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New And Lots of Questions re DAVF


#1

Hi Richard, I’m new to this site and hope that I’m commenting in the correct place! I have just been told that I have a dural AV malformation, I’m am suffering form lots of symptoms and I am worried that I’m going to have a stroke. If you please let me know any Information I would be grateful, thanks x


What to expect?
#2

Hi

I’ve moved you to your own topic, so we can talk about DAVFs without completely diverting a subject on Facial AVMs!

Discovering one of these things is very much a worry but I hope by talking about it you’ll get more used to the idea and the options you might get.

What sort of questions do you have?

Ill write more later. Catch you soon,

Richard


#3

@Wendawes

You do have quite a list of symptoms, don’t you? I do understand how scary it is.

I took quite a long time to get diagnosed. Back in Oct '15 I know I could hear a faint pulsatile tinnitus. Then it got louder. Then it got louder. The beginning of my story is here, if you want to read. I have to say, it doesn’t necessarily come across in the dialogue here but I was pretty scared at how big my AVM was. I’d googled my symptoms and discovered AVMs and it was that which pushed me to the GP. What I really wanted to know was “how big or dangerous is it?” and I think the honest answer is that at the start it wasn’t in the slightest bit big.

The second part of my story is about approaching treatment and getting the treatment; early 2017. I felt worse over the period to the embolization and by the time I had an op, it was inflating quite an area of veins on the outside of my head, and starting to reach down towards my neck. Again, everything progressed very slowly.

What did I learn from the process?

  • You need to keep on your case and push things through. I’m currently going through some residual scans and because I feel pretty good in recent months, I’m just letting the process run without nagging every step of the way as I was doing through late 2016, early 2017. I think I’ve now waited 2 months for any feedback from my recent MRIs and I’m still waiting. So if you feel poorly and need it moving along, nag them. I can’t say it makes a lot of difference – it can still be slow – but the alternative is dire.
  • Get your GP on side. I have a practice where you only effectively get to randomly see one of the docs. Actually choosing who to see is not the norm. Work out which doc is interested in you and stick with them. I had a couple of GPs who really took an interest and as you’ll see in the second story above, it was one of them checking me out with a stethoscope that I think got me moved up the queue.
  • AVMs are rare, so when you see a doc, you’ll get two reactions: never heard of it / don’t believe you or complete interest in the rare thing you’ve got. You can end up feeling a bit of a specimen but if you can find a GP whose interest is pricked by you (GP work must be very humdrum often) then engage with that GP to poke the hospital.
  • Unless you’re already lying on the floor having a stroke, neurosurgery people are not excited about a fairly mild AVM. It may carry a stroke risk but unless or until you’re a bit closer to the line, to be honest, they have lots of other more risky, urgent people to look after. Stand up for your worries but don’t be surprised if they stay quite cool about you. They’re busy saving lives.
  • If at any point you have sudden, severe symptoms, go straight to A&E. Do not pass “Go”. Do not collect £100. They will take you seriously and it’s the right thing to do.
  • The encouragement I got from the people I first met here carried me through. I owe some people a lot.

Hope all of this helps. Ask whatever you need.

Lots of love,

Richard


#4

Hello @Wendawes Welcome to the group so glad you found the site! So glad you persisted to get help! I know it can be esp hard to get a scan in the- UK -
Each DAVF is unique, Mine was caused from a rare massive stroke from 5 blood clots and the pressure of the spinal and brain fluid not being released in my head and it blew out a major vein in my head and my body tried to fix it - I knew something was wrong and had stroke symptoms but a reg mri did not show anything and no one picked up I was now missing my left transverse sigmond vein…three months after that I was passing out and not sleeping due to whooshing sound and then my dr who is the head of Stroke at Stanford told me I could not possibly have another rare brain thing…I told him he was just getting to know me…he threw out AVM and I found this site and had a proper freak out…Then learned that if Dr Marks was in my next appt I had it and of course I did and it was complex and retro grade meaning it was making my blood go backwards in my brain…always been an over achiever…

