So my sister was diagnosed after collapsing at work in May 2010 with an AVM , and after extensive labs tests : MRI, angios, Ct spinal taps,and gamma-knife radiation it is inoperable! I am her older sister only by 10 months and she is my best friend. I cry a lot because I don’t know if tomorrow shell wake up, and I try to be so very strong for her, but the thought of not being able to fix what could kill her is just so very sad to me as well as my family. She is in painmost days and some days with wicked headaches , weak legs lack of sleep,fear of dying, mood changes, weight gain and she continues to work but she has several episodes of fainting/ passing out and being intubated even after being on keppra and lamictol. She has said to me she is a ticking time bomb waiting to go off! I have been at her bedside as she trys to speak but words don’t find their way out, I have watched tears of fear role down her cheek as she suffered with loss of feeling to her arm and leg and I have stayed in MRI rooms right next to the machine that make the loud noises she wishes not to hear!I have stayed curled up in a chair as wires attached to her head itch and she just wants to pull them off and all I could do is play games like who does that intern look like, and threw it all I am at a loss bc I wish I could take it from her and make it go away but obviously I cant! so I reach out to you all for support , words of wisdom and as a family member or a survivor to help me to get us threw surviving this AVM.
Right now my sister doesn’t reach out to me , she doesn’t call, she wont stop by ,and she said its bc she doesn’t want me to see her going through this,( I read it in one of her late night journal entries) I do I want to be there for everything, Im family and I love her , but I understand space too! So thats where I leave it to you all to help me, my sister is my Best friend and I will do anything that will better tomorrow for us. I am at a loss I have been the Bigger Person as people tell me to be for the last several months and I have called written and driven and yet she pushes her whole family away meaning my mom dad and 2 other sisters, so please any help would be much appreciated!
Hey Gwen, I am really sorry for u and ur sister. I have an AVM too - but I am still lucky that I have no problems with it - except one seizure a month ago. I was in hospital last 3 days and they made an angio , but when I left they still didn´t know what to do. I ahve to wait till Monday till I get to know sth. I know how u feel and what ur sister is going through. U can only be there for her, when she needs some concern and help. I have phases too, when I don´t want too see anyone or even talk to anyone. I just wnat to be on my own then and get it clear somehow for myself. I admire ur strength. Hve hope - the medicine devolpes every day and maybe they will be able to fix it or do sth for her soon. U already got a second or third opinion? I read about a guy here…sorry can´t remember his name - who was told from 9 docs his AVM is inoperable and they cannot do sth for him - the 10th said he will do it and he had a crainotomy - and all went well and he´s good now. This was very inspiring for me too. But anyway I am so sorry . None should have to go through sth like this. When u need to talk feel free to contact me. My thoughts and prayers will be with u and ur sister and ur familiy. Love XXX
Gwen: i am really sorry for what you are going through. Having been given same diagnosis earlier this year with same symptoms as your sister it truly is difficult for everyone involved. But i will say i know for the families to feel helpless in helping is the worst feeling of all. So i suggest don’t give up on her and be her ADVOCATE. if the docs say do nothing get a 2nd and 3rd and 4th opinion if you can or have to. Because the truth of it is they may say its inoperable now but when it bleeds to save her the only thing they can even try is surgery. so its never better to wait for the avm to bleed before they do something. I have learned that and thats why i am getting another opinion from Dr. Robert F. Spetzler (Barrow Neurological Institute, St. Joseph’s Hospital in Phoenix Arizona). He is the best Neurosurgeon in the field of AVMs having co-created the grading system used to define the avm threat with surgery. so if you can contact him for another opinion that’s your best bet. dont give up and just let her know you care. let her know she doesnt have to talk for you to be there. you can listen if she needs or just sit with her if she needs but that no matter how bad things are you will stick by her. she might be trying to push you away for fear that if she gone you better off with having good memories instead of the ones where she was at her worst. but dont let her go without being there. she needs you even if she trying to push you away. so hang on and make sure you have someone you can talk to about what its like for you having a sibling with this condition. you gotta keep you strong so you can be strong for her too. it will be ok and on this site anyone can vent and not be judged we all been where you are and where your sister been.
Hi Gwen, I too am so sorry to hear what your sister, you and your entire family must be going thru. I learned about my AVM back in FEB of this year and have to tell you that I am truly blessed for many of reasons and one of those reasons is my sister!!! She has been there for me like I could never have imagined as well as the rest of my family and friends. But my sister has been my ROCK thru all of this and I am so lucky to have her!!! While your sister may push you and your family away from at times, I also look at this as this being one of our strange ways (being the person with the AVM) that we are crying out for help. Your sister is very lucky to have you as her advocate and please know that she needs this regardless of her actions.
Please stay by your sisters side thru this knowing that she truly does need you!!!
Many blessings to her and your entire family - my thoughts and prayers will be with all of you!
/Michele
Thank you you all are so very strong and your support means so much , I really am so happy to have found this website and to have such wonderful people to be able to help and share their stories with me! Its amazing the amount of love and kindness you can find on these pages , THANK YOU from the bottom of my heart !