Neurological symptoms

Types of Avm's Brain DAVF
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Hi everyone,

I am a 34 yo female. I am 4 months post embolisation for a DAVF cognard 4/ Borden 3 in the superior sagittal sinus. I think I’ve had my fistula for many years as I have been experiencing some pretty severe and progressive symptoms for at least 8+ years. I did fall from the back of a moving car aged about 8/9, this caused persistent scalp tenderness and spinal pain over the years, though I was never scanned. I was hunting for answers for a while and was lucky enough not to have a haemorrhage. Now 4 months post surgery I am having new and worsening symptoms. I’m from the U.K. so the information is limited, I have been told that DAVFs cause no symptoms and that my new and worsening symptoms are nothing to do with my surgery or my DAVF. I also had a micro catheter glued in that caused a complication a week later. My right parotid gland swelled up and I was unable to open my jaw, i felt awful. I ended up back in the hospital for 5 days and was given steroids and antibiotics. No one knew why I had the reaction that I did or what was happening but the retained micro catheter apparently runs along side the gland.

I was just wondering what symptoms people had, if any, both before and after surgery? I have found a wealth of information online regarding my DAVF location and the symptoms I am experiencing but it would be helpful to hear others experience of these.

Symptoms prior to surgery:

  • Multiple visual disturbances, including now constant visual snow. Brief episodes of vision loss when lifting, straining, sneezing or coughing.
  • Tinnitus, both ringing and pulsatile. Popping ears/ muffled hearing, difficulty progressing speech sometimes.
  • Pins and needles in legs
  • Unsteadiness
  • Issues with memory and speech.
  • Dysautonomia, POTS, temperature regulation issues, gut mobility issues, swallowing issues, pancreatic insufficiency.
  • Severe neck and spinal pain
  • Neck and facial swelling
  • Headaches and migraines
  • Tremors
  • Seizure like episodes, stroke like episodes, episodes of facial palsy, a 9+ week head tremor.
  • Chronic fatigue and brain fog
  • Dizziness and vertigo
  • Daily nausea
  • Light and sound sensitivity.
  • Random sensations and feelings
  • Drenching night sweats
  • Throbbing of brain and spine

That feels like a lot and I feel like I could be missing something. Even though I had these symptoms I had gotten to a stage where I was pushing myself to the gym regularly and I love cooking so was pretty healthy otherwise. I was constantly told that I looked like a very healthy young lady, I was obviously masking well.

Following my pre surgery angiogram I had brightly coloured triangles making a C or ear like shape around my right peripheral vision. Then about 5 days after surgery I had severe light flashing in my right eye and the C shape returned, I felt awful, just really unwell, my jaw felt stiff. This was when my parotid gland started swelling, it was gradual over the next few days. Thankfully, I was readmitted and the swelling eventually went down.

I also found out that I also have a DVA on the right frontal lobe.

Over the next month I started to feel better. Then about 2 months ago I began to get new and worsening symptoms.

New and worsening symptoms since surgery:

  • Greying of my right peripheral vision.
  • Intense throbbing of my brain and spine worse when laying, bending, straining, sneezing or coughing. Deep heart beating.
  • Worsened visual auras
  • Worsened pins and needles in legs. Intermittent foot droop.
  • Unsteadiness
  • Pins, needles and weakness in arms and hands. I am dropping things in my right hand.
  • Intermittent Pins and needles in saddle region.
  • Waves of goose bumps down right side.
  • Nerve pain on both sides of my face/ temples and into my ears and mouth.
  • Numbness in teeth.
  • My pulsatile tinnitus has come back, worse.
  • My dysautonomia symptoms have worsened, I’m getting very breathless.

I have had a few CTs and an MRI (though the catheter blocks view) following my treatment and have been told that my fistula is completely occluded. I do worry about this as it was only an MRA that was able to find it in the first place, it was not noticeable on MRI or CT scans previously. All my prior MRI and CT of spine and brain were normal other than quite a few hemangiomas, which I’m told are benign.

Has anyone had any similar experience or symptoms?

I do also have Ehlers-Danlos Syndrome Hypermobile type I believe, though here the NHS only provides genetic testing for this in certain cases, so I have not had this. Thought this was worth mentioning incase anyone else has EDS.

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This sounds like a fortification scotoma. I had scintillating scotomas for the first time after my DAVF embolization and again after the eight week check up angiogram. Someone I spoke with on here suggested that it was probably provoked by the contrast material used during the two hospital visits. The scotomas became less frequent and I think stopped after a month or two.

It took me about 1½ years post op to feel back to normal. I think that suddenly rerouting your blood flow after such a long time taking shortcuts has a much more significant impact than we expect. So don’t lose heart. It is also nothing like a straight line in recovery. I had my embolization in April 2017. As late as Sep or Oct 2017 I had some random dizzinesses – dizziness had been one of my main symptoms pre-embolization – and I got worried that it was all falling apart but subsequent scans showed nothing to do. In the words of my consultant, I just needed to “get used to the new flows”. It took me 1½-2 years to decide I was “ok”.

