2 years post-GK (already)!

[mk]

Hi everyone,

so, I just hit the 2 year mark after GK, and I have just completed my MRI scan, consultations etc.

Well, although my first 18 months post-GK have been a breeze, I must say that these last 4 months have not been without problems. It all started with sudden and total hearing loss (which I realized when waking up on New Years day  ). Quite a way to start a new year. So, I rushed to fill the steroid prescription I always keep in hand. After 2 long weeks hearing started coming back. It has now pretty much stabilized, but with quite severe loss at some frequencies and some drop in word recognition. Still serviceable thankfully. After the steroid course was over I started having what I call "rolling symptoms", i.e. symptoms coming and going. Ear fullness, distortion (which was very bothersome when teaching), some twitching, increased numbness with some localized pains from time to time, "wonky" head, some slight imbalance (which I never had before). One following the other. Nothing too severe on its own, but worrisome nonetheless, since these symptoms were coming and going.

Anyway, as everyone can imagine, waiting for the MRI became quite stressful after all this. The good news is that the results showed no change.There is some darkening remaining at the centre, and other than that everything seems stable. So I asked the doctor what he thought about all these symptoms and he said that it may have been some delayed nerve irritation. Thankfully most of it has pretty subsided now.

Obviously my case shows how many months it can take for the side effects of radiation to show up. But it also shows that symptoms do not necessarily mean growth, which is everyone's bigger fear around here. Anyway, after these results I consider myself very lucky up to now, and I think of my symptoms as being minor irritants, which I don't really mind if I know that the AN is stable. (I liked it that the doctor used the word "was" when talking about the AN). I know that there are quite a few people who have just completed, or contemplating radiation, so I thought that this update might be useful.

Marianna

[Jim Scott]

Marianna ~

Thanks for your 2-year update.

The late-onset symptoms are definitely stress-inducing but I'm glad to learn that your AN is 'stable' and you seem to be recovering nicely.  I agree that reports from those some months or years post-radiation (or surgery) that are honest but positive are a great resource for the newly-diagnosed AN patient contemplating radiation or surgery and wondering what will life be like 'after'.  As we all know, while one patient's post-op/radiation experience is not a guarantee that another individual will have the exact same experience, they do offer a realistic peek at what may lie ahead.

Jim

[Tumbleweed]

Hi, Marianna:

I'm very happy to hear your latest MRI shows no increase in size. Sorry you've had a rough road the past several months, though. I hope you're at the end of your rough patch. Best wishes for smooth sailing from here.

Thanks for sharing that your increase in symptoms don't necessarily equate with regrowth or swelling in size. I remind myself of that on days when my tinnitus or disequilibrium flares up. Before my last MRI (in December), I had a period of mildly increased tinnitus and I worried that my MRI would show the tumor had swelled. In fact, it had shrunk! It's so important that we all realize there is not an iron-clad relationship between symptoms and tumor activity. Realizing this makes it easier for us to put aside the mental/emotional component of having a brain tumor so we can get on with our lives.

Sincerely,
TW

[sgerrard]

It is just ridiculous that it has been two years already, Marianna. It seems more like a few months ago.

Your hearing incident is not heartening, it fits the profile of hearing that will go over time, it seems to me. You can always hope, but I don't think I would count on it. The rest, though, sounds like typical late inflammation symptoms that should go away and stay away at some point.

I'm glad to hear that the AN is now in the past tense, and overall things are going well. I hope your hearing holds up at the serviceable level for a while, at least. And I hope you continue to hold up as well as you do. You have a great outlook on the whole experience, and it can only get better with time.

Steve

[opp2]

Hi Marianna,

There's a good news-bad news post...I'm sorry to hear of the late onset symptoms, but really pleased that your AN has remained stable. Let's hope for shrinkage over the next while. On the bright side, it's spring, it's finally raining, bring on the flowers and the babies...they always make me smile.



Baby rabbits eating my flowers...not so much...

[madison]

CONGRATULATIONS MARIANNA! i am sooo happy for you. as you know, i myself had gk about 2 yrs. ago and have been experiencing some of the same symptoms. i have my mri next month and can't help but be stressed over it. your post however, has made me feel a bit more hopeful, so thank you! today i thought i was going to have a dizzy spell but realized my sinuses were really hurting. i remembered people mentioning this can cause added pressure which doesn't help an already wonky head.
i just keep praying and doing my best to get through each day-some are better than others. i will keep you all updated on my outcome. again, great news! i am truly relieved and sharing in your celebration! takecare & ttys