Got diagnosed today, really scared.

[luckyone]

Well, I am going with GK on 4/3... I tried to get my insurance UnitedHealthcare to approve a second opinion out of my network (I have HMO) and they put me through so many loops, it's probably made my tumor grow another 25% in one day.  So lesson learned, get another insurance other than UnitedHealthcare, and hope that GK helps me.  I did reach out to Dr Chang from Stanford to get info on CK and he actually answered all my questions... I would love to do CK but due to the circumnstances and the fact that I am already stressing out about this to have to deal with insurance, I have no choice.

[WilliamS]

I found out about mine the middle of January and had GK three days ago. (mine was 3.3 cm) I talked with someone who previously had GK and they described it as a nonevent.  All I can say is that they were right.  In at 6AM, fed me a nice breakfast at 11:30 AM and on my way back to the hotel by noon. 

[luckyone]

Thank you WilliamS... did you consider CK at all? 

[Tisha]

Hi,

My understanding is that one of the differences in choosing CK over GK is hearing preservation.  If you've lost all or most of your hearing, than the one-time radiation treatment is definitely something to consider.  But if you have your hearing, CK statistically will help you save it more than GK.  Stanford helped me out with my insurance, they should be able to check on everything for you.

Your AN is small...please don't rush into this.  I'd call Stanford again.  Did you do the research in hearing preservation between the 2?  That was very important to me.

Tisha

[WilliamS]

I did consider CK.  I chose GK because Dr. Lunsford at the University of Pittsburgh Medical Center was the only one that I found that had a track record of success with tumors that were between 3 and 4 cm.  For what it is worth, I think the UPMC was a great choice.  My wife and I traveled from Florida to Pittsburgh for the surgery and we both believe it was worth the trip.  They have done in excess of 2,000 GK surgeries since the late 80s and they did 3 the morning that I was there.  I would describe it as a very professional, very well run group.  They clearly have a great deal of confidence in what they are doing and what they can accomplish.

[lrobie]

WilliamsS,

Did you send your records to Dr. Lunsford for an opinion?  Because the local neurosurgeon is recommending radiation, he suggested I consult with Dr. Lunsford.  I called their office and because all my MRI's and reports were done at UPMC, they told me he would look things over and send a letter with his recommendations.  I'm still waiting and it's been a few weeks.

Lisa

[WilliamS]

I did send my MRI and records to Dr. Lunsford.  I received a letter from him in about two weeks.  You might call his administrative assistant, Kelly Powell at 414 647 7744.  You could also email her at powellkc@upmc.edu.  I found her to be very responsive.  The doctor has a very busy schedule and I know he was out of town at the beginnine of the month and will be again this next week.  I found, however, that when we you are on his schedule, he gives you the time and attention you need.

[Bonnie B.]

I felt NO pain during the actual GK treatment.   They had me bring in my favorite CDs which played the entire time I was having the GK treatment.  I had actually time the CDs so, I knew how long I was actually in the GK machine.

[lrobie]

Bill,

Thank you for the contact information.  I still haven't heard anything.

Lisa

[WilliamS]

Your welcome.  However, I typed the area code wrong.  It is 412 NOT 414.

[lrobie]

Because I live in Erie, PA, I knew the area code.  I sent an email and Kelly called me within five minutes.  I guess there was some confusion.  In case anyone is curious, Kelly, Dr. Lunsford's assistant told me that they do not recommend Cyberknife.  She said Gamma Knife is more accurate.  I can't say either way.  But again, as we all know, the doctors recommend the type of treatment that they do.

Lisa

[luckyone]

Got GK today by Dr. Duma at Hoag in Newport Beach, CA.  The entire staff was amazing!  Thanks to my brother for being there with me.  I have to say that the head brace was a bit uncomfortable once you are on the GammaKnife table.  For those considering GK, make sure when they position you on the table and they ask if you are comfortable, to have them adjust the table various times to find the sweet spot.  I was in the GK unit for 42 mins, and I almost felt like giving up due to my head feeling like it was going to come off my body.  Being the chicken sh*t that I am, I am worried about one thing the doctor said.  I had my MRI three weeks ago, and compared to today's, he said it grew.  Now, I know that it is supposed to grow, but it seems like it grew a lot in 3 weeks.  Before this MRI, he had said the treatment would take 15 mins, but it ended up at 42 mins.  Also, they kept saying before the MRI I'd have to come back in 3 months for a follow up MRI, but the doctor then came at the end and changed it to 2 months.  So now my head is trying to make sense of this, thinking it's a lot worse than previously thought?  It's become malignant?  I don't know why I am being so paranoid, but I just don't like being "special" and that they are deviating from the norm.  Anyone have any opinions?  By the way, Dr Duma was incredible, I highly recommend him.  Dr Chen also was great, both taking all the time in the world to answer all my questions even with others waiting to be treated. 

[Jim Scott]

Lucky ~

Congratulations on completing the GK treatment. 

I won't speculate on the reason for a longer GK session or the shorter follow-up time frame except to mention that the tumor's rapid growth may be a factor.  This is a question for Dr. Duma.  Although anything is possible, the chances of an acoustic neuroma being found malignant is infinitesimal and I wouldn't worry about that.  Again, your doctor would be the source for credible answers to these questions.

Jim