Hi everyone. My mom has a large in-operable brain AVM, she found out about it in her early 20’s and she is now 64. She has always been told it is in-operable due to its size and location. They did try embolisation but it wasn’t possible as they said the veins leading to it were too tortuous and they had to stop the procedure. She also has two aneurysms, and Tarlov cysts down her spine. Anyway, for the last year or so she gets terrible head pain at night like her head is going to explode. It usually happens after she has been asleep for about 30 - 40 minutes. There are no pain killers that help and Morphine made the pressure feeling worse. At a recent appointment with her Neurologist, in Stoke, he has said that he will admit her for ICP monitoring to check her CSF pressure levels. I was just wondering whether anyone else has experienced anything like this or problems with CSF pressure caused by or related a brain AVM? Thank you.
Welcome to AVM survivors: its good to have you.
What do I know about pressure in the head? A couple of things…
Before having an embolisation, the blood pressure into my veins from my artery was getting a bit much and generally making me feel dizzy. Lying down at night meant that the pressure went up as my head was at the same level as my heart. Lying somewhat upright with several pillows took the pressure off. However, it’s not necessarily an easy position to sleep in. What I would say is it might be worth trying, as it might indicate the same as it did for me, which is that the blood pressure is starting to have a bit of an effect. I also got a blood pressure monitor to keep an eye on my BP and keep it low. I assume mum is avoiding anything that would increase her blood pressure, e.g. no smoking, alcohol, chocolate, caffeine. I found cutting these sort of things out to take the pressure off, too.
CSF pressure is inclined to go up for a couple of reasons, as far as I know (I’ve no direct experience in this but only what I’ve read here) which is either due to a bit of brain swelling going on, or due to insufficient drainage of the CSF. I can’t think why she would have any swelling unless she has had treatment recently but drainage could be a cause. This is often to do with having a bleed and the blood blocking the CSF from draining at the rate that it is being produced, increasing the pressure. So it is possible mum may have had a small bleed or leak, or has had several small leaks over time that have led to that balance of production v absorption finally going out of balance.
So… definitely worth doing a bit of intracranial pressure monitoring. I’d expect any old blood to be visible on a scan, too.
An AVM leak is not the only possibility for a bit of ICP. I am sure there may be other causes and it is also possible to have increased ICP for no apparent reason: called idiopathic intracranial hypertension.
Hope this helps. If you want to ask anything, just ask: its what we are here for, though none of us are doctors, just aiming to help share experience or information we have found ourselves.
Very best wishes,
Reading a little on Tarlov cysts, it seems possible to me that the ICP could be related to those. So that could possibly be a cause as well or the thoughts I shared above. I know nothing about Tarlov cysts… just basing this idea on what I found online:
“Additional symptoms have been reported in the medical literature including chronic headaches, blurred vision, pressure behind the eyes, dizziness, and dragging of the foot when walking due to weakness of the muscles in the ankles and feet (foot drop)…”
Thank you for taking the time to reply to my post.
My mom has to sleep propped up on three pillows, I think at first it did help a bit, but now not so much. Yes she doesn’t consume any of those and has never smoked. To be honest there isn’t much she can eat at the minute as she has migraines, and she is also trying a wheat / gluten free diet. She is not in a very good way. She has to spend most of the time in a dark or shaded room as her light sensitivity is particularly bad. Out of the last 10 weeks she has probably had five “good” days. Where pain has been bearable and she has felt able to leave her house.
She has had a CT scan fairly recently and an Mri and neither have reported any signs of a bleed.
We sort of feel a bit like we are running out of options of what to try etc.
She is under a consultant in London about the Tarlov Cysts but no one is committing to saying that they could be linked and that they may be an incidental finding.
Thanks again for taking the time to reply.
Hey, it’s my pleasure to try and help. I’m sorry your mum is so poorly.
Very best wishes,
Welcome to Ben’s Friends.
Although my situation is not AVM related, intercranial pressure is certainly an issue I have. Initially I was told it was a condition known as ‘Aqueductal Stenosis’ or a narrowing of the aquaduct (a thin tube running from the brain down the spinal cord), but upon further investigation it was found I have a growth within my brain which prevents the fluid from naturally draining via the aqueduct and now have a shunt to drain the fluid and maintain adequate CSF within the cranium. I too have the awful, terrible sensation of my ‘head is going to explode’ or my eyes are going to pop out of my skull. The headaches are simply beyond measure and the photophobia (light sensitivity) is chronic. One of the issues here is that these symptoms fluctuate, some days I can cope by wearing sunglasses, where other days I need complete darkness. I tried to explain to the medicos the sensation of the pressure when laying down and was simply told “Well, don’t laydown for too long” Like, what???
A few years ago my shunt failed and they decided to insert a gauge within my skull to measure the ICP to assess if the shunt was still required, it was to be there for 24hrs. But within 8hrs I was having chronic symptoms and was rushed to theatre to have the shunt replaced.
From my experience it is not unusual for the medicos to be ‘non committal’ in regard to the growth or cyst, but any changes in regard to CSF flow MUST have an effect. An issue that can arise with medicos is that CSF issues are often neurological, where the cyst is considered spinal, two differing fields of medicine. In fact I have been given every other diagnosis known to man, being passed from one specialisation to another, before they reluctantly agreed that the ICP needed to be managed. Although your mom has had scans and no sign of a bleed was found, if the location of the AVM is interfering with the aquaduct or CSF flow this can cause some issues and in combination with the cyst this can be doubly so.
Merl from the Moderator Support Team
Hello Merl, thank you for taking the time to reply.
It is very frustrating not being able to get a clear answer to anything from any of the specialists she has seen. Always feeling like we need to second guess everything and trying to work out things for ourselves, and do our own research.
They have said they can admit her for ICP monitoring, which does come with some risks so makes us more reluctant. I would have thought that they may be able to see signs of high pressure or drainage issues from her Mri scans. But if she doesn’t have this done we feel like there are no other options on the table and she will just be left to “get on with it”.
Frustrating? Hmmm, I used a lot more colourful language than ‘frustrating’
I’m sorry to say this but the just “get on with it” attitude is rather common. For people who have no idea/experience of trying to manage the symptoms that attitude is simple, but the reality is FAR, FAR from anything like simple.
My only recommendation here is not to be expecting any great resolve with the icp tests, this way you’ll have less disappointment if the results are inconclusive. It may (or may not) indicate an issue and even then it may be a question of whether anything can be practically done to assist. They may need to make a referral to another specialist and this can take time to occur and be processed. I say this as many of us have been placed on what is common called the "wait and watch’ list, which is not fun and only lead to my stress levels increasing to the extreme, but often this is how the medicos work. So be prepared.
Merl from the Moderator Support Team