Author Topic: 18 month check up after ck  (Read 3216 times)


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18 month check up after ck
« on: June 10, 2010, 11:28:24 am »
I had my 18 month check up - after CK yesterday.... and I am smiling.

I changed doctors ----  I emailed Dr Medbery of the cyberknife forum and asked for an office visit.  He reviewed my records and I had an office visit 2 months ago.  He treated me like a human and he did not act like a gift from the gods.  He explained stuff like what was done before CK in Tulsa.  I left knowing that my hearing is shot, and having talked about balance, headaches, and a tingling in my face. 

After the initial visit, i asked that he conduct the follow up rather than to return to the treating doctors.  I told the local doctors that I was going elsewhere when their staff called to schedule a follow up.

So i had a MRI and took the disks to him yesterday for the 18 month visit.  He measured the tumor and says that i appears to have shrunk in size and it is dieing!!!!  We talked about the side affects and decided to do this again in 6 months.

I remember a posting about traveling if necessary to get treated.  To go to a center of excellence for the best care.  I am there now - driving 100 miles for the visits - wished that I Had done it to get the treatments. 

i have learned.  and i have lost the respect for some medical professionals.

Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009


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Re: 18 month check up after ck
« Reply #1 on: June 10, 2010, 11:31:56 am »
Great news!  Lots of positive stuff here today, loving it!
Take care and I'm happy you found "human" Dr's  ;D
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt


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Re: 18 month check up after ck
« Reply #2 on: June 10, 2010, 12:43:24 pm »
Carter -

I just LOVE doctors who don't act like they are gifts from the Gods - and fortunately I have a few of them.  My neurotologist is at one of the centers of excellence, too.

Glad to hear things are going well and that Dr. Medbery treated you right.

Congrats on the necrosis.  Party on!

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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Re: 18 month check up after ck
« Reply #3 on: June 10, 2010, 11:42:40 pm »
Hey, Carter! It sounds like you are doing GREAT!

Good job, switching doctors. It's worth travelling to have the best. After all, what's more important than your health?

Anyway, congrats on the shrinkage and necrosis. CK is amazing, dontcha think? Best wishes for continued healing.

L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Jim Scott

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Re: 18 month check up after ck
« Reply #4 on: June 11, 2010, 01:13:29 pm »
Carter ~

Lessons learned are often from hard experience but I'm pleased to read that you've found a good doctor that didn't develop the god complex.  I've found that often the best doctors are self-effacing and compassionate with their patients, so I have no patience for the arrogant 'doing you a favor' attitude some physicians exhibit.  Fortunately, I encountered the preferrred type of doctors all along my AN journey and I'm eternally grateful for that.   

My congratulations on the tumor necrosis and shrinkage.  Things are definitely looking up! 

4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.


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Re: 18 month check up after ck
« Reply #5 on: June 12, 2010, 08:07:22 pm »

I'm glad you found a doctor you like.  I work in healthcare.  Many doctors have that arrogant attitude, and you wonder if they got into medicine to help people.  I do think in this day of increased rules and regs and a sue-happy public, it has become more difficult for doctors.  It is always so great to run into someone like Medbery.  I think what he and the other MD's are doing by giving time to the CK forum is absolutely wonderful.  He helped me a great deal when I was dx.  For you traveling 100 miles is worth it for the peace of mind.  I had to travel for my treatment and was debating going there or Stanford.  We decided on Stanford, because it was Nov, nicer in California and we could do a little bit of sightseeing in the San Franciso area.   Congratulations on the tumor dying.  Mona
L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9


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Re: 18 month check up after ck
« Reply #6 on: June 13, 2010, 05:20:52 am »
I understand traveling for treatment.  Mass General was an 80 mile round trip for me daily for 6 weeks.  I have absolutely no regret.  Best thing I ever did for myself!
Proton Radiation for my hemangioma at MGH December 2009.  Hearing has improved.  Doing great!


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Re: 18 month check up after ck
« Reply #7 on: July 07, 2010, 05:56:09 am »
Hi Carter,

Congrats!  So glad to hear things are stable for you and tumor is dying, YEAAAAAA!  :D

On traveling for treatment - yes,i do that too.  My annual MRI takes me over 100 miles, but worth every penny.
Doctors are caring and results are same day, reviewed same day, no waiting.
Now - on the flip side - at my last visit, i had a resident trying to convince me surgery was a REALLY good option for me.
I e-mail the doctor and told him having an AN was hard enough, lots of emotions, etc., and would he please let him know?
I suggested his resident read on this Forum and he said he forwarded the suggestion.
My hope is the resident really IS reading on the forum.

Take care and may you have continued wellness!

Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W