36 y/o female diagnosed a month ago with CCM (cerebral cavernous malformation) in my brain stem. Symptoms unchanged & have been unable to go back to work
Welcome to the group!
Hi Lauren, and welcome , I hope here you will find what you are looking for if that’s information then you hit the jackpot !, we have like a library of information on all types of avms we also have a very supportive community of over 8000 members , welcome again and feel free to post any new topics with questions,
I was diagnosed with a cavernoma in my brain stem exactly one year ago tomorrow. I was told it was inoperable because of the location. I thought my life was over and I sunk into a deep depression. 1 year later and I’m back to work and only suffer from headaches and occasionally a dizzy spell. Hang in there. If you have any questions or comments for me I’d love to share.
Thanks so much for reaching out! It’s nice to know there are others out there with my condition. So just to be clear, you did not have surgery, correct? I’d love to hear more about your story! Did it bleed, re-bleed, symptoms, etc… that’s awesome that you are doing better & have returned to work! Gives me hope that one day that’ll happen for me. Right now it seems like my old life is OVER!
Hello again Lauren,
No I did not have surgery. My neuro surgeon told me surgery was only an option to save my life as it would have permanent side effects. My first and only bleed was exactly one year ago. It took doctors the days to discover what was wrong with me. My cavernoma measured .9 cm by 1.2 cm. When it bled my left leg went completely numb along with the right side of my face and head. My vision was blurry, headaches like I never felt before, and my equilibrium was almost non existent. I could only walk by holding on to something. Nobody knew if these were going to be permanent or not. I tried staying positive but I thought my life was over. My family was a big help and pulled me through. Lauren our brains have suffered a traumatic injury and they take a long time to heal. I was bedridden for 3 months but now I’m back to about 95%. Just some headaches and tingling in my leg. Having a hard time getting doctors to give me meds that will help my headaches because they don’t want me getting addicted,but other than that life is good. I’m confident you will bounce back from this, just hang in there. Please let me know if there’s anything I can do to help.
Thanks Shane! Feeling pretty hopeless & scared out of my mind right now! Also… I went to the er in 2011 with similar symptoms & was told nothing was wrong. My dr just looked at my scans & said that the malformation was there in 2011 & it did bleed. However the report says nothing about this!!! Now I’m even more frightened than I was. Filled out a living will today - that was fun! The gravity of the situation has got me a f**ked up. Any new twinge or pain & I think “this is it”! The pain is really bad. Seeing a pain management doc on Monday who hopefully can help.
I know how you feel. I was having symptoms back in my 20’s and nobody could figure it out either. I’m 43 now. You will get through this. I was scared to do anything that might raise my blood pressure. You’ll eventually get over that too. You can’t live your life in a bubble, just enjoy the little things for now and you will come out the other side. Let me know how it goes with the pain management doc. I need to call one myself. Before I go rob a pharmacy. Lol
Yeah, don’t do that lol and I know… easier said than done though. I’m getting by from day to day, at this point, just hanging with my lil man! He’s literally the only reason I haven’t gone off the deep end yet
Hey Lomil I’ll admit it sucks with you having to deal with all the pain. I didn’t have that much pain after my surgeries but couldn’t go a week with out have a seizure. So think positive. To this day I’ve gone over a decade with out one but the years 2000 to 2003 were the dark ages. So your probably in that time period now but you’ll get threw it some time.
Hi Lauren welcome to the group. I know what you are going through. I have an avm in my head. I’ve had radio surgery but am still suffering tiredness , great anxiety and occasional severe panic attacks . As you say… one day at a time.
Welcome to the group. I have not been on here long but find it a safe place to discuss my AVM (spinal c5-c7 and inoperable) with people that truely ubderstand. I am 46 and had symptoms for many years but only diagnosed in December 2015. There has been some increase in these symptons and some days are worse than others. A suspected bleed in November 2016 meant I was off my work for 5 weeks but now back workin adjusted duties for now (I am a nurse) till a different post comes up that is less demanding and risky. Yes its going to be a career change for me but positively i am still going to be workin and never know it may be better ! Keep positive Lauren xx
Hi Lauren, I can’t work to. I had to get disability. I been on it five years now.