My husband had an intraventricular hemorrhage due to avm rupture

In May my 54 year old husband woke me up because he had an awful headache. We went to the local hospital and he was air evac to a larger hospital that had a neurological team. It was there that we discovered that he had an avm. After emergency Surgery to stop the bleed not to remove the avm he spent 17 days in Neuro icu before being moved to rehab we were very hopeful because they believed that he was an excellent candidate for surgery. About 5 days into rehab he had a severe headache and had spinal fluid seep from the incision. Dr say that his CT doesn’t show any change but he now wants to sleep all the time ,will fall asleep when therapist are working with him, is more confused than he was and will not eat much so they have had to put in a feeding tube. Because he has not shown any improvement insurance will not extend his stay and I am not able to take him home so I am struggling finding options for him besides a nursing home that I don’t think will provide the card he needs. His therapist have told me they feel he could improve greatly and had believed I would be able to take him home but with all the set backs he just hasn’t shown enough progress and his time is coming to an end at rehab. Sorry for the length but thiS has been very stressful. If anyone has any advice please share.

1 Like

Welcome to our group, and I really hope collectively we are able to lend some support and advice based on a wide range of experiences. You have had a go of it for sure, hang in there, recovery from these is slow and the goal is to move forward, forward is forward no matter the speed! I’m from Canada so can’t help you in the advice associated to care etc…I’m so thankful for our system here when I see many stories of struggling with insurance.

I imagine some folks will add suggestion and their experiences. Stay strong, and as a survivor I can say I have admiration for the care givers beyond what I can express. Take Care, John.

Hello Alove.
I have survived four strokes. My avm was discovered when I was 8 years old. I have received the last rights several times. In this moment I am 45 years old. I am sending you love, positive energy and wisdom for you to make the best decision. Please contact me if you need or want to talk. God bless you and your husband. With all my love, Angie


Hi. Wow, you are going through it! My thoughts are with you completely. Like John, I’m a foreigner and don’t know how the insurance thing works in the US, so I can’t help there. The only thought I’ve got is whether the insurance would allow a second opinion from an eminent neuro centre – or whether you can afford to pay for a second opinion yourself – and see whether the folks at the other hospital then have more inspiration as to how to help your husband.

I assume that insurance has to be renewed each year. Do you have any choice as to where to obtain insurance from, such that, on renewal at least, you might get more traction with a different insurance company? What I think you’re describing is dreadful.

Sending you my very best wishes.

We do have lots of folk based in the US, so I am sure we will have others who can offer more practical advice or first-hand experience.

Very best wishes,



Hello @Alove Welcome to the group and I am glad you found the site- I am so sorry to hear about your husband. A few things I want to mention is a social worker at the hospital should be assigned to you to assist you. Also call his work and find out what long term care support they might offer as well. Be sure to apply for Medicare now unless he has LTC from work. Ask for a case worker from your insurance as well.

Every single county in the United States has an Aging and Adult Dept that is funded by federal dollars by the Older Americans Act - a person also qualifies if they are disabled for the programs which include help at home, meal programs etc. Some if it depends on your income - But programs for caregivers do not and these are very important the stress can kill people.

AVMs are rare - I am lucky and have two rare brain things a rare brain stroke due to 5 blood clots called CVST Cerebral Venous Sinus Thrombosis and then a few months later it caused an avm to form - I see the head of stroke at Stanford who then got the head and founder of Neuro Radiology involved in my case. I also see the head of headache pain clinic at Stanford. When I asked them if we moved where I could move where I could get great brain care they said of course Stanford…Then North Carolina Duke and University Wisconsin . I think you are closer to to Duke if you want to get a second opinion for your husband. I have never had a CT for my AVM only MRA with spin labeling and they only found my blood clots via an MRI called MRV - Dont be afraid to push the doctors or get a second opinion- You know your husband and you are his advocate. Neuros tend to be know it alls and sadly it helps to bring a man to the appointment - The number one dr in the USA for AVMS is Dr Michael Lawton who used to in the bay area but now is Arizona but they do remote consults at Barrow- I think its $15

After my massive stroke I wanted to sleep all the time as well and would fall asleep eating and had no appetite except for ice cream - it was like my brain was thirsty I was craving jam, ice cream, popsicles , grapes etc. `

Now I have made a great recovery I was in a coma - brain damaged, could not talk paralyzed and wasnt myself. I still have pain 24/7 and cant sleep for s%%% and had to relearn everything. I got centralized pain from the first stroke.
One thing that seemed to help me was my husband started to put coconut oil in my tea or coffee every day - he started with 1 tsp for a few weeks then increased it to 2 tsp then after a few more weeks 3 tsp- We need fat and protein for our brains to heal.

Once he starts to recover give him something to do - mine was getting the mail every day even on Sunday- Its different parts of the brain for speech and writing so he maybe able to write better then speak. Short term memory usually sucks so you may have to tell him what happened for awhile I know my husband did.

Now I have been both the patient and the caregiver- Two years after my stroke my younger sister got the flesh eating virus and almost died - again Stanford saved her life. It was a long road and personally for me I think its harder to be the caregiver. Esp when your loved one is in pain or cant speak for themselves.

We are here for you and your husband- Please dont hesitate to reach out-

1 Like