Not sure if you guys have sub-boards or not, so I hope this is the right spot to post. Wanted to join you guys and hopefully get some comfort knowing there are others out there that have, and hopefully are done, with going through all that is associated with an AVM.
I am a husband of a beautiful woman that when I met her had seizures. We didn’t live life as well as we should have back then. We did a lot of bad things to ourselves. She used to have seizures about 5 times a week back when I met her. She told me that the doctors had said it was from the drug abuse most likely, and they really had no clue as to why she had the seizures other than that. She was 19 at the time when we met.
Life moved on, we calmed down, we had a child together and are married.
About three years ago, she was having horrible headaches, so we pulled what money we could together, and went to her neurologist. We picked a new one by the way, as the old one really just kinda wrote prescriptions and nothing else. The new one did had an MRI done, and they found a massive AVM in her brain.
I can’t honestly recall what side it is on. We had an angiogram done, and it turned out she had three aneurysms as well. The doctors “coiled” the largest one, and said the other two were to small to worry about for now. They explained the risk of bleeds in the future, but said it wouldn’t be to much of an issue hopefully. A couple of years have passed since then, and in the last three months my wife has had three bleeds, one MASSIVE seizure that left her partially paralyzed for a few days she did come out of that okay last week.
She went under the gamma knife two Weds. ago, then that Thursday had the massive seizure.
This last Saturday the 9th, she woke up at 3am with another headache, burning sensation, and nausea. We rushed to Emory University Hospital, where she is treated, and found out it was the third bleed. She is currently still in the hospital, and I have been forced to push onward with our life outside her condition. I can’t stay at the hospital every day like I did with the first two bleeds, as I have to work.
They did a CT scan this morning, and the aneurysm that was coiled as grown more. They are unsure of where the bleeds are coming from. When I left the hospital today, they were going to do another angiogram.
We are scared, as I am sure that most have been here before. So far she has managed to pull out of things pretty promptly, and we have moved on with our lives. Since the second bleed, she has developed extreme back and neck pain. The doctors say it may be due to the blood trying to soak into the brain tissue.
I will pray for you all, and please do the same for us. She isn’t good at forums, and computers anymore, but I know she would love to know that others like her are here for her in thought and prayer.
Thank you for your time, and I will check these forums everyday,
Matt
Hello Mihalek,
In 03’ went thru terrible brain damage caused by an eneurysm, didn’t catch it on time, stroke and 2 wks. comma. After release from rehap, life was not easy, some family members didn’t understand my condition, went thru hell for 1 yr, but if it wasn’t for a few of my grown childen, I won’t made it. One of my daughter, care soo much, I call her mommy, weird and funny huh?! It takes alot of patience and believe in God to survive this tuff situition. I’m greatful that I made it, view life alot different. Sounds to me U are a good caring hubby, that beutiful wife is lucky to have U. Hang in there, hope exist, I have hope for you both, my prayer is dedicated to U.
Have a happy day
Hello Matt, welcome to the group. You will definitely find the support you need here. We’ve all been where you are in some way. As for myself, I survived a major bleed and am now living life as a person with a brain injury. I’m sorry you are going through this, I know it’s very difficult for you as a spouse and the father of the children involved. You sound a lot like my husband who tried so hard to keep living and keeping the kids moving on with their lives, all the while, trying to come to terms with what is happening to your wife and praying that she will be okay. We are all here for you, to listen, or offer advice, whatever we can do to help. My thoughts are with you. Please let us know how your wife is doing.
She is home now. We are moving tomorrow, and that is stressful of course. Thank you for all your thoughts. Hopefully we go a few weeks without another bleed. Lately it’s been about every other week we have something come up.
Matt,
I’m very sorry for what your wife is going through.
That probably sounds very generic, but for lack of anything better, it has to work.
I had surgery when I was young too. I was 20. And there was no precadent for cerebral AVM 6 years ago for anyone that young. Most people were 45 and older. Oh, and my knife was the little, silver kind.
Remind your wife that this is just another test for her. How well she does on it is on her. This is a problem she has. It is not who she is. It can not define her if SHE won’t let it.
You said you you two have a child. I also am a mother. It’s not just up to her to keep her child healthy. But we all lead by example. Remember, that kid sees everythinng you BOTH do.
So you both WILL be strong You will be just fine because that is all you can be.
And I wiish I could honestly promise you that this is always sunshine and roses. But all I can do is tell you that it can’t rain all the time.
Be happy and strong always and you’ll be fine.
Don’t forget to smile!! Be easy,
Chrys
My wife wanted me to ask if anyone had experienced extreme back, and neck pain after a bleed? She has had it since her second bleed, it went away just right before the third bleed. They say it is from the blood irratating the fluid in her spine, but we wanted to hear from you guys as well.
Hello Matt .
Extreme back , neck , hip …irritation from the blood -YES .
Very uncomfortable -painful-nagging-gnawing-constant …
until the blood is absorbed - the toxins are cleared out the vasospasm(s) ease up and the stress is relieved .
For me it was two months or so before I finally realized that that very particular pain/discomfort had begun to ease away and one day it was gone .
We are very strong creatures Matt but we are " made " a certain way and our blood was not intended to be free to go willy-nilly into parts that are naturally off limits …Have her physicians recommended anything other than waiting for this to pass ?
Be good to you . Take care of you .
marianne elizondo said:
Hello Matt .
Extreme back , neck , hip .....irritation from the blood -YES .
Very uncomfortable -painful-nagging-gnawing-constant ....
until the blood is absorbed - the toxins are cleared out the vasospasm(s) ease up and the stress is relieved .
