Living with this AVM at 26yrs of age

It has been a little over a year that my spinal fluid filled my brain and caused me to have a stroke. The doc believe my gamaknife was a failure. Im fighting everyday to workout. im scared at times i might do to much or it might activate something. The worse thing i can do is live in FEAR that everyday i might die. Scared i might be a vegetable or will die before i have kids/ get married. Truth is i get depressed when i think about these things. I stopped stressing iv lost two boyfriends because i was sick, but thats life i guess. Its normal for us to be scared but the worse thing we can do is BE ALIVE AND NOT LIVING EVERY MOMENT! I see im a burden on my family and it kills me because i was a college athlete and independent, but GOD has done this for a reason. Im NOT angry but i do at times have dark thoughts or get depressed. I had to stop comparing myself to people my age and learn to ACCEPT this. I think that is my hardest challenge!!

I hear moms with children that have AVM or parents who have babies with AVM'S and realized "Elysha you have it easy." My heart goes out to those families. We can drive ourselves crazy thinking about the " what if's," but lets just take it a day at a time and remember. We are ALIVE... being on here always humbles me. Im scared about trying this gamaknife again but maybe ill continue my life without the treatment. Only GOD knows really. All we can do is"let go and let GOD."

If you guys have any advice if i should or shouldn't do this feel free to message me. Ill pray for everyone on here!!

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I can't offer any advice about medical treatments, but I can tell you that you are not alone as far as your fears and concerns go. I too have some of the same feelings from time to time. All of those thoughts are normal and should be expected for someone that has gone through what you have. You must continue to focus on the good in your life and enjoy every minute of the time you have. You can not know what your future holds, nobody does. You may be limited physically in some of the things you use to do, but discover or rediscover those things about you that make you shine, smile and enjoy life to its fullest. I'm sure if you look you'll find one or more.

Best of luck to you and God Bless!

Let go and let God is the answer. I experienced my AVM of the brain 5 years ago. Since that time I have had 5 angiograms. I was doing just great until the last one. Somehow, I ended up with fluid building up around the brain. I now have a shunt under my scalp. Yes...all of this is frightening, but God knows best. All of us dealing with the unknown have to trust in him. I was 68 when I had my first AVM and stroke. I am now 72 years of age. I know that you are young....but you do have your whole life ahead of you. You will have to know and believe. As far as your boyfriends leaving, release them and let them go. When you love someone, you stay no matter what. Someone else will come along that will be there to love and care for you. I will keep you in my prayers.

Hi Elysha,

You're not alone in those feelings. Even though I'm much older than you (I'm 51). I still get them from time to time. I get homesick for the "old me". The days when I felt healthy, before I had the problems I now have.

Is what gets me through it is - I NEVER plan anything definite. I have ideas and thoughts of things I want to do or people I want to get with. But, I learned the hard way to "go with the flow" and take it one day at a time. It's less stressful that way (wink). Many times I planned something and my health wouldn't/won't let me. I have multiple symptoms and any one of them can act up without a warning. All of my friends know if I say I can't do something that day, they know I can't. That I'm not just blowing them off. If it's something as simple as I'm not able to drive that day, then they will offer to pick me up.

It can be a difficult life, no doubt about it. For myself - I simply don't take life to seriously. I have two small avms left. Two of the drs I saw told me I'm between a 70% to 84% chance of it bleeding. That was three years ago - What do they know? (laughing).

Life is meant to be enjoyed. And.. That's what we do. One day at a time (smiling).


I enjoyed reading your comments. It is very difficult when you have always been a very active person. Sometimes I get tired of telling friends that I am unable to visit because my energy level is so low. They will say,"but you sound so great on the phone"...I know I sound great, but my body stays so tired. Am I the only one? It has been a year and a half since my last surgery. I feel that by now, I should be stronger, but unfortunately no. Do you have a great deal of nausea? What about sweating and feeling faint after you have tried to walk or stay up for a period of time? I have limited "taste buds" Food does not taste the same anymore. Do you have that problem, or am I the only one. They say that each person has different symptoms. My vision frequently blurs. I have had to change the lens in my glasses twice in one year because my vision keeps changing. I would appreciate hearing from anyone who has similar symptoms.

i was also 26 at the time my avm bleed it has been a struggle because i have stroke like symptoms as they call it my left side is weak my arm and hand does not work normal but im working on it. you def cant compare youself to other people your age because they haven't been through what you have.

