ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: sgerrard on August 11, 2007, 09:30:27 pm
-
First, an annoucement, I have taken the plunge, and setup an appointment for Cyberknife treatment at Stanford, starting Sep. 10.
Second, boy does it feel good to be able to say that! I feel better already.
Third, thanks to all forum users, and the CK'ers and GK'ers in particular, for your support and information.
Then last, the appointment process has just started, and I'm not sure yet whether the insurance company will cover it. I have talked to them, and they are certainly going to consider it, at least. It may be a week or so before I know for sure.
So a question: what might help convince the insurance company to cover Cyberknife? Or will the scheduling people at Stanford get it taken care of? Since my otologist suggested considering radiation and supports me having it, I think the insurance would cover Gammaknife here in Portland, OR. My concern is that they may not want to cover Cyberknife instead, since it will be "out of plan."
Does anyone know if this can be an issue, or have ideas of what might help to persuade the insurance company?
Steve
-
Hi Steve -
The folks at Stanford took care of securing my coverage 2 years ago, and they were extremely efficient. I had Blue Cross at the time. It's a sad fact that insurance companies are becoming increasingly restrictive, and Bruce is right about the need to be proactive. Give Stanford a call on Monday to discuss your situation......they're really good at what they do, and I think they'll go to bat for you with your insurance provider.
Congratulations on setting a date - feels a little euphoric, doesn't it?
aa
-
Hi Steve,
Congratulations on taking the BIG step of scheduling treatment! So much of this AN business is unknown that being able to write your treatment date on the calendar can be a big relief.
My insurance company acted hesitant at first, but the approval actually came through within 24 hours of the day I called to make the appointment. They were probably relieved I didn't go the more expensive route of microsurgery. I was expecting them to drag their feet and would have been ready to do battle with them if needed, but it all worked out quite well. Of course, they haven't paid for it YET, but I have it in writing that they will.
I hope your insurance will come through for you as quickly as mine did.
Betsy
-
Congrats Steve on your decision. That's a big step in the right direction!
I think that the insurance thing will turn out okay for you. At least I hope so. Since this treatment is so specialized they must know that many patients travel out of the area and out of plan to get this done. You can't be the first patient to request this. Anyway, I'll keep my fingers crossed for you.
Sue in Vancouver USA
-
Thank you all, I think I was also fishing for some "atta boy" confirmation, and I appreciate your encouragement.
My first step will be to give the insurance company a chance, they may come through up front. If not, it sounds like the Stanford people have experience at this, and there is also some good information available to bolster my case. There might be a flap with the insurance, depending on the experience of the person initially handling the case, but I suspect they will come through in the end.
One more thing to wait and see on, I guess, but I've gotten better at that, thanks to my little AN. ;)
I will update when I know more. Thanks again,
Steve
-
I got the call today from Stanford, the insurance company has approved having Cyberknife. I am on for Sep. 10th.
The scheduler Scarlett said that what helped the most was when I faxed the RN at the insurance company copies of all the reports - radiologist on the MRI, the audiogram, the vestibular lab tests, the radiation oncologist, emails from Dr. Chang at Stanford.
I get the distinct impression from my small case, and Adrian 'n' Sam's big case, that information flow is a big factor. In many cases, the key people simply don't have all the relevant information. Once they get it, they often do step up and make the right decisions. So get copies of reports from all your doctors.
Thanks to all for your support.
Steve
-
Steve,
Congrats on getting the insurance approved for CK at Stanford and getting your treatment scheduled. Sort of feels like getting a scholarship to attend college doesn't it? ;D
Dr. Chang and the team there are first rate , so you're in good hands. Good luck and don't hesitate to contact me if I can help with anything between now and then. Also, don't forget the traditional post CK treatment wine toast down at the California Cafe after the final treatment :D
Mark
-
Thanks, Mark. Actually I do have a question, but it is general enough that it might as well go in the forum.
During the week of CK, which is consultation Mon, mask and scans Tue, zaps Wed, Thu, Fri, how affected will I be by the process? My impression is that I can drive in each day, drive back afterwards, and do normal things the rest of the day, almost as if nothing was happening. Does the procedure itself, or the little pills, take a toll? Can I go for hikes, or dine out, and such? Can I do a California toast every night? :D
I'm not sure what else I would need help with, I am assuming that at this point, I am done making decisions, I just need to show up and lie still at the appropriate times. Any more last minute choices to make, I hope not?
