GK on 11/25 in Kobe, Japan

[mucomval]

Hi Everyone!

Am new here, just found this website. I'm Indian/British, born & raised in Japan. At 52, I found I had AN 1.8, left, thru MRI in Nov/10, after a year of slight stuck feeling and air sound in left ear. Was pretty shocked that it was this tumor, tho benign. Two 6 month interval MRIs, last one last month 11/1/2011 - had grown to 2cm+. Experienced surgery doc top in field recommended surgery or GK. When I heard the stories of surgery 'vertigo for 3 mos. after surgery' as removing vestibular nerve, I said "Oh, ohhh": red sign! Then, GK the other option sounded so nice - why the heck should I have surgery then. Me to doc: not interested in having growth totally removed if have to remove vestibular nerve and suffer vertigo for 3 mos.: who knows what else might be in stock?! So he said, no problem in my case GK is good and he made an introductory letter for the GK and doctor, somebody under him, at a very good place.

First he said I could have it anytime, and we decided maybe Feb. next year. I was thinking of getting a 2nd opinion but as not many places did GK I decided after consulting with my acupuncturist that I should get a lot of info at the GK place, which I arranged and luckily got a meeting right away. Doctor was so nice and professional, I decided to have it at next available slot and scheduled it (GK) for 11/25 (next week). Am very happy with my doctor - he spoke good English too, (though I am bilingual).

Am glad I met this site too. Now, I'm preparing myself and praying all will go ok. If eventually this will stop growth and reduce in time, how happier can I be? If air sound and hearing loss won't improve it's ok, it compensates for no growth. I was told eventually I may have no hearing over time: I'll know when I get there! Meantime, I'm counting my blessings, also that my right side is A-ok and I'll rely on as my savior.

Life is so mysterious. I hope to turn every experience into a positive one, hopefully. I'm a Buddhist and pray and this helps me for everything: I've never felt more gratitude than now. I think I feel deeper for life now. If anyone can encourage me or shed some insight or story they can share for me I would be more than grateful. Again, grateful also for this communication forum. God bless, and Buddha bless! : )

MK

[frenchjoey]

Hi MK!
I know exactly how you feel. I had GK nearly three weeks ago (in France) and even though I was confident GK was the right solution for me I was a bit apprehensive.
If you read the posts Cmar and myself left on the subject called ZAPPED (in Radiation/Radiosurgery topic) you will be able to read accounts of our GK experience just a few days after the treatment. People on this forum have been so nice and I found it most encouraging and helpful to exchange info with people who had been through GK recently so if you want to ask me further details do not hesitate to ask. You can also send me a personal message through the forum if you prefer.
Things will go smoothly. I KNOW. I will be thinking of you on DDay
Best wishes
Joey

[mucomval]

Joey

Thanks a lot for your response and encouragement. I did in fact read your post before. I was really going through this whole Forum looking for things that could relate to me. I'm glad I found this Forum.

I would also like to thank the founders and moderators of this Forum. I think that encouragement and solidarity are so important in all fields in life - the human connection. It might be one of the most important things in contemporary life, where people learn and are encouraged from real life experiences.

Networking helps in overcoming fear and pain, uncertainty. I will be in touch.

Thanks and best,
MK

[Seamar]

Here's wishing you a speedy and uneventful recovery from your GK surgery on Friday, MK.  Do let us know how it went.  We care and will support you in any way possible.


C-Mar

[mucomval]

Dear C-Mar,
Thanks so much for your supportive thoughts. I will post back later after my surgery whenever I get the time to let you know how it was. I hope anyone/everyone getting a GK has a successful treatment!

[mucomval]

Dear All (who I said I was going to respond to),
My GK was for 40 min. at Shin Suma Hospital in Kobe, a pioneer facility in Japan. Perfexion was installed in 2011. My doctor said he accomplished to apply radiation to all of my growth successfully and that I didn't move an inch which he was also impressed with!
Thing is, after 4 (and 1 more) shots to front and back of my head to pin in the head gear (to get an MRI view and for the radiation itself), my head was sedated while rest of body not, so that made for a prime uncomfortable snugging into the machine which was momentarily excruciating, but I managed to impress the doctor as I feared moving my head even a bit might send radiation to unwanted places.
I went in at 9a.m. and was finished by 3:30p.m. (head gear, shots in morning, MRI, and then 40 min. treatment; breaks in between)
When anesthesia wore off by 5p.m. I felt nauseous and headachy - took pain killer; after the med wore out, pain onslaught again followed by pain killer. The first night was a bit rough - after that I was on the path to recovery and normalcy.

In hindsight and from now:
Ear sound is a bit less and hearing is same pre GK. The doctor told me: I will see some visible sign as far as the growth in 6 months. In different cases I may have bouts of vertigo for which he'll give me steroids if bad and this may come on anytime, even 2 months from now.
I am actually Very relieved I had the GK and because I know that I've done something which will halt growth and down the road decrease the size. Imagining and believing this comforts and relaxes and also strengthens me.

To all concerned: I believe in the power of GK and its purpose. I look forward to see my results. Be comforted by this. You are in good hands.
What I have to see: pre GK the doctor told me, 'gradually/eventually you may/will have full loss of hearing but don't be dismayed; there are many who cannot hear in one ear, and your right ear is perfect and that is about the only problem you'll have regarding this condition'.
Let me see: I hope to prove him wrong!

