Author Topic: made my decision!  (Read 4169 times)

ToneControl

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made my decision!
« on: October 11, 2007, 10:21:27 pm »
Quick update:  after getting evaluations from Dr. Mangham at Seattle Ear Clinic, and Dr. Chang at Stanford, I have decided to go with Cyberknife.  My biggest concern has been to choose the option which seemed to have the best hearing outcomes, and after a bunch of research (maybe Google should be considered a prescription drug!), I feel comfortable with my choice.

Dr. Mangham indicated that because of the small size (1cm) and location of my AN, I would have a better than average chance of saving my hearing.  Taking that into consideration, I still feel that the 80% hearing preservation outcome that Cyberknife has been showing tips the scales in its' favor.  I recently found references to a 10 year follow up of radiation which showed a decrease in hearing preservation to less than 50% ten years post-treatment, which I was disappointed with, but after speaking with Dr. Chang, he said that his data was showing 75% preservation five years out.  Bottom line - I'm looking at slightly better than 50/50 odds when I wake up from microsurgery, or 80% wich Cyberknife, with the knowledge that it may decrease over time.  I figure if 10 years out I'm at 50/50, I'm still 10 further down the road.  Add to that the reduced risk of facial nerve damage, no CST leaks, etc. with Cyberknife.  Maybe faulty logic... but it works for me.

My thanks to all who replied to my earlier post, and to everyone who shares their research, insights and experience on these boards.  Thanks to Steve Gerrard for encouraging me to explore Cyberknife more thoroughly before deciding.

To those out there trying to decipher all the various studies as they relate to hearing preservation, a word of advice:  make sure you are not comparing apples to oranges when looking at outcomes.  There can be a big difference between "useful hearing" and hearing preservation in the same Gardner-Robinson hearing class.

Now all I have to do is get through the next month without going crazy...
1.0cm AN, diagnosed July 2007.  Treated Cyberknife at Stanford Nov. 14-16 2007, Dr. Chang, Dr. Soltys.  -  42 year old audio engineer, 15 dB PTA loss, 100% SDS, tinnitus at time of diagnosis.  Now we wait and see...

Lorenzo

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Re: made my decision!
« Reply #1 on: October 11, 2007, 11:39:25 pm »
Good luck with CK! I had my treatment at Stanford nearly three years ago with Dr Chang, and it's a great place! When is your treatment?
Your logic seems to me fine, just the way I was thinking. Plus, the decision seems to make you feel more comfortable, so that's an important aspect to point out.
All the best, keep us posted.
Ciao, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

Mark

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Re: made my decision!
« Reply #2 on: October 12, 2007, 12:26:10 am »
Tonecontrol,

I'll offer my congrats on getting to your decision as well. I'll also concur with Lorenzo ( which I usually do anyway  :)) on both your logic and choice of CK. FWIW, I go in for my 6 year MRI / audiogram with Dr. Chang probably in December and at this point I feel my hearing is still at the same level as pre-treatment with SRT at between 95-100%. So, I guess I'm in his 75% after 5 year data base if that gives you any more assurance.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Lorenzo

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Re: made my decision!
« Reply #3 on: October 12, 2007, 02:45:35 am »
Thanks Mark!  :)  lol

By the way, and sorry for side-stepping slightly, but this could be of interest to ToneControl too. Did you continue your yearly MRI / audiograms past the three year stage? Is it something you're likely to continue for ever / a while longer / a finite numbers of years? I'm coming up to my three eyars and MRI time again, and I'm jsut wondering what the future holds.

Sent you a pm about this too, but thought it might be of interest to others. Apologies again ToneControl for diverting from your good news!

Bravo to you!!

Ciao, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

GM

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Re: made my decision!
« Reply #4 on: October 12, 2007, 06:04:33 am »
Congrats on your decision...that tends to be the hardest part!   :D

Best of luck!!

Gary
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Mark

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Re: made my decision!
« Reply #5 on: October 12, 2007, 09:41:20 am »
Hi Lorenzo,

Yes, got your PM, good to hear from you. Since you and i under both under Dr. Chang's care, I would imagine he'll have you follow the schedule he has me on unless there are some other circumstances involved.

Basically, I was every 6 months post treatment for the first 2 years, then annually for year 3 & 4 and then I went to two years which is where I am now. Barring any complications on this upcoming snapshot, I believe I will be on at least 1 more two year cycle and then I think he told me it will start going to 3 or 4 year intervals, but I'm guessing there. I'll try to remember to ask him when I see him what his perspective is on the long term follow up, or I might just send him an e-mail.

I also think one of the factors in follow up when you're treated at a teaching medical center like Stanford is their interest in tracking people to support clinical studies down the road ( which is what everyone here keeps asking for, right  ;)), so I kind of accepted that was a responsibility of electing to be treated there so it helped produce research for others in the future.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

ToneControl

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Re: made my decision!
« Reply #6 on: October 12, 2007, 10:22:05 am »
Thanks for the replies, guys!  It's reassuring to find others who have made the same choice and have gone down the path before.  As anyone researching Cyberknife can attest to, the biggest difficulty is finding long-term data, and being able to differentiate CK studies from those done with other forms of radiosurgery ie:  Gamma Knife, Linac, Novalis, etc.

My treatment is scheduled the week of November 12th.  My sister lives in SF, so I'm lucky to have her there for support, as well as transportation.   ;)  My mom is also going to fly down as well, and I feel fortunate to have so much family support.  I wish my wife could attend, but she is teaching full-time, and having to buy plane tickets for both our girls at this point (ages 2 1/2 and 4 1/2) makes it impractical.

Thanks again for the support!  I'll try to keep the group posted.

