Cyberknife Journey

[marystro]

Hi Phyl,

Dr. Chang wrote back and said that I will be receiving 18Gy total for my treatment.  I guess I am managing these symptoms for now until treatment time.  I am not worried since I know I am in the best hands possible.    Hey it's only an AN and not the end of the world.  Besides, my husband will not even let me carry any backpack around in NYC and he's taking care of all the whinning from my 8-year old after a long day of walking around in Times Square, Central Park, ...  Totally pampered! 

Mary

[ppearl214]

Mary,

Fantastic news!  He's giving you a good dose and you are going to do great! Pick out your music (I harrassed my CK team, in April, with Chipmunks Christmas!), get your adavan ready (ah, the mighty "happy" pill) and let's rock and roll you to wellness!

Phyl

[marystro]

Today is almost over.  Glad to report that there was no shooting pain today knock on wood (eating very carefully now).  However at the end of the day I had some very minor lower facial sensations which I have not had before.  I am wondering if they are related to fatigue since we have been walking a lot in NYC playing tourists or just being overly sensitive about every tiny little feeling?  I don't think I am imagining these sensations though.  The good docs on CK support group said it's probably nerve irritation.  Counting the days down to CK-land --- 8 more days!  Probably will have other issues after treatment  - Boy, I am mad!  I guess I am entitled to these feelings...

Mary

[SKConner]

Greetings, first time on the message board.

I was just diagnosed with a AC - rather small (9 mm) contained in the canal through the skull - from the brain to the ear drum. Have experienced hearing loss and tinnitus.

I was actually scheduled for surgery today, but last week, a problem developed with the machine that monitors the facial nerve during the procedure. Interestingly the day before it was canceld, I was contacted by someone who was highly recommending the approach he took which was the "Novellus" Machine - in Indianapolis. When talking with my ENT surgeon when he called to cancel - and we were discussing options about rescheduling here in Fort Wayen or going to IU Medical - I asked about the "Novellus"... he actually indicated that it might be an option to look further into...he would if her were in my shoes. Here in Fort Wayne, they have a new machine called a "Cyber-Knife" -

I'm set to talk to the radiation-oncologist tomorrow.  I'm open to any counsel those of you who have exprienced this would have, what questions I need to ask...

Right now, I am leaning 95% toward going that direction rather than surgery.

I would appreciate any feedback.

Thanks,
  Steve

[ppearl214]

Mary,

You are soooooooo entitled to your feelings on this.  You and I will compare notes someday and ya know what?  For my outcome and as well as I do (even with my post-treat side affects), life could really be so much worse... and I am truly blessed... and you are so truly blessed... and so is everyone on this site!  As my cheeky bloke notes, we certainly do have our foilbles and issues (heck, I do a great impression of a weeble -- you know, we wobble but we don't fall down).... but life is what we make of it, in light of everything going on... and Mary, I'm happy to have you hear and as a part of my AN life and new AN family!  Hang tough hun!

xo
Phyl

[ppearl214]

Hi Steve and welcome!  Oh, we are sooooo here to loan our good ears and shoulders and experiences to you!

I am a CK patient, fresh from treatment this past April.  I will share a terrific CK (Cyberknife) patient support website with you:

http://www.cyberknifesupport.org/forum/

There are doctors there that volunteer their time (they think they are getting paid but haven't received any monies! ) in answering our questions. You will see many, many posts about AN's, use of CK as a treatment option.  Dr. Medbery and Dr. Spunberg are 2 very active dr's on the site with a lot of experience and knowledge of CK treatments for AN's.  You will see many posts out there from many of us here.  Definately worth checking.

Know we are here for you and will help in any way we can!

hang in there.
Phyllis

Greetings, first time on the message board.

I was just diagnosed with a AC - rather small (9 mm) contained in the canal through the skull - from the brain to the ear drum. Have experienced hearing loss and tinnitus.

I was actually scheduled for surgery today, but last week, a problem developed with the machine that monitors the facial nerve during the procedure. Interestingly the day before it was canceld, I was contacted by someone who was highly recommending the approach he took which was the "Novellus" Machine - in Indianapolis. When talking with my ENT surgeon when he called to cancel - and we were discussing options about rescheduling here in Fort Wayen or going to IU Medical - I asked about the "Novellus"... he actually indicated that it might be an option to look further into...he would if her were in my shoes. Here in Fort Wayne, they have a new machine called a "Cyber-Knife" -

I'm set to talk to the radiation-oncologist tomorrow.  I'm open to any counsel those of you who have exprienced this would have, what questions I need to ask...

Right now, I am leaning 95% toward going that direction rather than surgery.

I would appreciate any feedback.

Thanks,
  Steve

[SKConner]

Thanks, Phyllis,

I appreciate the encouragement. I will look at the website you indicate. I take your experience of the CK was positive and you would recommend it?  What are the primary downsides to CK vs. Surgery?

Thanks,
  Steve   

[marystro]

Steve,

Do check out CK!  Yours is small and is probably an excellent candidate for CK treatment.  I know I started with the thought of surgery and ended up (quickly) to CK decision.  That machine malfunction is a blessing to you like I stumbled onto this great support group and the CK support website.  There are many who have so much real life patient experience that you will find invaluable.