Steve
-
I had a great time, lots of energy, ate like a horse, and slept little. I guess those little pills DID have an effect. Eat vegetables and lots of fibre! I used to relax and sit back for an hour after each session, generally at the cafe in the Cancer Centre across the road from the CK centre. Then, the rest of the day was spent wandering around, maybe a bit of a nap if I could, eat out at the Cantor Arts Centre, browse the bookstore on campus, and do a bit of shopping. Nights were a different thing. Sleep wasn't really that great, but it didn't seem to mater to much, still had enough energy! Driving around wasn't a problem either, rented a car right after treatment.
Good luck with it, and remember, 'eat vegetables' as Larry the tech said to me. lol
Ciao, Lorenzo
-
Lucky me, I am going to be staying with an old college friend, and driving his second car as well. I guess I am wondering if I can keep up with him, he tends to get inspired when he has company, with all sorts of ideas for things to do. He will have me eating edamame while hiking up Mt. Tamalpai, followed by margaritas at some happening restaurant he knows, and so on for the entire week. I may need those little pills! :D
-
you'll manage. you might fall asleep in the middle of your edamame for a little while, but ye'll be up and running very quickly again! :D
-
I felt exhilarated during CK week. You won't be falling asleep if you're hiking Mt. Tam, guaranteed. You'll be watching hawks hunting below you. As for the edamame, I guess it'll depend on which day of your treatment it is - steroids are notorious for increasing appetite - so make sure you pack enough.
Your accomplice's agenda sounds perfectly appropriate to me - fractionated margaritas.
Looking forward to your journal entries -
aa
-
Steve,
Congrats that all the red-tape is now done and now time to plan accordingly! :D Ok, bring your own music/CD's. Freak out the CK team with something good like CD's of Holiday music, Yanni or something that will throw them off for a good giggle... but make sure they giggle before the button is pressed. Ok, now, look for the "eye" during the procedure. Now, my eyelashes are too long so was difficult for me to keep eyes open as the lashes got caught in the mesh mask, but look for the "eye" when it moves overhead. When you see it, you will know what I speak. Know that Oil of Olay Wrinkle Regenerist cream will not cure "mesh mask face" (you'll know what I mean when the mask comes off and you look in the mirror). Now, make sure you do lunch after. I think Mark and Lorenzo and all others that went to Stanford have a favorite "haunt" for lunch (CA Cafe?)... they can tell you. If your body is slightly fatigued after, blame it on a full belly from lunch, but... pay attention to it and nap if you need to. Now, shopping.... go shopping after lunch.... I need some new kitchen appliances so please keep a look out for me :D Cocktail hour starts at 2pm, so I agree about fractionated margaritas... make it frozen strawberry!
So, you kind of get the idea..... you are going to do great... and looking forward to your "postie" status.
Cheering you on!
Phyl
-
i thought for a moment to bring Talking Heads' Road to Nowhere for a bit of entertainment. Instead I settled for Pat Metheny and Jan Garbarek, much more calming. The choice they had was muzak for Christmas! You'll be spared that. Nothing with much rhythm, you don't want to start tapping your feet while being zapped.
Eateries: Cafe Cool at the Cantor Arts Centre, cafe at the Cancer Centre, Liked Evvia too at Palo Alto.
Breakfast: Peets on campus not far from bookstore
Coffee: Bookstore or Peets again or Cancer Centre or Cantor
There's a couple of palces in Palo Alto itself too of course.
Food is important, gives you a place to sit, obey the cravings and while away some time with something to read.
Oh ya, the mask face: I called it The Onion Bag look. Also, don't be alarmed if you turn from bright red to a blanched almond look in the space of a few minutes right after CK. Happens to all of us.
Ciao
Lorenzo
-
Steve,
I think you have to see how you are feeling after each treatment and I would certainly not plan any activities for any of the three treatment days. Schedule them in your mind as down days and if you're feeling good it's a bonus ;)
The Stanford team will advise you to not drive and have someone come with you on each treatment day, simply because you don't know how you'll react. I felt fine each day and although my wife drove home the first day is was more because I was stressed out than anything. I actually drove the next two days but don't tell anyone ;D. Other folks feel fatigue or get some degree of headache, so you just don't know.
You'll get two pills after each treatment, anti nausea and decadron. I had no issues with nausea so I declined those pills the second two days. I don't think one glass of vino would upset the apple cart each day, but I wouldn't spend the evenings in the local pub given what your body is going through. Most people will tell you to up the H2O consumption before, during and after treatment week
Mark
-
Steve - he's absolutely right on every count. (Thanks for being the voice of reason. Mark!)
Resist setting yourself up for added stress - it sounds like you don't get to see this friend often, and I know that can put extra pressure on sharing good times while you're in the Bay area. And he wants to offer you things to anticipate besides your treatment, as any thoughtful friend would.
Listen to Mark. Keep your downtime options open, pay attention to what your body's telling you, and see if you can acquire a temporary chauffeur for that borrowed car.
