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AVM Survivors Network

Feeling helpless


#1

hello everyone I hope all is having a decent day my hubby is new to all this as I am I woke up last Friday to him having seizures behind me terrified the life out of me. when he would come out of one he didn't know who anyone was and was very frightened and started fighting ems who was trying to help him. his mind was not working at all and he didn't remember any of it. so after ems called back up and ten cops and two ems drivers finally got him tied down so we could take him to hospital to get him help he was still having seizures during this time he would have one come out fighting and go into another one. that was the longest ride and wait in my life. I waited in the waiting room for what seemed like a life time just for some information if he was ok or not. finally this very nice doctor came out and told me they had put him in a medicated coma and breathing machine to let his brain rest. this is when they found the AVM and changed our lives forever. He was put in icu for 3 days then a regular room on the neuro unit. the seizures had messed up his kidneys and liver and threw his magnesium and potassium off his muscles had been damaged as well so he hurt all over. they performed the angiograph and then told us it was inoperative due to the size ( 6cm). so know he feels like he was just sent home with very little hope. and so he keeps pushing me and our kids away. I don't know what to say or do to help him deal with this. It kills me to sit back and do nothing. I told him about this site so hopefully he will look at it and it will do for him what you all have done for me which is give me hope. you all have inspired me with your stories and I will not give up on my husband together with god we will get through this thank you all for the strength and hope.......love and peace toot


#2

Toot, I’m sorry to hear it, but it’s a fairly common story here. I would recommend a second opinion, as AVMs are fairly rare. You want someone with extensive experience. I typed in a search for you to read more about them:

http://www.avmsurvivors.org/main/search/search?q=2nd+opinion

Here are a few of the best, one of which will do it online. Your husband is fortunate to have you. All the best!

2nd Opinion Program

Barrow Institute (home of Dr. Spetzler)
https://www.thebarrow.org/Neurological_Services/2nd_Opinion_Program/index.htm
John Hopkins
http://www.hopkinsmedicine.org/second_opinion/neuro/index.html
Mass General
http://neurosurgery.mgh.harvard.edu/refer.htm


#3

Thank u so much for the info I have been researching it and we do plan on getting a second opinion thanks so much


#4

Hello Toot, Sorry to hear about your husband's recent struggles with seizures and aim diagnosis. When a person has a grand mal and loses consciousness, it is not only scary for those who witness it, but the patient wakes with no recollection of wth just happened and that momentary loss of control can be scary for us. I remember as a teen, throwing a right cross, and decking the ems guy only trying to help me! We laughed about it later, but your husband's reaction immediately following a seizure is not unusual. I was diagnosed as inoperable in 1987, and have lved a pretty normal life ever since. Please read my story and blogs. AVMs are NOT necessarily death sentences. knew of an orthand to opedic surgeon that lived well into his 70s or 80s without ever knowing about his silent avm. Please ask your husband to reach out if he has questions or experiences that others here may have also experienced. Finally, don't let the size of the avm scare you. Most importantly is the location, and angiography results. The angio can identify any aneurysms or sites of potential rupture. Remember, he has lived his entire life to date with his avm, they don't just pop up. Best of luck you and your husband. GK