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Comment by Heidi on January 17, 2012 at 6:39am

My husband has a massive avm on his whole left side of his brain, and 8 blood clots,one on his spinal crd, does anyone elese have this?

Comment by Heidi on January 17, 2012 at 6:37am

Comment by Rosario Salinas on October 29, 2011 at 7:13pm

Has anyone know anything about the Miami Project at the Jackson Memorial Hospital (Miami)? I will have my next appointment on Nov. 14, 2011. I have a complicated AVM inside if the Spine (L5) plus a lot of tumors around that have created bone destruction (including 3 of my vertebrae) I would like to know if that would be the right place to look for treatment. Does anybody know?

Comment by lisa barrett on October 17, 2011 at 11:50am

mydaughter is 17 and they have said she will not be able to drive as weakness on right side is there anyone else out there who can drive thanks lisa

Comment by Rich on October 17, 2011 at 11:40am

Hi Dan,
I suffered a bleed in 2002 and not a day goes by that I don't atleast think about a re-bleed. I too have children, 5 y/o girl and 7 month old boy. I lost my mother (42 y/o) to cancer at the age of 18 and I am overwhelmed with the fear (and anger) that I might be taken from my family prematurely, as my mother was. Many people that know me superficially say that I am gregarious and fun. Yet, I am very serious, anxious, confused and angry on the inside. I go through periods of intense depression/anxiety, mainly from not knowing my fate or what the future will bring. I am certain this is a natural reaction but I don't like feeling this way. I love my family so much and I don't want to leave them. I read lots of self help books and am seeing a therapist. It helps. I know I just need to "let go, and have blind faith in God" but it is easier said than done.
-Rich

Comment by marcylynn on October 17, 2011 at 11:22am

Hi Dan, I've been dealing knowing about my AVM for the past six years. I have not had a bleed, except I think I had one when I was about 11yrs old when I think back, but I was told to just be monitored because of the size/location. I have had a lot of anger & frustration & mixed emotions thoughout the years & what I've had help me is to learn to meditate-clear my mind & sit in a nice quiet place for even 5-10 minutes seems to help. Have you read "My Stroke of Insight" by Dr. Jill Bolte Taylor? She gives a lot of advice& talks about how to get your mind on different "circuits". When I start having anxiety or thoughts I try to tell myself to think of something fun or something that I love and get on a different "circuit". If you haven't read her book I would recommend it-it's not a long book & I think it might help :) Otherwise maybe try talking to a counselor or find a support group in your area. I wish you luck & email me if you need to talk!

Comment by Dan on October 17, 2011 at 11:10am

Hi Everyone,

I was wondering if you might have any recommendations on dealing with frustration or depression, or just that uneasy feeling. I had a bleed for the second time this past week, and while the symptoms are not as bad as the first time this happened 4 years ago- a lot has changed in my life. I have a young son, and a daughter on the way in 6 weeks. I am typically a very happy and outgoing person, and I've just gone through periods over the past week or being incredibly sad, frustrated and even angry.

Any thoughts, ideas, or recommendations would be greatly appreciated...

Thanks,
Dan

Comment by marcylynn on September 28, 2011 at 1:58pm

Hi Jimmy,
Maybe it means that they will monitor you? I know with mine they said it was inoperable due to the same they told you and said every year to every other year I had to come in to get an MRI/MRA to make sure it hasn't grown or changed. They told me to stop taking asperin, which since I haven't-even for mild headaches-I really haven't gotten any bad ones for almost a year now! I've known about mine for about 6 years now and have been living with it. Pretty depressing at time, but hope to get a second opinion, which you may want to do as well. I wish you the best & keep us posted!

Comment by JimmyB on September 28, 2011 at 1:31pm

Hi everyone, we got a letter back from Dr Spetzler in AZ saying that he dosen't recommend surgery a this time, due to size, location, and drainage pattern. So gotta live with it and be 'treated clinically', whatever that means. Still get plenty of headaches, but the really crippling ones have stopped since I quit taking Motrin as soon as they found this and said to stop. Can anyone explain what they mean by 'treated clinically'?

Comment by suzie on September 18, 2011 at 4:23pm

Hi Megan, yes, to all of your questions, and I believe it is a combination of the physical and mental thoughts....to that end we get into a vicious cycle that beomes hard to break so for me, I have signed up for a mindfulness and cognitive behavior therapy group so that I can learn some coping mechanisms and try to distinguish between the physical and the emotional...it is a hard path we follow, and you will find your mom will have good days and bad days, I have an inoperable AVM and there are days when moving forward, just living feels like I am existing in molasses, if that makes sense, just walking my kids to school takes it out of me, but I keep doing, moving in order to feel present, to be here and then some days I just want to scream and hide...be there for your mom, hug her when she needs it, and let her know that we are all here for her....

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