Hi guys
I’m in a muddle and need some help.As many of you know I had a avm bleed in January and had gamma knife in July my question is I know have this constant battle with dizziness and balance control the only way I can even try and explain is that ifyou had a balloon inside a bottle and blew it up that’s sort of what my head feels like also I suffer with a ringing in my ears a lot of the time please can you lovely people tell me is all this is normal as I feel like I’m going around the bend
Ally,
Hi! I’m sorry you’re feeling like this.
I think the honest answer is you need to talk to the doc about it.
I’ve not had gamma knife but what I’ve seen in this forum in general is that people who go through gamma knife start to get symptoms of stuff changing, usually about the 6 month mark post zap.
So, to have some change going on is normal.
But you’re a bit early and your description of the balloon in a bottle suggests you might have a bit of increased intracranial pressure (hypertension) which is also common post zap but does need the docs to check you out and see if you need a bit of help with it.
Often, people go onto steroids of some kind to combat the intracranial hypertension. If you’ve got a number to call for the hospital, I’d say start there. If not, your GP might be able to do a quick check to see if you look like you’ve got a bit of intracranial hypertension going on.
Good luck. Do let me know how you get on.
Richard
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Hi Ally. I am a little out of touch for a while as I am on a trip for the next 10 days or so. I had a bleed and 6 months after the bleed had gamma knife. This was in 2016. Did all the symptoms you describe occur post gamma knife? Is the ringing in your ear constant, or does it sound like you are hearing your heart beat? Pulsatile tinnitus, is quite common with AVMs and the sound will likely change as the blood flow alters as gamma knife begins to work.
It does sound like you may have some swelling and your care provider is a good place to start. I certainly agree with Richard on these points! I had more severe intracranial pressure post bleed and required steroids, what you describes sounds similar to how I felt. I had a little swelling post gamma at about 6 months but not to the point of requiring medication. Take Care, John
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Thank you both I have called and now have a appointment on 18th so will let you know after that
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Hi Ally,
I had similar symptoms after my gamma knife. I had the treatment in July 2019 and my face and head felt weird for around 12 weeks. I was very concerned and stressed about it since the hospital said that it can’t be down to radiation, and I was wondering if it was brain swelling or something else. Anyway, they were very reassuring and did say that other patients often reported strange sensations after gamma knife. My experience was that I felt very fatigued, had strange head and face pain, including a feeling of pressure and that this worsened with any physical effort. It resolved completely by around 3-4 months after treatment. I hope you also feel better soon. It’s good that you have made an appointment and I hope they will be able to reassure you like they did me.
All the best
Jonny
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