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AVM Survivors Network

Stay Positive and Keep Fighting


#1

I started this journey with a large grade 4 AVM in the temporal and occipital lobe. I was devastated by this diagnosis and my world came crashing down around me because I was a healthy, vibrant, and very active older person. As stressed in many posts, it is important to find a neurosurgeon that fits you. I had a great doctor who was very confident and talked to me extensively about options and risks, no sugar coating and that was exactly what I needed living in this world of uncertainty. He was very adamant about the journey being long and relentless and I needed to prepare myself for all the ups and downs that could occur. We talked about depression and the all the risky physical effects the treatments could have. The first three embolizations successfully closed up a major portion. Despite the success, I admit that by the 3rd one I was so worn down and feeling hopeless, I just wanted to quit. I felt I was a burden to my husband, because I could not even do simple tasks around the house. No one really understands the feelings you are having, the aches, pains, numbness, tingling, paralyzing, dizziness, ringing, nausea and every other descriptive word that is hard to explain and most of the time unexplainable. Family and friend support is so important, so embrace it and let it feed all positive and optimistic outlooks you have. Ignore those who do not bring anything to the table that do not promote a positive outcome or doubts remotely what you feel about this horrible burden. Feel worthy.
I went in to stage 4 embo, a little less afraid trying to accept how bad I was going to feel for months. To everyone’s surprise, the remaining 25% was 100% angiographically obliterated, no further draining veins, AVM nidus, and feeding arteries that were previously identified were present. Although it has been so discouraging at times and the follow ups with angio at 6 mos, 1 yr, and 2 yr , which seem like an eternity, there is a little light at the end of the tunnel.
Finding this website for support was a major help for my journey and help me understand this disease. I am still not out of the woods, because this monster can rear its ugly head again, but all I can say is live your life and share your experiences with others. I used to make comments like “easy for you to say”, when I would read about successes on this site because I felt so sick and was in so much pain all the time. Three weeks ago, I could not have written this message much less read it without getting sick. Although I still feel off and not normal, the experiences on this site can hopefully provide some comfort to someone or their caregiver and let them know they are not alone. Technology is progressing fast and it is all our hopes that it will be able to conquer and cure this silent monster. Whatever you may believe or have faith in, EMBRACE it, DON’T QUIT, don’t be afraid to talk about it and know that all experiences only add to the knowledge of getting much closer to the victory of curing this disease.