5 months post CK

[Skebenga]

Greetings! I had Cyberknife treatment on my left side 2.2x1.3cm AN in early Feb. For the first 9 days I had a severe headache and felt drained, then I recovered to a point where I felt similar to pre procedure. I was traveling in May and all symptoms seemed to get worse. Tinnitus was louder, full feeling in ear and general imbalance. My doctor prescribed 2 weeks of steroids which helped a bit. The last 2 week of June were miserable. I had no energy for anything. If I tried to work, the most I could manage was 2 hours before I felt drained. The tinnitus reached record levels, brain fog worse than I’d ever experienced and I was extremely unsteady.

Today I went for a follow up MRI, not knowing what to expect. The results were good. The neuroma shows necrosis at it’s center and possibly fractionally smaller. I was relieved. When I asked the neurosurgeon about my symptoms, he was dismissive, saying that should not be happening. My balance should be fine and things should be improving. He seemed almost disinterested, as if he’d done his job, and I should just get on with it.

I found this hard to accept, as my quality of life is nowhere near where it was before. Has anyone else heard of continuing symptoms after CK? I’d appreciate any input.

[jami]

Hi Skebenga,

I have heard of continuing symptoms post CK. Here is how it was explained to me...

-CK takes time to work, and it can take 6-18 months to 'kill' the AN.
-The AN will continue to grow during those months, and it can grow slowly, quickly or in spurts.
-There will be initial symptoms after CK (mine was about 3 weeks of symptoms like yours) and then the CK symptoms go away.
-When the AN is 'killed' (not the medical term) it could stay the same size or over time get smaller

I expect to have continued issues until CK does its job (fingers crossed) yet increasing symptoms for a while more.

Your current symptoms sound a LOT like mine before surgery last August (we think the remaining bit of AN that was hanging out on my facial nerve kept growing which is not unusual). It might be worth seeing if there is another neurosurgeon who could provide better advice, even if the end game is that you still have to wait. You should be aware of your options if the AN stays the same size or the fatigue and brain fog remains.

Although my neuro/ENT surgeons were amazing, i have seen throughout the process that all the focus in on the AN, and noone really treats the whole person.

Lots and lots of wishes of support.

[Skebenga]

Thanks for the reply and much appreciated input Jami.

I think you are spot on about all the focus being on the AN and I guess that has to be their priority. I was massively relieved to see the first signs of necrosis, but I’d hoped for some more advice or help regarding the ongoing symptoms. It does seem that there isn’t any set formula for these ANs, either in growth or in recovery, so I guess it is hard for the neurosurgeon to commit.

He did say I should try and be as active as possible, which is what I’m doing. I’ll do what I can and see how the next few weeks go.

Thanks again!