-
but still have a wee bit of fun in the process... it helps to off-load any emotional stress you may experience.....just listen to your body when it decides to talk... Everyone's body reacts differently, as you know, so go with what your body tells you and yes, please get rest....Phyl
-
Aardvark,
Thank you, I don't think anyone's ever said I was right on all counts before ;D. Although, a friend told me today that when I turn 50 no one can ever tell me I'm wrong. I think that must be the only advantage to this B-Day. At any rate, the forum is on notice that I can't be wrong from now on per the official plus 50 rite of passage ;D ;)
Mark
-
Mark, trust me my dear friend, I got YOU on notice :) hehehehe! Phyl
-
Thanks for the advice - I think. :D
I will ask Dr. Chang about fractionated margaritas, he will no doubt be able to explain the benefits to me.
AA, you are exactly right, my friend will play host as much as I let him. But his house has a great view of the bay, and he does do yoga, so relaxing time is also quite possible.
Actually my concern from posts here is the driving question. I'm not sure I can arrange a chauffeur, although that does sound nice. I will see what they say, maybe I can just stay in Palo Alto somewhere a few nights. At least one morning is going to be an early appointment, too, with no coffee. Oh well, can't have everything.
By the way, Mark, your profile says you are still 49, so technically you could be wrong about being right about everything after 50. ;D
Steve
-
Steve - There are, of course, many motels in Palo Alto, but Stanford's SLAC House might be worth a look. I didn't stay there, but maybe others who had treatment at Stanford did. It seems reasonable that they might have a shuttle service to the medical center.
http://www.stanford.edu/dept/rde/guesthouse/
The college also posts a comprehensive list of area motels and distances from the campus:
http://www.stanford.edu/dept/rde/chs/general/hotel.html
Happy hunting!
aa
-
I will ask Dr. Chang about fractionated margaritas, he will no doubt be able to explain the benefits to me.
Steve, if Dr. Chang can't explain the benefits of fractionated margaritas to you, it means he's working too hard! :D
Phyl
-
Steve,
Check my profile again today ;D. See, it's already begun. I've not been wrong since I became 50 :o
Mark
-
Steve,
Check my profile again today ;D. See, it's already begun. I've not been wrong since I became 50 :o
Mark
you're a nut... but I have to luffs your humor :)
-
Gerrard,
I'm glad that you've made your decision. I'm still in the first week of trying to arrange to see Dr. Friedman at the HEI and next would be to see Dr. Chang at Standford.
Could you tell me your reasons why you decided to go with CK? How old are you and what type of symptoms that you're currently having with the AN?
Mine includes some ear pain, back ear ache, tinnitus, some loss of balance and especially (kind of scare me) is the facial switchings even though mine AN is 6x10mm (not that big). However, Dr. Chang indicated that the symptoms do not depend on the size of the AN.
Thanks for any information which may help me to understand my situation better and help me make decision too.
-
For bpham:
The first week is pretty early. Take a month at least, it is a lot of information to try and digest. In the first week, I was pretty worked up, and it took a little while to let things settle down in my mind so I could see the overall picture reasonably well.
I'm 53. My primary symptoms are hearing loss, tinnitus, and the fullness feeling. I have had various tweaky twitchy things now and then, but only the ones that are there every day really matter. Although the hearing loss did start a year ago, in the last 8 months the symptoms have emerged quite clearly.
I want to have treatment now, rather than later, because I think the symptoms would just get worse if I waited, and treatment is easier when the AN is small. I have chosen radiation over surgery, because I think the chances for preserving my remaining hearing are better, the chance for new side effects is lower, and the thought of someone cutting a hole through my skull gives me the hebbie jebbies.
I have chosen CK over GK, because it has a somewhat higher hearing preservation rate, doesn't require a frame bolted to my head, and perhaps mainly because the level of communication available with the CK doctors is so much better. The doctors answering questions on the cyberknife forum, and Dr. Chang answering personal emails promptly and thoroughly, even on weekends, was a real factor in my mind.
I will hazard some guesses on what you might expect your outcome would be from CK, given that I am not an expert or a doctor, every AN is different, and even the experts can't tell from an MRI just exactly how your AN is interconnected with nearby nerves and arteries, and so can't tell you exactly what will happen in your case. Having said that, I would guess that the facial twitchings would go away after the first six months, when most of the swelling induced by radiation will have gone down. They are probably more from irritation of one sort or another, not direct impact of the AN on the nerve. I would guess the ear aches have the same kind of cause, and would go away in the same way as well. The tinnitus you will very likely get to keep forever as a memento of your AN.