Mary

[okiesandy]

Hey Mary,

Greetings from Oklahoma!!! I had CK Jan. 06. Welcome to the Class of 06. We are very special. I for one am a confirmed coward and worry to the point of obsession.

I was scheduled for surgery at HEI last Nov. Insurance gave me problems (thank God for unanswered prayers) and by the time we worked out the cash deal I was a total mess. In the mean time I contacted a local oncologist via email and ask at least 1 to 1 1/2 million questions about CK and GK. He convinced me that I wouldn't get cancer from it and it is concidered a cure. Of course my neurotologist said don't ever discuss this treatment with him again.

I will tell you this. It is painless, quick and seems to be working fine. 3 and 6 month MRI showed dark line through center and 6 month showed shrinking.

Here is how it worked.

Day of tests  8:00 am  taken to a dressing room and put in scrubs. To the nurse and weighed, blood pressure, went over med. list and insurance. @ 8:20 went for mask fitting and was given vallium for the up coming cisternogram and CT and MRI. (Not every doctor does the cisternogram). At 11:00 am I was finished. Dressed but could not leave until I had emptied 3 glasses of water.

Day 1 of treatment 1 hour and 10 min. Then out to lunch with my husband and daughter. Shopping with my daugher and a friend.
                                                        Shoes were on sale.

Day 2 of treatment 50 min from time of entry to the center to out the door. More lunch and shopping

Day 3 of treatment 50 min as above and then lunch and to the casino for stress reduction. (You can see how stressful this was, it is hard to figure out which shoes to buy)

For the first couple of months I lost some hair, not much. Had hot flash on one side of my face. Tinnitus changed for the better. No hearing to save. Balance changed, not better, not worse just different. Some trigiminal numbness. Gone now.

Now at almost 7 months the balance is better, brain fog is lifting at times. I had the fog before treatment. I am riding my horses, that I had not ridden in two years, working everyday, taking trips and stripping wall paper from my house. I am older (Phyl, you just keep quiet and don't tell how old), I am a coward and I am doing fine. It was the doctors that put me under the stress when I was making the decision. Do I think of the tumor? Not much. Do I worry about it? No. I had it for years before I knew it. I do stress some for a couple of days before my MRI's because I hate being in the tube.

All the best,

Sandy

[marystro]

Hi Sandy,

Thanks for that step by step process.  It sounded like a real "treat" for a treatment, lunch, shopping and all.  I hope mine will go like yours with such great outcomes .

Some questions:
What is cisternogram?
How big was your AN when you went for the treatment?
What are the glasses of water for?  May be I should ask the nurse if I could drink the water after the treatment since my bladder can't hold much .  In her letter, it says I need to drink plenty of water before.  I don't want to keep getting up to go...

Mary

[ppearl214]

Ya know Sandy...I'm going horseback riding with your old ...er.... young body one day!  You know that!  And yes... you laid it out perfectly. Kate and I were doing brunch/lunch after each of my appts... didn't do the shoe shopping but did nap for an hour or so later... but I think that's from making a pig of myself at brunch!

xoxo
Phyl

[marystro]

Glad to report that those electric shocks have not occurred as much the last few days (not even once today )  I found out when  I have enough rest and sleep there are less symptoms.  Hmmm..  Not sure if they are related - rest and symptoms.  I also read quite a few threads that say rest is a good remedy.  May be it's the body telling us to slow down.  I for one has not been a person who likes to slow down all my life.

My husband seems to think if I lay down then my tumor is not bumping against the facial nerve  .  He tries to give me lots of "me" time the last few days and it's been great!

Mary

[okiesandy]

Mary,

My AN was 1.0 cm x .7 when dx'ed.  Six months later it was 1.2 cm x .7 cm. At treatment time it was 1.3 cm x slightly over .7 cm. and had grown a tail and a cyst.

Cisternogram i(sp?) is where they inject the die into your spine. I freaked when I heard this. Suggested in a panic that there were other ways to do this. Well, long story short. No pain, my daughter thought it was very cool to watch. The water is to hydrate you to keep from having head aches from the precedure. I did have to lay down the rest of the day. That was the very worst of my journey and not every doctor does that. Mine just happens to think it give a better idea of what is going on. Believe me, I have had worse hang nails than that. Yes they do let you up to go to the potty between glasses of water and between, CT's, MRI, and mask fitting. You won't be uncomfortable.

The worry is way worse than the treatment except for very rare individuals. In fact I came out of it feeling like a real nit wit for being so freaked out about the whole thing. KEEP REPEATING, THIS IS NOT SURGERY.

You will do just fine.  With so many people praying and keeping things crossed for you, how could you go wrong?

Sandy

[marystro]

Electric shocks came back today along with bugs crawling under the skin sensations  .  I really hope CK will take care of them.

[Windsong]

Hi Marystro,

I am not sure what you mean by electric shocks..... do you mean those "lightningbolt" type of jabs that shoot through the head somewhere?...

I think some with Ans have had that...
Can you tell me more about this? Thanks....