Reduce swelling of AVM/VEIN/ARTERY

Anyone any ideas how I reduce the swelling on what I can only describe as either an artery a vein or AVM.

I spoke to my useless doctor while I wait a referral but they said unbelievably use an ice pack.

Anti inflammatory meds only make my blood thinner and so more easily bleed from other areas.

Its obviously blood flow and stretching whatever it is, but how do I reduce it. Feel it down my neck area also.

Pain I can deal with to a point.

Any suggestions because I really don’t know what else to do.

Is it somewhere you can compress it? The extremity folk use compression quite a bit to manage pain.

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I will have to look into it.

This has been growing for a bit now. I feel pain now so obviously something is going on which I would think is the area is stretching along with it.

Had similar pain when the damn Onyx was left to burst out of my face last time due to them putting too much in.

If you can image a foreign body working it’s way through your face ( lip ) until it decided enough was out, this stuff was pumped in via my femoral into my face so obviously worked it’s way from my artery to then come out of my face, I have never seen anything like it

It was terrible , this time it won’t be the Onyx but instead just tissue stretch.

Will compression slow the blood flow because this will be what is causing the stretch, and I doubt this can be maintained.

I still work full-time working towards an important interview within my company on Friday, so I do still have some hope but it’s more to make sure my wife etc are in a better financial position long term.

I couldn’t hold it on all day at work and I really can’t take time off.

I assume it is arterial pressure in a vein. I had a patch of veins on the outside of my head that were getting inflated by my AVM pre op. It got quite sore, I assume due to the constant inflation of the veins and the pressure on the tissues surrounding. Straight pain killer (paracetamol) might take the pain off for when you need to be able to focus.

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Just to say it’s the left hand edge of my chin, slightly further up if that makes sense.

Leads down into my neck with pain.

Will be enlarging due to where it is positioned which I would think will be thinner as on the edge.

To me my doc saying to use an ice pack is like saying drink freezing water to reduce blood pressure :person_shrugging: I duno.

Can’t reduce blood pressure, mines is actually very good and keep myself very fit apart from a rotator cuff injury lol, least of my worries :slightly_smiling_face:

Oh well, suck it up I suppose.

You could go a bit Gregory Porter :grimacing:

I’ve no idea what to suggest tbh.

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I know am at a loss too

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Hi!

I can only tell you what I do and let you decide how and if this can apply to you.

Anti inflammatory: I have Naproxen prescribed. It doesn’t thin the blood but it hurts my stomach so I have Omeprazole (prescribed) with it.
You can have codeine (60mg maximum dose) or Tramadol with Naproxen (prescribed again) Unfortunately both make me very sick, plus anything from 20mg codeine and I’m too out of it to drive or work. So it’s Naproxen , omeprazole, 16mg codeine (you can get 8mg tablets over the counter) and a prayer :woman_shrugging:

Through trials and errors, I am also doing the following:

I use heat to help with congestion. Now mine is in my abdomen so hot baths /hot water bottles are my go to. Warm compress?

I use lavender as a massaging oil for pain in my legs, which again helps in some degree. Not sure how that would apply to your lip.

Now I find compression gives me pain: I need less congestion and better flow rather than restricting it. I know it seems counter intuitive but it works for me.

My conclusion is the pain is because there’s a massive amount of blood which is struggling to go where it wants to. I can’t stop my blood flow so I help it.

None of this is a miracle solution. It helps me cope at times and other times, absolutely nothing makes any difference.

Oh and sleep. I used to be able to go all day even with just a couple of hours. Now I need minimum 8 hours. Less sleep = more pain

Hope that helps

Nathalie

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Thanks alot for the info I will try some things, again thank you :pray:

No problem. Lavender, by the way, is supposed to be good for blood circulation . I initially thought it was the massaging that helped but other oils didn’t work. So it’s definitely something lavender based you would need. Or another herb with similar properties? :woman_shrugging:

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By the way, Dave, I looked into the Royal free hospital for myself and found that they are conducting research with UCL and using Thalidomide.

Now I first heard of Thalidomide being used to stop regrowth on facial AVM patients in London, from my vascular surgeon when I was diagnosed in 2019. Others on the forum, who are here in UK, have since mentioned it. Didn’t know it was the Royal free pioneering it.

