Positive CyberKnife Stories Only

[MaryBKAriz]

Nancy,

I don't know if it is my imagination, but I feel like I am hearing better after CK. I a sure it is no worse. I also think Annette is doing as well as she was before CK with her hearing.

Take care,

Mary

[Nancy Drew]

Hi,

I am definitely getting the positive cyberknife stories here that I asked for.  All of these are good to hear.  I am thinking I sould turn it around as well and ask for Negative Cyberknife stories only.  The same with gamma knife.  Maybe I'll do that just now and see what I come up with.  I need to hear the good and the bad, the pros and the cons, etc.  Thanks for sharing.

Nancy

[fbarbera]

I think my CK story is quite positive, but it is probably too early to say that definitively, since I am not quite 1 year out of treatment.

I have a 2.5 cm tumor, which is on the larger side for radiation.  My hearing has been preserved.  I have dealt with intermittent post-treatment symptoms, such as balance issues, which I describe in more detail in my website below (see the post-treatment section).  I am sure the symptoms relate to post-treatment swelling and will recede with time. 

As to the GK/CK debate, I agree with Steve that they are essentially the same in terms of tumor control, but CK is less likely to damage the surrounding nerves and therefore preserve your hearing.  If you have some hearing you want to preserve, CK is probably worth looking in O

n the insurance front, I was in an HMO where GK was available in "network" but CK was not.  During the appeals process (which Stanford handled for me), I submitted a personal letter arguing that the difference in hearing preservation results made CK "medically necessary" in my case.  The appeal was successful and the HMO was forced to cover the treatment.

Good luck and be well,

Francesco
 

 

[Nancy Drew]

Francesco,

I have read your website many times and have been referred to it by so many on this board.  You are truly amazing, and I admire the fact that you did your research and in the end felt good about the decision you made to have CK.  You are an inspiration to us all.  I know that you have been through the wringer, but nevertheless you have been hanging in there with the utmost strength.  Hopefully I am on my way to getting where I need to be as far as what I want to do with my AN.  Best wishes as you continue your journey. 

Nancy

[candtlaw]

Nancy

Had ck and have never regreted it. I am completly "back to normal" if anyone ever is! lol........ I actially had a apt today and I am alittle over 1 year out and AN is showing some shrinkage and no signs of life, or as the dr says, the cells arent reproducing. Going back in 1 year   GL to you....... btw, I was terribly afraid of the headframe in a gamma knife video I found on the web. Convinced myself it was my form of treatment until the team suggested ck which had only been in my city for about a year. I felt blessed to have it and it was painless........

[Nancy Drew]

Hi Cyndi,

It is always good to hear success stories.  I hope all continues to go well.  Did you have any symptoms before CK?  I am trying to sort out if I should have treatment now or wait since I don't really have any major symptoms, and my AN is still small and only just now growing (and only slightly).  I get different stories from different doctors, and it is all quite confusing.  I have another consult set up in early Aug., and then that is it for me.  Any more docs and I am going to scream!  I think I am probably a good canidate to continue to W & W, but the psychological part associated with the AN has me bent out of shape.  I keep flip flopping, and I hope to come to some conclusion soon so I can get on with life.  It is not good to be obsessed all of the time.  Thanks for your reply.

Nancy

[ppearl214]

cyndi, LOVE the sig line... you got my mantra... for me... "day by day, inch by inch...."  Continued wellness!

xo
Phyl

[Tumbleweed]

I've been waiting several weeks to see if this is just my imagination or a very transient affair, but I can now confidently report that my tinnitus is generally lower in volume and its onset less frequent since I've been treated with CK. What a surprise for me this is, because I haven't heard anyone else report this benefit.

For the last 6 months before treatment, my tinnitus was getting louder, was noticeable much more frequently and was changing a bit -- not only did I hear moderately loud ringing but also more and more often I would alternately hear my pulse whooshing in my affected ear.

Within a few days of being treated, I realized I hadn't been noticing my tinnitus that often. At first, I thought it must be just a random and short-lived decrease. But now 6 weeks post-CK, it is apparently becoming a trend for me. I often don't notice the ringing because it is so low in volume (often barely audible), and I rarely (maybe once every week or two) hear my pulse in my ear anymore. I still occasionally have episodes of increased tinnitus, but they happen less frequently.

I sure hope this trend continues. I know too much to dare to hope that CK will completely or even slightly but impermanently reverse any pre-existing symptoms, but this decrease in tinnitus -- for the time being, at least -- seems to be defying the odds. I'm almost afraid to post this in case it jinxes me and I return to my old, ringin' self! 

Tumbleweed

[Nancy Drew]

Tumbleweed,

Keeping my fingers crossed for you.  Just keep on thinking positive.  I think I read somewhere on the board that someone's tinnitus went away.  Can't remember what kind of treatment they had, but it sounds plausable that you may have gotten a "perk" from your CK.  Maybe someone out there can confirm.  Thanks for sharing.

Nancy