Hello all, I was wondering if anyone shared a similar experience and if you had any advice.
In March 2015 I had my first bleed. (Actually an oozing.) I am a missionary in Montevideo, Uruguay. I was diagnosed in Uruguay with a Cavernous AVM.I lost strength and movement in my right side. My doctors here recommended that I go back to the US for further study. I went to the Vanderbilt Neurology Center in Nashville, TN. There they found that I had 10 cavernous AVM's. Their recommendation was not to do any type of surgery due to the depth and location of the AVM that was causing the pressure. They said that it would be dangerous to attempt it and there were 9 others that could cause problems as well. About a month after my angiogram I began having small seizures, not big ones but it would affect my walking and my right arm for about 10 seconds. I would have 20-30 a day. Doctor put me on Keppra and those went away. I am still on 1500mg of Keppra, daily.
We came back to Uruguay in August and I'm working with my neurologist here.
During my 6 month checkup the MRI's showed a decrease in the size and that everything was looking good.
The biggest thing that I noticed is that I cannot tolerate noises, movement, groups of people and listening to other peoples problems. (Things that I enjoyed before.) I went into the grocery store with my husband and within 5 minutes I needed to leave and could barely make it to the car. (I had to have my husband's help.) It seemed I had gotten better but now my weakness in my right side is back. I sleep a lot. Hopefully it's because I had some coffee's with friends but they told me a lot of their problems (in Spanish) and it really wore me out. It seems like I should be doing much better but I feel like (and my symptoms seem to back the theory up) I'm going backwards.
Thanks for letting me share and any help would be appreciated.
Hey, so sorry about your problems. I have a large AVM as well. But I also hhave Moya Moya disease companied with it. Two very rare disease. I was dx two years ago. Two well know neuro surgist denied treatment. Stayind that any treament would be too risky. I find a thrid nero surg who agree to treat the AVMvia gamma knife but wanted to wait for the avm to shrink to allow a bypass for the Moya Moya.
I related to your issues. Loud noises, bright lights, too many conversations and too many people causing me problems. I too have walked out of groceries and restaraunts. Too much activity will put me out for days. I am not a doctor and cant give you any actuall medical advice but I can suggest that you seek a 2nd or 3rd opinion. I have seen many doctors and they all have their on opinion. Find a doctor who you can trust, one who understand you and your OWN condition and a doctor who feels there make be other options.
Sorry to hear you're having such a difficult time. I have had similar experiences with crowds and noise. After 3 brain bleeds since 2001 I have come to realize there are limits with my condition that require me to adjust my lifestyle. Noise is a big factor, sometimes I have to be alone especially when I can literally hear the electricity humming in the walls. Or sometimes it's just the tone of a person's voice that is like nails on chalkboard. The problem with crowds comes and goes. One minute you're at a basketball game and in your seat watching the game you're fine. However once everyone starts moving to leave creating a mob, that's when I have problems. It's pretty bad after a bleed too. But over the years I've forced myself to go walk the mall, stay active with friends, or just be out in public. I never go alone in case I need to leave suddenly. My doctor told me it isn't uncommon for individuals with AVMs to have these issues. But you have to decide to what degree it limits your lifestyle. Some days you can do these things and some days you just can't. And that's okay, you do what you can when you can. The people who love and support you will come to understand and help you with these issues.
HI, I am from Puerto Rico, and I have experienced some of your symptoms. 1. Losing your strength in the right side is called hemiparesis, it’s because you bled on the left side of your brain. It dosen't matter how small was the bleeding. Apparently the bleeding was located somewhere near motor side of your brain.
2. Sometimes its better not to have surgery and let the AVM alone. You have to balance benefits versus risks. Many people develop seizures after common procedures in the brain, it happen to me.
3. Many small seizures can disable a person because you fall sleep for many hours. This is how your body (brain) deals with the situation and shuts off, like a burned machine. I used to sleep 16 hours a day. I knew when it was going to happen because my body
temperature changed and suddenly I was freezing in the Caribbean.
4. For quite I time a couldn't tolerate places with many people or high noises. This is part of the depression that you go through at the begging. Sometimes, I hear my own blood flowing.
5. Some symptoms persist with time, some go away and as we age others come to visit. Weakness is persistent due to the bleeding, try therapy and exercise.
6. The best medicine is a positive mind and medical follow-ups. Your only go backwards if you believe so.
Take care and keep up your misionary work, being busy is good.
You are not alone! My AVM in the Cerebellum ruptured in Nov, 2014. I had Gamma Knife Radiosurgery in April, 2015. The procedure itself was fine. No real side effects. However, I found out the hard way that I cannot tolerate noises or large crowds. Groups of people talking at the same time sounds like a foreign language that I cannot decipher. I feel dizzy walking among large groups of people, i.e. casino's, concerts, wedding receptions, and especially food courts. I only shop in stores that have carriages for me to hold onto and I tire quickly. I'm not steady on my feet any more and I stumble once in a while. At times, I go left when I'm trying to walk to the right. I pray a lot and I try to ignore and not worry about the AVM in my brain, but I CAN'T. My life like yours, has changed drastically. My Husband has been my rock! He helps me w/o me asking; He knows what I need before I do; he does not judge me or make me feel less than. Most importantly, he loves me as I am. I don't have a problem listening to other peoples problem because my short term memory is not always on point, so I often forget what they tell me anyway! I'm convinced that things will get better for you and for me .. in time. Wishing you the best.
Hi It's worth watching the video on the site about brain flooding. This explains well the effect of lots of people talking or moving around you.
I find this a problem, shops with lots of stuff on the shelves has a similar effect, you just can’t filter anything out and take in far too much information making you excessively tired.
In the early days I used to just fall over when people crossed my path. Even now 5 years later I prefer a clear straight line from where I am to where I need to be, crowds are very difficult to negotiate and exhausting for my brain.
It can also help friends to understand why you go downhill in these situations and take days and days to get over what to them is nothing. Busy days with lots of conversations or stress going on at work is exactly the same - wears me out for days.