If I hear anything different, will update.

So good news, but I'm still wishing I heard there were signs of necrosis! I just realized over 4 years since my diagnosis and almost 4 years since GK.

Cathyroe- hope your spasms easing up; call or email me any time. Same for anyone else that reaches out through this forum or the WTT list; I will always respond asap.

Be well everyone!

-Robin

[cathyroe]

Good news Robin!
My spasms have gotten much worse in the past week. Like 10 a day! I started the gabapentin, so we shall see. The weird thing is, I was only having like 2 or 3 a day until I started the gabapentin, and now they seem to be just all day long. If I eat, drink, exercise, talk.... wham! Spasm!
How long did it take for your drugs to kick in when you took it?

[robinb]

Good news Robin!
My spasms have gotten much worse in the past week. Like 10 a day! I started the gabapentin, so we shall see. The weird thing is, I was only having like 2 or 3 a day until I started the gabapentin, and now they seem to be just all day long. If I eat, drink, exercise, talk.... wham! Spasm!
How long did it take for your drugs to kick in when you took it?

Cathy-
I kept a detailed journal of the spasms, I had a weekly review with Lana during this prioed until they finally stopped in Agu/Sept. They definitely started to get weaker and less frequent as I ramped up the Gabapentin. What day and how many mg are you up to?

I will PM my journal to you; TMI for this thread.

-Robin

[cathyroe]

Thanks Robin,
I wish Lana had asked me to check in with her at all! She didn't offer me weekly telephone meetings, or any further communication. Maybe I'll just email it to her anyway.
Thanks so much for letting me see your journal. At least I will have something to compare to.
I started the gabapentin 6 days ago and am now up to 100. Mg. 3  times daily.
I am trying to make an appointment with a neurologist. So far, the soonest I can see one locally is 3 months from now!