ANA Discussion Forum

Post-Treatment => Post-Treatment => Topic started by: TJ on September 25, 2011, 05:50:05 pm

Title: Question for those that have had CyberKnife
Post by: TJ on September 25, 2011, 05:50:05 pm
I have a question to those that have gone though the CyberKnife experience.  I had CyberKnife done 10 months ago for my AN that was 1 CM.  I know that each person has a different experience but here is my question.  About two months ago the tinnitus went from annoying to a SCREAMING high pitch with a noise in the background that sounds like a buy signal on the phone.  Has anyone experienced an increase of tinnitus like this and did it go away with time?  I go for my one year MRI in November and I am truly hoping this is just part of the dying process.  I was handling the tinnitus pretty well until it started going crazy on me.  Now I have a hard time going to sleep.  I have tried to mask it but th tinnitus is to loud.

Any information or suggestions would be very helpful.

TJ
Title: Re: Question for those that have had CyberKnife
Post by: ppearl214 on September 26, 2011, 04:05:48 am
TJ

Short answer:  yes

You are within that time frame that things "could" (but not always) crop up (ie: 3-18 mos).  Suggestion is to note it to your  CK dr (ie: neuro-oncologist) and see if they recommend a short course (ie: 2 wks or less) of anti-inflammatories to see if it helps to calm it down.

I am certainly not a dr and only play one on tv, but have seen this question come up many times over the years and have had this noted by many.

hang in there!
Phyl
Title: Re: Question for those that have had CyberKnife
Post by: JLR on September 26, 2011, 04:09:07 am
Hi TJ,  I am nearly 10 months post CK and for the past couple of months the tinnitus has gotten worst.  In fact it was so distracting that even making the radio/tv louder didn't help. However, in the past week, it has calmed down a bit. Still there ( my understanding is it never goes away) but a bit more tolerable. I am a bit wonkier ( a word?) then before but I attribute it all to the radiation doing its job.  I do tend to weave when I walk and I'm hoping that stops soon. I think CK is more of a process than I had anticipated but thankfully this site is around to let us know we are not alone in this.  Hope your noise calms down.  Joan
Title: Re: Question for those that have had CyberKnife
Post by: TJ on September 27, 2011, 02:33:16 pm
Thank to both of you for responding to my question.  I am not sure why the post was moved by someone to another section.  We are all part of an ongoing process and I was just asking a question as many have done without it being moved.  I have some hope that the tinnitus will calm down.

Thanks Again

TJ
Title: Re: Question for those that have had CyberKnife
Post by: Jim Scott on September 27, 2011, 02:50:54 pm
TJ ~

Phyl moved your post (as well as responding to it) and I'm sure she did so because you were asking a question that clearly falls into the 'post-treatment' category.  The 'radiation' section is used primarily by those seeking information prior to electing radiation treatment.  The various sections are there to eliminate viewers having to scroll through long lists of topics and posts that they have no need of as they try to find something they can use.  The system works fairly well and was structured on the suggestions of our members.  I can assure you that Phyl was simply placing your message where it was appropriate and where it would be likely to receive the most views.  I trust that you'll understand the reason your post was moved and know that it wasn't arbitrary.  I also hope that you'll soon experience some reduction in the level of your tinnitus as your irradiated AN continues to die. 

Jim
Title: Re: Question for those that have had CyberKnife
Post by: ppearl214 on September 28, 2011, 03:31:26 am
TJ ~

Phyl moved your post (as well as responding to it) and I'm sure she did so because you were asking a question that clearly falls into the 'post-treatment' category.  The 'radiation' section is used primarily by those seeking information prior to electing radiation treatment.  The various sections are there to eliminate viewers having to scroll through long lists of topics and posts that they have no need of as they try to find something they can use.  The system works fairly well and was structured on the suggestions of our members.  I can assure you that Phyl was simply placing your message where it was appropriate and where it would be likely to receive the most views.  I trust that you'll understand the reason your post was moved and know that it wasn't arbitrary.  I also hope that you'll soon experience some reduction in the level of your tinnitus as your irradiated AN continues to die. 

Jim
Thanks Jim for clarifying.  My bad for not elaborating at time of thread move. :-[
Title: Re: Question for those that have had CyberKnife
Post by: Tumbleweed on September 28, 2011, 06:16:14 pm
Hi, TJ:

You've probably seen me and other members suggest this before but if not, it bears repeating:
You may find that you can reduce the intensity of your tinnitus by avoiding refined sugar, eating oily foods in strict moderation, drinking plenty of fluids and getting lots of sleep/rest. Phyl's suggestion to take anti-inflammatories for a short while is also a great idea. During the worst part of my recovery from CK (the first six months), I also found that eating steamed leafy green vegies (high in vitamin A) and baked salmon (high in omaga-3 fatty acids, which are anti-inflammatory, and vitamin B5, which protects nerves from degeneration) helped me immensely.

I hope you feel better soon.

Best wishes,
TW