ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: DavidC on October 23, 2006, 06:21:39 pm
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hello
Way back in March 1999 I had sudden hearing loss and increased ringing in my right ear. MRI showed a 3-4 mm AN. I went to Mayo clinic where I was told that my options were surgery, GK or wait and see. I chose the wait and see approach. Now, after 7 + years of MRIs, a little more ringing in my ear, and a few other symptoms, AN increased to around 9mm . I have decided it may be time to do something about the AN. I have checked out CK and it seems to be the treatment that I would like to try. I am looking for some feedback from someone who has had a AN of similar size and using CK to treat it.
Thanks,
David
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If your looking specifically for Cyber Knife types...you may want to visit this site:
http://www.cyberknifesupport.org/index.html
GM
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Hello: I just completed 3 cyberknife treatments at Stanford. Although it is too soon to tell you an outcome, I can say my experience at Stanford was great and I feel I made the right choice for me. I did a lot of research before making my choice and although my symtoms might not disappear, I chose the more conservative (didn't want to risk open surgery) approach to stop the growth and know that I might have to live with my current symtoms (there is hope that they will inmprove over time).
You can search this site to hear stories from others who chose Cyberknife. Mark's experience helped me with my decision.
Best Wishes!
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HI David and welcome.
I agree with Bev in that Mark's experience (he's now over 5 yrs post CK if memory serves me right) that helped with my decision as well.
I am now (this week) 7 months post CK. My last MRI (at 5 months) showed tumor size reduction but was too soon to see signs of necrosis (tumor DNA death). If you click on the link below on my sig line (for my frappr), you will see actual pictures of me during my CK treatment and see how easy it was.
My hearing is still in place, although 15 db lower but still very usable. Facial nerve doing great. Balance a hint off but tolerable. I'm working full time and doing great. At time of treatment, my AN was approx same size as your's. I had a 5 day course of treatment, which helped ease the radiation of normal tissue surrounding the AN. Overall, I have to say I'm doing great. Looking forward to my next MRI in Feb, which will hopefully be a terrific bday pressie for me with signs of necrosis.
GM's suggstion of the Cyberknife Patient Support board is also a terrific suggestion. Drs Medbery and Spunberg donate their time to answer our questions. Dr. Medbery also performs GK and CK, so he can give you as unbiased an opinion on radio-surgery procedures. They have also bee instrumental in helping me pre and post treatment.
Hang in there.... glad to help anyway I can.
Phyl
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Just a note about CK. Dr. Spunberg also performs CK and GK in the Palm Beach area. Both he and Dr. Medberry are great and will answer any quesitons you have.
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Hi David,
I had 3 treatments of ck in Sept (total 18oo gy) at Barrows in Phoenix. Dr. Kris Smith was my doc, he's great and his approach is
to do only what is neccessary...although he does surgery also he thought ck was a good route for me.
Too soon to say the final results, but I feel really good. I drove there and back from Santa Fe with no problem. First night had a bad headache, nothing else but some fatique.
My an is quite a bit larger (22mm) and I still have great hearing and balance...just lucky I guess. My main symptom being facial tingeling, it has faded off a bit too. According to Dr. Smith, the ck was the best way to preserve what I have, without risks to the other nerves.
I also saw the team in OKC, which I think would've been great also. I think in the end, you really want to feel good about the doctor(s) your working with...
best regards, melinda
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HI David,
I'm two years post CK and doing great. Had a few ups and downs in terms of fatigue (BIG fatigue) and some problems with concentreation and stamina. But now, I'm back doing what I always did, and more, both at work and in my free time. I had CK at Stanford with Dr Chang. He performs both CK and Microsurgery, so he was a good choice for an unbiased opinion. I would certainly go for CK again If I had to. Right now, the tumour shows increased necrosis and has started shrinking too. All in all a good experience.
By the way, I have a blog if you want to read about my saga, mylump.org
Ciao, Lorenzo
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Hi David!
I am only a week post GK. I wanted CK but the red tape was too much for me and I LOVED my doctors so I chose GK. I honestly felt the outcome would be roughly the same. I'm doing GREAT! Better than before GK! My hearing in my bad ear is better than before GK and I noticed it immediately after the treatment. Before the words sounded like the teacher on Charlie Brown and now I can hear them clearly if the room is quiet. My fatigue is less than before treatment. My vertigo is even better! However I am still only a week after treatment so I don't know what the future holds but I will keep you posted.
