Thank you for this help.. you are motivating me to do this. thank u!
i havent looked into ucla yet. will they try again on me if they missed the first time?i just dont want to get worse. i have worked so hard to get to this point
I think thats so great you have done all of that stuff. wow!! man i was not sure about going back to school but if there is a will there is a way right....? =) I dont have time to feel sorry for myself iv got to get my life back! i refuse to let this get me down. worse case i die.... but until then iv got to make something of my life and help people along the way =)
Well they will probably do all the scans like they did with me to see if radiation is the best option. I always say a consultation canāt hurt so its good to try that and see what they have to say
Right there with ya. Itās so hard having ur life drastically changeā¦
hi hun
I completely understand you. I discovered mine when I was 16 and my case went overseas. I was told at 16 it would be better if I had brain cancer. I am now 25 and been told I need a 3rd dose of radiotherapy. I always try to believe this happened to me for a reason and its hard to understand why. It is completely normal to be scared but I was told today the chances of my avm bleeding compared to the risks of radiotherapy were higher. Its horrible to be stuck with making a choice but you have to believe you have a future. all the best hun!
Hi Katy!
I discovered my AVM a year ago and have now been told the same thing, the risk of radiotherapy is too high. Are you okay with that or will you get a second &more opinions? I have a meeting with my doctor tomorrow and I donāt know what to say to himā¦ Should we just live with it? So hardā¦
So what risks have they told you about radiotherapy? I have not had a bleed yet. But so far with the two doses of radiotherapy my avm has gone from 5cm to 1cm. I have the best doctors in my state and as I said they went to America and Japan to find out how to treat my avm. I am in Australia and I started with a private doctor who then passed me into the public system to the best neuro in the state but he retired last year so I don't have a relationship with this nuero and he has not earnt my trust yet. I still have the same radiosurgeon. Depending what kind of condition you have here the best doctor is not always a private one. So I have thought about going back to my private doctor for his opinion. But I am scared as the avm clinic with my doctors have never had to do a third round of radiotherapy on anyone in my state before. The last time I was told I needed a second round of radiotherapy I had nightmares so bad I never slept. I was always dying in them and they were very graphic. I as was given medication to stop that. I asked the last time they gave me the radiotherapy to put me to sleep. I was in a lot pain with my angiogram the first time as I have had a lot of scar tissue left from previous tests it still feels like I have a hard rock in my groin. Maybe thats an option for you if that is what is stressing you out. But honestly I don't want to live with it. I feel like you should have more radiotherapy hun. If you are to bleed again it could leave you worse off. What type have they told you that you need? I have read an article on here about the proton beam which I am going to ask my doctors about. I do not believe there is one here in Australia but if it will lower the risks for me maybe it's worth looking into. They only have Stereotactic here. But I understand how you feel I have lost jobs because of this almost all my friends in high school because they didn't know how to talk to me. I have got myself into debt from losing jobs. It's horrible to watch the pressure it puts on your family. I never cry about it in front of them and somehow I always feel like I have to stay strong for them. To add to the problems that come with having an avm I have also just had surgery for endometriosis and adenomyosis it took 5 gynos until one would operate to get rid of the endometriosis. It was so painful! I mean I had my avm stopping me from having babies now this. Honestly I just think the world does not want me to have kids. The doctors have to tell you the risks but the risks of living with it are worse. What I do to get through most days is have something that makes me want to stay here. I got 2 siberian huskies at 20 and honestly with my second round they were all I thought of.Keep yourself invested in projects this year I went back to university to keep myself focused on making myself better. This way I can hopefully get in a career I enjoy. Get rid of any negative people! I am about to quit one of my 4 jobs due to a girl stating she couldn't care less if I died from cancer. honestly keep those type of people away from you. It won't help you at all. I guess I have had a lot more time to comes to terms with my avm but don't let it become you. You still are a person!