- robert

1.0cm AN, diagnosed July 2007.  Treated Cyberknife at Stanford Nov. 14-16 2007, Dr. Chang, Dr. Soltys.  -  42 year old audio engineer, 15 dB PTA loss, 100% SDS, tinnitus at time of diagnosis.  Now we wait and see...

Mark

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Re: made my decision!
« Reply #7 on: October 12, 2007, 10:38:23 am »
Robert,

In terms of the long term studies between the machines, I think the issue relative to CK's "newness" is more related to how much better it can improve on the typical results of radiosurgery historically. In terms of "biological" kill , doses etc, the LT studies of GK and others are transferable to CK. What the long term studies are more focused on from my perspective is whether or not it's higher accuracy and being the only radiosurgery ( as opposed to radiotherapy) machine to be able to fractionate will prove out to give better nerve preservation results. The ability to kill the AN is pretty applicable to all the machines used.

Good luck on your trip to Stanford. If you have any questions in between please feel free to ask. In addition to Dr. Chang, please say"hi" to Larry the machine operator. You'll spend more time with him than anyone while you're there and he is a great guy. He was the "man behind the curtain"  :) for me and most of the others here who were treated at Stanford.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Lorenzo

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Re: made my decision!
« Reply #8 on: October 12, 2007, 01:14:05 pm »
HI Mark,

I'll be talking to Dr Chang myself soon so I will find out if it's the same for me. I just never knew what the situation was for the next few years. Thanks for the details.

Robert,

Hope all goes well and tell Larry Hi for me! He's a great guy. Oh, and bring your own music CDs to listen to, and eat vegetables, lots.  :)

Ciao, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

leapyrtwins

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Re: made my decision!
« Reply #9 on: October 12, 2007, 06:56:43 pm »
ToneControl -

congratulations on reaching your treatment decision.  It's definitely a nervewracking exercise - so many things to consider.  You sound very comfortable with your choice, which is a huge part of the battle.  Good luck with the CK.  Let us know how it goes.

Jan
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: made my decision!
« Reply #10 on: October 13, 2007, 08:29:06 pm »
Hey, hey, Robert!

Well, I am just four weeks post treatment now, and so far, not much has changed, except that I feel better. I still get odd pressure sensations coming and going on various days, still have the crickets gently chirping away, and seem to hear about the same. Some days it seems like I might be hearing a little better, but it is probably just that I'm getting used to it. I certainly feel less worried about it, and also feel sharper mentally than I did during the summer.

So congratulations on making your decision. It is hard to make sense of all the stats, but for a small AN that isn't causing much trouble yet, I think radiation makes enormous sense, compared to the trauma of surgery. And CK certainly seems to be the ideal type of radiation. I felt very good about my decision after treatment; in hindsight it seems like it was the obvious thing to do - a no brainer, as they say. As you have thanked me, I will thank Mark for steering me towards considering CK.

Larry and Eileen were great, also the two women at the patient check in desk. Say hi for me, and ask if they want copies of the pictures. Here is what you are in for, that is Eileen getting me ready before putting the mask on (the blue mask is sitting on the CK machine at the right):



The way I feel now, at worst the AN has taking a huge pounding with XRay, and won't be up to any mischief for a good long while. With any luck, it is a flat out goner. The only down side I see for you is that you will probably not need than Van Gogh Studios name after all.  :D

Steve
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.

ToneControl

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Re: made my decision!
« Reply #11 on: October 14, 2007, 02:44:10 pm »
Thanks again!

Glad to hear you are doing well, Steve.  I'd been meaning to drop you a PM to see how your treatment went, but hadn't had the chance.

Mark, you did an excellent job of verbalizing the same sort of thoughts I have been having regarding CK studies as opposed to general radiotherapy reports.  It's very reassuring to be finding people who have had CK some time ago who have managed to preserve their hearing.

For me, it remains to be seen how practical it is for me to continue my line of work.  I haven't been working as much lately as I deal with all this, but the tinnitus, etc. are probably easier to deal with as a result of it.  I used to have many 10-14 hour days where I was getting pretty constant exposure in the 85-95 dB range, and I just don't feel like putting myself through that right now.  I definitely feel more fatigued after a session, but I think that's just my brain trying to compensate for what my ear is missing.  I did come across a website while I was researching that referenced a study (Univ. of Illinois, I believe) showing a 1.5 times incidence rate for AN among construction workers, and a 2.3 times rate within the music industry.  With all the attention that has been given to hearing preservation among musicians in the last decade or so (thanks, House Ear!!), I'm kind of surprised there hasn't been more of a correlation established to AN.

So, while a small part of me wonders if somehow I brought this on myself, it is vastly overshadowed by the support, love and encouragement I have received from those around me.  I feel very fortunate to have caught this thing early on, and I do not take my blessings for granted.

Now... can anyone recommend a good facility near Stanford for the fractionated margarita treatment I keep hearing so much about?   8)
1.0cm AN, diagnosed July 2007.  Treated Cyberknife at Stanford Nov. 14-16 2007, Dr. Chang, Dr. Soltys.  -  42 year old audio engineer, 15 dB PTA loss, 100% SDS, tinnitus at time of diagnosis.  Now we wait and see...

Mark

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Re: made my decision!
« Reply #12 on: October 14, 2007, 05:04:18 pm »
Now... can anyone recommend a good facility near Stanford for the fractionated margarita treatment I keep hearing so much about?  8)

California Cafe, down the street in the Stanford shopping center, right across from Lucille Packard Children's Hospital ( ehich is attached to Stanford)  ;)

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Captain Deb

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Re: made my decision!
« Reply #13 on: November 26, 2007, 02:38:53 pm »
Congrats on your decision, ToneControl!
Doing a happydance fer ya!


Capt Deb

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50-ish with a 1x.7x.8cm.AN
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