Lana
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David: I just got done with my CK treatment at Stanford- honestly, it was like a spa treatment. Very relaxed- I couldn't believe how easy it was. The hardest part by far is making the desicion and doing the research, once you are getting zapped that's the easiest part. ;D I just got done on 2/9 so I suspect the steriods are still going strong in my system..(but actually, that's really fun to- you do have a ton of energy! or at least I do) I suspect that later on this week, the exhaustion will set in... :P
Take care, Annie
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Hi Annie,
Congratulations on having finished! The rush is great isn't it? Feels great to be done and starting the next phase. At least, I did! Mind you, the steroids did help that feeling!! LOL Of course, once they wear off... hemmm. Well, I had a lot of sleep and naps at the most unusual places and times. lol But, it still felt good. I did manage to drive around California after treatment, for about three weeks! Sadly, it didn't stay like that for me... Never mind though, we're all different, so maybe you will have a great recovery with no effects or Big Fatigue!
Lets hope so!! All the best for your recovery period Annie!
Ciao, Lorenzo :)
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Say Lorenzo- Larry Chang says hi! And also told me to check out your website which I will shortly. Thanks for the support Bello- Annie
Also Mary Solys- Larry says hi to you too! Annie
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Aren't they the sweetest doctors!! Speedy recovery Annie!!
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Oh, I missed this one! lol HE still remembers my website? Oh great! LOL
They are great people!
All the best Annie!
Ciao :)
Lorenzo
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Steroids? I'm going to have steroids for my Stanford CyberKnife?
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Steroids? I'm going to have steroids for my Stanford CyberKnife?
Not necessarily Musicman and not the kind of steroids athletes tend to use ;)
Each CK center has their own protocols when it comes to use of anti-inflammatories. I believe Mark had his CK at Stanford and wasn't on them but given a few to keep on hand if need be. I was on them.... each center will determine if you will be on them. Please check with your team at Stanford if they plan on prescribing them for you or not. In the long run, if they help with edema, it's only short term and you'll be fine.
Please check with your team to see if you will be on them or not. Hang in there!
Phyl
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Hi Musicman,
I had CK in Stanford in Nov. with dr Chang. I was given Decadron after each of 3 sessions. Had no side effects unless (in my case) you count good sleep a side effect. The "roids" are given to prevent edema. I did not get any (not even a prescription) afterwards and did not need them.
Flier58
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Thanks!
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Flier58,
I had CK at Stanford too, and like you I had steroids three times, once after each session. Unlike you though, I had effects: very little sleep, energy to run a marathon, hunger to eat a horse, and constipation like never before. Oh that was such fun! Oh, and yes, I did eat a lot! Particulalry vegetables the get the system working again, but sadly to no effect. It eventually settled back after a while... Oh, that's one painful memory to bring up!
Sorry guys, but for me it really was no fun, so some of us had a rather different steroids story. Maybe it had to do with the fact that I had never taken steroids before in my life, system went into shock! :) Never again!
Ciao, Lorenazo
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I have to "ditto" Lorenzo. I was on it long term for my particular situation and for those of you that were on this site this time last year, we had a thread about how to cure the...um.... constipation (btw, my dr prescribed 8 oz heated prune juice with 1 tsp honey at night, works like a breeze!), insomnia issues as well (had the cleanest house in town) and the hungry horrors.
Please keep in mind that each CK location has their own protocols when prescribing anti-inflammatories/steroids (such as Decadron). Please consult with your team prior to treatment so you know in advance and what to expect.
Phyl
Flier58,
I had CK at Stanford too, and like you I had steroids three times, once after each session. Unlike you though, I had effects: very little sleep, energy to run a marathon, hunger to eat a horse, and constipation like never before. Oh that was such fun! Oh, and yes, I did eat a lot! Particulalry vegetables the get the system working again, but sadly to no effect. It eventually settled back after a while... Oh, that's one painful memory to bring up!
Sorry guys, but for me it really was no fun, so some of us had a rather different steroids story. Maybe it had to do with the fact that I had never taken steroids before in my life, system went into shock! :) Never again!
Ciao, Lorenazo
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Oh yes, Phyl, the ould prunes (juice or not) and honey, with a little linseeds and bran thrown in for good measure... Ah yes, the bad old days...
I had the cleanest computer in the univers! I never spent so much time cleaning junk of it than during those sleepless nights. Then went nuts and bought a new laptop. I blame the decadron.
:D
Ciao, Lorenzo
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I couldn't quite sleep after the first treatment. After that, slept like a baby!!
Come to think of it, I don't recall any ummh bathroom issue. My appetitude was not too good however -- probably from the anxiety. Now that I am 6 months +, eating like a horse now. Feeling great!
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Hello my fellow post CK ANers,
Well, all that remind us how different are our responses to meds, treatments and illness itself. But good luck to all of us regardless of chosen approach!
Flier58
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Oh, I'm the only one who really liked the decadron...however, I really did not sleep well- but because I had SO MUCH ENERGY- it didn't matter. But then party girl here asked the doctors for more but was firmly told NO...and after 3 days, I'm sure they were right!
But on a serious note, I had little side effects other than lack of sleep. It did make me realize though what powerful stuff it really is. My understanding is surgery or radiation, you would still get steroids to prevent edema (swelling) correct?
Ah the joys of having an ear tumor.... Take care All, Annie