Hi Elysha. My sisterās AVM was discovered 2 yrs ago. We didnt get treatment coz we were scared of the side effects. But, her latest bleed made us decide to finally get the gamma treatment. We dont know anyone here in the Philippines who had this treatment so we donāt have any idea if it would work for her. But, we are just gonna have faith in God. Doctors and medicine can only do so much. Ill pray that your treatment will be a success this time. Also, we love my sister so much. I believe your family love you so much too. So, dont ever feel you are a burden. Its hard but everyday is a blessing that our family is doing good and my sister is alive. Same goes for you I guess. 
KEEP THE FAITH BELEAVE IN YOUR SELF AND USE THE SELF DOUBT PITTY AND DOWN TIME TO MAKE YOU STRONG.MY SON ALSO 26 HAD A BAD BRAIN BLEED AND 6 MONTHS LARET AND EVERYCOMPLICATION ONE PERSON COULD GET HE GOT EVERYTHING BUT KNOW FULLRIGHT ARM MOVMENT LEFT LEG IS GETTING THERE AND ALLTHE FEALING IS BACK ON HIS RIGHT SIDEWE TRIED GAMMA KNIFE AND 2 YEARS IN IT FAILED BUT HIS AVM WAS HUDGE MY SON WAS A MUSICIAN AN PLAYED THE UNDER GROUND CEAN IN TORONTO I WE CAN HELP OR YOU JUST WANT TO TALK I AM DANS A RICHARD 905-ā ā ā ā ā ā ā ā CELL 289-ā ā ā ā ā ā ā ā ALSO STARTIN TO TALK A BIT KNOW
Awe thank u kate. Its hard when you have to make drastic decisions for your life and love ones. I think the best thing you can do is do research and leave the rest up to god. We are all searching for something to fix our lives and not be sick. All we can do is stay positive thats one thing we CAN control
Wow thats a blessing you have a child and great to hear your doing better. Yea im trying to get as strong as possible so i can continue my life. I know im better off than some other people with AVM's but i think as long as i keep my head down and make progress every day ill be ok. Hopefully god can bless me with a child in the future but thats far away =) What are your side effects?? So your gama worked then? Can you drive and live normal?
"iv lost two boyfriends because i was sick"
explain..! Sound like real jerks...I can relate.
"All we can do is"let go and let GOD."
Well, I'm an atheist. To each their own. I put my life in the hands of my doctors and am grateful to experience 21st century medicine.
I finally met someone who accepts me for me. How are you ?
Hi id like to connect and speak with you. I hope all is well and I hope he is getting better. message me back so I can send you my info
Elyshaā¦I have been battling my AVM (IVM) for approx. 8 years now and I experienced 8 years of a similar battles and sought help from various avenues. I finally sought help form my priest and I was quite surprised at his response to my request for guidanceā¦whyā¦he helped me come to terms of reality and that is that we are all going someday and what was important to me was whether or not I believe in Christ. I do and always have since I was a child and with that thought I refocused on my spiritual beliefs which has helped me more than once in my life.
I have had many surgeries to deal with my illness and managed to make it through up to this point. Since then my wife divorced me, both of my parents have recently passed, Iāve been professionally demoted due to my now poor memory so Iām now monetarily poor, Iāve lost my beloved dog, I live in my camp trailer, etcā¦ I can no longer do physically what I used to do but Iām working on it. Iāve come to realize that I have many positive things to be happy about and Iāve accepted my current sate of life. I have three children which are now adults and they have all acquired 4 yr college degrees and have not ever been into any trouble. My youngest is now pursuing his Graduate degree and he has taken on the role of caring for me as his education is in the medical field.
Time, like for me, will help you and once you to accept your situation your life will get betterā¦think about the positive things in your life as I know you have them. As for your previous boyfriends, itās their loss as I can judge that you are a good person. Once you go thru the 3 psychological phases of such an event such as yours, life will get better. I will pray for you and you keep fighting as you will prevail over this situation.