Why ? why this happen to me

I have been struggling with AVM for 30 years. Living a life filled with pain, day and night. Make the most basic thinks seem difficult.
Sometimes I feel my AVM like a volkano, ready to erupt. I often think how different could be my life out pain, with out surgeries, with out therapies, with out AVM.
Sometimes I feel that I will never find the light at the end of my tunnel.
Sometimes I believe that maybe I was destined for this life and many times I ask my self … why ?
why this happen to me ?

PS.:I wanted to share my feelings. I apologize for the negativity …

I will keep you in my prayers, Tonia and pray that your left gets better! Keep the Faith.

I know your feelin… I had my avm removed in 08 and ever since i have multiple trips to the hospital and havin everyone treat me like i am a child and the pain from headaches and the scar still even hurts sometimes… The depression sometimes from where i have dead tissue damage is almost unbearable sometimes… I myself don’t even feel normal anymore, my attitudeis different I feel like I have multiple personalities, and alot of anger issues… Just know your not alone and it makes me feel good to know i am not alone either cause it drives me crazy sometimes thinkin about all of this… Hope to talk with you somemore… God bless you!

It is perfectly alright to vent your frustrations here. Prayers and positive thoughts are being sent your way!

`Tonia I know exactly how you feel. I had my surgery in march of this yr. to have my AVM removed. Since then I have been dealing with severe pain issues seizures. I have a hard time understanding conversations espically over the phone. I just don’t understand what people are saying and they have to repeat things over several times before I can understand what they are saying. I hate it. MY memory is very poor, and I use to have a very good memory. My AVM was in my right frontal lobe. My emotions are all over the place. And i wonder daily why this had to happen to my I thought after the avm was removed it would all be over no more headaches / migranes / pain. Wrong answer they are worse. Everyone keeps telling me it takes time to heel and I know they are right. That i have been thru some thing traumatic ie brain surgery! But i just want to be my self again! There has to be a light at the end of the tunnel other wise why would we put are selves thru this. We must believe in something to see this light and we will get there. We just need to keep the faith. You will be in my prayers@

Tonia, this might not help, but when I read your note, it popped into my mind.

When Chari first had Proton Beam Rad about 1991, we were on a similar journey with a man from Chicago. I was oblivious to this, but Chari saw that both he and we were ending up at the same offices for test on the Mon/Tues prior to PBR. She spoke to him, and we became sorta friends during that week and for a few months afterwards and heard his story.

About 20 years prior, he developed a limp and had some cognitive issues. The local neuro he went to diagnosed him as having suffered a stroke. For TWENTY years, he was treated as a stroke patient. He didn’t get better, and thankfully didn’t get worse. Then in 1991, his neuro of 20 yrs retired, and a new young neuro took over the practice. The FIRST time he saw this person, he doubted that the person had suffered a stroke, and suspected an AVM. He had the person do an MRI (or CT scan, can’t recall). Plain as day, there was the AVM.

So this person was incorrectly treated for over TWENTY years and only with a new DR, did he get the proper treatment. So for all of you that have long term AVMs, especially if they are deemed un-treatable, I would suggest a 2nd opinion to see what’s available.

When Chari’s AVM showed up in 91, the first evaluation locally was “live with it as best you can.” Then PBR was tried once, and a few yrs later, a DR said he could fix it via embolization and microsurgery. Her AVM is now GONE.

Now I’m not suggesting that it will work in all cases, but technology for treating these monsters is improving rapidly.
My best wishes,
Ron, KS

My dear friends forgive me for being late replying to your sweet messages. Unfortunately I had pain again in the leg that Ι had to deal because of a small wound that had infected and tortured me. The last ten days I am well again and happy.
I want to thank you all from the depth of my heart for the touching and sweet messages and letters you send me. You are wonderful people and I feel blessed that I have met you. Thank you so much to everyone who has shared with me his life and his thoughts. The Strength You Give Me grew louder inside my heart.
I hope you are all well. Wishing you beautiful summer days. Many kisses … and love from my soul