ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Anomar11 on February 06, 2012, 08:02:25 pm
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Hello All,
Wanted to give an update to help others as my pattern was a little different from most. My AN did plump up and stay there for a couple of years as my signature dimensions indicate but has receeded at 3 yrs. The dimensions are as read by Dr. Chang. Interestingly, the local radio doc read my 3 year as 2.1 x 1.1 x 1.6. Goes to show the difference in interpretation as that's 4 mm difference for the middle number. I started having wonky head fairly significantly at month 4 until around month 20 when it became markedly better. I still have a few issues from time to time but nothing like it was and I don't think about it. I did have 2 bad bouts of vertigo and went on decadron for one at ~4 months. Had facial spasms starting at 6 months, ending ~12 or 13 months. I periodically still get a stab in my ear and hearing is markedly down. No big deal. I need to get a hearing test yet. Take care. Mona
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Mona ~
Thanks so much for sharing your CK update, complete with the issues that ultimately resolved for you. Best of luck as you continue to move forward.
Jim
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Did you have symptoms prior to GK?
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Sorry, cyber knife?
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Mona, thank you for sharing your progress with everyone here. Your report will give encouragement to other radiation patients whose tumors have swelled. That your AN finally shrank at year 3 gives hope to all that rebounds can happen that far out.
Who was the radio doc who reported tumor dimensions differing from Dr. Chang's assessment? Was it Dr. Scott Atlas by any chance? I have had major problems with his so-called work at Stanford. In three consecutive reports issued by Atlas over the course of a year, he consistently cited flawed data in his MRI reports: tumor dimensions wrong by sometimes over 50%, misstating my age and treatment dates, etc. In one report, it was obvious that he was looking at MRIs for a totally different patient! I had to file requests for amendments to those reports in order to get them corrected. Atlas' work is a black mark against the otherwise stellar reputation for Stanford.
Dr. Chang never reads radiologists' MRI reports; he always makes the tumor measurements himself. I would trust his measurements. As an aside, my own measurements (reviewing the MRIs myself) have always agreed with those made by Dr. Chang with at most 1mm difference (insignificant, and explained by the arbitrary angles of measurement made along oblique axes).
After complaining about Atlas' work on my last MRI report, I was told I could request another radiologist to read my future MRIs, which is what I plan to do.
Anyway, congrats on your AN shrinking. I'm sure that's a huge relief.
Best wishes,
TW
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Trindy, my prediagnosis symptoms were hearing loss and a very stuffed feeling in my ear.
Thanks, Jim and TW. It was a relief indeed. I was sweating the 3 yr. After the first year, my local ENT who diagnosed this and doesn't believe in radiation, (like many) wrote a letter to my primary local MD stating I needed to have surgery soon as this was likely not going to work. Thankfully, after learning so much from this forum, I simply stopped having any reports sent to him, took it with a grain of salt, educated my primary doctor that this was within the realm of normal. TW, the radiologist who read it differently was the one from my hometown in Michigan. Either measurement was ok with me as they were both smaller.