veritgo post SRS

[Alison]

Hi, I'm about 3 months post linac SRS.

I had balance issues pre treatment, which lead to my diagnosis, and although these had impacted on my life I had got used to it. It was hard to recall what it was like to walk without feeling wobbly.

But for the past 2 weeks these have got gradually worse with vertigo and dizzyness, every time I move my head. This has coincided with my ear feeling much more full, like it's got water in it. Tinnitus is the roaring kind.

Walking outside is more unpleasant and unnerving, as I feel I may topple over headfirst in the street. Nausea comes and goes. And to think I thought it was bad before!

I won't get an MRI till Jan 14 as the doc said it'll just be swelling or irritated nerves, when I had my follow up. I was told to ring them for steroids only if any sudden deafness or palsy. I don't want to resort to steroids anyway unless essential.

I'd like to ask if anyone else had this worsening, and how long it went on for and if you resorted to any meds or it improved on its own? 

Many thanks, Alison (UK)

[PaulW]

Its very common for symptoms to increase after radiosurgery.
Hang in there things do get much better.
Many report significant improvement around the 6 month mark.
At 5 1/2 months post treatment I remember having a real "Wow" moment

I was walking on a beach with loose sand, all of a sudden I realised I wasn't feeling dizzy, I wasn't thinking about where to put my feet because of my poor balance. I wasn't tired, the ear fullness, and bobble head doll feeling were gone.
I could also hear the waves, and the wind rustling in my ear.

For the first time since symtoms first appeared, I had completely forgotten about my AN and felt completely normal.
That sensation, lasted a few short hours, and over the following 6-24 months it slowly became the norm, rather than a 2 hour oddity. 

Check out this blog, its a nice read of one persons journey. Things do get much better
 
http://www.myacoustic.org/post-treatment-symptoms-for-acoustic-neuroma.html#firstmonth

[Alison]

Thanks so much Paul. You are a constant source of help on anausa and it is much appreciated. I've put the link onto a UK support page for others to read as I think it'll help, even though we rarely get CK in the UK we have GK here and linac like me, all SRS after all.

I'm reading the blog and the 2-5 month page is how I'm feeling. I hope I can avoid the steroids though! Thanks also to Francesco for writing the blog.

Hope you are well today,

many thanks Alison.

[Guitarmn50]

Its very common for symptoms to increase after radiosurgery.
Hang in there things do get much better.
Many report significant improvement around the 6 month mark.
At 5 1/2 months post treatment I remember having a real "Wow" moment

I was walking on a beach with loose sand, all of a sudden I realised I wasn't feeling dizzy, I wasn't thinking about where to put my feet because of my poor balance. I wasn't tired, the ear fullness, and bobble head doll feeling were gone.
I could also hear the waves, and the wind rustling in my ear.

For the first time since symtoms first appeared, I had completely forgotten about my AN and felt completely normal.
That sensation, lasted a few short hours, and over the following 6-24 months it slowly became the norm, rather than a 2 hour oddity. 

Check out this blog, its a nice read of one persons journey. Things do get much better
 
http://www.myacoustic.org/post-treatment-symptoms-for-acoustic-neuroma.html#firstmonth

It's funny, I guess I'm lucky so far: I felt a little like that after CK, but now towards the end of the second week I feel quite stable.   Hopefully, my SSD will be less severe in time.

[Alison]

Hi guitarmn50,

For the first 2 months after treatment I was doing much the same as before zapping, ie dizzy, tinnitus, balance issues etc but getting on with things. It has only been the last couple of weeks that things have escalated, as I'm into month 3. As we know, "treatment outcomes vary" but I suppose, as Paul W posts and Francesco's blog detail, things can come on suddenly and set you back. Just be prepared!

I hope you continue to do well,

best wishes

Alison

[Guitarmn50]

Hi Allison,

I guess we are in the newbe category here to be sure.  I read the blog: it confirms pretty much the general overview I have gathered from research here, and from the doctors at the Kaiser Permanente Cancer Treatment Center of San Francisco.  That is, it confirms my understanding  minus a complete Doomsday scenario...there is really no point of going there!  I do have some occasional symptoms; however, these symptoms were present before CK treatment:  Morning headaches with a stiff neck inducing a mild to severe head wonkiness...it could be related to the fact I'm a public bus driver, too.  Occasionally, I also feel a slight tingling in my left cheek, and the fullness in my left ear.  This has only happened several times to date. My first MRI is tentatively slated for June. I am reasonably prepared to handle this through the course. 

Best wishes to you Allison...

Walter

[Guitarmn50]

Hi guitarmn50,

For the first 2 months after treatment I was doing much the same as before zapping, ie dizzy, tinnitus, balance issues etc but getting on with things. It has only been the last couple of weeks that things have escalated, as I'm into month 3. As we know, "treatment outcomes vary" but I suppose, as Paul W posts and Francesco's blog detail, things can come on suddenly and set you back. Just be prepared!

I hope you continue to do well,

best wishes

Alison

Thank you Alison...I know what you mean.  I expect things will start to happen.  Probably sooner than later.  Oh well.   

Thank you Alison I hope your recover goes quickly it is hard going through this !

Take care...
Walter

[v357139]

Its very common for symptoms to increase after radiosurgery.
Hang in there things do get much better.
Many report significant improvement around the 6 month mark.
At 5 1/2 months post treatment I remember having a real "Wow" moment

I was walking on a beach with loose sand, all of a sudden I realised I wasn't feeling dizzy, I wasn't thinking about where to put my feet because of my poor balance. I wasn't tired, the ear fullness, and bobble head doll feeling were gone.
I could also hear the waves, and the wind rustling in my ear.

For the first time since symtoms first appeared, I had completely forgotten about my AN and felt completely normal.
That sensation, lasted a few short hours, and over the following 6-24 months it slowly became the norm, rather than a 2 hour oddity. 

Check out this blog, its a nice read of one persons journey. Things do get much better
 
http://www.myacoustic.org/post-treatment-symptoms-for-acoustic-neuroma.html#firstmonth

That journey of Francesco's was very informative about the potential after effects of Cyberknife.  Does Gamma Knife sometimes have the same side effects?

[PaulW]

GK / CK both provide highly accurate radiation..
Chances are any problems would be the same.
These are not really side effects of radiation, its just the consequence of the nerve tumour dying and the effect it has on our nerves

[v357139]

The story of Francesco on that website, the tumor swelling, and what he went through, was very informative.