So you want a neuro not an ENT working on you I had the founder and head of neuro radiology who did an angio and embolism. He used medical glue and onyx. You are awake for the part of the procedure which I did have a freak out cause my DAVF looks like a scary spider with 30 legs…I am very brave woman but very afraid of spiders and snakes…anyway they dont like your blood pressure to go up -
They were able to get most and then I just had to go back in one more time and I have one feeder they cant reach.
We are a supportive group and understand this is very scary and yes you can have a stroke/bleed -
Hopefully they will get you in soon for an angiogram
keep us updated
hugs
Angela


#5

Good morning Richard, I’ve read over your story a few times (don’t know about your symptoms but currently my brain doesn’t absorb things like it used to) it really is a long and difficult journey that you’ve been on and my thoughts are with you. I hope you don’t mind but I’d like to ask you a few questions if that’s ok (there are so many going over and over in my brain atm)
At what stage are you now?
Have you had a precise diagnosis and was this done by having an angiogram through your groin?
Are you in U.K btw?
Most importantly, how are you feeling at the moment both physically and mentally?
It would be nice to keep communicating throughout our journeys, hope you feel the same. Look after yourself and stay positive x


#6

Thanks Angela, I really appreciate your message …although even reading your story my brain doesn’t seem to understand everything (sorry) How long ago did you have your stroke and were you aware what caused that?
Are you now fully recovered? I really hope you have been looked after both medically and by friends and family, it’s a lonely place to be when we know something is wrong and don’t quite know what…I’ve been in that place for a few years now! I’m expecting a call today to book me in for an angiogram, feeling very scared as they say I will only have a local anaesthetic around my groin area.
Thanks again for messaging me, look after yourself and stay strong ( I figure if I say that enough times I will eventually feel it myself) x


#7

Hi,

Yes, I’m in the UK. My precise diagnosis (as precise as it got) was a DAVF flowing into my right transverse sinus with some diminution of the right TVS and reflux flow into those external veins.

As you may have read, I had a single PHIL glue embolization in April 2017 to close the thing.

I got better through 2017 but in October was feeling I was not making progress. Then beginning of Nov I had a week of noticeable dizziness:

I have had an angiogram in March this year, an MRI in April and a repeat MRI in June. I had positive feedback from the interventional radiologist re the angiogram (checked both sides of my head and nothing looks wrong) but I’ve still not had any output from the MRIs. I haven’t chased those yet and its driving my wife a bit mad. I just thought I’d see how long it takes for them to tell me if I don’t chase it. Answer = far too long.

I have to say that after the feedback from the angiogram, I’ve relaxed a bit maybe. I don’t always have symptoms and they are definitely not significant, so it is easy to just carry on. However, in the last week, and occasionally, I still feel I’ve got an extraneous pulse going on and sometimes my head feels odd on top or pressured, which I why I’m still getting checked out. Overall, I am definitely MUCH MUCH better than March or even April or May last year. It was definitely worth the op and I am sure without it, I could be in real danger by now.

The angiogram is undoubtedly the right way to see exactly what the anomaly is. An MRI I think is good for seeing that there is an issue of some kind in location x in your brain, but its like looking at an old TV with lots of interference on. The angiogram is a way of illuminating the flow of blood in the arteries and seeing exactly how it is flowing. It carries some risk but if your AVM is giving you issues and really needs intervention, then it is the right way to let the doctors decide on the right treatment. I am sure it is important for you to have that sort of scan.

Hope this helps,

Richard


#8

@Wendawes
My rare stroke was actually caused from trying to be healthy. I was eating more of a green diet and had stopped drinking alcohol. I was also taking vit k which I did not know is a blood clotter.
I was put on low dose testosterone and just the combination and my body seems to love vit k caused the 5 blood clots to form I thought my migraines were changing and I still went to work every day for 3 months some how.
I do have lots of support . My husband is great and does a great job taking care of me.
Most people say that can’t tell I have had a stroke but I definitely don’t feel the same and my head hurts 24/7 which seems pretty common for the type of stroke I have had which is less than 1/2 percent of strokes even the people who did not have a stroke but just had the blood clots complain about head pain.

Please let us know when they are going to schedule you for your angiogram.
There will be someone at your side during the procedure. You can see what the drs can see, it looks like an MRI.

