I’m not sure if this photo is allowed so if by chance it’s not please let me know. My doctor has told me that I will be at risk for possibly developing a brain AVM in the future and having a stroke or aneurysm. I don’t know a whole lot about what different parts of the brain do, but if I were to have a intracerebral stroke or aneurysm In the future, what would that likely look like? What does that part of the brain control? I’m so scared that one day I could end up paralyzed, or stuck in a bed with locked in syndrome suffering. In fact I’m terrified and I think about it pretty much every day. My dad had a massive stroke that he ending up dying from, and before we took him off life support he was pretty much a vegetable in a bed with no quality of life. Paralyzed,unable to speak, unable to understand language. I am deeply disturbed because I don’t know what he was experiencing or if he was suffering or scared. Apparently the last thing he said was “I don’t feel very good” and then he fell over and had the stroke. He had bleeding on both sides of his brain and in the middle of his brain. Watching him go through that and knowing that may be me one day is absolutely horrifying and I’m constantly worrying about it.
I can assure you, that’s pretty normal. Any such diagnosis can have that effect and having some family history only increases that worry. Every ache, every pain and I was questioning myself ‘Is this it…?’
Now as for your question ‘if I were to have a intracerebral stroke or aneurysm In the future, what would that likely look like?’ That is a really difficult question to answer. Your paperwork states you have ‘Stenosis of the left pulmonary artery’. This artery runs from the brain all of the way back to the heart. Your AVM could be anywhere along the artery. One of the big parameters with AVM’s is location, it could be in a locale that the impact on surrounding structures may be minimal, but by the same accord it could be in the centre of the brain, where it could be catastrophic were it to rupture. For some people the location on the artery itself can have an impact, if the issue has weakened the wall of the artery or where the artery branches off, the risk maybe greater. These are all things that only a fully qualified neuro can assess, as there are many contributing factors which need to be taken into consideration when making such an assessment.
As I said earlier 'Every ache, every pain and I was questioning myself ‘Is this it…?’ and for a while I was ‘walking on eggshells’ just waiting for it all to explode. I was an absolute ball of stress. I had to learn to move on, to accept and then progress. I might make that sound simple, I know it’s not. I learnt which symptoms were ‘normal’ (as if any of it’s ‘normal’) and which were an ‘ACT NOW’ symptom. I think my best advice here is ‘be aware, not alarmed’.
Personally, I took some steps to try and protect myself. I have a ‘MedicAlert’ bracelet with my details/contact numbers etched on it. I have a card in my wallet which has emergency contacts, details of health, hospital file numbers etc. Is this going to save me? probably not, but if I drop in the middle of a shopping centre, I have my details readily available.
Hope it helps
Merl from the Modsupport Team
Hey - I am new to the forum and am also trying to gather more knowledge about AVMs. I noticed on your profile that you are quite young, under 20. In my Google research (and please, someone correct me if I am wrong), “An arteriovenous malformation can develop anywhere in your body but occurs most often in the brain or spine. Even so, brain AVMs are rare and affect less than 1 percent of the population. The cause of AVMs is not clear. Most people are born with them, but they can occasionally form later in life. and affect less than 1 percent of the population.” - Mayo Clinic
Sounds like the likelihood is rare but I would first check to see if this guy is an AVM specialist, if he’s not then go find yourself another doctor who is. How is your blood pressure, are you eating healthy and exercising? I think this should all be factors. Worry does nothing but harm your health. Take care of yourself!
Yes, I go to Vanderbilt which is a very prestigious hospital in my state and also the only hospital in my state that treats AVMs. I also had Dr Rosen of new york who is the be all end all of AVM doctors review my scans after being treated by my current doctor and he said that my doctor did a very sophisticated job, and that he wouldn’t have done much differently if it were him treating it. Not only am I at risk of developing an AVM because I already have one, but I also have two genetic mutations that make it very likely I will develop abnormal veins in my brain and have a stroke/aneurysm.
Sorry to hear about that diagnosis, however unless you have a brain AVM etc the warning is pretty much just a heads up in case & to be mindful… you can’t physically or mentally live your life in fear as it’s not healthy for you at all… let’s say you do go through what the doctor is predicting, just know many have gone through it & survived just fine.
I had a brain AVM & suffered a bleed a month after being diagnosed in 2011… the fact I knew I had an AVM before my bleed really helped me as I was somewhat prepared on what to do next & take quick action to seek medical help… time is very valuable in a medical emergency… I know it’s easier said than done but live your best life cause it may or may not happen… God bless!