post gamma knife

[madison]

hello. i am new to this discussion forum, but am glad to know there are others out there dealing with the same kinds of issues.
i had gamma knife done last february for a right acoustic neuroma. i had a 6 month followup which showed the tumor is dying. i go this week for my one year folow-up and i am really nervous. the fullness feeling in my ear has decreased significantly, but sometimes comes back intermittently. i also have a dizzy or "not right" feeling once in a while. i still have ringing in my ear which i know will probably always be there- but also a rice krispies sound and sometimes a heartbeat or popcorn popping feeling. is there anyone out there who has had gamma knife with good outcome, but still experiences any of these symptoms. i am curious to know what others have experienced. thank you so much..i look forward to hearing from you and i will keep you posted on the mri results

[Jim Scott]

Hi, Madison - and welcome to our little corner of the vast internet galaxy. 

I'm pleased that you decided to post a message.  Unfortunately, I didn't undergo GK so I cannot offer a credible answer to your questions, but I'm sure others will be along to do so, and offer their own welcome, soon.  I can offer you my wishes and prayers for a 'clean' MRI report this week.  Let us know the results.  Thanks. 

Jim

[leapyrtwins]

Hi, Madison    Welcome to the forum 

I didn't have radiation either - though it was an option for me - I just wanted to say congratulations on the necrosis and good luck with the MRI.

And, please do, let us know the results.

Keeping my fingers crossed,

Jan

[Sefra22]

Hi Madison,
I had GK 2 years ago and still have the same symptoms you describe. Fortunately, they only last a few minutes, and are few and far between.
I went through a period of time about 4 months after treatment where I had vertigo attacks. I had them for about 3 months, but I wouldn't call them severe. They usually only lasted a minute or so. Still, once in a while, I'll feel a little twinge of it. It passes quickly, and I forget about it.

My tinnitus only lasts for a few minutes as well, and can range from a crackling sound to a buzz to a tuning fork sound.

I think I'm doing great, and have just accepted that the AN has an impact that I will have to deal with, maybe forever. The worst being deaf on that side, which I am planning to rectify with BAHA soon.

I am having my 2 year MRI  this Friday, when is yours?

Lisa

[GRACE1]

Madison,

Try not to be nervous about your MRI this week.  It sounds like you are on course.     

I have little noises in my ear probably all the time, but they have been there so long they seem normal for me.  I don't think I was ever bothered with the full feeling.  Occasionally I get that "not right" feeling also.

Keep the faith, and let us know the results of your MRI.

Good luck!
Grace 

[ppearl214]

Hi Madison and welcome! Good to have you here.

Just like you... and so many other AN "radio" patients, many of us have experienced some of the same symptoms you note. I am over 3 yrs post Cyberknife, and I still have the intermittent tinnitus, the balance issues, etc. For me, I've learned that its all part of the "AN Journey" for many, regardless of what treatment option is chosen.

Your last MRI was a good one... I'm sending wishes for the next one coming up. Please don't try to be nervous. Have faith in what you have done (ie: GK), have faith that the MRI will continue to die its fugly death... and know that we are all here right along side of you.

Again, welcome!
Phyl

[mk]

Hello Madison and welcome.

We have quite similar timelines in our treatments, although my GK was a bit later than yours, in April 2008. I  had my one year MRI last week and I understand exactly how you feel. I had the jitters to such an extent that some odd symptoms, like pulling sensations and fullness appeared. I am sure now they were due to the stress because after the MRI they disappeared magically.

To answer your question, I don't think it is uncommon to experience symptoms like fullness, increased tinnitus, feeling light headed (or "wonky headed" as we say around here) intermittently. Irrespective of whether radiosurgery has been successful, we must remember that the AN is still there, exerting pressure to the nerves, reducing blood flow etc.
 I have noticed that for me stress is a big factor. Whenever I am very stressed I notice that the symptoms may intensify. Viral infections hit me hard on the head too (and I get quite a bit of those, with two young kids in school and daycare). Getting a good rest, and increasing blood flow by exercising and hot compresses helps enormously. Ibuprophen has worked whenever I had increased fullness in the ear.
Overall, I would say that I don't expect that I can be entirely problem free - after all I do have an AN. I am just happy that whatever symptoms I have are so mild and transient, and usually resolve by themselves.

Keep us posted about your MRI. Don't hesitate to write about your experiences and ask questions. By the way, what is the size of your AN?

All the best,
Marianna

[madison]

hello. i was sooo.. glad to see that i got responses! i feel better already just knowing that other people have experienced issues like mine even though the GK seemed to be working.i'm just learning how to navigate through this forum, so bear with me if i don't answer you individually. i have a r acoustic neuroma measuring
4mmx6mm. i also have a small l posterior meningioma that the dr. is not concerned with unless it grows. i had gamma knife in philadelphia last feb. my 1 year mri is tomorrow night. i really hope it's ok because i've had so many health problems i feel like i am here to further scientific advancement!
it's nice to have people who can really relate and also offer advice or tell their stories. it really helps-thanks to you all:)please don't hesitate if you have any other questions, etc...