Dr Shvenk was my Dr at Cedar Sinai about the same time you were there. My AVM was February 2005. Treatment was successful. Hope you are still on the positive side of health and life. I have since left Marina Del Rey and have bee living in Palm Springs. Yes I gave up my ocean view for a view of the mountains. I have adjusted well and God willing I will continue to enjoy the desert lifestyle. Anyway, I just wanted to reach out and I hope you’re healing process is going very well and that you are enjoying life. Blessings to you, an AVM survivor.
My cerebral AVM was discovered incidentally (pre-symptoms) 13 1/2 years ago. It was deep in the left parietal lobe very near my motor strip (which controls movement). I was treated 12 1/2 years ago with Cyperknife. I suffered many effects from treatment, both negative and positive. I have spent the past 12 years in physical therapy overcoming spastic hemiparesis. The list of different therapies that I have I undergone is long. The physical, emotional and psychological struggle in this journey has been real, but worth it. Five-year follow-up cerebral angiogram showed complete obliteration of my AVM. Nine- year follow-up MRI showed no resurgence of abnormal vessels. I have gone from using only one arm/hand and ambulating in a wheelchair to recovering full use of both arms/hands and walking unassisted with a limp.
I lead a full, active life. In addition to my persistent participation in clinical physical therapy, I work full time as a middle school world language teacher and I pursue many recreational activities that require strength, balance and movement: swimming, biking, boxing, riding horses, downhill skiing, gardening, hiking and fly fishing. My doctors tell me it is rare for them to care for someone who continues to make progress so long after having a stroke. I am also a 22 1/2 year cancer survivor. I have experienced many highs and lows on this amazing journey. However, even in the depths of pain and despair, I have never stopped praising, thanking and trusting God.
I wish you a very happy, healthy New Year. May God hold you in the palm of His mighty hand and May He bless you in abundance. Amen.
Hi Oak,
Thank you for taking the time to share your story with me.
Your story is amazing! Wow!
Can I ask, did you have a bleed after radiotherapy and that’s why so many symptoms happened for you?
Was your AVM a large one?
Thank you so much!
Wishing you a happy new year, peace and happiness!
I appreciate your story such a Very inspiring struggle back towards normalcy , Esp your faith in God’s help and blessings.
Though we dont see the creator but “Faith is something which makes you see what you dont believe And the reward is that you start seeing what you dont believe “
Stay blessed And thanks i got great strength from what you share as i am also passing thru tough times since last 4 years.
My AVM was small, about the size of a quarter. But the blood flow through it was fast, and it was located in a critical area. Neither a craniotomy nor an embolisation were options for me. My doctors were not all in agreement about whether I had a bleed or not. Some believe I did, others believe I didn’t. What’s certain is that after Cyberknife I developed an enormous amount of cerebral edema which gave me stroke-like symptoms and took many months to finally clear up. Also, I responded very swiftly to treatment. The thrombosis which should have developed over several years occurred within a few months. The result of all of these factors was necrosis. My most recent MRI, done at 9 years post op, revealed a cavity in my brain where both healthy and unhealthy tissue once intermingled in what is referred to as the nidus. Cyberknife spared my life, but it came with a cost. I am at peace with this part of my life journey and I am grateful for the many blessings it has brought me.
When I was in the throes of treatment and recovery, was greatly helped by this quotation by Dr. Martin Luther King, Jr. I hope that it helps you, as well.
"Faith is taking the first step even when you don’t see the whole staircase.”
Hi Leah,
Guess what! I too live in the Palm Springs area. I am doing well for the most part. I like the calmer lifestyle here in the desert. Looks like Dr Shvenk saved both of us. I am very grateful to him. Glad you’re doing well. Stay healthy and keep going. Howard.
I am Somewhat active on the site. I check in here and there. What a small world you live in the Palm Springs area.. Keep up the spirit, and I hope you’re doing well. Keep moving forward, and stay strong..
Leah (Leslye)
Hello @Amareea ! My son Daniel (25 years old now) had the following: Left frontal parietal sylvian fissure region AVM with some superficial venous drainage and likely input from the Middle Cerebral Artery .
With you as we all know the feeling of the AVM shock news. I think I went numb for a few months until my son received treatment. Even after treatment there was the adjustment to circulation inside my twenty four year old son’s brain. He still gets numbness on his right side due to left side AVM. They were to do Embolization and Craniotomy on January of 2024. He successfully received Embolization but two days after that the Craniotomy did not move forward because Neurosurgeon feared he would leave him paralyzed on right side while he was already inside his brain in the operating room . AVM was closer than he thought to his motor cortex. In March 2024 he received Gamma Knife . Its been a nightmare roller coaster but things are looking better for my son. Trust me that all of us know how you are feeling. The Embolization for my son has helped as he doesn’t get the Auras before seizures he suffered prior to treatments. Now we wait for Gamma Knife to do its job with some peace of mind. He is in college about done with Marketing Degree and works as a Barista. Hello to you from Texas (South).
Howard.