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I have a large AVM on the Right Side of my Brain, many surgeons have told me this is inoperable, but it's good that it;s large, as the arteries and vein have more room. I did choose to have kids with my husband at the time, as the neuro-surgeon advised us that the first 12 week is the high risk, and I choose c-Section for the Delivery of my two beautiful sons.  Not to my awarness, unfornuately I lost my emotions (sinuses- blocking up the channels).  I had a boat accident 10year ago, and knocked my head, I was in a confused state for two week till I had the knife like feeling stabbing my head.  The dr confirmed I had a Subacranoid Hamorrage, and also I I had an onset of fluid, which lead to a vp shunt being placed in my 4th Ventricle. Being on a course of many mental health medication, the psych was giving me, the end result I had a major infection in my Thyroid Gland, in which I made the choice with my GP to go off my Mental Health meds, and fight the infection naturally, as I had been on 5 antibiotics.  The End results, my blood test came back, better thent at the start of the invection, but I had neck pain, the Dr sent for ex rays,and it just showed up as muscles spasm, I bought a neck brace to wear to lessen the pain,  I started to wear of a night.  To my amazement, I had a good night sleep, I was breathing better, my sinus were more clearer, it was amazing, to feel so good. I was even able to cry, (in which that seem very hard for my brain to do.). This discovery, lead me too believe, maybe I have a Chairi Malformation, as well, so I went back to the Neuro-surgeon, and he ruled out a Chairi, Whether he's not educated on chairi of an undeveloped pcf, not presenting a truthful picture.  Yes I do have a pre-exsisting inoperable AVM., in my own head I'm believing my symptom are the same for both malformation, so it's so hard not to believe in the Dr.  The end of the day, I need to trust my dr, treat my symtoms and live a happy life.  Does anyone have a Inoperable Right Brain Malformation, who would like to share their story? or anyone, too can something I'm missing?  Thankyou.

Karen
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Avatar universal
Thank you for sharing your story and I am sorry to hear about all you have gone through. Have you ever gone for a second opinion for medical care? Or do you see the same doctor? With any medical condition, I do recommend always getting a second opinion to make sure you know exactly what's going on.

I have a good friend with an AVM and she also chose to have 3 children, despite the risks. She has gone for embolization to treat the AVM, but the first time didn't work and she's going again next month after finding a new specialist.

Hope you are doing well.  
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