Positive Gamma Knife Stories Only

[Nancy Drew]

I need some positive stories here.  Did any of you maintain your pre-AN hearing after Gamma Knife Surgery?  I have mild hearing loss, and I am hoping my hearing will not get worse if I have GK.  Thanks.  Nancy

[Mark]

One dose GK treatment maintains hearing levels in about 55-65% of the cases depending on the studies you look at. CK fractionated in 3 doses will be in the 70-80% range on average and I recently saw a study that claimed a 100% but it was a fairly small sample

Mark

[Dana]

Nancy,
My GK story is positive, at least 11 months afterwards so far.  I have 1.6cm rightside AN.  Before GK last July 07, I had some hearing loss in that ear (not sure what percentage it would be labelled - 10-20%), slight tinnitus, and some balance problems. 

When I had first follow-up MRI in January (I'd put it off on purpose cuz it's a 6 hr rt drive to Seattle), I thought I'd had some further hearing loss, but results of hearing test were identical.

The MRI showed some swelling (hopefully temporary) and some beginnings of necrosis.  At times I'd say my balance is slightly worse, but then I seem to compensate.  I mean, it's not pretty when I stagger, but it's not totally bothersome either.

Over the last two months, I've had about 10 facial twitches where my right eye twitches and my mouth contorts to the right.  Each episode only last 15-30 seconds, almost always in the morning.  I've written my specialist doc a letter to see if this is to be expected, or something to be examined further.

So... that's my report.  I am happy and feel lucky that my symptoms haven't been that bad, and I'd say overall I'm in the same condition as before the GK.   Just hoping it's dying...!

Take care.
Dana

[Nancy Drew]

Dana,

I hope you continue to have success with the aftermath of the GK.  Hopefully the twitching is something that will go away.  It is so nice to hear that your hearing has stayed intact.  I am so hoping for that because I have mild hearing loss in my nonAN ear.  In fact the hearing initially was better in my AN ear than the nonAN ear.  They are about the same right now.  I guess with these ANs you just have to keep your fingers crossed and take it one day at a time.

Mark,

I am reading a lot about the success of CK having better odds of maintaining hearing than GK.  Are you watching and waiting or have you had treatment?  My doctor does GK and surgery.  I haven't gotten a second opinion about CK at this point.  There isn't one in Denver, but there is a new CK facility in Boulder.  It kind of scares me that it is new, and my doctor keeps telling me that there just isn't enough long term research about the outcome of CK as there is for GK.  Of course, my doc has given me all of the "positive" articles to read about GK so I am kind of sold on it right now.  This is one of the hardest decisions I have ever had to make.  I am sure it is for the most of us.  Thanks for your input.

Nancy

[Nancy Drew]

Mark,

I am sorry that I did not read your signature and see that you had indeed had treatment.  My apologies.  I think I was so anxious to get to my CK post that I overlooked your sig.  Glad to hear that you have had good results with your CK.

Nancy

[mk]

Hi,

My name is Marianna, I am posting for the first time in this forum, although certainly not new (I have been following the discussions for months).

I had GK on April 23rd, for a 2.9 cm AN (very-very borderline in size), which was diagnosed back in October 2007. The symptoms that I had been experiencing were/are facial numbness and altered taste sensation. I had a bout of hearing loss in December, which came back after a course of steroids. GK was my only radiosurgery option in Canada (CK is not available) and I absolutely wanted to avoid surgery. They did a 11 Gy dose, because they were concerned of the potential of swelling due to the size of the AN.

It is still very early to really know the results of the treatment, or if any side effects will appear, so I cannot really claim that mine is a "positive" story, but I just wanted to share my experience until now.

Basically it has been a breeze. I could have gone back to work the next day, although I chose to take it easy. I only had some swelling on my forehead, due to the pins of the frame and I still have a mark on one side. No nausea, or headaches. My hearing was tested at 100% a couple of weeks ago (but of course still very early after treatment ... hearing usually goes down gradually). The procedure itself is not pleasant (especially having to wait with the frame on, until the devise the treatment plan), but tolerable.

