Treatment Options > Radiation / Radiosurgery

3 months Ck major exhaustion and dizzy spells

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dominic12345:
Looking for answers from my doctors and getting nothing!!!

How long does it take to start feeling better?  As stated before, I'm 6 months CK and it's been 3 solid months of misery for me.  Ice pick headaches, dizzy all the time, exhausted 24 hours a day,  Vertigo day and night that brings me to tears with no relief from anything I've tried.  I have to hold on to the walls in my house to walk anywhere, I've become a non functioning person.

I've worked 1 day in the last 3 months and before this, I missed 1 week in 30 years of employment working 60 hours a week.  I can't walk a 1/4 of a mile on the treadmill without extreme dizzy spells.  As I mentioned before, I was in excellent health and a runner putting in 35-50 miles a week and had not even had a cold in 12 years.  I've always been responsible for taking care of my health.

I have been to the doctor on several occasions in the last 2 months and had consultations with both my ENT and the Radiation Oncologist who is head of the department... They keep insisting that nothing they did should have affected me in any way like I'm experiencing. I had 5 small doses over 5 days on a small tumor on my right side.

I asked them if they every read anything on the ANA website and both told me they had not.

Can someone please direct me to a Doctor anywhere in the Midwest that I can make an appointment.  I'm a fighter and will fight like hell to get better, but I'm loosing hope a little more each day. 

Lastly,  I chose this option rather than surgery because I was told I would not have any side effects and it would not interrupt  my work schedule. 

PaulW:
Ice pick headaches could be a concern.... Have you had an MRI since the headaches began?
On rare occasions the radiation damages the tumour and it gives off proteins which can cause a reaction in some people causing hydrocephalus.. You need to get this checked out, it can be reasonably serious.
They can put in a shunt which is a simple procedure to stop the headaches.
I would get this looked at first...

As for the vertigo if it is disabling they can inject Gentamicin into the ear and kill off the balance organ in that ear... It's a permanant procedure. It's not a perfect solution, but if the vertigo is truly disabling you could ask about it.

Things do get a lot better.. And 6 months is often the start of a much better future..
I seriously wonder if your problems are related to hydrocephalus a rare complication to radiosurgery. It could be affecting lots of things

CattAN:
Nine days post CK, yesterday evening I experience a headache and dizzy spell.  I had to lie down.  Luckily, I was at home still.  I am worried about this happening at work or driving home on the Freeway.  Aren't these symptoms supposed to start later?  Or do they get worse later?

CassaP:
PaulW may well be right about hydrocephalus, and you do need to be checked pronto. A CT scan should suffice.
For me, hydrocephalus symptoms led to diagnosis of my 2.3x2.1 cm AN, for which fractionated radiotherapy treatment begins next week. I had intense, hot, prickly "positional" headaches -- e.g., intense throbbing after getting out of the car -- loss of equilibrium, shuffling gait, and a frightening decline in cognitive function, esp short-term memory. Wound up in the ER one night in April and a CT scan showed the hydro. But it took another ER visit and an MRI to reveal the AN, which, they say, may or may not have been behind the hydro, due to protein-shedding. Apparently it's a tough call.
Another possibility: your AN has swollen in response to your treatment, pressing on the brain stem such that CSF flow is impeded. The UK acoustic neuroma assn. notes this as a risk.
My VP shunt has helped tremendously, though I'm still somewhat woozy, probably due to vestibular effects of the AN.
In any case, good call PaulW, and do hope Dominic will post after consulting docs re possible hydrocephalus. Ditto CattAN.

PaulW:
CT Scans give you a fair bit of radiation, and have been associated with a small but significant increased risk of cancer. My personal preference would be an MRI due to the better image quality for soft tissue, and the lower life time cancer risk..

Headaches following radiosurgery is common a few days afterwards.
I had a their weirdest headache within a few hours after CK... My doctor did warn me that it could happen...
For me I am pretty sure my headache was caused by my facial nerve being upset by the radiation.. My headache went away after a few hours....
Things can happen pretty much immediately after radiation... They then normally get better, then at around 5-6 months things get worse again.. For most people post radiation symptoms are just typical AN symptoms, However they are often at the more troubling end of the scale for the first 6-7 months.

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