I am scared!

Hi Lulu1 my sons AVM is also inoperable and other than headaches (which his Doctors are not convinced they are related) has no side effects. I asked about monitoring it and he said if it changes we would know it! Yikes.

Amybamy what are edibles?

I would not suggest this for anyone, but they are pot. It is legal here in Massachusetts!

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Hi 328mom. Did he say how you would know?

He didnā€™t say how we would know. I took it that it wouldnā€™t be good. Should have asked but didnā€™t.

Okay thanks. Iā€™m guessing he meant there would be some new symptoms. Changes wouldnā€™t necessarily mean a bleed - although I guess they could do. I have been told that they just donā€™t know what the effect of bleeding would be. It could be a headache, death or something in-between. This is always a scary thing to be told. But then the risks of trying to do anything about it are scary too.

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Hi Amy

i found out about my AVM just after Christmas. it was like a kick in the ballsā€¦ i am trying to come to terms with it, it helps with being on here and feeling some support. (no support so far from the nhs)ā€¦ I had an angiogram in march, it was a funny feeling having the die injected into different blood vessels so they could see whatā€™s going on in my brainā€¦ At one point they must have sent the dye down the vein that feeds my lips, and they went all warm and tingly. ā€¦

One funny thing was they played all my favorite tunes on the stereo they had in the theater. stone roses, oasis etc. was greatā€¦

i post worries i have on here and get good adviceā€¦ Moaning to my family all the time I think they get sick of hearing about itā€¦ so i moan to you lot. lolā€¦

keep your chin up, the docs will sort it.

Matty

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Lulu, I too have an AVM that will not be treated for fear that they will do more damage than good. I wanted to treat it! Now I have to live with this monster in my head for the rest of my life. They now will treat the Trigeminal Neuralgia trying to get that under control. I am currently taking 6 nerve blockers to get the pain under control. The quality of my life has certainly changed. The 4 doctors that came into the conference room and told my husband and I they could not treat my AVM told me to resume my normal life, just donā€™t strain. So easy for them to sayā€¦I have been sitting with this for a few weeks. I am pretty much afraid and wonder when will this thing bleed? At this point I just want the Trigeminal neuralgia to subside so I can maybe resume a normal life. The new ā€œnormalā€. I will take this thing day by day.

Matthew, your friends and family want to support you. You are not moaning, but I completely understand.

When I found out about the AVM, it took my breath away. I thought it would be taken care of by Gamma Knife and would release the Trigeminal Nerve and no more pain! Not going to happen.

They can not treat my AVM with any procedure, maybe in 10 years they will come up with something else, says 1 of the doctors. They will cause me more damage than good. Resume your normal life and donā€™t strain, oh and have a nice day! It would be the end but I am in constant pain and am taking 6 nerve blockers a day that make it kind of hard to resume any kind of normal life.

Next week I will see a Nerologist for the Trigeminal nerve and hopefully he can help me without hurting the AVM.

At this point I have not resumed any sense of normalcy and I am constantly afraid. If I did not have friends and family I would be even worse off than I am. It is a confort knowing they are with me.

Amy

Hey Sarah, how did it go?

HI Amybamy. Iā€™m so sorry to hear about what you are going through. It must be awful. In your situation I think I too might be pursuing treatment. The trouble is that doctors are wary of tackling what they arenā€™t sure of in case it goes wrong. I guess what you have to consider is whether you are happy to deal with the risk yourself. Good luck.

Hi Amy

yeh family and friends are very important. ā€¦ sorry youā€™re having to suffer so much Amy. it puts things into context when you hear things like this. i hope they can help you with the nerve and help you get back to a normal-ish life.

Matty