If you had to do it over again ....

[GRACE1]

I had 40% hearing loss when I was diagnosed in July 2006.  My hearing was not tested again before GK in Dec 2006, but I knew it had gotten worse.  When my hearing was tested a few months ago, I had 80% loss and the other 20% is distorted.  Therefore, I have SSD in that ear.  To me, that is no big deal.  I have accepted it.  I believe that they told me before GK there was a 50% chance I would end up losing hearing in that ear because it was a process that had already started.  I think the loss was gradual - not all at one time.  The hearing loss has not changed my feeling toward getting GK at all.  Odds are precisely what they mean: chances.  You take chances with all procedures.  It is all so confusing when you are trying to decide what to do, until that magic moment happens when you know what is right for you.  Let me know if you have any more questions.  Good luck!!!!

[Nancy Drew]

Grace,

Had you read any research before you had your GK that with CK you might have a better chance of saving your hearing?  If you had the choice of CK over GK, then what lead you to go with the GK?  I feel like I am just trying to make the GK work because that is what is offered in my area.  Reading from this forum, for the most part, I am hearing (ha!) that CK is the way to go for preserving hearing as far as radiosurgery goes.  Sounds like you lost hearing with the GK which makes me wonder why you did.  In my case, if I do the GK instead of the CK and I lose more hearing, then I will always wonder what would have happened if I had had the CK instead.  I wish both had the same results/odds.  So confused.  Nancy

[fbarbera]

Nancy, I was in the exact same boat as you both on the hearing preservation front and the insurance front.  The statistics that I received at the time my treatment were:  with GK, 40-60% hearing preservation, with CK, 70-75% hearing preservation.  Stanford told me they've improved their figures by avoiding the cochlea in the delivery of radiation.  Once I became convinced that the two procedures are the same in terms of tumor control and accuracy, I knew I had to go for CK because why wouldn't I try my best to come out of this procedure as whole as possible.  My HMO gave me a hard time because my network had recently purchased a GK machine.  (Terrific, they're barely done reading the instruction manual and I'm supposed to have my brain radiated by them.)  Stanford helped me through the appeals process.  We made the case that CK was medically necessary due to the improved rate of hearing preservation.  I found it so outrageous that my insurance company would claim GK is the equivalent as CK -- easy to say when it is not their hearing that is at stake.  I submitted a personal letter as part of the appeal (which I will email to you separately if I can find it) that basically said I am a young professional and CK will give me a better shot at preserving my hearing.  After three or so agonizing weeks, I received a favorable decision from the State of California's HMO Board (forget its actual name) overturning Aetna's ridiculous decision and ordering Aetna to pay for the procedure out of network. 

I have to tell you, what I learned about our medical system from this process is that you need to really advocate for yourself, both as against doctors who are too eager to impose their views and insurance companies who think they have some right to determine what is "medically necessary" for you.  The final decision when it comes to our well-being must always rest with us.

Be well,

Francesco





 

[4cm in Pacific Northwest]

Nancy,

Personally if my tumor had been discovered at that small stage - I would head straight to Dr. Chang at Stanford knowing all that I know now from what I have learned from participation in the ANA and this forum. But I cannot turn back the clock. “Should-a would-s could-a� can be dangerous paths for us treated AN’ers to go down as we must keep moving forward and accept the treatment we had and make the best of our outcomes… otherwise we can get depressed about it.

I look at the cup as ½ full & not ½ empty. I am now single sided deaf, I have a crater in my skull, and I have a permanent asymmetrical smile however I do have great balance (after working at vestibular exercises), I have NO headaches, I can ride a bike with no hands and my last MRI showed the residual tumor that was left along my facial nerve has receded and was gone off the radar. There was both good and bad outcomes- but hey my tumor was a whopper size. What is amazing is that I am not on ANY meds… so I can take the Bell’s palsy as I know it could have been much worse for me. Cognitively I was not affected- and that meant more to me than anything. “If I could have done it again, knowing what I know now and what I experienced would I have done it differently?� YES.

But hey I have accepted this and I “keep moving forward�.

Your question is a valid one but for many patients this can be very painful to reflect and answer on if they had residual complications after their treatment.

Not all have great GK success stories and I had a fellow ANA member, visit my home who had the T/L years 9 years ago with no facial issues. She had re-growth and 2 years ago had GK and now is a 3/6 on the House Brackmann Facial nerve scale with obvious synkinesis. (Yet no facial issue prior to GK. ) I also know of another patient who had FSR at 2 cm and now is at 4+ cm waiting for surgery in her wheelchair as the FSR did not work.

You only want a GK surgeon who has a reputable track record as even this can have complications if not done with expertise and skill.

Read below for some positive stories

http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/default
&
http://www.stanfordhospital.com/search/PhysicianDetail?doc=2077

He has amazing success stories on our forum. Many fly out of state to see him and some from abroad.

http://anausa.org/forum/index.php?topic=894.0
http://anausa.org/forum/index.php?topic=5469.0
http://anausa.org/forum/index.php?topic=5105.0
http://anausa.org/forum/index.php?topic=5903.msg54753#msg54753
http://anausa.org/forum/index.php?topic=6063.msg58464#msg58464
http://anausa.org/forum/index.php?topic=5530.msg50571#msg50571


Their ENT dept is good too. My AN tumor was discovered way too late for me to qualify for Gamma Knife… however if I could turn back the clock and choose which route I would have gone "IF" my AN was discovered sooner- Dr. Chang’s office, there in California, would be the door I would walk through.

Daisy Head Mazy

[Nancy Drew]

Thanks for the posts.  I have a lot to think about and a lot more research to do.  I am hearing so many good things about Stanford so I will research there.  I have no idea what my insurance will say.  The treatment center here is suppose to be the best in Denver area so I am sure they would like for me to stay here.  But, I will evaluate when the time comes.  I should hear today or next week what the panel of docs recommend.  They do GK and surgery from what I am told.  However, I am not so sure about the CK center and their success rate.  Someone here on this site told me the center in Boulder was started by a Stanford doctor so it will be worth checking out.  Thanks again for valuable insights and the websites.  Nancy

[GRACE1]

Yes, I did extensive research on both procedures.  I came to the conclusion that GK was the route I was more comfortable with.  The staff and doctors had a lot to do with the decision - they were so caring.  Most of all I liked that it was a one-shot event.  GK has decades of documented results.  My husband is on disability and depends on me for a lot of things, so I went with GK because I felt it would give me the best outcome.  A better chance at saving your hearing is just that: chance.  My hearing loss was already in process before GK.  I am so blessed that hearing is the only problem I have had.  You just have to do your research and go with you gut feeling.  It is definitely confusing reading conflicting opinions.  I hope you can soon find peace with a decision.   

[Richey]

If I had it to do over again the first thing I would do is just wait for a while and see what happens with growth. My AN was 5x8 mm in the canal and my only symptom was balance issues.

While I was waiting I would have done more research on my options.

If I had to to some later because of growth I would still choose radiation over surgery but it would be a tough choice on which one to use but it would definitely be one that had a lot of experience.

Now the FACT is I don't have it to do over hopefully so I just have to make the best of what I have and be thankful that it was not worse. I'm deaf on one side but my balance is pretty good most of the time. I got to retire early and I see my new grandson a lot and I have a great wife who has been my biggest helper and GOD is still good.

And maybe Clemson will have a good year, cause that's what everyone said last year.

Goodnight all.