My opinion? Definitely ask your GP to request a transfer. The Royal free will liaise with your hospital.

Best of luck.

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Wow, I am surprised they are trying that medication but if it works all the better. Will defo be passing on quite alot of info.

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Early rise for work, and what a great start.

Double nosebleed, then mouth via nasal, usually I only have this on one side but this new.

As a kid up until before my op years ago I never suffered from nosebleeds but every so often it happens now :pensive:.

Funny enough I can usually tell when this will happen.

Oh well, Allow to stop, wipe etc, off to work and forget I suppose :grin:.

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You should find out if it venous or arterial. Treatments will be different. Cold packs do work as palliative care for avms.
An avm - Is usually warm to the touch.

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This is odd. I am on full dose (200) of levothyroxine for an underactive thyroid condition which I have had for pretty much the same length of time all this started over 25 years ago.

Over the last few days I have forgotten to take my meds, which happens from time to time I suppose.

But I have noticed my problem whatever it may be with my chin area seems to have reduced in a size and no pain.

No I know it’s a long shot and I also know thyroid affects every cell within my body but has anyone else have an avm and underactive thyroid condition on levo, because this I find very interesting, especially considering as mentioned they both started around the same time many years ago.

Levothyroxine is a med that regulates my underactive thyroid condition, or so they say. I ain’t totally convinced of this tbh. The test they do initially and then every so often is flawed but that’s another story that many suffering this know all to well. I have been told this helps regulate many things in my body, but also metabolism, heart rate etc.

To cut a long story short a few years back they dropped my meds from 200 to 150, this caused issues for me and a very bad rash on my face that nothing would cure. I ended up having a biopsy and they finally concluded even after I did say this many times would be my lower dose and so increased it back to 200 prob cured within days. But the doc did say they very worried about the high dose causing heart issues, stokes and generally higher heart rate. Even though I had been on this dose for over 20 years.

Now I ain’t a medical expert but all this seems a little odd to me.

Could it be the meds, could it be the meds that may have also caused this from the start ?

I ain’t a strong believer in the congenital side of our condition if I am frank, but who knows but I do know my face is definitely not as bad when I do forget to take them which in itself is odd.

I know maybe I am looking for correlation, but this seems just a little coincidental if I am honest.

Not to say that everyone with an underactive thyroid would or will have an AVM or vice versa but I do find this odd, all kicked off pretty much at the same time. I have been on a very high dose from the offset.

I also had trauma to my face and that exact area at the same time, very odd.

Anyway I know I can’t change the present, it is what it is.

It sounds like something to discuss with the docs. I can’t say I remember others saying anything about thyroid treatment, so it seems more likely to exacerbate a situation than be the underlying cause of it but if you’ve got two conditions going on and one is fighting against the other, it is definitely worth a conversation with your doc about whether (given the somewhat dire state of your AVM) there is a better balance to strike. There’s almost certainly no perfect balance but important to have the conversation if one is exacerbating the other.

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Hi Dave,

I use ARNICA Gel (not cream) and it makes mine stop hurting…lasts a good long time on me- don’t excessively rub it in. I just put on a light layer and let it soak in. Find some online articles about the vents (in your head) and it will show you how to kind of control that.

JS

It seem your similar to me, I also have AVM, I think it can regulated by your diet, you might want to think about DNA it also carries a measurement in Centi morgons, you can use this as your repair rate, Dr R Camble on you tube says coligan helps repair tissue so you might consider getting some as a supplement, having this also compromises you emune system seen a program on physics I come to the onclusion even this affects my condition from the point of shrinking, over time, get a blood test and if it says high collestrol say good, cos that will slow blood flow down hens the bleed, my scans shown lumber compression but I noticed I also had scrolosis in that area, which makes those discs vunrable by low immune system protection perpendicular to the disc, study diets, use YouTube, ask the doc if he has any tablets that defiey gravity if you find any let me known.
The brain has a larg number of vessels, dose your condition worsen standing or lay down? Don’t forget wrest means regeneration if you do the right things all the best let me know how you get on