I do think we become hypersensitive, hypervigilant to symptoms – it’s understandable – but sometimes it is just the irregular path of recovery that we are observing every twist and turn in.

What has your consultant said to you about these symptoms? Do they appear even slightly concerned?

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To be honest, I have been told that DAVFs only cause tinnitus and that no other symptoms are related. I was told re plumbing issues would only last about two weeks following surgery. It’s hard in the NHS as it’s a bit of a post code lottery. I was asked by my interventional radiologist to google my condition as there wasn’t much time to go through it. They have just been quite rude and dismissive following my surgery to be honest. I wasn’t given any after care. I have asked to be referred to someone else for a second opinion but this is going to take a while. I really hope that it is just re plumbing but I think the response hasn’t helped ease my worries.

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That does sound like poor aftercare, though I don’t think the NHS funding allows for much in the way of aftercare. I assume Google brought you here: we can help.

My main symptoms were the pulsatile tinnitus and a dizziness/weirdness. I also had a patch of veins on the outside of my head which inflated and deflated in time with my heart: enough to lift my fingers if I rested my fingers over them; they were very sore from the constant flexing.

My DAVF was connecting into my right transverse sinus. I didn’t think to ask for a classification of it but to me it seemed to be a 2a+b. It was definitely pulsing blood both ways along my transverse sinuses and I could hear the disturbance in both ears. It developed over time so that it was like sleeping next to the washing machine on pump-out at nighttime: not at all conducive. I also got to the stage where lying down in bed made me especially dizzy. Have you ever heard of Dean Martin’s quote along the lines of, “You’re not drunk if you can lie on the floor without holding on!” – that sort of dizziness! I assume the dizziness might have been to do with the flow past my ears but it might equally have been reverse flow going along my straight sinus. I had the weirdness on the top of my head and when I slid my glasses over my ears. Being driven or walking equally were weird experiences, to do with that “dizziness”. I assume that the veins on the outside of my head drain into the transverse sinus and the pressure of the erroneous flow was back-inflating those. They must have connected through certain holes in the back of my skull.

You’d expect someone in neurosurgery to understand these things, though when I saw my GP (several times and several different GPs) one of the trainees that I saw got very excited by my auscultatable bruit and asked if she might have a listen. “I might never meet another of these in my career.” She had a listen with a stethoscope over my right transverse sinus. “Absolutely textbook!” she declared!

So I think there’s more to it than just the pulsatile tinnitus: it will depend on where it is connected, how strong a flow it is and therefore what things it impacts upon as to any symptoms you might get: low pressures in places you should have a good pressure and higher pressures in places where it should be rather lower.

Welcome, by the way! It’s great you found us. I moved your post so that the other DAVF people will see it. There are perhaps a few dozen of us here in a community of several thousand AVMers. You’re a bit rare.

Welcome!

Richard

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Thank you :smiling_face: Google AI brought me here. Im glad to have found a community of people who understand, it has been a pretty lonely journey over the past 8+ years of my life. I think that’s the thing, the fact that this is so uncommon brings up a lot of misunderstanding, particularly in such a small place and where the NHS is so underfunded.

I am concerned about the lack of information that my neurosurgical team have and when I mention stuff to them that is seemingly common information about DAVFs, such as re plumbing issues I was told this only lasts for two weeks. I also recently found out that there is a police investigation into hundreds preventative deaths following neurosurgery that has been going on a a few years here at my hospital. That hasn’t helped calm my nerves.

I know exactly what you mean about the moving veins on the side of your head, I have this just above my left ear. They have been worse since surgery, hopefully a re plumbing thing. I haven’t been able to tolerate alcohol for a good few years now, major headaches, but I know the dizziness you are describing, what a good discription, I find the car the worst.

It’s lucky that you had a gp that clearly had a keen interest. I had to make a complaint to get referred to a specialist at RNOH London for Crainal cervical instability, as this is what I thought may have been causing it. He ruled out CCI but had ordered an MRA at my local and this ultimately found it. Though it did take them 3 months to tell me I had a life threatening AVM. I think the superior sagittal sinus can be hard to spot on standard MRIs due to it being on the top of the brain.

I find it so interesting how differently people present with this condition. The brain is such a complex thing. Though my visual auras are debilitating, I find it so interesting how your brain can affect visual input in so many different weird and wonderful ways.

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I got a full range of GP “assistance” – from one who hadn’t a clue and wasn’t seemingly interested, to the junior I mentioned, and to another of my GPs who clearly did read about my condition and clearly took an interest / went and learned a few things because of me being in front of her. Once I found her to be the one who was responsive/interested, I made a point of seeing her. It took me a whole year from first seeing a GP about the pulsatile tinnitus to having the embolization.

I think you’ll get better with a bunch more time. It honestly took me 1½-2 years to decide I was ok. I wasn’t perfect at 2 years but I was good enough and since then, there’s nothing that I’d say worries me now.

It’s great to have you on board!

Richard