AVMs down body Centre Line

I have an AVM known as a dural fistula which is till in place. It is stable although I have checkups every 6 months.
After the angiogram I suffered severe chest pain which was attributed to the dye used.
From time to time the chest pains recurr during the night. Recently it hs increased so I have seen a cardiologist.
Interestingly I was told that AVMs tend to have formed along the body centre line and that they are looking to see if there is one on my heart. I do have another deformitiy lower down in my body and never thought they are linked. Does anyone else have a simular condition or have been told this. I’m feeling kind of emotionally crushed by all this as now I get headaches and chest pain. The Angiogram of my brain may have disturbed a similar in my heart as the pipe travels through it on the way to the brain. I look forward to any insight into this.

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@Ricardo1 Hello and Welcome
Did they do an embolism on your DAVF? I have a DAVF on my left side of my head and I have had two angios and one embolism. After the 1st embolism they wanted to go back in but I needed to go back to work so a few years later I went back and some how it sealed itself thank goodness cause otherwise I was going to have to have a craintomy -
My doctor is Dr Michael Marks at Stanford who is the founder and head of neuro radiology. I was afraid he was going to retire so I went in for the 2nd angio in 2015.
I am allergic to Iodine they use during the procedure and they use radiation. Which I get very sick from both. I dont recall any chest pain.
I am so sorry this triggered other issues for you. But hopefully they will be able to address it
I was told that many people who are born with AVMs in the brain usually have one on each side.
Mine was caused from trauma from a massive stroke and pressure in my brain. I did feel like there is something wrong with my left leg and they looked for a blood clot or another avm which was thankfully negative.

Obviously dont work out to where your heart rate is raised too much.

This is very scary and hard to describe to people because we look fine.
I was totally freaking out - esp I had just almost died from my stroke and was still recovering and here was another rare thing and this site helped me so much.

I am wondering why they did not do the embolism for you at the time of the angio?
I had 30 feeders and it was complex and retrograde which means it was making the blood flow in my brain go back wards so I was passing out a great deal, Also the whooshing kept me up 24/7 and felt like a zoombie. I am so thankful its sealed. I still have sleep issues

Are you hearing the whooshing?

Hugs
Angela

Ricardo

Hi. I have a DAVF in my right occipital, which was embolised in April. Where is yours?

I can’t say I’ve ever been told that AVMs or AVFs form down the centre line but I am sure I’ve read of pulmonary, heart, liver AVMs being somewhat connected (especially if you have multiple AVMs) and perhaps HHT.

I do think a common factor is increased blood pressure, which might trigger otherwise unrelated items in different places. But that’s just my own theory, not driven by any medical reading.

Good luck!

Richard

Angela many many thanks for your response. sorry for the late reply but had reaction to iodine dye following CT scan. I cannot understand why I had reaction but was not good for a week. My AVM was not treated as the vein clotted and shut off the AVM so the blood found another route. But I have to be checked every 6 months. I ofren have dizzy spells and headaches although my doctor in Cambridge UK assures me that the AVM is stable. But it does not explain the headaches etc. I have a very slight issue with my left side which gives me problems when playing the piano and when I do certain moves in my martial arts class. I previoulsy was able to do certain moves but now I have a weakness and lose balance. I am sorry to hear about your stroke. I too have difficulites explaining to people but its good to keep in contact with others who have had similiar exeperience. Please let me know how you are gettting on.

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Hi Richard, many thanks for your response. My AVM is in the right dural part and is known as a dural fistula. I used to have high blood pressure bur reduced it over the last 15 years by attending a martial arts class. This is what prevented the bleed from causing a major damage to me as it only bleed slowly and clotted. Had my blood pressure been high than it woukd be a lot worse. How are you doing? As for me I still get headaches although all is now stabilised. I am waiting the results of the Heart assessments for AVM and expect this now in a feww weeks. Thanks

Ricardo,

Thank you for writing back. I can’t quite decide how I’m doing at the moment. I think I’m doing OK. I have to say I have days when I feel normal but some days when I feel less so. I think that’s a good thing because I’m getting to the point of thinking I’m having some normal days.

I hope your heart assessments go well. Do tell us how you get on. Are you OK about it? I guess heart-related stuff can be as scary as brain-related stuff but I hope you are cool about it.

Very best wishes,

Richard

@Ricardo1 So sorry you had a reaction to the iodine dye- I wish they could use something else. I cant believe your vein clotted and they could not do the embolism!

I think the doctors dont want us to worry and play the numbers game. But listen to your body and if you are feeling weird go in.

I recently started a new PT program and some how even though it was minor movements for my neck and shoulders it did something to the area of my DAVF so I wont be doing those again.
Also today I almost passed out so I think I better call and get a scan its been over a year and time anyway.

I dont think my headaches will ever go away. I started botox about a year after my stroke and it does take the edge off but wears off about 2 weeks before the FDA will allow people to get it again.

I am glad you can still do martial arts and play the piano. We have to keep our brains and body moving.

Hugs
Angela