Watch and Wait > For those in the 'watch and wait' status

3 neurosurgeons pressuring me to get CK during pandemic! 1 said I could wait 20.

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ppearl214:
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

notaclone13:
Hi Phyllis, nice to see your post. You remain a hero and trailblazer to all of us on this site. Sharing of your CK experience has provided encouragement to so many of us. Glad to hear you are doing well 14 years on. Thank you for  all the wisdom you provide.

BigJoeBass48:
PPearl 214 and others who have replied to my post I just wanted to say "Thank You!" and I can see why PPearl 214 is a hero member. I checked on the forum discussion for 5-3-2020 and it is all filled up but I might make the one on 5-7-2020.

I know 1 woman who had CK done for "Trigeminal Neuralgia" which I also had after a botched root canal on 10-12-2016. 18 months on heavy opiates. I finally had a "nerve block" on 4-24-2017 which set off this horrible tinnitus. But 3 months before the nerve block I was already diagnosed with the 0.8 AN (at that time) which has grown to 1.4x1.6x1.6 so AN was already present BEFORE tinnitus. But my Head/Neck doc at Kaiser insists the AN is 100% responsible for the Tinnitus. No way! Right?


"Bushwoman" had CK on Trigeminal nerve. 5 months post CK she had horrific facial pain and tinnitus, unable to sleep, some loss of vision in right cornea, Feelings of something crawling or tugging on her face, drooling after drinking water, unable to kiss, she sounded almost suicidal in her post back in 2016 which I still have and showed to 1 CK doc which irritated him immensely. I just don't need this to happen to me. Especially now with this Killer Pandemic.

BigJoeBass48:
For some reason, the site is not letting me post a "New Topic"....I have not been on since May 1st or so, today is 9-27-20. I have been diagnosed with pretty serious "VERTIGO" which I have never had before, when I first get up or exercise with back on floor I am off balance, I go into a REM state while awake sometimes.. Never heard of it except for an Alfred Hitchcock movie. I've had 1 serious fall in June but my hip and knee already needed replacement which Kaiser won't do because of the Pandemic. Excruciating pain from hip to toes in my right leg, pain meds worthless.

I have also been having "pulsating" or "pulsatile" tinnitus as I heard a member describe hers. I bought a "wind tunnel" fan which worked ok at first. When I leave it on when I go to bed now the pulses are screeching loud and keep me awake until I turn the fan off. If I leave "white noise" on through blue tooth I cannot get to sleep.

I have spoken with 4 brain and CK surgeons. 1 CK doc told me I could live 20 more years w/o touching it. 2 said I could wait awhile. But the main guy is almost in a panic trying to get me to go for CK. 1.6x1.4x1.4? I already know he is gonna go into hysterics as to how this Vertigo and pulsating tinnitus is directly related to the AN. I was all pumped up to go for CK in March until this lousy Pandemic hit. I thought Pandemic was way more serious than it "currently" is. ANY ADVICE FRIENDS?

CoopCrafts:
Hi Joe, vertigo is the WORST.  I'm sorry you're going through it.  Has your doctor tried steroids with you yet?  For me, it really helped with symptoms, including vertigo.  I know your post is a little old, I wondered how you're doing now?

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