I have not seen many GK posts on the forum, that's why I thought I would share this. I am not sure if it is that people do not do GK any more, or they just don't participate on the forum so much? There are some stories on the AN archives: http://www.anarchive.org/.

Marianna

[sgerrard]

Hi Marianna,

Welcome to the forum! There are certainly some others who have had GK in the last year, and they do post from time to time, so you are not alone. They do seem to be a bit quieter overall, compared to the surgery gang, but there's nothing wrong with that.

I'm glad to hear that so far, your hearing is still at 100%. Try to keep it that way. 

Steve

[leapyrtwins]

Marianna -

thanks for sharing your experience - it sounds like a very positive one.  Congratulations!

As Steve mentioned those of us who've had surgery tend to be a little more vocal than those who had radiation, especially GK, so it's wonderful you decided to post.  Your reply will be very valuable for those newbies and those watching & waiting as they try to decide on a course of treatment.

Hope to hear more from you,

Jan

[Tumbleweed]

I haven't gotten a second opinion about CK at this point.  There isn't one in Denver, but there is a new CK facility in Boulder.  It kind of scares me that it is new, and my doctor keeps telling me that there just isn't enough long term research about the outcome of CK as there is for GK.  Nancy

Hi, Nancy:

You might be interested to know that when I asked Dr. Chang who he would recommend to do CK if I didn't choose him, his response was "Boulder Hearing." Dunno if that's the same place as the one you know of in Boulder, but maybe so.

I asked all the doctors who consulted me who would they choose as the best place to get treated if they weren't treating me. I think it's a good way to find out which doctors and/or insitutions are the most respected by their peers.

BTW, Dr. Chang's email address is sdchang@stanford.edu. He routinely tells people with ANs that  he will look at their MRI and audiogram and give his advice for free. You can't beat that. I encourage anyone who is undecided about their treatment plan (including watch-and-waiters) to look into CK with Dr. Chang. Information is power, and Dr. Chang gives of his time and knowledge freely. I can't say enough good things about him. I have chosen to get CK under his care.

Best wishes,
Tumbleweed

[Lorenzo]

One more thing: Stanford is the main training hospital for CK so chances are that the doctor in Boulder was trained by Dr CHang. I don't know, but it could be.

Ciao, Lorrenzo

[SusanT]

Nancy,
I won't post it here because you want positive GK experiences, but I will send you an email about my GK journey if you want me to- just let me  know. My email is susiegt66@gmail.com
Susan

[Sue]

Hi Nancy,

GK in April of '06.  I'm in the "so far, so good" camp.  But, as you already know from other posts of mine, my hearing was not very good when I had the procedure and I think it's gotten a bit worse.  My hearing went bye bye so fast.  Just in a few months time.

Hang in there.  You will get the answers you need and everything will be okay.

Sue in Vancouver USA

[GRACE1]

After GK, I went out to eat and shopping early that evening.  I felt good - no side effects. 

[Nancy Drew]

Thanks for your replies as always.  Sue you are a trooper and hope you continue with the "so far, so good" camp.  Grace, I love your story, and I think deep in my heart I will have a success story like yours.  If it doesn't turn out to be a positive outcome then I will just have to learn to live with what I get.  My AN is tiny, and I think it is a good canidate for GK or CK, but GK is here and I trust my doctor.  Trust is an important thing in my book.  But, I think that everyone has to feel comfortable with what they decide to do, and if I end up back on this board should I have treatment, I hope to pass on whatever helpful information I can.  Support, compassion and respect are what we should all get here, and for the most part that is what I have gotten.  Thanks.

Nancy

[Jimbo]

Nancy,
Had GK approximately 3 weeks ago on 7 x 12 mm AM, and have felt great every since. Obviously too early to tell that tumor growth has ceased until 1 and 2 year follow-up MRIs.
Just this past weekend, I experienced difficult balance issues, which they say are a positive sign that the tumor is dying. I initially tried ibuprofen which helped considerably, but still not 100%. Now on 3rd day of steroid dexamethazone for a 5-day regimen. Feel great, resuming all normal activities, and worked out at the gym today. Life is good.

Jimbo