few days post-CK

[jak1]

I am a rather recent lurker as I was diagnosed only 5 weeks ago.  I read, researched, met with many docs, interviewed patients, etc.. After all my research I chose to go to Stanford last week to Dr. Chang for a CK treatment.  My AN is rt side 2.8 cm at its largest, 2.8 x 2.4 x 1.9 and compressing the brain stem.  Moreover, calcified indication on MRI may be a hint of a possible internal hemorrhage. I had 68% comprehension rt ear, massive headaches, tinnitus and weak balance before the treatment.

The team at Stanford is AMAZING! We flew from NY to San Fran and they made the whole process very easy.

Day 1) Consult with Dr. Chang (Neuro) and Dr. Hancock (Radio) to discuss treatment outline, side effects, examine symptoms, etc.  Then detailed focus 10 minute MRI of tumor area with contrast.

Day 2) Built the mask for the CK table. Next, CT scan with contrast.



Day 3) This would be my first day of CK and I met the robot, lab techs, dr., etc.  Then I was strapped in and the music started.  It took about 40 minutes as the robot moved around me, I did not really feel anything.  They gave me 1 pill for nausea and 1 steroid for swelling and I was ready to leave.  I did notice that my balance had really diminished even more if that is possible.  I went back to the hotel to play with my son and hang out with my family.





Day 4) Back to Stanford to meet the robot again.  This time I did feel a metal taste in my mouth about half way through.  Again treatment was about 40 minutes and continued to diminish my balance.  I took the same 2 pills after treatment.

Day 5) Treatment was 40 minutes as usual.  I got to keep my mask as a souvenir.  This time I felt very fatigued, tired and disoriented.  I rested mostly until the next day as I had a 6 hour flight home.

Back in NY.  I have been wobbling and sleeping for 3 days now getting my strength back a bit today.  I still have headaches (rear of skull and behind rt eye), tinnitus volume changes at time, i will start vestibular therapy soon for balance, hearing remains about the same from before the procedure, ear still feels full, a slight numb feeling at times when I swallow.. that is about it.. I went for a walk today, we live in SoHo.. people have NO patience here and the pace of life is fast.. so, wobbling down the street at .5 mph is a bit tough..

I am still happy with my decision so far.  I go far an MRI and audiogram in 6 months.  I will keep you all posted of my progress.  I was told by all NYC neurosurgeons to have surgery and I was still unsure when I got to California.  However, spending a few hours at Stanford changed my mind and made me comfortable.  They communicate extremely well and the facilities are fantastic.  I spoke to a few patients in the waiting room that had been to Stanford many times and they all had glowing remarks. 

Thanks again to all who post on this forum as it really was a great resource to educate myself.  I wish you all health and happiness. .

Regards,

-JAK

[Jim Scott]

Jak ~

Thanks for your CK account and your kind words for the ANA website forums.  I'm delighted to learn that we've been helpful to you.  We know that some AN patients prefer to 'lurk' (read but not post) and we're fine with that.  I appreciate both your text and the photos.  Dr. Chang and the CK team at Stanford have an excellent reputation around here and your recent experience appears to continue to validate that.  We're very happy for you and trust that your recovery will be rapid and complete. 

Jim

[leapyrtwins]

Jak -

congratulations and thanks for posting.

I've always heard good things about Dr. Chang and the team @ Stanford.

Thanks for verifying them,

Jan

[ppearl214]

Jak

Thanks for sharing these pictures and the journey, you "toastie postie"   Congrats on completing CK!  Sending wellness wishes your way! 

Phyl

[Phillies]

Thanks for sharing!   Did Dr. Chang expect those issues that you are currently having? And did Dr. Chang expect before hand that you might need vestibular therapy?  Did he say how soon those symptoms might last?

[jak1]

Phillies,

Yes, these issues were all explained by Dr. Chang.  I am a bit fatigued but, he said that would happen in some cases.. I was made aware that I would need vestibular therapy as my balance got really bad before the procedure.. and even a bit worse afterwards.. My tumor showed calcified signs near the center possibly indicating a hemorrhage at some point which is may have brought on a very sudden increase in my symptoms before treatment.  I did have 2 surgeons tell me that I would have better balance results from surgery as they could clip 1 vestibular nerve and the other side would compensate with no random noise.  However, there were many other trade-offs to receive this benefit of surgery over radiosurgery.

I am not sure how long the symptoms will last.. I still have headaches as I did before the procedure.. hearing, tinnitus and balance all about the same before as after.. Each person's body responds differently to radiation so hard to tell what my recovery might look like.. but, I would gladly accept this longer and slightly more uncertain recovery period than have to deal with some of the possible side affects of surgery if I did not have to do so. 

I will keep you all posted after my 6 month MRI and audiogram..

-JAK