Author Topic: 3 neurosurgeons pressuring me to get CK during pandemic! 1 said I could wait 20.  (Read 3014 times)

Cheryl R

  • Hero Member
  • *****
  • Posts: 1804
That dr doesn't have a clue about ANs.          That is an issues with many many ANers,         Look for a neurotologist.           Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

ivana

  • New Member
  • *
  • Posts: 6
Hi all,

Had to chime in since I am a LONG CK AN'er.... just celebrated 14 years post-CK. :)

BigJoe, sounds like you are doing the proper homework to see what will work best for you.  Typically... your size AN is borderline small to medium (I believe medium range starts at 1.5mm.... any over 3cm is deemed large, but again, that is the last time I checked...) and, where your symptoms are there but tolerable, I would continue to peruse the discussion forum for specifics. There is the "Search" option on the home page to see if you can locate specific discussions regarding CK.... re: House Ear Clinic/Keck (Dr. Rick Friedman) and additional wealth of information.

For me, my AN was smaller than yours (1cm).  My neurosurgeon did my baseline MRI, then 6 mos later, we did another so we could do "comparison" to see if it was doing anything. In my case, it was. Like you, I did my research here on the forums... and also took advantage of the ANA Peer to Peer talk list (phone/email). For me and my particular situation, CK was offered here in Boston and that is the route I took. For me, it was highly successful (I can say this 14 years later!) and yet, as we all know, "individual results may vary."

Suggestion ... This Sunday, May 3 from 5p-6p EDT, the ANA is hosting an upcoming virtual event, where I will be co-hosting with the ANA and Mark McLaren, who was my mentor in my AN journey. I believe Mark is approximately 20 years post CK.

Participants need to register with the ANA for access to this discussion.  It may be worth checking out as you are doing your research and have questions.

https://www.anausa.org/programs/support-groups/upcoming-events

Regardless if microsurgical or radiation, know that we are here for you! :)  Hope to have you join us this Sunday.

All, be well... stay safe!

Phyl
Hi Phyl!
I am 37 years old musician, sound producer, and preparing for CK or GK. I am in big trouble deciding what is right choice for me. My hearing is everything in my life and I still hold on good Grade 1 hearing, with bad tinnitus in AN ear. It is still small 9x8x6, but causes symptoms like ear pain, face sensations, burning and twitching, fullness of ear and in general some weird feeling. I am feeling CK more than GK because less traumatic treatment, but all doctors who do GK told me the same " it is not precise enough for brain procedures and will damage surrounding tissues". When I say doctors I mean big names like Lunsford etc. That scares me. Please tell me your story, how is your hearing today? Did you have any problems? Thank you so much! Means a lot! Ivana

 


anything