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Author Topic: Radio surgery C/K  (Read 3242 times)

bubbles

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Radio surgery C/K
« on: August 17, 2009, 09:34:33 pm »
I had my first cyberknife treatment.today at Stanford I really don't feel that bad.I have a little more ringing in my ears and a little headache.But really so far so good.I really had a scare today though when my doctor meet me before and told me that my hearing preservation may be more around 35 % rather than  90% was shocked about that. My ENT said my hearing was stable, Voice recognition has been 95 98 % Has anyone heard that before? Bobbles
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leapyrtwins

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Re: Radio surgery C/K
« Reply #1 on: August 17, 2009, 11:33:56 pm »
Bubbles -

I didn't have CK, so I can't give you any feedback.  I just wanted to say congratulations on your first treatment  ;D

I'm sure someone who's had CK - like Steve Gerrard - will be along in no time to answer your question.

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: Radio surgery C/K
« Reply #2 on: August 17, 2009, 11:48:19 pm »
I haven't heard the 35% number before, I don't know where that is coming from. Might be worth checking to see if you heard it correctly? Was it Dr. Gibbs?

In any event, hearing preservation is hoped for but never guaranteed with CK treatment. You may preserve all of it, some of it, or none of it. The main thing is to knock out the AN. The exact position of your AN with respect to the cochlea (the hearing organ) might be a factor, for instance, and something that might not be pinned down until the final treatment plan is calculated. I don't know, though.

CK is your best chance to preserve hearing, so at this point you should just sit back and wait to see what happens in the weeks and months ahead. It's really a box of chocolates thing. :)

I hope the rest of your week goes well. In my book, you are already a postie.  ;)

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

MaryBKAriz

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Re: Radio surgery C/K
« Reply #3 on: August 18, 2009, 12:44:05 am »
Hi Bubbles,

I didn't hear the 35% before either but I'm with Steve - you are a postie in my eyes and I hope your box of chocolates brings you your favorite fillings!

Mary
 8)
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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

ppearl214

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Re: Radio surgery C/K
« Reply #4 on: August 18, 2009, 06:39:09 am »
Hi Bubbles and welcome... and congrats on your CK treatment choice and beginning treatments. Like Steve, I have not heard of the 35% number but more close to 75% (which was noted at this weekend's ANA symposium as well, in the Cyberknife Workshop, done by Dr. Nik Blevens from Stanford).

I can share this from my own experience.  Like you, I had over 90% of my serviceable hearing at the time of my CK over 3 years ago.  Approx 6 mos later, there was a temp hearing loss of  approx 10-15db due to swelling, which can occur.  With help of steroids (temp use), my temp hearing loss calmed down.

Now, I can report to you....... 3.5 years later, my hearing is still over 90% as of my last hearing test this past February.  We all know that "individual results may vary" as I know of some that had radio treatment and lost more of their hearing... and some that didn't.  Please keep your team updated down the road if you notice any enhanced hearing loss so they can jump on the situation to make sure that it stabilizes/calms down.

Congrats as you are now approaching "toastie postie" (radio is toasting that AN... and postie as you approach post treatment) status!  Will watch for updates. Hang in there!

Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Vivian B.

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Re: Radio surgery C/K
« Reply #5 on: August 18, 2009, 06:47:51 am »
Hi Bubbles,

I can't offer you any answeres right now as I haven't been treated yet. I just wanted to congratulate you on your first treatment and glad that it went o.k. Keep us posted.

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

foodsmarts

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Re: Radio surgery C/K
« Reply #6 on: August 20, 2009, 05:08:13 pm »
Hi Bubbles. I've had treatments 1 and 2 and all went well. The waiting room this morning just wasn't the same without you and your charming husband. It was quite a lively scene in there yesterday with everyone talking and it certainly relaxed me before going behind the "door".

As you described it was a piece of cake. After relaxing into position, I was interested in listening to all the whines, whistles and even something that sounded like castenets. I did see the orange laser lights but nothing else.

Day 2 today was lonely in the waiting room but speedy and the time seemed to fly. I went over to radiology records and got a copy of both my final MRI and my ct scan to take to my otolaryngologist.

I had no problem sleeping last night - in fact we almost over-slept this morning.

I'm so impressed with the hospital at Stanford and with the way the staff has been treating me. I'm sure you have the same impression.

Hope your post-op recovery goes well and you are feeling good. Again, I appreciate all your support and specially waiting to meet me on your last day when you probably just wanted to hit the road and get home.

Keep in touch, Cookie Helen
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5.4mm X 3.2mm X 3.88 mm at diagnosis 8/28/08; 1.1 cm X .5 cm 6/16/09; CK Stanford Drs. Chang and Soltys 8/19/09

bubbles

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Re: Radio surgery C/K
« Reply #7 on: August 20, 2009, 06:49:23 pm »
 This is my 4th day after CK and I have been real sick, which is disappointing. I have had pain on the side of my CK in the face and around my ear and neck really bad,plus dizziness and very stuffy loud ear.According to the doctors at Stanford,that can be happening for awhile.Has anyone else felt like this? I am just curious.
 Bubbles (Wanda)

 Helen, I am happy you are doing so well. Yes, all of the people at Stanford were so wonderful. I really enjoyed meeting you and cheering you on before your procedure. :)
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leapyrtwins

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Re: Radio surgery C/K
« Reply #8 on: August 20, 2009, 07:05:23 pm »
Bubbles -

sorry to hear the CK is making you sick  :(

Hope you feel better real soon.

Please keep us updated.

Best,

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways
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