Author Topic: CK post symptoms  (Read 5391 times)

kathibridges

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CK post symptoms
« on: March 24, 2015, 02:33:52 pm »
I’m new to this forum and am interested in feedback on post CK treatment symptoms. I had 3 CK treatments mid-January 2015. Not that I had good hearing to begin with (severe loss in left ear – some loss in right ear) but I immediately experienced a significant decline in hearing on the AN side (right side, yes best hearing ear) especially with words. I now have a LOUD ringing in both ears as well as “music” predominately in the right ear. I have intermittent headaches every day lasting from an hour to all day. I get dizzy when I move my head, walk or stand which in turn makes me nauseous. Is all of this common to CK treatments (or any other form of radiation)? Does anyone have issues driving? Do these symptoms subside with time? I am a systems analyst and all of this is affecting my work - hindering my ability to focus and my ability to hear people talking. I would sincerely appreciate any feedback. Thanks.

PaulW

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Re: CK post symptoms
« Reply #1 on: March 25, 2015, 06:48:46 am »
I had Cyberknife single session..
My hearing got worse within a few days but only my bad ear, balance got worse too... got crazy tinnitus after about 2 weeks... rock concert loud for about 2-3 hours then it went away, It seems like every day I had two out of three symptoms.... Hearing Balance or Tinnitus and it varied on a 10-12 day cycle.... Found it very hard to concentrate.....Took about 5 months to start to feel normal... Thought I was normal again at 13 months.... but kept on feeling better and better. It takes time probably 24-36 months before you feel really good...
For me i think it took 6 months before I felt better than pre-treatment... These days I have no issues except slight hearing loss in one ear...
My hearing has improved and deteriorated a few times after CK. Hearing is now pretty stable and I still have reasonable hearing in my AN ear, and that 5 Years after CK. Dont use a hearing aid dont need one, but have lost some high frequencies 
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

john1455

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Re: CK post symptoms
« Reply #2 on: March 26, 2015, 01:28:25 am »
I too had 3 sessions of CyberKnife and I am a little over a year postop. The symptoms you described are all within what is to be expected or considered "normal" following CK treatment. For the first few months after my CK, all my symptoms (disequilibrium, dizziness, tinnitus) worsen a little but not enough to impact me significantly. The ringing in my AN ear got worse and at times was roaring but that subsided over time (the roaring, not the ringing). My hearing did not get any worse and, if anything, is a tad better! When I turn my head quickly I get dizzy. I never had headaches that can be attributed to CK. I do not have any problems concentrating but, for some strange reason, I have problems with numbers (never had that problem before). For example, when I look at numbers that are more than 2 digits, I often get the first digit wrong unless I really concentrate and stare at it. My hearing in the AN ear was about 70% gone before CK and that remains almost the same so I do have problems hearing others unless I aim my good ear towards the sound source. As for driving, I get just a little disoriented when I have to look over my shoulder to I back up. Other than that, my driving has been minimally affected. As you may know, any symptoms you had prior to CK will likely NOT go away but remain with you.
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

kathibridges

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Re: CK post symptoms
« Reply #3 on: March 26, 2015, 08:03:00 am »
Thanks so much PaulW and john1455 for taking the time to respond. I am most grateful for the feedback. It's "calming" (for lack of a better word) to know I am on course.

darkorchid12

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Re: CK post symptoms
« Reply #4 on: March 26, 2015, 11:25:31 am »
I am so pleased to have found this forum. I am heading off to Stanford in two weeks for Ck treatment. It has been so important in my process to read not only medical journals, but the realities and after effects than can occur.  I started out so scared and completely confused about what to do.  Now I am still a bit scared, but much more clam and confident that I will be receiving excellent care and hopefully a great result.  I am crossing fingers and toes!
15 mm x 10 mm x9 mm 12/18/14
Working on possible CyberKnife @ Stanford
Diagnosed on incidental finding.

darkorchid12

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Re: CK post symptoms
« Reply #5 on: April 21, 2015, 01:51:13 pm »
Well I am back from Stanford.  Folks there are really awesome. Kind, thoughtful, compassionate.  The treatment was relatively easy. My only glitch is halfway through the last day my nose got itchy.  Hard to get to with your arms pinioned and covered with a mask!  Overall glad I have done this.  Don't know what the future holds but I hope this will resolve in a timely fashion.

Aftereffects to date include a couple of really wonky headaches. Head hurts and burn all over.  Plus absolutely drained.

Will be going back in six months for follow up MRI.

Good healing to all!
15 mm x 10 mm x9 mm 12/18/14
Working on possible CyberKnife @ Stanford
Diagnosed on incidental finding.

sunny

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Re: CK post symptoms
« Reply #6 on: June 20, 2015, 12:23:10 pm »
Thank you PaulW and john1455 for sharing your experiences and expectations post-CK.
It gives me a good sense of what could be ahead for me, and seeing your recovery is encouraging.

kathibridges, I hope you are beginning to feel better since your January CK.

darkorchid, I have been following your posts and have just returned from CK treatment at Stanford myself.
Thank you for taking the time to post your thoughts and experiences. I appreciate it.

I wish you all good health.
sunny


Right side A.N.  (11 x 9 x 5)
Symptoms -- 2/18/15 sudden partial hearing loss and constant tinnitus
Diagnosed -- 4/24/15 by my ENT with MRI
Treatment -- 6/17/15 first of three CK treatments @ Stanford with Drs. Chang and Hancock
Treatment Completed! -- 6/19/19

CattAN

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Re: CK post symptoms
« Reply #7 on: July 01, 2015, 08:08:28 pm »
Can anyone please tell me if radiation affects the "good" ear.  All this time I was under the impression that it is the AN ear hearing that can be adversely affected by CK. But it seems that Arc radiation used in radiotherapy moves around the head, so potentially the "good" ear can be affected too. 
Right side AN diagnosed 6/7/2015
12x11 mm
Swelling to 15x13 mm @ six months
SSD, tinnitus, some balance issues....
~~~~~~~~~
Stanford CyberKnife1 9/2/2015 (single fraction)
Dr. Steven Chang & Dr. Iris Gibbs

PaulW

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Re: CK post symptoms
« Reply #8 on: July 03, 2015, 12:01:35 am »
Radiation treatment for an AN should not affect the good ear.
The radiation dose received by your good ear is low, it should not be of concern...
Speak to your doctor if you have any doubts of course..
 
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!