Strong symptoms 6 months after SRT

I’ve had a strong return of symptoms starting five months after radiation treatment – large AVM. The symptoms are:

1. Headache—located at the site of the AVM—then spreads to left side of face—slight numbness—then to right side. Numbness also. Daily—2 on a ten scale of pain, will spike to 5-6. I’m taking Aleve—but the pill does not stop the headache.

2. Stiff neck (after the headache) minor pain—more a discomfort.

3. An episode – starts very slowly. A feeling of dizziness increasing in strength as the episode develops, the ringing in my left ear increases, I feel very unsteady on my feet (need to brace myself against the wall, chair). Concentrating, focusing becomes challenging—but I can overcome this. I feel a sense of being out of time. Think of a favorite song—play it at half-tempo. If the episode is strong, I’ll have a slight body tremor— and in my right hand. (this is only with strong episodes). I am averaging 2-4 of the episodes a day. I am also frequently having an episode in the middle of the night.

4. Fatigue—I’ll need to rest after the episode. A nap helps—but I’m feeling wiped out most of the time and my head is just fuzzy.

5. Brain fog—it’s consistent (2-3 on a ten scale). During an episode—it jumps to 5-8. I’ll have to re-read passages of a novel. If I’m writing—the draft is packed with errors. For a severe episode, I’ll have trouble speaking. I’ll need more time to construct the sentence in my head.

The radiation oncologist, the neurosurgeon do not believe this is related to my AVM/treatment.

Anyone else have strong symptoms after radiation? And how long did they last?

So I’m wondering if you’ve got a bit of cerebral oedema going on. It seems to me typical that people start to have effects after radiotherapy at the 5- or 6-month mark and that is often swelling associated with the radiotherapy.

Your episodes could be migraine-like or they might actually be towards seizures: I don’t understand the boundary between those two but there is a clear distinction.

I would ask about swelling/cerebral oedema and whether you need anything to alleviate that and I would also ask about a referral to neurology about the episodes. Some people do end up with having a seizure and getting that assessed/perhaps onto medication before you get that far seems a good idea to me.

Do let us know how you get on.

Very best wishes,

Richard

Thanks Richard

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