General Category > AN Issues
What to expect "after" Cyberknife
Palace:
Hi Folks:
I was laying in bed just now and got up to post this since my facial and tongue pain seems to be getting even worse. Here is my question and don't fear, I don't expect you to answer it like a doctor. Will my tongue numbness and facial pain subside after CK? (again 22 mm AN) I want to know if this is going to be a permanent way of life for me, now. In other words, is the nerve damage done. Is this it? Is this what I have to live with or worse if the face drops? The pain is making my life so I can't concentrate on anything or enjoy much at all. Does this CK take the inside of the tumor out (turning it to a mush) and leaving the core which hopefully shinks it and stops pressing on the 8th C. nerve. Will it take those symptoms away once I have the TX? I'm told it take the three months for the cells to die. That will put me at the 1st of March, 2007. Is that how it is or what do I expect? Will I regain my face back the way it used to be? (once the CK is over and/or does the three months have to pass before that happens if it is able to? Does anyone know the answer? I have eye twitches. So, the loud noises in the ear will stay because, they will kill off the rest of my hearing in the right ear with the radiation and does the fullness stay too? PLEASE help with these if you can. These questions are weighing on me 24/7 and you can't get away from the pain. What helps for this type of AN pain? Can anyone follow all those questions and maybe have some answers. I'm desperate for my feedback on these questions as, they are so important to me. I know you have your own stresses and problems but, this one is first and formost for me now.
I think we should have some fun! Let's have a Halloween party and come in costume, then meet. :o
I'm fading out on my timed-release Ambien..........(about to escape the facial pain)...........Nite, Palace
ppearl214:
Hi Palace,
Let's see if I can help at all.
First, a terrific website to ask the Dr's that volunteer their time to answer CK questions to us patients is:
http://www.cyberknifesupport.org/forum/
They certainly helped me pre- and post-treatment.
2nd, having had my CK 6 mos ago (wow! :o time flies!), I can share that certain facial numbness that I have had (for me) have either remained or eased a bit. Necrosis (tumor DNA death) does take longer than 3 mos..... it can take up to 1-2 yrs. Yes, it is a slow process but.... with MRI's performed over that time period, indicators of necrosis will begin to show (I know Shoegirl had her CK last December, just had her MRI and signs of necrosis have commenced).
To me, this is all the tricky part of having any form of radio-surgery... the waiting. Now, for me, I sat back and thought about micro-surgery and radio-surgery. I knew the toughest part was the waiting game. I can tell you that, now 6 months post treatment, many of of pre-treatment symptoms are now either gone or have eased. The hardest part is knowing if you have the mental strength to endure the time frame it takes for necrosis to occur. I've discussed this concern with many other radio-surgery patients that I communicate on this site and we all rally together to help during the watiing game.
Your facial/tongue issue may ease, any other symptoms may as well... each individual is going to have individual results. I had ear fullness which has now alleviated (sometimes when weather fronts move in, I feel some of the fullness, but not nearly as bad as before). Loud noises, such as noisy restaurants and loud Harley motorcycle engines still bother me as the 8th cranial/vestibular nerve is still sensitive. No pain is felt by me post-treatment.
Please take a peek at the CK Patient support board link that I note above. So many of your questions are answered there under the "brain" section. Many answers, not just for CK patients, but for all radio-patients as well.
Hang in there and please please try to rest. All will be fine! :)
Phyl
Palace:
Phy & All,
That is a terrific website for CK patients. That is kind of you to post long and informative data with the link!
The Aspirin worked for me for a few days and yes, my gums and teeth feel just as numb as the rest of the right side of my face. I tried Motrin yesterday and it didn't really help. I don't want to take the really hard stuff as, it seems from what I'm learning.........all this isn't going to *just* go away now or much after TX, if at all. Hummmmm, what to take for the pain? I was in horrible pain for months on end with different surgeries I had but, I kept telling myself it would go away someday. That thought helped just a small amount. I have had a few surgeries with those pins that stick out of my foot for a couple of months. I've had all kind of torture connected with surgeries. I'm just wondering what to take on a daily basis right now for this extreme discomfort or whatever we wish to call it. The surgeon said he could give me something for pain but, I refused it as I figured it was the old Vicodin routine. I've been that route many a time and as little as possible. I suppose no OTC will help with the facial pain. If anyone has any experience on that one I would appreciate it.
OK, thanks for all the help.........you all have been great.....
Palace
Palace:
Hello:
You people seem to still have a "sense of humor" so, I'm going for *the cold one* as I have tried just about everything else. How can we treat the facial situation this way, if it works? I'm having a late lunch and trying a glass of wine to see if it helps at all. (you all might like to know it is 13.5% alcohol and yes, I'm of age) I hope this works. It is the weekend now........almost........so, what the heck!
Cheers,
Palace
Palace:
PS
The cold one helped by 50% (on the facial pain problem) but, the problem is.......it will wear off soon. Again, fishing and a cold one was recommended by this forum. Thank you for the idea even though it is temporary...............could be a nice habit. :-[
Palace
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