I had life threatening bleeds when i was 17, 18 and then 24. 2 doses of GKR since myself. At the second bleed, i lost the power of speech and still have serious aphasia problems.

But ive never really let it beat me - as we will all die one day......thats the way it is. So i just try to live everyday while i still can, i can still walk, and do things, and enjoy simnple things....makes me happy anyway....

rich i understand what you mean. its been hard getting back, but i think im just scared of the second bleed. You are way stronger than me. i cant imagine what your going through.. Did you do anything to activate it..? Should i try again with gamaknife

thats exactly what im going through. im right handed and it doesnt work as well. i dont feel things on my hand. my right foot has a small drop so it messes up my hip and knee. Im working on it everyday but it feels at times the progress is slow. This has been a blow to my self esteem but all i can do is push through this. To be honest i cant imagine anything else happening to me not sure if i can deal with it. Its all in gods hands. i have to REALLY trust him. let me know how your progress is. maybe i can tell u what im doing to workout to help you

After my leak last year. I had crazy headaches and sometimes my brain felt lije it was going to pop. but after the liquid went away i got better and could and write but after a couple trips to the ER. i lost feeling in right hand and foot. My vision is good but my issue is sensory and feeling. my foot drops a little and i have leg spasms. if i sit to long when i get up i cant move my leg. my memory i forget a little but concentrating can be a little difficult. The POOL has been amazing to me and using bands in my exercise. take vitamin B12, B6, fish oil and folate. and OMEGA3. help stimulate your brain and to rebuild them. If you need help let me know i can tell you how to use bands. you have to slowly build yourself up!!

Ben im with you on that. i live where everyone is on the go. i hangout with family and some friends but lost touch with alot of people because they dont understand. With your avm's. what do you do to monitor them or how your life is. Are u active..?workout? are u going to get surgery ?

Thank you for this it feels good to know someone understands what im going through!!

My daughter(12 years old) has a large (between grade 5 - 6) AVM on the left side of her brain. It was too big to remove and she would have had 100% deficits due to surgery. Doctor also said emboylizing was not an option. She had Gamma knife 14 months ago. At 6 months no noticeable change in AVM size. My wife was disappointed to say the least. At 12 months it is shrinking and the doctor says it should continue to do so for about another 18 months. Fortunately for her she has not had a bleed and we pray that the radiation continues to shrink the AVM. She also is able to go off her seizure meds after her last EEG. GAmma knife is working for us. You should consider strongly about doing it again. We are lucky so far as her life has not changed very much. She was on honor roll last year (6th grade, 3.79 GPA) and continues to play soccer and softball. NOt sure where you live but if your in the MIdwest I would recommend going to the Cleveland Clinic. They have been wonderful through this process. On our first visit our doctor gave us his personal email and cell phone number. Please know that God has a plan for you and he will not give you anything you cannot handle. His strength will get you through. I will pray for you and your decision.

Dear Elysha, I am a retired teacher who also has an AVM. I was much younger and coaching basketball when I lost balance while coaching a move that lead to my doctor ordering an MRI. I too had trouble accepting that I was "born this way!" But I was. I now understand that my body like everyone else's is far from perfect. We all have a physical side and a spiritual side. We have to take care of both. God and his earth angels will help you with the spiritual aspects but the physical aspect is up to you and the talented doctors you will need. I do not believe God made me this way. This is a birth defect. And may be genetic. My brother also has one on his liver. This is just a very imperfect mother nature. God has helped me so much to get through the physical related to my AVM. I am blind on the right sides of both eyes as one example. Stop getting depressed by reaching out to others in worse physical situations. They are out there. Try not to dwell on the AVM. Live the time you are given as the precious gift it is! Now...mine was discovered in 1998. I finished my teaching career which included coaching high school football & basketball as well as speech & drama, TV journalism, etc. I taught freshman English for 25 years as well. When the headaches hit...I stayed home. When not I lead as productive a life as I could. Look up girl. Keep your eyes on what God expects of you. #gogirl

