It’s hard to believe that a year has passed since I underwent CyberKnife at Stanford. Back then, I was so scared and worried about all the symptoms I might encounter after treatment as well as my future outcome. I was fairly jumping out of my skin on the drive up to Stanford!
Now, all of a sudden, here I am on the other side.
I had my one year MRI, hearing test, and follow-up appointments with Drs. Chang and Hancock at Stanford the end of last week.
MRI Results:When I met with Dr. Chang and Dr. Hancock, they both said my AN shrank! Additionally, it still had a fair amount of necrosis - but less of it than in October.
While meeting with Dr. Chang, he measured my October MRI versus my most recent. He said that in October, my AN measured approx. 27x27x29 and now in April it measures 25x23x25. Word.
When we went for my follow up in October, I was so relieved to learn the doctors were happy with my outcome thus far that I did not ask Dr. Chang to measure - he had told me no change in size, which was good enough for me! Now I see his measurements differ from what the radiologist reports have stated. I guess these things really do vary by the person doing the measuring! In any event, I am going to stick with Dr. Chang’s measurements, as he is the only constant - I don’t get the same radiologist every time.
Needless to say, I am so relieved and grateful. I realize there are years of check ups to go, but so far, so good
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Hearing test: The tonal average (that little grid thing) has stayed the same. But my word recognition has gone down a little. I hadn’t even noticed! Nonetheless, I hope and pray my hearing keeps still. Along those lines, about 2 weeks ago I got a hearing aid! It is an Oticon (thank you, insurance!!). It is very small and hardly noticeable. I am still in the adjustment stage, but it is already a help -- especially in noisy environments.
Side note about the MRI: Due to my being late (buying a dress! HA!) and the Ativan not ordered, I decided to grit out the MRI sans Ativan. I was successful in that I didn’t leap screaming from the machine. But oh boy did I want to. So - for anyone out there wondering if the Ativan really helps, yes, yes it does. I will never, ever do that again. Ever.
Symptoms: In my case, I have been a part of the majority of post-CK patients about which Drs. Chang and Hancock told me, which are those do not have an increase in symptoms that require medication or assistance of any kind.
I have not required medication of any kind (other than occasional Advil/Tylenol). I did have some little blips - but nothing lasted long or was life-affecting. I have been able to remain as active as ever. I am grateful to have had a fairly uneventful post-CK experience, and wish everyone reading the same.
Follow up: Dr. Chang said he usually does every 6 months in the first year, and then once a year after that (and then at some interval the time between MRIs becomes longer but to be honest I don’t remember!). So my next MRI will be April 2020. I have elected to do another hearing test in the fall with my audiologist here in LA - just to check on things, as there was a change in voice recognition.
I will 100% share my results April next year. Having this forum to rely on for information and support is invaluable. Certainly I will continue to avail myself of everyone's information and experience, as well as offer my own. So if I can help in any way, please DM/post any time
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Wishing everyone well,
Jessica
