ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: mk on October 30, 2008, 08:15:51 am
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Hello everyone,
I know that there are quite a few who have completed GK or CK recently and are experiencing some issues and anxieties. So I thought that a positive story might help.
As shown in my signature I had GK in April 2008. My case was tricky because of the size, which is very bordeline for radiation. I won't go into the messy consultation/decision process, which I have mentioned in previous posts. Because of the size, the GK team ended up using a slightly lower radiation dose (11 Gy instead of the usual 12-13 Gy).
I haven't really experienced any major issues post-GK. Some minor "twitches" and other strange sensations were taken care of with ibuprophen. I didn't lose a day at work, and have been very busy taking care of the kids at home. At some point due to the absence of any symptoms I was even wondering if the procedure had worked at all.
The only major event was a sudden hearing loss, accompanied with fullness and tinnitus about a month ago, which resolved with a course of steroids.
My 6 month MRI showed no change in size, with darkening at the centre, consistent with "partial necrosis" according to the radiologist report. My radiation oncologist even mentioned that the distortion overall seemed to be a bit better. Really, this was the best result that I could have expected under the circumstances :).
I also wanted to say that this whole experience has changed entirely the way I look at things. I think that most people here can relate to this. Having been through the stress/anxiety/second guessing/waiting for the other shoe to drop stages, I suddenly realized how grateful I should be that 1. we have a condition that can be treated, 2. there are many good options and choices, 3. we can continue on with our lives, even if altered a bit. Now I don't let the little frustrations and anxieties at work etc. get to me, because I know that in the grand scheme of things they are inconsequential.
A new comer on the forum may be surprised by how many people have "life is good" in their signatures, even if they are experiencing various issues. After going through all this AN experience, we all know how important and precious it is that we can continue on with our lives.
For many of us it is just the beginning of the journey post-treatment, but keep focused on the potential for a good outcome and have a positive attitude as much as possible.
Marianna
PS. Last but not least, I would like to thank my good friend Trish, for her support through all this. She was there when I was freaking out pre and post-treatment, and I honestly don't know how I would have gone through all this without our daily e-mail exchanges and her constant encouragement.
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Thank you for the update. You have a great outlook that will be an inspiration to anyone reading your post. I am so glad you are doing well.
Grace
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Hi Marianna- That's great news! I was happy to see your post. I'm going through a bit of a dark time right now and seeing it definitely helped. Did you experience actual twitching on the AN side? I posted yesterday about that and no one has replied, so I didn't know if you just meant strange sensations or what.... I am not doing better with it today, either. It actually woke me up very early this morning so I am not a happy camper that the GK angered my facial nerve. But - back to you! You are doing great and it's nice to know there's light at the end of the long, dark, lonely tunnel. ~~Joey
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Joey,
Yes, I did see your posts and I am sorry that you are feeling a bit down these days. I am glad that my post helped a bit. Your facial nerve probably took a slight hit from the radiation and it is responding now. I have felt several "strange" sensations now and then. The most recent ones, these last few days have to do with feeling some "tightness" in the face, and my sensation of numbness (which I also had pre-treatment) is kind of increased. I find that all these symptoms tend to be worse when I get tired. Ibuprophen really helps me, have you tried it? Getting some rest helps too.
What I keep telling myself is that these symptoms are minor compared to what other fellow ANers experience with facial paralysis etc. Hang in there, and I am sure your symptoms will resolve soon.
Take care,
Marianna
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WOW Marianna! What a beautiful attitude. While I have had a few bumps, I am still glad I chose what I did and am confident things will only get better.
Joey, I too had some twitches but I feel that is probably just the facial nerve saying - "hey - whatcha doing in my neighborhood?" I told my doctor I had some and he wasn't worried. It has gotten better now.
Take care,
Mary 8)
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Thanks for the detailed update, Marianna. It is especially interesting to me because you were at the borderline on size, and seeing a larger AN handle radiation so well is a good thing to see. You are right, we need to let go of the stress over all the pesky symptoms, and realize that we are going to be okay, even if things are a little different for us now.
Steve
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Hi Marianna!
I almost never look in this section so i almost missed your great post (similar to the news you shared with me on email) and the warm and wonderful thank you to me. That made my evening! I am so glad that i could help you, even though i think we were leaning on each other pretty equally (so a big THANKS to YOU!!!!!!!!!!!!).
ALL:
Marianna and i first met on the CK forum and quickly moved off to personal email when we connected so well...we are both in Ontario Canada, both have young families, are the same age, had similar sized and located tumors. We were both trying to figure out what to do when we met, and in the end we both opted for different treatments.
So now we have this great friendship, born out of something that no one wants to go through alone. I even managed a call to MK from my hospital room, one of the few calls i made during my 7 day stay. And here we both are on the "other side" hoping to help others out there, get advice and move on with our lives.
Thanks to all of the friends i have made here.
Trish
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Marianna -
thanks for the update. It's good to hear that things are going well for you.
Congratulations on the partial necrosis!
You are correct - life IS good ;D
Jan
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Marianna,
thank you SO very much for sharing this with everyone. Yes, many do note "life is good" and thrilled to hear you are one of them/us. Continued wellness wishes to you..... and congrats on the news! Best holiday gift you can get, eh? :)
Thanks for ALL you do!
Phyl