For me it was two months or so before I finally realized that that very particular pain/discomfort had begun to ease away and one day it was gone .
We are very strong creatures Matt but we are " made " a certain way and our blood was not intended to be free to go willy-nilly into parts that are naturally off limits ....Have her physicians recommended anything other than waiting for this to pass ?
Be good to you . Take care of you .
No, they really haven’t recommended anything other than waiting. That has concerned me. At first, they didn’t even think the pain was caused by the bleeds. We do trust the doctors at Emory University here in Georgia, however, I am starting to wonder just how competant they really are at all this. They have an entire team working on my wife. I just don’t want her in more pain than necessary of course. Trying to figure out how to get rid of her pain. Percocet seems to work for her headaches, but not for her back and neck pain. Suggestions are welcome.
I was diagnosed last June with an AVM of the brain, and it was the most devestating news of my life. I had a 2 year old little girl to think about and I was scared as to what would happen to my family if something happened (mind you after I did the research on the condition since my neurologist at the time didn’t explain much of anything to me). I have had one treatment done as I haven’t had the insurance to do more yet, but I am fortunate enough to say I have not had a bleed yet, and I am currently 8 months pregnant with my second daughter and still going strong. I don’t say this to try and rub anything in by ANY means… I will keep you both in my prayers and my heart goes out to you both as what you are going through is one of my biggest fears. Just stay strong and have faith! I too found this site and was hopeful for the support of others who have heard of it and/or suffered from this condition. I had never heard of it before I was diagnosed. Welcome to the group and although not experienced with this matter much myself I am ALWAYS willing to listen if you need to talk! I wish you both the very best! Good luck to the both of you and remember to stay strong!
my thoughts are with you and your wife. I cant believe some of these doctors that just assume that seizures and headaches are because of something else. Why dont they just do scans to make sure nothing is going on thats serious. They are not paying for it …its not their money. I thinks sometimes they are playing russian roolet with peoples lives.
Hello Matt and wife welcome to our support group. Found out a year ago that my son who was 17 at the time he was 17 had AVM. The doctors have been a pain to deal with so far however he will be seen on the 2nd of nov at Stanford that appt can’t get here soon enough. I have siezures and really bad headache where meds aren’t helping I have had a mri but it was without contrast. So i’ve ask for one with contrast so we will see
You are both in my thoughts and prayers, Matt. Tell her that when she is feeling stressed and worried, to close her eyes and visualize the sounds, scents and sights of something that makes her feel happy. Like a place she loves, a person or event. Do this while breathing deeply, and it puts the brain into the happy chemicals in a natural way. It simply gets you into a positive energy,and you can do it anywhere. I was taught this at the hospital, and it helped me to be relaxed during an incredibly stressful time. Especially helpful during MRI’s. Nothing like a jack hammering sound to really fray the nerves, but it was like magic for me.
prayers and thoughts, Sharyn
Adding my prayers right now.
Take care,
Debbie
sarah said:
Hello Matt and wife welcome to our support group. Found out a year ago that my son who was 17 at the time he was 17 had AVM. The doctors have been a pain to deal with so far however he will be seen on the 2nd of nov at Stanford that appt can't get here soon enough. I have siezures and really bad headache where meds aren't helping I have had a mri but it was without contrast. So i've ask for one with contrast so we will see
Yes, they have to do it with contrast so they can really get a good picture of what is going on inside the head. I will say a prayer for you guys. 
Hi Matt,
Welcome to the site - glad you found us. I hope your wife is feeling and doing better at this point. Hope the move wasn’t too hard on either of you either.
My AVM (and aneurysm) is in my spinal cord, and I had excruciating pain with my bleed. I think it’s the worst pain I’ve ever felt.
Before the bleed, and before being diagnosed, several times I’d had sudden, sharp, horrible pain that started in my back and radiated through my legs and torso. I didn’t have insurance any of the times that happened, so don’t know if maybe the AVM had bled or leaked before ‘the big one’, but looking back, I definitely suspect that’s exactly what happened.
When the AVM and aneurysm were embolized in 2004 the horrible back pain between my shoulder blades that I’d had since the rupture went away. I still have lots of other back and neck pain, but it probably is due to scoliosis and kyphosis, and some vertebrae in my neck that are fusing together.
Keep us posted on how you guys are doing.
Agree w/U
Dianne Palmer said:
my thoughts are with you and your wife. I cant believe some of these doctors that just assume that seizures and headaches are because of something else. Why dont they just do scans to make sure nothing is going on thats serious. They are not paying for it …its not their money. I thinks sometimes they are playing russian roolet with peoples lives.
Matt Mihalek said:
My wife wanted me to ask if anyone had experienced extreme back, and neck pain after a bleed? She has had it since her second bleed, it went away just right before the third bleed. They say it is from the blood irratating the fluid in her spine, but we wanted to hear from you guys as well.
Hi matt, thinking of you and your wife at this painful time.I had a bleed in april 2010 started with head pain and then the pain started in my neck ,back and backs of legs.its a terrible pain,the doctors told me it was the blood going up and down the spinal cord. it will ease as the blood disperses.it can take quite some time. thinking of you both, take care cheryl xx
Evelyn Z said:
Hello !
I am also a new member. Would a newcomer be warmly welcome here? Good day you guy !
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Of course. Welcome. I haven’t posted in awhile myself. Wife is back in the hospital with another bleed. Prayers would greatly be appreciated.
Hi Matt,
Just said a prayer for your wife. Hope she does better soon in order to enjoy the holidays.
Take care,
Debbie