ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Anomar11 on January 27, 2013, 06:38:55 pm
-
Hi Everyone,
Wanted to give update for year four. The booger continues to shrink and I am grateful. Always stressful at MRI time, but I wasn't as worried this year as last. I had swelling which continued at 2 year check up, so I was nervous at year 3 (last year). As my signature shows, it did shrink at year 3. Now at yr. 4 it's smaller than diagnosis (1.6 x 1.1 x 1.1). I continue to have infrequent episodes of dizziness sometimes vomiting - often brought on in a store. I had these prior to diagnosis and Dr. Chang said symptoms prior to diagnosis may continue so I don't get too upset. Up until about 6 months ago, I would periodically get hard stabbing pains in my ear that sometimes woke me up. I went through some bad "wonky head" for ~18 months starting at 4 months post CK that I thought would never leave. Slowly but surely this got better. I also had 2-3 bad vertigo episodes that put me down in the early days for which I took steroids. Had hemifacial spasms for 6 months. Now I'm left with ongoing tinnitus, which I'm able to ignore most days, and I'm a little "off balance" some days. Overall I'm doing well, and am very grateful and would do radiosurgery again in a heartbeat (CK or GK). I did not follow the "usual" pattern for shrinkage (if there is such a thing), and I hope my story can help those who are trying to be patient waiting for results after having RS. I will always be grateful for this board, especially those of you who continue to do this work. Please don't hesitate to PM me if I can be of help. Take Care. Mona
-
Mona:
We are always glad to be well-informed and know others did well with Cyberknife. I had Dr. Gibbs, also and thought she was wonderful.
Congratulations, getting to this point. I felt like my head was on fire if the sunlight was exposed to my hair. (quite sometime after the C.K.)
The tennitus is very bad most of the time with me however, I'm getting by. (can't be very social as, it's way too exhausting, though)
Pal
-
Congrats on your outcome and thanks for posting updates!
-
Congrats.
You put me at ease some. I had cyberknife after my started growing back, 6 months swelling (which I was told was normal) 1 year still was swelling and they were going to watch, so I am up for another MRI soon which will be 1.5 years and nervous but after you said two years for yours I feel some what better. I know my body on anything it usually take longer then others so I will try to keep my chin up. I had an operation first because they said it was to big for radiation. I am just glad I am a live and kicking. Thanks
-
Mona
Congrats to you, you PostieToastie! :) I am approaching my 7 years :o post-CK and hoping that my success helps you and others! As we have learned here over time, for any radio-patient, it's usually the first couple of years that things can crop up, including the edema/swelling. For me, I found that these things did crop up during that timeframe yet........ I can now report, doing fine, life has moved on and hanging tough. Now, as we know, this is not the case for many and "individual results may vary" so here's hoping that you follow on this same wellness path.
Continued wellness wishes to you (and all!)
Phyl
-
I'm 22 months post CK fir a 2.3 cm left AN. the worst symptom is the "wonkiness" which started 4 months post and continues. Now at 22 months I have exacerbation of the "bobble head" feeling similar to what you described. I have a medical background but don't understand the etiology this far down the road. Have you been told that it is swelling or inflammation this Kate after Tx? You said that it did subside after 18 months so that gives me hope.
-
Hi Mona,
If I leave W & W, then it is CK for me. Thanks for the posting, it gives us some hope that eventually things may turn better.
Be well,
Rod
-
I haven't been on the board in quite a while, so thanks to all for the well wishes. Bob, to answer your question, I just assumed it was due to swelling, and yes it lasted a good 18 mos or possibly more so keep the faith. I just started noticing more and more good days gradually. I walked regularly doing head and eye movement to try to help my balance. Most of the time I'm fine now. Last summer I had a real bad bout of vertigo out of nowhere, vomiting bad that lasted a couple of days. The way I understand it that balance nerve will always be a weakened spot or achiles heel for us due to the radiation and having a dead tumor sitting on board. I hope your bobble head starts to improve soon.