The balance issue is more interesting. The surgical approach is to simply snip the balance nerve, since the tumor is usually growing from it. It takes a little while for your brain to readjust, but this eliminates any bogus information from the AN side, leaving you with one clear signal from the good side, and most people recover from that quite well. For radiation, the outcome is less clear. The nerve may get zapped and die off, with much the same result as surgery. It may also remain and be able to function properly. In some cases, it remains and causes problems. There is a vestibular specialist on the cyberknife forum who can explain it more.
If the balance issue is significant, I would suggest trying to get a referral to a vestibular lab, where they can do a range of tests to evaluate the condition of the nerves and your current balance function. This can be useful in deciding whether hearing can be preserved, and for predicting what the outcome for balance is likely to be. My tests showed some "positional nystagmus", meaning my eyes start darting back and forth when I lie on my right side, but I have not noticed any effect of this. In my case it mainly indicates that the AN is indeed parked on the balance nerve. None of the doctors are anticipating a balance problem for me.
So that is my story, and I'm sticking to it. Maybe some of it will help you with your decision process.
Steve
-
Hey Steve:
Okay, I am definately in the minority on this one. I drove myself back and forth every day to the hospital (I stayed local so I don't think I was a hazard any more than normal :P). Post treatment Day one and two I had a glass of wine and shopped at Stanford Mall like for 3 hours straight. Bought a new trenchcoat, very classic. ::) I absolutely loved the little pill Decadon.. my favorite legal recreational drug of ALL TIME. (and unlike everyone else, no problems...)
Last Day after my final treatment with the gang at Stanford, I asked if I could have more happy blue pills and was told a resounding no! (yes, they could tell party girl was bouncing off the walls)...
Drove to San Francisco, picked up my mother to take back to Sacramento for the weekend- the comment to her neighbor in the elevator was " Can you believe she's had radiation?" Neighbor replies: "Well she looks a little flushed, but it (the flush) looks attractive!". (I think it was the steroids)
Saturday: my husband and I had my in laws up for lunch. Both my mom and the in laws couldn't believe how well I was doing.
Took about 5 days for the steroid elation to unwind- but then I was jazzed about not having surgery.
Blue Cross by approving cyberknife treatment- saved about 60K in expense. Total CK treatment about 70Kish- surgery was estimated at 130-140K....
I even got Blue cross to pick up original MRI when I pointed out to them how much money I had saved them- took about three weeks, but they looked at the numbers and agreed- even though my policy does state MRI's only as medically necessary- but then a 2.5 CM tumor growing out of your inner auditory canal should qualify!
Okay, there's my crazy story- hope your treatment goes well- my treatment was Hell'of fun! Take care, good luck, Annie
-
Good luck, Steve!
I appreciate your comments on my post, and I am wishing you well as you tread down a path a few steps ahead of me. I am starting to seriously consider CK (having just found that my insurance will cover CK with Chang), and am hoping to make a decision soon.
Hope everything goes well for you, and we all look forward to hearing your report after your treatment. Take care.
- robert
-
Thanks Robert and Pearchica. Robert, I'm glad you're going to give CK a look. It may or may not be a good fit, but it is right to give it consideration. Pearchica, I have read several of your posts to me without replying, but I do appreciate them. Scarlett at Stanford also said I should be okay to drive, although she qualified it with a "have somebody just in case", just to cover the bases.
I feel a little like the kid whose friends have all jumped off the high dive, and he knows he can do it too. Except now he has to actually climb the ladder and jump off...
I fly to California tomorrow, with the first zap scheduled for Wednesday. This may be my last post before becoming a postie. Here goes!
Steve
-
All done.
The steroid pills were okay, they made me a little loopy, but really only a problem if I tried night driving on the streets of SF, which is a challenge for me anyway. I was pretty low key until Saturday night, when I did manage to consume at least three different wines in the course of a long dinner. But lots of water prevented any hangover thank goodness. Sure enough, I also got to do a short hike on Mt. Tam, but no edamame - some raw oat bran, though, which tasted a bit like Cheerios.
The team at Stanford was great, it all went very smoothly, although they did have to restart the machine on the second day, after stopping it because I moved. Rebooting the system, I guess, maybe it runs on Windows. After trying Miles Davis on the first day, I decided the sound of the machine kind of spoiled the music, and let them play their generic classical music the last two days.
I feel worn out by all the travel and appointments and parking and arranging, but otherwise no effects so far, now I just have to wait and see.
Steve
-
Hi Steve,
I was wondering how you were doing with your treatment. Sounds like it all went fairly well, re-booting aside, and that you'll be on your way home soon, if not already. Now when you need MRI's, do you just do them here and then have them sent to Stanford?
Sue in Vancouver USA