Cyberknife - Post Treatment symptoms

[jrhafer]

Hello all,

I am a new poster and I recently had Cyberknife for my 4.5mm AN.  It has now been almost 4 weeks since my treatment ended and I have one disappoining after effect, - new tinnitus.

Within 24 hours after my third and final day of Cyberknife, I developed a severe high-pitched tinnitus in my treated ear.  It sounds like that which can come from a TV set's high voltage rectifier from behind a TV set.  It is very discouraging and I can not mask it.  I did have tinnitus before treatment, but it was a tone and I could mask it.  I still have this souund and it has not changed.  My hearing is also still normal in my AN ear as I have not had any hearing loss from my AN yet.

Has anyone else had Cyberknife treatment for their AN and what post-treatment effects, if any did you have?  If so, did they eventually subside in time.  I am hoping this new tinnitus will calm down in time and will stabilize.

Any replies or comments will be greatly appreciated.

Thank you.

John

[GM]

John,

I too am a radiation patient...but i took the Gamma Knife route.  Tinnitus is EXTREMELY common for those of us with AN's.  The good news is that the tinnitus usually has good days and bad.  Tonight, my left ear is a bit loud.  But, I did over do it today on caffeine and stress.  So it's partially my fault.  You could have seen an increase due some minor swelling in your ear due to the radiation treatment.  Try to see your ent doc and see if you can get on a steroid (Prednisone).  Great stuff.  I am currently on it due to a clogged ear event in my AN ear.  Caution that it may make you a bit nervous and jittery.   On my bad days I count my blessing that 1) I can still hear out of my AN ear, 2) there are people out there with tinnitus in BOTH ears.   

The worst thing you can do is to concentrate on it.  I also try to use the methodology of...yeah it's there...yeah it rings..but at least it doesn't hurt.  If it bothers you at night, try turning on a fan near you to help with the noise.  You'll probably learn to adjust in a few days if it doesn't self correct itself...which I'm sure it will a bit. 

Gary

[Bob Partak]

Hi John,
Yes I had CK in Sept.2004. Had immediate balance problems that has almost cleared by now. I fatigue easily and notice the balance problem more then. Sleep is important for me. I need 8 hr's.
Tinnitus did get worse after treatment and spikes very loud with sneezing. Becomes bothersome if I wake during the night. Takes a while to fall back to sleep. It never stops, but I believe it calms somewhat to the point I can read and stay busy without it disstracting me. When it spikes loud I just try to stay calm and it subsides enough to tolerate. In time it becomes a non issue, why?, I don't know.
I went into CK with only 44% word recognition and I lost all hearing after 6mo.s. My AN was 1cm X .5cm so the mild post-opt. swelling from the radiation was too much additional pressure on the nerve I guess. I still have that fullness feeling, it comes and goes.
I also developed a mild facial spasm on my AN side(left) after 8 mo.s. It lasts only a few min.s and happens once every 3 to 5 days due to facial nerve irritation. Should be temporary as the post-opt. swelling subsides. I don't want to scare you, but I want you to know what I expierienced. And YES I would do it again, because with Surgery I'd be deaf on my left side most likely. Surgeons said my hearing was non-usable. Stay possitive your tumor was small so you should do well. I hope you maintane all your hearing. I wish you well, Bob

[gregpstone]

John,

I had cyberknife at the end of April. Aside from a few days of fatigue, the only new symptoms I experienced was a change in my tinnitus. The white noise background remained the same. I have not experienced warbling or rising and falling pitched tones since the treatment. I did get some new sounds: a speeded up Star Wars light sword duel and "chack chack chack". These have receded over time and seem to have disappeared in the last month.

Greg

[SuzeAN]

Hi I was wondering if anyone has come across some  type of "remedy" for tinnitus?  Like I have read here some days it is more noticeable than others.  For me it seems red wine and caffeine have an effect on it.   

At least I am not hearing voices in my head,
Cheers,
Suze 

[GM]

Suze,

I don't think there is a real cure out there.  Most of us try to live with it the best we can.  Here's another link (EZ Board) with a focus on tinnitus:

http://p080.ezboard.com/btinnitussupport92262

But these people do not have AN's, just the tinnitus but there is a great topic on that site with how to deal with the tinnitus on bad days:

http://p080.ezboard.com/ftinnitussupport92262frm1.showMessage?topicID=13603.topic

Hope this helps... 

