Haven’t been treated yet but since diagnosis have appreciated life more. Am planning to do race for life and similar challenges to raise money for good causes!
I was treated for my Left Thalamic AVM via Gamma Knife in May of 98. I was told to change my life style, but what did I know or care as I’ve always been somewhat of a badass. I continued with my headaches for a few years, and then decided to get on with life. I started scuba diving again, being told all along by many not to do so, but what use is life if we are not going to live it. Ahhh being young and full of life; lesser daily pain to deal with always helps too.
Fast forward to today.... Just went back to work yesterday after three months off trying to find resolution to recurrent AVM I am dealing with. So looking forward to being productive and tried to do something that I’m not to good at and that’s to take it slow. Was great to see my team and received all sorts of support and encouragement from them. I kinda wore myself out and with Fort Lauderdale’s heat I had a difficult night and now morning.
I’m having a bit of a hard time trying to accept that I cannot do the things I used to do. It’s strange I am physically fit and healthier than ever (other than my avm issues), I take good care of myself and it shows which is often misunderstood by others. I’m often told “man your looking great”, so I jokingly say according to Billy Crystal song, it’s what matters most, but on the inside I would give so much to be able to function and smile as I used to.
Bottom line, I will not go silently into the night my friends, I will continue to do what I can to be an AVM Survivor and I ask God for his forgiveness when I am weak as I do not like myself when I surrender to the pains I deal with. Life is beautiful, that I’ve always known. I now channel my frustrations and pains into positives and try and help those fortunate ones who have little to contend with on how to see the real beauty and blessing they have, as I too remember how blissful it was to be ignorant.
May he that you reach out to hear your heart
gil
I love this question. Im only 6 months post craniotomy and they told me I would never walk again. I never expected to be rock climbing, biking, skiing and swimming already. Our next feat is to have a baby! My priorities have changed and I've climbed the tree to see the world!!!
Am interested in humanitarian projects, signing petitions, where relevant and people power.
Am a believer in causes and helping where I can.
Studied for and got a degree.
Lost, found then lost then found my sense of humour, repeatedly re: life. You've gotta have a sense of humour.
I agree with the sense of humor thing. I'm so glad you mentioned that because it can be therapeutic. Yes it can be used to avoid things, but you don't do that I'm sure ;). You gotta laugh!
This is directed at dreyx200:
Can I ask, how old you are, the exact location of your bleed, and are you still in physical and other therapies? Are you working on walking or is that not in your future? And did you have surgery, gamma knife or an embolization?
Hello Leslie,
I was so happy to read your post because I am a 64 year old AVM survivor who was diagnosed in 2004. You are the first AVM survivor I've come across with an AVM like mine. My AVM was high flow off my left internal iliac artery. I experienced pain and could barely walk @ times. Miraculously, my AVM closed after 5 years of treatment. Although I still have residual pain, I am blessed to be alive and able to enjoy my wonderful family.
Best regards,
Kathy
When my family doctor saw my MRI report, he told me husband to take me straight to the e.r. and to not do anything to jar my head. Then, my neurosurgeon told me that surgery could cause loss of left-field of vision (I had GK instead of a craniotomy). Since then, I have returned to dance classes and bopped myself in the head with my practice poi, I still have my vision, and I'm still driving my car and teaching reading.
My AVM was an emergency situation. I woke up with a horrible headache and told my mom (I was 10 years old at the time) I had to get to the doctors. I took a seziure and went unconscious. My mom pulled into the first doctors office she found and called for help. They got me into Children's hospital Boston and I had surgery hours later. I was in a coma for 4 days. When I woke up I went to rehabilitation for 10 days and came back miraculously quick. They told me I wouldn't be able to drive (I do) fly an airplane (did that) be in school full time (did that have a Bachelors degree from a top university)... Anything is possible, so my advice is never listen to the can'ts and nevers!!!
I became a distance bicyclist. My infarct was as age 17 in 1982. After becoming an adult, I rarely rode a bicycle, but always dreamed of doing the long rides when I would see one come through my town. Growing up an athlete, I was frustrated with not being able to run (or even walk without stumbling). So, I bought a "Walmart bike" and started riding daily. Soon I was doing 5 miles, then 10, then 15 miles on a regular basis. I remember doing 80 miles in a week and thinking I was riding to the moon and back! My friend soon gave me a Trek road bike when she upgraded to a VERY nice bike. I rode that bike for hours. While I have much less control and sensation in my left leg, I could at least ride. That made me feel alive! I have had the road bike for just over a year and plan to ride in the R.A.I.N. ride this July, which is a ride across the state of Indiana (where I live). It is a 160 mile ride in one day! I am training now. I don't know if I can finish, but plan to try! I am 48 years old and I will never give in to this debilitating AVM! I am a survivor! And, somedays I feel I am not... Thanks for letting me share.
Hello all, my apologies for not postings for a while or replying when I could have. I've as you all have been going through difficult times. I've been using the time I have to do what is necessary to put things in order. Oddly, other than my loss of weight due to my physical inabilities and a heart attack this Jan 6th, I think my body will go on. On the other hand my mind with all these %$#$#%$$ effects are ruling my life. I can bathe and feed myself and that's pretty much it unless I push myself, which is what I do when my family are around. I really don't know how much more of this I can tolerate.
