Hello my name is Shawn. I feel funny saying that. My story is long. But im going to cut to the chase. I have a 5 grade brain avm its on the right side of my head going from the front all the way to the back its basically half my head. No treatment no surgery available without death its so embedded that no surgeon will get close. I have a 68% chance of hemorrhage and it goes up 2% every year of my life. Oh and last month it decided to make 2 aneurysms. Had a stroke with a blood pressure of 212/109. My headaches are so bad they dont stop. Im on Fioricet for the headaches and it works for about a hour. I just want to give up. Im 47 and on oct 20 my birthday the percentage goes to 70%. I just want it to burst im tired of sitting around wondering when its going to happen. Its going to why do i have to suffer longer. There is no relief dont want to start a relationship no need to be that cruel to anyone. I joined to tell my story and maybe get some advice. Thank you for your time.
First of all welcome. I’m sorry that you even have to be welcomed to a place like this in the first place. I think having an AVM of any sort is one of the cruelest things life can throw at you. I’ll tell you one thing, you are a lot braver and stronger than I am. What you are going through is my worst fear. I’m at high risks for strokes and aneurisms and that risk goes up the older I get and I can’t imagine being in your position at all. That might not be of any consolation but I really do applaud you for being strong, even if you feel like you aren’t. I know this disease is isolating, but we are all in this together. If you need to reach out to me I always try to answer as soon as I can. It’s hard to talk to people that don’t understand AVMs or who at the end of the day, they can offer sympathy but it’s not their problem. This is one of the hardest things we will ever face and it is our entire life now. I don’t personally believe in a god,or an afterlife, but I do believe that when we finally die, we no longer have to experience the hell that life is. That is the only thing that brings me comfort in times of suffering. My heart and thoughts go out to you always.
I am deeply touched by your message. I also admire your strenght despite what you are living.
Like you, I had a bleed, and like you I lived for a short period of time with the fear of another bleed. Of course my avm was treatable - so i cant really understand how hard it must be for you.
I just remember i was daily calculating the rebleed rate, and thought another bleed was coming each time my heartbeat rose.
A lot of messages I read on this forum helped me to deal with this fear : messages of members who have had multiples bleeds (with a decent quality of Life ; messages of members teaching me how the statistics given to us are really unperfects, based on too few cases to be really relevant in each case. There is absolutely no évidence that your avm will bleed again.
In the end, it is like a pascalian wager : be confident as much as possible - as you could be disappointed, in many years, to have lived with this fear.
It is easy to say what i say, and apologies if it does not help you. Just know at least that i am preying for you
@moonglow500, you are right about how sad it is to have to welcome someone here, but thank goodness there is a place like this. Your eloquent words carry the weight and the empathy of someone who really understands, because you’re living the experience.
Please don’t underestimate your power to affect someone else’s life and to help them get through these terribly difficult experiences. You, and people like you, are what makes Ben’s Friends a safe and supportive place.
More power, and all the best, to you.
Seenie from Admin, Ben’s Friends.
We’re glad you found us, Shawn. Welcome. The rare disease journey is difficult, but knowing you aren’t alone makes all the difference. That’s why we are here.
Seenie from ModSupport
I know it’s not much consolation but if it’s worth anything, some of us have had our pesky AVMs burst twice and had a stroke and live to tell the tale. And we have a list of a trick or two to make recovery from it all a bit more bareable. My surgeons didn’t want to touch my grade 5 AVM either. Oh but they did the night of my stroke. This was because it already burst so they only remaining option was to save my life rather than prevent a rupture. I got embolized, and had a craniotomy. And ended up a left sided hemiparetic from it all. It’s a debate if it was the stroke or my embolization that made me this way. Almost 5 years later though, I am more close to a “normal” that I never knew I could acquire. So chin up!! I know it’s not fair with the deck of cards we were handed. Trust me I’m still mad at life and what my life could’ve been like. I lost so much. This curse taught me who my real friends are and the power of prayer from even strangers. Most importantly how much pain I can endure and my perseverance. I also learned that many things I thought were important are now so stupid. You got this!! I was like you and just wanting it to take me off the grid already. Ah but I wasn’t that lucky!! It was going to put up a fight and just torture me and leave me alive. Or perhaps I have amazing doctors (that they are!)
It is very hard living this way, I know, and I’m very sorry. I’ve been living this way for 33 years. Somewhat different circumstances, mine is spinal, but I can relate, to the pain, fear and initial grief.
I’m sure I don’t understand all of your problems. I do know that high blood pressure can also contribute to headaches, not necessarily in your case, but were you able to get your blood pressure down?
Don’t give up. Hard as this may sound, try to keep living your life, caring for yourself and keeping yourself healthy in other ways, as if it wasn’t there, because this may make all the difference. I would continue to seek out the best medical advice, because you may find help. Don’t be afraid to seek other opinions, 3rd, 4th, just try. Do your due diligence in choosing a doctor, you want to seek the best.
And, while you’re helping yourself, and seeking help, understand at the same time that these are only statistics, and some people live with these things their entire lives without knowing it. Not, all of us are that fortunate, but it is something to remember.
At the end of the day, remember, you really are your best advocate, you are the one that has to seek help and make the necessary lifestyle changes to go forward. Try to calm yourself, so you can make good decisions.