Thats such great news to hear! Im happy how good she is doing. I wanted to coach girls softball to get them scholarships but i cant throw nor hit the ball. i really miss that part.This will be my 3rd year after i had the gamaknife. With the brain leak i had last year it made things more difficult for me. When my brain filled up with liquid it moved it 6mm over. there was so much pressure that it made more vessels weak so i have a higher chance of having more vessels pop. They will look at me again soon but they want things to calm down. the main problem i have is insurance. im on a friends insurance but im not sure how long that will be. I dont want to rush things but i also dont want to wait either. Thank u for giving me hope. =) sending prayers your way. Tell your daughter to stay positive and to enjoy sports.

I lost touch with a lot of people too through all of this. I'm ok with it though - I learned who my TRUE friends are and who is there for me when I need them (smiles).

The only thing I do to monitor my avms is I get a new MRI every couple of years. Or.. if my symptoms have gotten worse or changed, then we'll check it. Since I refuse to have another G.K. done, we just keep an eye on it. I see a pain management dr for my pain too.

I can't be near as active as I use to be. My body likes to retaliate when I do to much. I have constant vertigo now and I get seizures when I push myself. I have a 3 year old Goddaughter that I help raise and she stays with me 3 to 4 days a week. Needless to say - she keeps me pretty busy. I usually lay down when she does and that gets through my day. Other than that - I keep busy doing things around my house. Mowing grass, paint a room, things like that. My sister and her husband live on a farm and I sometimes help them and I do things for my mother, who is 77. I keep busy but, not as much as I would like to. My friends give me heck all of the time because I have a tendency of pushing myself, then I pay for it. But,.. if I take a lot of breaks, then I'm usually pretty good (smiles).

I know you’re scared to do treatment again but if it can help then you should. There is a great neurosurgeon team and radio surgery team at UCLA that I see if you’re interested in their info. Don’t let the AVNbeat you. Beat the AVM

Go to Dr. Duckweiler at UCLA. In my opinion, he’s a miracle worker. He did my son’s embolizations. Other doctors said that there was nothing they could do. The AVM was just too big. My David had a 1% chance of survival with surgery and a 75-80% chance of severe damage. In other words, he’d never talk, walk, potty train, etc. Doctors told me to be prepared for basically a vegetable. He had a 1-3% chance( out of that 1%)to be completely normal. David’s AVM was HUGE( 3in x 3in x 4in) plus he had an aneurysm the size of my fist and it was all in my 3 month old baby’s head. I got my miracle. David is 100% intellectually intact. He still has hydrocephaly and complications from shunt failures but he’s all there. I can’t guarantee that you would have the same results but I would go to him any day of the week. Go to him and find out what your options are. What’s worse: not finding out if anything can be done and going on like you are OR taking control back, getting it fixed and being yourself again? Me: I’d go for fixing it. The worst would be not doing anything and always wondering( your family too). It’s scary as hell but God would NOT give you something that you couldn’t handle although it may not seem like it at times. My prayers are with you and your family. Now go call your doctor and get some referrals to get that AVM checked out and find out what can be done.

Sorry to be so bossy, but I believe in you. By the way, my son will be 12 in October. Not bad for someone who wasn’t supposed to survive past 6 months.

thats an amazing story. I truly believe that children are the strongest. Many are fearless and yet not selfish. children show us things we didnt know we had. iTRULY believe your child is another type of strong! Showing people like me at my age that if he can get through it so can i. As long as im alive ill always be fighting to live.... =) Thats why i workout so much. Determined to get back and show people they can recover from this. I plan on posting a video of me and my progress. I just dont want to upset people... i am in good condition and not having that many problems. i just dont want people to get upset or discouraged because we all have diff stories and healing process. Im really happy for you. im sure it was really hard seeing your son at a vulnerable state i couldnt imagine. you son get his strength from u =)