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Hello I’m new, I was diagnosed with an AVM in the right thalamus 2.5 cm, back in March this year, I’m 38 years old. My issues started over the last year, where I’ve been feeling more tired in the head and started getting really bad heachaches. Mainly random headaches on right side of head feeling like stabbing knives. Things got worse in March this year, I felt like I was going to blackout at work. A week later I got double vision.

Went first to see an optometrist about the double vision, confirmed I had double vision but nothing was wrong with my eyes and was referred to an eye specialist. That night I woke up with a bad headache , like my brain was breaking through my skull. The headache lasted 4 hours then the stabbing knives headaches came after lasting upto a half hour.

I went to the er and had two CT scans done and was told I have what’s called an AVM which I never heard of before. I was transferred to another hospital for more testing to see if it was bleeding. After all the testing, I was told I had a bruised hematoma and was told there was no bleeding at the time. I was told surgery wasn’t really an option due to the location. Since I was still able to walk and talk I was discharged and sent home and referred to gamma knife in Toronto. I’m still experiencing pressure headaches for several days at random with the feeling of being hit over the head, which occurs on weekly basis.

My gamma knife radiation is scheduled for September.

Matt

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@Matt1 Welcome to the group and glad you found it. Are they giving you anything for your headaches?
I had a rare stroke prior to my AVM/DAVF forming called a CVST, Cerebral Venous Sinus Thrombosis, I had five blood clots in my brain and I went into a coma. Drs told me later that my thalamus was dead and had other brain damage. I was paralyzed on my left side. My head felt like it was in vice . This was in 2011 and I still have constant head pain. But in 2015 after a year of being on marijuana gummies some how my Thalamus came back. I am allergic to many meds and my pain dr thinks I dont have opiate receptors .
I still have my AVM/DAVF which has been treated by embolism with glue and onyx . The rest cant be treated without risk of paralysis and since I have regained my movement they dont want to risk it.
We are here for you.
Hugs Angela

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Thanks Angela, sorry to hear about your thalamus glad to hear your thalamus is comming back. I went to the er a month ago about the headaches . Nothing showed on the CT scan and said it was just migraines and told me to take tylenol with caffeine. It doesn’t seam to help. It’s weird the pressure headaches sometimes when it goes away my head feels like I have hot cold cream on after and there’s water inside my ear.

Welcome to our group. I’m from just outside Winnipeg and had Gamma knife back in November 2016. This was following a bleed, my AVM was in my left temporal. Gamma knife was successful, it is a little bit of a journey, I received the obliterated news in February 2019. Hopefully you’ll be able to get the headaches under control, that has to be frustrating and worrisome for sure. Take Care, John.

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@Matt1 It can be so frustrating when drs blame everything on migraines. My head also felt like a sinus infection but on my brain. My drs did put me on Diamox for intracranial hypertension- which of course I had an allergic reaction to. But many people on my cvst blood clot support site do well on it for the pressure headaches they feel.
I know your in Canada I wonder if you can ask to be seen by a headache pain neuro? I am at Stanford and I have 3 neuros there all heads of their dept , Stroke, Neuro Radiolody and Pain. My pain dr told me as I was scared to try botox for my headaches since I am allergic to so many meds and She said the longer we feel pain in our brains then our brains think that its normal and risk feeling like that for the rest of our lives. This was before the opiate crisis and we had tried opiates but again I did not do well on them. The botox has helped a bit and we had just been starting ketamine infusions before the pandemic hit then they put everything on hold. Ketamine can reset your pain levels.
Keep us updated on your progress
Have a good weekend
Angela

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Good luck Matt. I had some success with the gammaknife. I hope it works for you too.

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Thanks, John, Angela, and brainAVMfighter for your kind words.

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My prayers are with you through your gamma knife. Hopefully it will shrink and it will give them more options to help you.

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@Matt1

Welcome to avmsurvivors! It’s great you found us, though I’m sorry you’re going through it all.

I’m in the UK and health care here is a similar speed to Canada, so I know waiting can be very distressing. I think my main thoughts for today are

  1. You’re in the system. You’ve got a diagnosis and they will get to you. These are good things! I know the headaches are really difficult but hopefully, you’re on the road to getting something done about it. Most people are recommended Tylenol re headaches but if it isn’t touching the sides then it may be worth finding out if any other pain meds, as Angela says, are suitable. You should avoid NSAIDs though, as these are blood thinners and if you do have a bleed could cause a bigger bleed than otherwise (so far as I understand it). So I’d discuss taking an NSAID drug with your doc prior to taking any of those.

  2. I think my other thought for today is that while you’re waiting to see neurosurgery or radiology, if you get any sudden or significant change in your symptoms, go to the ER. Don’t feel shy of getting serious input if you feel seriously unwell. I feel we chaps tough things out sometimes and that’s not the right approach. So if you get something going on that feels serious, treat it seriously.

I found that during the time that I was waiting to see the neuro, I worried myself to bits. I found some comfort through telling those around me – at home, at work – about my condition and that if I should appear to have a stroke to dial 911 emergency (999 in the UK). I also purchased a medical wristband to put relevant details on and this helped me feel more ok about being vulnerable while I had to wait for treatment.

Hope some of this helps. Best wishes,

Richard

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