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2 AVM on brain and going for HHT and more scans


#1

One AVM on cerebellum, memory center and one AVM deeper on balance center.
Being checked for HHT and more AVM’S on the 28th at Cleveland Clinic. They are checking & marking the exact spots to be treated by Gamma Knife Proton Therapy.


#2

Hey,

Welcome to our community! How are you feeling about having an AVM? Often, it’s very scary but I would encourage you that discovering this sort of thing is scary but (usually) it all calms down and getting used to the idea is a good thing.

Since you are being tested for HHT, do you have some family history of AVMs or other AVM-related symptoms? Or is your doctor checking because of having found multiple AVMs?

We do seem to have quite a number of HHT members, so you will not be alone if it does come back positive.

Anyway, it’s good to have you join us. I hope we can support you.

Very best wishes

Richard


#3

Hi there, I too have been for HHT assessments and have recently been diagnosed with HHT. I hope all goes well with your tests and procedures to resolve the AVMs. My known brain AVM took 6 years to obliterate , the medics are currently working out a plan of action to review whether I have any further AVMs. Keep me posted how you get on?
SmilerDi😃


#4

If you get a diagnosis of HHT, do join the Pulmonary/Heart/HHT group. You’ll find it under the three-stripes menu, top-right. Group members of the non-brain groups get alerts when other group members start a conversation. I hope it helps the rarer among us support each other.


#5

I am having a hard time with the HHT because my grandparents on my dads side were orphans. Daughter died in SC at 29 but Lancaster Co. Just put anyorism, that’s it. Time for phone calls. They found 3 and my memory is going fast…I noticed over the past year. 2 are-4mm on memory and 2mm on balance center. Waiting to hear to start Gamma knife. Thank you for all the encouragement.


#6

There are some known genetic sequences associated with HHT, so they may be able to tell you via genetic testing.

Good luck with the gamma knife. Are you OK about it?

Best wishes,

Richard


#7

The Cleveland Clinic found 5. Four on the surface affecting different areas and the largest,#5, takes up the center and on pics. does not look anything like a normal brain.
So many memories lost, or hard to recall. Very scary and sad.

Blessings to all fighting this.


#8

Darn!

HHT is a rubbish diagnosis to have. However, we do seem to have a growing number of HHTers and you’ll be welcome to join them and lean on each other a bit.

My grandfather had migraines and massive nosebleeds from about age 30 and pre senile dementia as he approached retirement age but lived 90 years ago, give or take 30 years, so there was no diagnosis. He was assumed to have one of the many strange ailments that men came home with after the first world war. So when I first learned about my AVM, I worried I might have HHT, given the familial link. However, I think I’ve just got the one.

Very best wishes,

Richard


#9

Cleveland Clinic rushing to get me in by , thank heavens!, changing others appts around on Fri to do an Angiogram at 8 am. Drs all agreed to start on the central growing AVM and I can feel the loss it has caused in the past year. Now pressure, but that will end soon thanks Gamma Knife and hand of God.


#10

I hope it goes very well. Very best wishes!

Are you ok about the angiogram and the radiotherapy? Anything you need to ask about or get a bit of reassurance about? There are plenty of people here who’ve been though those, so could encourage you. I’ve had three angios and they are straightforward by my reckoning. Lots of lying still afterwards but the procedure itself perfectly ok by me.

Wishing you all the best!

Richard


#11

Thank you. I had my first in 1967 when I was ill. Turns out after 8 days in hospital, and a spinal tap reveaed I had West Nile Encephalitis. Wonder now if connected???


#12

Hi. West Nile Virus is an interesting thing! I’ve just been reading a bit about it. Did you go on holiday somewhere in 1967 e.g. to the Middle East or Africa? because the US is supposed to be WNV free until the turn of the current century. It does sound like it messes with the brain and if you don’t have HHT, it could be a factor, I suppose.

I’m sure if you talk to your doctors about it, they may well be interested. Fascinating!

…might explain some of this.


#13

No HHT. Orlando, Fla during Easter Vacation. Spinal tap and fluid came up positive for West Nile virus. Back then 4 months on antibiotics. ( Paying for that now.)
The Cleveland Clinic got me in tomorrow at 8:15 am for final angiogram before starting Gamma Knife. Will let you know.


#14

My brain is going to AVM research here at the Clinic. Hope it helps and teaches.:blush:


#15

Wow! Well, you got bitten by a mosquito carrying an African virus that is believed not to be in the US at that time!

Best wishes for tomorrow!

Richard