Gary

[SuzeAN]

Thanks Gary, that was an interesting and fun forum.  Seems alot of people with tinnitus have good humor.

There really isn't a "magic pill", I can live with it; I don't want to spend a fortune on "snake oils" and "witch doctors".

The tinnitus actually helps me sleep if the neighbor's dog is howling late at night.

Suze

[hernieb1]

Hello all:

I also went the Gamma Knife route for a 1.5cm acoustic neuroma on October 5th. 2005.
Tinnitus increased immediately (my doctor told me that that is normal, which I knew before the procedure)
What has been rather unconfortable, to say the least, is my dizziness or lightheaded feeling: I did have these symptoms before the Gamma (as a matter of fact, these symptoms led me to visist a neurologist, who, in turn , discovered the shwannoma via MRI), but have now increased significantly. I feel spacey, tired, if I move my head from side to side, I feel even dizzier...
Any similar experiences with lightheadedness and dizziness after Gamma?

Thanks and good luck to all.

Hernieb.

[debora]

Hernieb1,

I had radiation Oct 5th 2004, the following February was out to dinner with hubbie, fell on the floor, had to be carried out of the restaurant and puked all the way to the hospital.  They admitted me and I spent 4 days there on IV's and anti-nausia drugs.  Spent 2 months on many drugs to stop the vertigo and had had enough so I asked to go to the Mayo clinic.  The dr's there told me to get off of all meds and let my brain start to compensate for the injured side.  It took many many months of doing my jobs which are physical, walking, and doing physical therapy, I am much better.  I do not think I will ever be my old self again but I can work and go out and have some fun.   I am telling you this because when I first got sick I was devastated and very desperate.  I want you to know that you can work through this, it is hard because you will be told to do the things that make yoiu sick, I would rather have them say to avoid all those things but you can't.  I still get vertigo at times while I grocery shop etc, my legs feel like jello but constantly exposing myself helped to retrain the brain. 
Has your doctor run any tests to see what nerves were affected and then to a physical therapist for exercises?  It is hard at first but I believe you can do it. 
Take care.   Deb

[DistressedDB]

Gary,

I had CK on December 13 - 15 for a 1.2 cm tumor.  I was warned that the tumor would "enlarge" as the radiation took effect and could experience greater tinnitus, additional loss of hearing, vertigo and nausea...  Being the optimist I am, I assumed that meant for everyone else, not me...  I was wrong!  When I feel my tinnitus getting worse (louder) I know I'm in for the bed spinning and a bit of Linda Blair in the Exorcist re-enactment.  I have not resorted to any medications to help the vertigo subside, I do believe that my own system will compensate for these changes, and will continue to fight with the tumor.  I was at a holiday party where someone dropped a dish, and the ringing in my ear was deafening!  I lost total hearing for about 10 seconds. 

I hadn't thought about how diet could affect it, but it makes sense...I'm going to try forgoing my daily morning Starbucks vice and see the effect.  In the meantime, if you see a tornado coming and house spinning...peak in the window, I just might be in there!

Deb

[hernieb1]

Debora:

Thanks for the repy. I, like you and DistressedDB, also believe that it will get better, and that my own system will compensate.
I didn't really think it would get like these.
I recently talked to my doctor, and he said "it will get worse before it gets better, hang in there", and I do trust him 1000%.
Regarding your question, no, they haven't run any test to asess which nerves have been affected and how much.
Thanks, and good luck,

Hernieb1

[GM]

Deb,

Your post was hysterical...humor is also a great way to deal with "T"  Although I know coffee is taboo for us with "T" I find it hard to deal without it.  I read on the internet that an apple is a better stimulate than coffee...just doesn't work for me.    I started a new job and find myself drinking more of it (coffee), more than ever.  Not because I need it...but I find myself drinking more to just get up from my desk and stretch for a couple!  Another thing for all of us to consider is "Pain Management Therapy."  I have a neighbor that is dealing with chronic pain.  She turned into a recluse but since her pain therapy she is out and about.  You could hardly believe it’s the same person.  It would be interesting to see if anyone tried this idea to deal with "T".   Till then...try to minimize the Starbucks trips until we become just too difficult to deal with and then go straight to the Venti size


Gary