If you do get too nervous like I did the first time and you bp goes up they will have to do a main line iv …which means an iv to your heart via your neck…not fun …it hurts a great deal…I later asked an ER dr who was doing one to my sister if they practice on each other he said no. I told him he should because the f%#$@#& hurt.

So during my first procedure when they did this to do me and they did warn me during pre- op but obviously I did not think I would need it. Nor did I think it would hurt so much. I ended Up telling them they better knock me out or I was going to hit them. But when you are knocked out they have to stimulate your brain to make sure they did not do damage and when I woke from the embolism part I felt like I had been electrocuted.
Now again I was still recovering from a massive stroke. I am sure your procedure will go smoothly.

Most people have no pain other than the groin pain. And it is so nice not to hear the whooshing and get some sleep!
I got so used to sleeping with tv on from that time I still need the tv on,

I always seem to have a bunch of hair fall out and get a bad case eczema post procedure.

Bring soft clothes like leggings for your trip home and dark color just in case you have any bleeding . You will have to lay flat post procedure.
I always bring lip balm, book, lotion , a scarf, headphones, my own box of crackers, hard candy, if you like to crochet or knit just in case you can’t sleep.

Hugs
Angela


#9

Angela,

We do need to lead you some way down the path of encouraging newbies rather than frighten @Wendawes off!!

Wen, Angela is giving you some of the less pleasant possibilities (and I’d say uncommon possibilities). So take heart, not everything hurts like f^¢&. I’ve laid out all of my experience above and albeit I was getting poorly before my op (a bit like you) I was surprised by how OK the angiogram and the embolization were. Perfectly manageable. Honest.

Very best wishes,

Richard


#10

Hello @Dick @Wendawes Not meaning to scare her just trying to prepare her as I wish the doctors or someone would of told me- as I did mention my case was not normal and I was still recovering from a rare stroke-
I am sure she will be fine and my second time was no complications as I was used to seeing my spider DAVF - :slight_smile:
Angela


#11

Thanks Richard for explaining your journey, I’m pleased that you seem to be through the worst …although it reads like a long and painful journey with lots of highs and lows.
I’ve found out today that I am being admitted on Tuesday of next week to have my angiogram, I’m staying overnight as I haven’t got anyone to care for me at home. This afternoon my headache has become really painful over the left side and the PT is really loud, it doesn’t help hearing my heartbeat which is so irregular …do you think it could all be connected? Were your symptoms always worse in the evening?
Tuesday can’t come round soon enough but then it’s not going to cure my pain is it …I guess it will just be the start of my journey. Anyway, look after yourself and have a good weekend x


#12

I’m sure it will help to start the journey and find out about it.

The only difficult but about the angiogram is that when it’s all over, they press down very hard on the wound made in your groin for about 5-10 minutes. That hurts. But that’s definitely the worst bit for me.

I don’t know if an irregular heartbeat is or can be connected. I would say it’s possible but I don’t know either way. I think some of these things, DAVF in particular, are caused by straining in one way or another. Some people lift weights (and there seem to be a lot of them in this community) some people just work too hard and things like that. Whether an irregular heartbeat is in any way connected to overdoing it, I don’t know. @wales had a heart problem which she got fixed and getting that done led onto her DAVF, so there’s definitely the link between blood pressure and DAVFs.

I think the trouble with PT is that it becomes more noticeable in the quiet, so you notice it more in the evenings. I’m sure in reality that the calm of evening is better for you.

There’s nothing to worry about between now and Tuesday. All you need to do is get organised, turn up in the right place at the right time and they’ll look after you and take you through the procedure.

It does sound like you’ve got something worthwhile going on, so it’ll be good to get a proper assessment of it.

Lots of love,

Richard


#13

The heart procedure didn’t fix my heart condition though, it made it significantly worse and caused a further, incurable heart condition with serious symptoms


#14

Thanks Angela for your advice, I’ve made a list of bits and bobs to take with me and now know I’m going in Tuesday morning, so not long to wait. At the moment I feel pretty numb, I asked if this angiogram is to ‘sort out’ the problem, but was told this is still an investigation and not treatment. I’m sure I will know a lot more next week so will keep you updated. Thanks again for taking the time to write on here, look after yourself and enjoy the weekend! x


#15

Thanks Richard for your reassurance, I’m just wanting to get Tuesday over and done with now! Just one quick question, when they do the angiogram how do you make yourself keep still, I’m thinking my body may begin to shake a bit with fear, do they sedate you at all?
I’m going to make sure I tell them about the irregular heartbeat and hopefully my blood pressure will be ok and I won’t need the procedure that Angela did!
Hope you’re feeling good today and enjoying this lovely weather we’re having, look after yourself x


#16

I would just talk to them about how you feel and they might sedate you a bit.

