cyberknife

[petgroomer]

I am 90% sure of what I am going to do.    
I am weighing heavily towards cyberknife.  Here I am once again, up at 4:40 am because I cannot sleep.  I am sure we all do it,, lay there and have thoughts bombard our heads so we can't sleep. 
I was at first wanting this thing OUT!!!  Could not think of having it left in me.  Then, I see SO MANY negative repercussions to surgery with the size of tumour I have and the placement it's in (on the 10th cranial nerve and surrounded by the 9th-12th nerves)... that I'm thinking, cyberknife instead.
The final factor was when someone I know said, "heck, people have pins in their knees, plates in their shoulders" ... and I got thinking... yeahhhh,, that's true.  Then a vagal schwannoma acquaintance of mine said, cyberknife is the way to go.. it just stops growing. 
So there I have it,, it's left in me, but it stops growing.  I have SO FEW symptoms now that if I can get it to stop growing, it just has a permanent home in my neck.... I think I can live with that.
I did have Dr. Fukushima say he may be able to help me after a consult with him.... but even then, it's still surgery.    
I am also VERY ASHAMED with Canada!!!!  The States has mega amounts of cyberknife locations.. even for animal hospitals!!  Canada has.. ONE.  Just recently located in Quebec, and I did call it last month.  Do you think I could get someone to speak English to me???  I tried calling 4 different times!  I definitely feel better about coming to the States for my treatments.

One more thing... I don't ask for sympathy, infact I never bring anything up unless someone asks me about it.  I actually had someone say to me.."too bad we can't see anything because it's hard to believe you are sick"... no not a friend, just a client of mine.  Infact, I don't feel sick so I guess they're kinda right.
Ok,, I AM tired,,, gonna try to fall asleep AGAIN for the 20th time.
Thanks for listening.... (reading)
Rhonda

[ppearl214]

Hey Rhonda......

As you know... I've been following along here... and on the CK forums as well.  On both, you have been receiving very sound information/recommendations.... and one thing you may see noted around here time after time after time.....  go with your gut.  We know that regardless of medical diagnosis, for us to become the best, well-informed patient we can be is key.   It can be overwhelming to "info overload" and try to figure out what to do once we have the info.  For me and my medical whoas (beyond my AN), sometimes I sit back and do a "pro/con" list, literally in black and white (ie: pen to paper) and let it stare back at me.  I know it works for me when I have to contemplate how to proceed forward. 

Last week, because of some of my whoas, I set up an appt with my PCP, just for a "pow wow" so I could bounce the info off of her (she also let me do that with her when I was making my AN treatment decision).  For me, she's an outsider that's an insider and she was able to give me sound advise that I had to take to heart as well.

For many people, going with the gut has paid off.  I know you are doing your homework, sorting through all the info and trying to do what is best for you and your very unique situation.  I have seen what others have noted back to you, esp on the CK forums (Rick... gotta love him!  You can tell him I said that!).  In the end, I know you will do what is best for you.  In this case, your gut may be the way to go.

Phyl

[sgerrard]

Then a vagal schwannoma acquaintance of mine said, cyberknife is the way to go.. it just stops growing. 

I like how you casually mention a "vagal schwannoma acquaintance of mine," like we all might one or two of those.

The basic deal with radiation is just as they said, it just stops growing. There can be some swelling the first year, which could cause you some issues - you would know better than me what those might be. It does seem like it would be less traumatic than surgery, though.

Dr. Chang has a lot of experience with a wide range of skull and spine tumors, and with Cyberknife. The Stanford group is A+, you can't do better than them for CK.

Sleep tight.

Steve

[jerseyboy]

As everyone says, "with radiation it just stops growing".  Does that mean that if someone is highly sympomatic, as I am with frequent dizzyness, vertigo and headaches, that surgery is the only answer to get rid of the symptoms? 
Jeff

[Jim Scott]

Rhonda ~

Obviously, the folks reading and posting on these forums can empathize with your angst (and sleeplessness) over what to do about addressing your AN.  No one really wants surgery - I didn't - and radiation is a very viable alternative if you're a candidate for it (I wasn't...my AN was far too large) but you have to understand that radiation, while non-invasive, is not a panacea.  If it were, no one would ever elect to have surgery.  Radiation has it's own risks and I'm sure you can find a few 'horror stories' on the web from folks who had radiation and suffered with debilitating problems afterward, just as a minority of surgery patients suffer with debilitating problems afterward.  It's relatively rare but if it happens to you, it's a personal catastrophe.  However, everything we do in life that has meaning comes with some level of risk.  As Phyl and others have advised you, don't be swayed by internet 'horror stories', doctor's biases or even the well-meant advice of friends (present or virtual) including me.   As we say, 'go with your gut'.  If surgery just seems beyond what you're willing to risk by all means go with radiation and accept whatever possible risks may occur with radiation.  We'll support whatever decision you make, Rhonda, because we want you to get through this successfully.  You also need to get some sleep so the sooner you can feel good about one approach or the other, the better.  Please let us know if there's anything we can do to further help you.  We're rooting for you, Rhonda! 

Jim

[hevreh]

Hi Rhonda;

I am impressed by your openness and the feedback you are getting on the forum. 18 months ago with no symptoms at the time, I was AN diagnosed in an incidental finding. I was told that the tumor may have been in my head for many years and could still be there for many more. I did my homework for if it grew, how and where to best treat it etc. Similar folks from the AN forum responded and I used the "willing to talk" list to affirm my findings. In the end as Phyl said it is your choice; be confident in the treatment facility and the docs experience with ANs. My own AN was relatively small and top neurosurgeons ALL recommended radiation to surgery. As the AN grew and I noticed symptoms, I further investigated radiation options and challenged docs on their thinking and furthermore looked into outcomes specific to ANs. Last July in Boston at BIDMC I had CK treatments and think to have made the best choice for me. Mind you, post-treatment can bring about some tricky issues but they subside (though not fast enough). For me, it is fatigue, some balance stuff getting better, but my hearing seems preserved (I was told that hearing loss was a risk with surgery). So Rhonda, get informed, confirm and verify with specialists and use the forum. BTW, my one month post-treatment MRI showed minimal swelling. Next Feb/March I return for post- treatment monitoring. Hope my experience is useful.

[likunyun]

<petgroomer>

Ontario, Canada is getting two new cyberknifes, in Hamilton and Ottawa. The one in Hamilton will be iinstalled soon and the one in Ottawa has been approved but is waiting on funding.

http://www.newswire.ca/en/releases/archive/November2009/26/c5261.html

[opp2]

What great news. Thanks for the link.

[petgroomer]

Yes, I had heard that from a doctor that has been promoting the CK in Ontario for the last 3 years.
I would rather have the CK done sooner and at Stanford by Dr. Chang.  That is my desire.  He obviously has more experience than those who may just be starting on it.  I feel very fortunate tho for getting the machines here and what optomistic outcomes will be achieved!