Status AVM

Well I just sent my lastest MRI to Jefferson awaiting their results. It has been three years now since my last treatment, in total over the past six years I had four embo’s and two gamma knife’s. My Neurologist called with their results which indicates no change from previous MRI “no obliteration” but good news “no bleed”. Don’t know what is in the future, more procedures or coming to the conclusion they are not able to obliterated my AVM. What ever the result I am going to spend my life enjoying my family and spoiling my grandchildren. The past six years (though I was diagnosed thirty seven years ago) have been an emotional roller coaster and it may be time to get off and enjoy my life the best I can. Never liked roller coasters anyway. LOL I will not give up but I may have to look at it as it may not be meant to be.
Thank you to all my friends here for your support and I will continue to keep you updated.

Well, “no bleed” is certainly a good thing. Heck, even a single day without a bleed is a good thing, so to go three years without one is 1,095 times better!

Lee Ann my dear friend I hoped you would have gotten better news. You hang in there and enjoy those sweet grand children…if you need me just call I,m here for you !

I’m sorry to hear that there is no change. Only god knows what are futures hold in our avm jounrneys. I wish you the best. I to have to have gamma knife done again. I have another mri in march and that will determine when they move forward on the date and such. I can’t believe some days that this has been 3 years of my life already. Remember not having a bleed is next to being as good as being obliertated, in a way right???

Lee Ann I’m so sorry you didn’t get better news…but your positive outlook is refreshing. I wish you well…

Hi Lee Ann! Keep your chin up! You have a beautiful family to enjoy! Your fight is not over for sure! Rossenwasser is your neurosurgeon right? Who is your neurologist? Jaclyn sees Rosenwasser and Skidmore is her neurologist who controls her seizure medicine. Jaclyn had 1 embo and 2 gamma’s and then the last radiosurgery in April was Linear Accelerator. She didn’t start with seizures until this past may after the linear accelerator. Her original avm was obliterated but then a new area formed. Her situation is similiar to yours as she was 6 when she bled and is now 13. Please enjoy your family to the fullest but please don’t give up hope! Hugs,
Kim

Hi Lee Ann,

Wish the news was better, but I’m glad there wasn’t a bleed. I applaud your attitude. I hope someday you and everyone else with AVMs will be healed. Until then, may your have tremendous experiences with your family and grandchildren.

All the best,

Debbie

Thank you everyone for your support! I will never give up hey I waited 30 years before any type of procedure could be done so if I did it once I can do it again…well need to factor in I’m a little older now. lol

Thanks for the update. Don’t give up.

wow!!! you are truly blessed to be alive!!!