There are many people on here that can relate to you, and many can give you very good advice, try to reach out when you feel like it. Peace and prayers.
I have not been here in a long time but am compelled to speak to you.
In 2012 I spent 43 days in hospital for a ruptured AVM on my spinal cord that bled into my brain. It took a week to figure out what was wrong because AVMs are so unusual.
Another week was spent trying to regulate my blood chemistry. Finally, I had micro surgery that saved my life. Then rehab. I had enough morphine to give me hallucinations still remembered today. My family sat with me day and night. The doctors thought I might never be lucid again.
I had last rites.
Finally, I recovered from surgery and went to rehab, learned to walk again and had my first shower which was the best thing ever!
I had to quit my teaching job that I had loved for 38 years! But I was alive!!
My neighbor and his wife came to see me often. He was the head pastor of a religious community in my neighborhood. He told me, there is nothing we are in control of. We think we are. But God is in charge.
That sure made sense to me.
So I never think about the aneurysm in my brain that was found when I was in hospital. My family does and remind me daily to keep calm at all times. Isn’t that a crazy thing? Who can possibly keep calm?
Do not fret about your condition. There is zero you can do or change about it. Live your life and be joyful that you wake up each day. Enjoy everything you can. The present is all we have.
I get in that MRI machine each year to monitor my brain, take my meds, rest, do whatever I can.
I am not the same as I was. I cannot do what I could. I know my brain is not the same either, but every day I am thrilled to just be alive. I was given another life in 2012. Every day is a present for me. An extra chance at life.
I am wishing all the best for you, Moonglow500. Live in joy! Be well.
Hi there Shaun, I want to give you a lot of hope. Similar story and symptoms to yours except mine are on left side and I fortunately have not bled (they said that there was a small one.) just to let you know that I was diagnosed and given similar statistics when I was 24 and I am now 66. I won’t say that it has been easy but I am still alive. Don’t listen to statistics
I’m enjoying all of the support being offered in this thread but this sums it up for me. This is how I look upon life.
I have an grade 4 avm and I think theirs only one solution to this is that forget about it and enjoy your life and live the life because you know moving on and not thinking about it is better than thinking about it and stopping your life over there
Enjoy the life Shawn you know if you can’t do anything about it then the best thing you can do is forget about it and do all the things that you wanted to do in your life
I’m so sorry you have endured this.
AVMs are so difficult to deal with. The unknown,
the pain, and the lack of knowledge and understanding all make them so very hard. You sound so strong. My daughter has a spinal AVM that we were told was inoperable. After 2 bleeds in 2 years we consulted with Stanford and had cyberknife treatment. She is recovering……still has pain flares and some nerve damage, but we are cautiously optimistic. Might that be an option for you? Just checking….because they are miraculous there at Stanford. Sending you all good vibes and hope.
1st I’d like to thank everyone for the support. A update is i have gotten my blood pressure somewhat under control. My headaches are still the same. My doctor and i was hoping when my bp got lowered the headaches would get somewhat better. No such luck. I have a doctor’s appointment with a new neurosurgeon to see what they think. Im hoping but when i think about what my doctor said about any treatments or surgeries. He told me that its so inbeded in my brain that if he was going to do work on it. We would be having a come to jesus moment. Well i thought i would stop in and say thank you and give a small win on the bp.
Good to hear you’ve been able to do something. Sorry it hasn’t been more beneficial. I guess lower bp reduces your risk of bad stuff happening but it’s a shame it hasn’t given you a reduction in headaches.
It’s good to hear from you. Thank you for sharing.
Keep hanging in there, our thoughts are with you friend.
Firstly welcome to the family.
Sorry to hear about your AVM but please know that the numbers are simply just that… numbers!… I got told I had a right frontal brain AVM before Christmas 2010 & that I had a 1% chance it would bleed every year… BUT it bled 4 weeks later in January 2011.
There are many like you who have inoperable AVM’s and have been fine… I was told by my neurosurgeon that some ppl never suffer a bleed and live a normal life not knowing they even have an AVM… I understand it’s exhausting and really feel for you but please try and stay positive and live life as best as you can cause you don’t know what can happen tomorrow… We are here for you so please feel free to vent and maybe even consider a second opinion if you haven’t already had one… God bless!
@shawn hello and welcome
My AVM story started out first with a rare stroke CVST due to 5 blood clots that I had been carrying around in my brain for at least 3 months and I was flying back and forth from Ca to Arizona where my husband was working.
I ended up in a coma, then when I woke up I was paralyzed had brain damaged and thought we had been in the bad 2011 Japanese earthquake ( cause my husband had the news on constantly and it’s true you can hear when you are in coma)
So about 6 months later a vein collapsed and my DAVF started to form.
But ever since the first stroke I have constant head and body pain. I have low bp usually 90/60 I actually take meds to make it higher.
I am treated at Stanford and literally tried everything the pain Dept has to offer. One of the final things they try is ketamine infusions and the idea is that it resets your pain.
My first 5 day inpatient I got 3 months of relief.
You can also get a prescription of compounded ketamine.
Stanford does low dose method which for me is fine cause I am a light weight.
There is a good book on Amazon about it
I did recover and get my brain back which I was faster than expected. As my dad says they are practicing medicine and what we have is rare.
Have you had your case reviewed by Dr Michael Lawton at Barrow?