So this was the result and I hope that I can give hope to anyone having the GK! Please write me for anything I can help with!

MK
happy in Kobe/Osaka

[Seamar]

Glad to hear from you, MK, I was getting worried!  Yes, it's good to have it over and done with.  Your posting will be most helpful to others who will come after you.  Now we just have to be patient and wait for what I trust will be good results.  I wish you continued healing.

[mucomval]

Dear Seamar,

Hi! Don't think I ever thanked you for your well-wishing for my continued healing! I checked back here after a long time. I got a mail about the AN newsletter.
Am getting my first official follow-up MRI on 19th this month.
Ever since my GK on 11/25, I think my left ear hissing has slightly weakened or stabilized. The loss of hearing is pretty much the same. I don't feel any known feeling of vertigo, definitely not the slights bouts I was feeling pre-treatment.

Let's see, on the 19th, the results hopefully will be showing some sign of decrease. I don't want to say anything but I want to be optimistic.

Again, thank for you well wishes. I do feel that I am on the solid road of healing - whether results show right away or not.

Thank you,
MK (Mukesh)

[HisHands]

MK, I'm so happy to hear you're doing well.  I had GK shortly after your procedure (mine was on Dec. 16, 2011).  I, too, am doing very well.  My doctor preferred to wait a year before conducting another MRI, unless I start experiencing new symptoms.  I'm trusting you will have positive results from your six-month MRI test; please keep us informed of your progress.  Emma

[Bonnie B.]

 I am having the Gamma Knife radiation Thursday at Yale New Haven Hosp. for my l.7 cm AN.  I am really nervous and would love to hear some comments from people who had a great experience with the GK.

[HisHands]

Bonnie,  I was very nervous before my GK procedure, too.  The information and advice I received on this forum was extremely beneficial.  I was concerned about everything from the Halo pinholes in my forehead to what I should wear    Be sure to do a search and read "ZAPPED" by Seamar on this site; it gave a detailed account of her experience and it practically matched my experience step-by-step.  I asked for a sedative before the procedure and was given Ativan (I don't even remember the Lidocaine shots when they placed the halo on my head.)  I took a CD with my favorite music that was played during the GK treatment (I think most hospitals allow this & I found it comforting - although I think I slept through most of the treatment  ) 

Like Seamar mentioned, you can't wear anything with metal (I was also told no nylon).  The athletic bra was very good information and can be purchased in all cotton without metal hooks, etc.  Although you wear a hospital gown, I was allowed to keep on a cotton tee shirt, cotton exercise pants and cotton socks (the procedure room was extremely cold and I was glad I had on extra clothing -- as well as a blanket).  After everything was over, they removed the halo (painlessly), and there was very little blood from the pinholes.  The top of my head stayed numb for two or three weeks, but all feeling finally returned.  I had my treatment on a Friday, went back to work the following Monday, and haven't missed a day of work since the treatment.  I'm experiencing the same type of symptoms I had prior to GK (not any worse and not any better) -- mild headaches, tinnitus, loss of taste on one side of my tongue (not a complete loss), and one eye still doesn't have as much tear production as the other eye.  The facial twitching, however, subsided greatly after the treatment. 

Like I often read on this site, the same procedure may or may not have the same effect on an individual.  By the same token, the same symptoms may or may not result in the same diagnosis.  I'm certainly not a doctor and can't medically diagnose anything    I can only share that my personal experience with GK went very well.  I will keep you in my prayers for this Thursday and look forward to hearing from you soon.  Emma

[Bonnie B.]

Emma,
Sorry I never got back to you on this Forum.   Everything went really well with my GK treatment.  I went in at 7:00 am.   They gave me a mild sedative by mouth followed by something via my IV.   I was fully awake throughout the entire procedure.   The worse thing for me was the numbing of the head.   Once the four injections were over with, I completely relaxed.  I really didn't feel anything when they put the frame on.   Then it was off for a CT scan followed by an MRI and then the GK.   I brought my favorite CDs with me.  The hour in the machine went by pretty quickly.

Other than some headaches for a few weeks, I had no ill effects.   I will be anxiously awaiting the first MRI.   I was told that they think I have a meningioma and an AN.  However, the treatment is the same.

I hope all is well with you.

diagnosed 1/2012
1.7 cm AN/meningioma
GK 3/15/12

[HisHands]

Bonnie....So happy to hear everything went well for you!  Please keep posting your progress when you can.  I had my procedure almost five months ago and I'm happy to report I'm still doing well.  Take care and hope to hear from you soon.  Emma

[JWW]

Glad everyone is doing well with their GK , Bonnie B. and His Hands.

My husband and I ask our consult radiation oncologist, if people ever have more than one treatment with GK like they do with CK? He said, "he has never been able to talk anyone into coming back once they have had the holes drilled for the head gear and a metal frame pinned to their head!"   

[Bonnie B.]

It was so good to hear back from both of you.   You must be almost ready to have your first MRI post GK.    I will be so hoping that the news will be great.  Please keep me posted.

Bonnie