I am quite vasovagal, so if I have blood taken or have an op of any kind, I can faint. When I had my original angiogram, the doc decided to do the angiogram and my embolization in one go (partly because of this) so he put me under general anaesthetic – An embolization is done under general.

However, when it came to having my second angio, he said “I’m not putting you under general” and I got through it just fine. He just kept talking about stuff, I think we had a bit of music on in the background, we were all fine. Nothing hurt until he had to press on the wound and by that stage, it was all done.

When I had my third angiogram, I was confident I would be fine (and I can have a vasovagal syncope from just thinking about the wrong things). I was lying on the table, I had a different doc who was not so talkative and I could feel myself starting to go. They saw my blood pressure drop like mad and everything stopped. They put me on oxygen, they put a saline in. Everything stopped until I got back to normal. Then we carried on, with me chatting to one of the nurses, until we were all done. It was mote scary for them than it was for me.

You do have to lie completely still for each injection of contrast (half a minute each time?) and sometimes hold your breath. The contrast will make you have hot flushes on the side they are examining and sometimes make you feel like you want to wee (or have done so) but the overall experience is absolutely fine. If I can get through it, like I say with my ridiculous vasovagal reaction, anyone can. The bed you lie on is v comfortable and they wedge you in a bit so all you need to so is relax.

You’ll be fine but just talk to them about any worries.

Richard


#17

@Wendawes You do have to be still and trust me there will be a nurse there by your side the entire time talking to you and honestly they are prepared to knock you out if you do get scared I did not even see the needle or finish my sentence when they knocked me out. So they are ready. They are experts. I did not feel the what Dick talks about the Wee feeling but I did have that with some other tests. You are going to be fine. Just keep talking to your nurse they will pick a topic like cooking or travel to keep your mind off what is actually going on. - I think they can give you something to take the edge off - Before I had mine I had to meet with a nurse a few days before to talk about the procedure and we went over the procedure and my previous operations etc. So if you have that appt you might mention you are nervous and maybe they can give you something -
Best of luck and let us know how it goes
Hugs
Angela


#18

Gosh that’s not good, do you mind me asking what condition you had, also which one are you left with?
Have you had any treatment for your PT?


#19

Thanks Angela, I’m planning to ring them tomorrow and check if I can have some sedation …I’ll let you know how it all goes. Thanks again for your kind messages, take care x


#20

@Wendawes Oh I had a very extremely rare thing happen- I somehow grew 5 blood clots in my brain and I have a high pain tolerance so I just thought my migraines were changing and did not say anything to anyone - so they think I had them for at least 3 months and then I had a massive stroke ( the stroke is called a CVST and is .05% of strokes ) went into a coma and had brain damage. When I woke up 5 days later I could not talk or walk etc. Had to relearn everything. I am still left with brain pain from that first major stroke and left side weakness. But the brain damage they say is all gone and they say my brain now shows no signs of any of the strokes I had - But I still have pain 24/7 and cant take opiates.
So When I had the AVM angio and embolism my brain was still in recovery mode and I really think they should of done it in 2 phases because it was so long but I guess they know best.
The first stroke was in March of 2011 and I felt the avm in june of 2011 and they found it Nov 2011 and had first angio/embolism 2012 and then I waited until 2015 for second angio/embolism - which I have still have feeder that they cant reach but I hear nothing now which is great but I still have trouble sleeping for some reason which before the avm I never did . I could sleep anywhere and fall asleep within a minute ( would drive my husband crazy) but now I need the tv on.
I no longer have Whooshing and hopefully you wont either after your procedure.
It was blissful to not hear it! It was gone after my first procedure. It was strange at first to not hear it . My doctor used medical glue and onyx and I heard some popping which I guess is normal the glue can move around. After about 10 days or so I stopped hearing the that sound.