Please don't get me wrong, I love life and have had a great life.... but this is no way to live, this is truly torture. My symptoms are becoming exponential and I have given into high risk operation if there is a neurosurgeon who is willing to take on my case. I wouldn't mind if the doctors would sedate me for a few years as they review and seek options to address this AVM.
I sent out my packet (MRI's MRA's, reports, etc) to a Doctor Ogilvy at Mass General in hope he will present options. Unfortunately my AMV is in the Left Basal Ganglia, Posterior Thalamus and in the Quadrigeminal Plate Cistern which leave little possibility of operation, but it's worth trying. In addition all this leads to a large draining vein which is pressing up against my brain stem. I think this is where the affects are coming from, it's like my brain is being beat up from the inside.
All this said, why did I come back here now. To say to you all, I am sorry that you have to deal with such an awful condition. Mortality is one thing we all must face, but to deal with these life crippling disabilities is another. I pray that peace be with you and that God offer up his grace to heal you of your AVM.
In my personal and respectful way of saying, If you are mobile, get up and do something, life is meant to be lived. If you are too ill as am I, may peace be upon you and love be with those that have to see us in such pain. I feel your pain... This condition as do so many other rob our families of the joy they deserve. I do not know what else to say...
Be Well
Gil
I had started having migraines at a young age but the intensity and duration of each migraine started getting worse around 21, shortly after having my second son. I have always had severe mood swings and anger issues. They have gotten better as an adult but since having chronic pain for the past year and a half, I get snappy sometimes. I started having hot flashes and short term memory problems in 2010, gotten worse the past couple years. The past year and a half though, have been crazy. Intense pressure on the left side of my face and a tender spot on the back of my he’d that brings tears if pressed too hard. My entire right side gets tingling sensations throughout the day. Down the back of the arm and into my last three fingers. My hips get tingly and I get sharp pain into my thigh. The stabbing pain into the back of my left eye drives me insane some days. My left eye tears whenever I bend over or lie down Migraines lasting a week at a time with maybe two days of relief before another one starts. Weird intense pains throughout my body with no relation to an injury. I have been to the er half a dozen times this past year over thinking a bone was broken just to he told it is muscle pain, my neurologist says could be from avm but is unsure. She found it last July after we thought I had a seizure but tests were negative, thank God. On propanolol to try to prevent them and help with migraines. So far, there is little difference. Prayer and meditation are only relief. My husband and kids keep me smiling 
I am still quite numb since being diagnosed with the AVM, however, once I have the operation to remove it, I will see this as another chance at life and intend to do so many things that were only pipedreams before and were never really going to be acted upon.
I suppose I am being a bit fragile until the operation is performed as I am scared witless that any exertion will cause a bleed or rupture.
I'm wondering what became of this guide. Is it on this website somewhere? I'd love to read it! :)
I know an e-book was created at some point, Kimi. I will see if I can find out how you can have a look.
great I would like to see that!
Just wondering if you ever got handwriting ability back. I graduated from college and it took me 13 years, and 18 brain hemorrhages later. It was a wonderful feeling. My AVM first beld at age 15, so I was aware of it's presence. Stress doesn't help, and school was stressful. Just as I was about to take the final, I would have another hemorrhage. Over and over again, but I kept plugging away and thought, if I'm going out,it's going to be with some knowledge!
38 years later, it reared it's ugly head again and despite two proton radiation treatments, it was STILL there and had leaked creating a hematoma. I now was a canditate for a craniotomy and that has left me with great difficulty writing with my right hand. I would NOT be taking my own notes. I also vision problems and a hemionopsia. Any ideas on what may help? Best to you!
My husband was not expected to walk again after his embolization in 2003. After the surgery, our social worker already had us signing up for SSI and ordered a mobile-chair already. My husband was expected to be in rehab for the next 6 months and I was expected our 2nd child. I went every day to the hospital and saw the nurses' handfeeding him and dressing him. He felt so out of place with all his roommates were seniors. I guess it was an eye-opener and motivated him to relearn everyday skills faster as he was able to learn to walk and talk within a month. His equilibrium was the hardest to deal with it but amazingly he regained his strength again within weeks. I think seeing me deal with our first born 2 year old and seeing how I was pregnant again and we were still young, helped his brain recondition and heal faster. His neurologist later said he didn't want him to settle for lifetime disability and helped us get Sean back to school and job rehabilitation again. Sean is considered fully recovered, but still having trouble keeping a job due to his limitations - hard to focus, short term memory, fatigue, irritability and depression at times. Every day we struggle as he has agitation mood swings that come and go out of nowhere and unpredictable. It's a challenge but we get by still.
I love hearing these stories . I was just diagnosed in January this year had an Anton February and now going for a follow up appointment April 12.
I now have to have an embolization I have a vein running to the avm with a small bulge in it .I am scared to death of something happening . I stopped going to the gym and I love my gym but i gave it up for a couple months until this is over. I said June I would go back I promised myself if I get through this embolization I will live life with. Huge smile 
.
I have never been so scared of something in my life and I have had a lot of bad happen.
So hearing these stories makes me so happy .
Thank you for the positive words