I am so thankful for this site, it is so great to be able to find many informative topics and posts.
My husbands AVM was found December 29, 2017 while in the hospital for having a stroke. He is 50 now and will celebrate his 51st birthday Saturday before surgery. Well now the neurosurgeon said it was a seizure, so not sure about that. His AVM is on his left parietal lobe and may be attached to his speech and understanding. A functional MRI was completed in him and we are still waiting on results of that, the surgeon has been on vacation and will return Wednesday of this week.
He has been having increasingly worse headaches on his left side and at times they get so bad he feels like someone is squeezing his eyeball. He has also just developed the white flashing light in his left eye. His eyelid and below are swollen and his eye is mostly bloodshot. He has said his vision is blurry so that is really worrying me.
When we were in the hospital for the stroke his blood pressure for very high and they had to fight to get it down. He had a period that evening of major confusion, he couldn’t figure out how to put his false teeth in, that was pretty scary too, and I have never dealt with seizures before and not sure if this is something that can happen or not.
We have been seeing a neurologist twice a week now for 5 weeks for DOG blocks for the headaches, we are not sure if they are working, but are afraid to stop in case they are worse. He is also taking torimate(sp) for the migraines, he has a consistent headache that he says o a scale of 1 to 10 is a 4 to 5 most of the time and gets worse from there.
At the neurologists today his NO was 110/90 which I know is way to high.
Can’t wait for the surgeons nurse to return tomorrow as the neurologist said she doesn’t know much about AVMs.
Sorry about the rambling, but I really haven’t talked about this to a lot of people at this point.
Welcome to the site. It’s great that you found us and you’ve got a way of telling your husband’s story and understanding more about this condition.
An AVM in the brain can have all sorts of impacts and I’m not surprised by any of the things you’ve listed.
Have you managed to see a neurosurgeon yet? I think it is important to get the opinion of a neurosurgeon who is familiar with AVMs to look at your husband’s situation and scans, as well as the neurologist. Any intervention is usually undertaken by a neurosurgeon or under his or her direction, so I think it is important that that skill set is brought to bear upon the situation.
If at any stage you’ve got questions, we are here to support. There are plenty of people who’ve been through the same situation, so we know how you both feel and what might come next.
The neurosurgeon s nurse just called me back and said he may have edema or a bleed, the neurosurgeon returns tomorrow and she will see what he wants to do, she talked about looking at surgery schedule to see how she could move it around. Hopefully tomorrow they tell us what they decide.
I hope they let you know sooner than later but they will be balancing the needs of your husband with those of other patients, perhaps in a worse or more dangerous condition. So be prepared that it might take longer than you’d want. Push for your case but there are often people even worse off.
John my husband had another terrible headache yesterday evening so we went to the ER and had him checked for a bleed. His CT scan came back with no bleed, so that was great news, and the meds they gave him for his headache were amazing, must have had some steroid in it, swelling went down in his left eye and pressure let up, unfortunately it is only temporary.
We don’t need to move his surgery up and can go with the 30th.
We went to the ER of the hospital where the surgery will be done. Our ER doc had no idea what an AVM was but she reached out to neurology and they took over his care.
So all in all a good deal, the only bad was it took 6 hours, but trauma comes first which is good because one day John may need them in that respect.
One cool thing they did was an ultrasound of his eye!
And thank you Richard, I am so glad we didn’t have to bump anyone from their own surgery!
The best of luck to your husband I am sure it will be fine. I had a 2.8 cm AVM inside the right parietal. I had it removed with radiation and I am fine now.
Welcome to our world! As AVM-ers, we understand exactly how you feel. “We get it”!! You are scared, nervous, can’t eat, can’t even think rationally. Take a few deep breaths and go find doctor’s who eat, sleep, breath and treat AVM’s all the time! Make them explain what’s going on with your husband. And, make them explain what is going to happen next. And next again. Just be there for your husband. He’s scared and when he see’s you, he feels safe. I wish your husband the best of luck and I hope you will keep your sanity on this long journey. And, don’t forget to pray. Call on us when you need to. We’re right here.
Denise and all,
May your husband undergo surgery smoothly and with a rapid recovery. You have done a lot for your husband. The best to do now is to provide continued support and other assistance to facilitate a positive outcome.
Like to share my experience after a stroke and craniotomy 10 years ago, although a rather different location of AVM. With a smooth surgery and recovery, most patients will improve over time, granted exercise, positive attitude and faith are fundamental.
All the best!
Charles