AVM Survivors Network

Possibility of a shocking story....!

I am in shock right now, I have been in hospital with severe head aches and nausea. I have been having all the tests and finally working with a new neurologist. For those that don’t know, I have been struggling with a bad back. 18 months ago was given a caudal epidural for the pain. 12 months ago, had a tonic clonic seizure and was diagnose with a left partial lobe AVM with a small aneurysm. Ever since the seizure I have suffered with really bad headaches. This week as a result of these severe headaches, I had a lumbar puncture and looks like the CSF pressure is low, probably caused by a leak in the spinal region. The suggestion is that the leak may have been caused by the caudal epidural and I now have to find out if that is actually what caused the seizure, not the AVM. I really don’t know how to deal with all this…

Ohh Mickeboy,
Not good, not good at all. It is good however that you have a new neurologist on your case, as I have found that often when a neuro has made a specific diagnosis no further investigations are undertaken. Having a new set of eyes looking at your case is a plus even if you have to go through the whole investigation process again.

From experience low pressure headaches can be chronic. Have you had any scans (MRI or CT)? A scan should show how much fluid is being retained within the ventricular system in the brain. Too much fluid and the ventricles expand (Hydrocephalus), not enough and the ventricles almost disappear (a condition known as ‘slit ventricle syndrome’). Within the skull there has to be a really fine balance between brain matter, blood and CSF. If one of those is out of balance then symptoms can be anywhere from minimal to chronic.

There is also a condition known as Post Dural Puncture Headache (PDPH) and can cause a multitude of symptoms of which nausea, vomiting, pain in arms and legs, hearing loss, tinnitus, vertigo, dizziness and headaches are just a few. The dura is a layer that surrounds the entire brain and spinal cord and does contain pain receptors. Just like a pinched nerve in your shoulder can affect your whole arm, damage to the dura can affect the entire dural system. Symptoms of PDPH often show within a week of the procedure and some practitioners discredit PDPH as a cause if it’s anything after around a month. But a small leak can take longer to become symptomatic.

A BIG problem with neuro conditions is that often if you have a previous neuro diagnosis EVERYTHING is written off as being symptomatic of that previous diagnosis and no further investigations are undertaken. ie “You have a diagnosis of ‘x’ it must be a symptom of ‘x’”. I have been in this position and made out to be a hypochondriac when I knew something just wasn’t right. I have been described as a bit of ‘a dog with a bone, I won’t let it go’ and it turns out I was lucky I didn’t as there was a genuine problem that needed surgical intervention. So please make sure this is all followed up. Don’t be letting them minimise your concerns.

There is a procedure known as a ‘blood patch’ where (in VERY simple terms) a small amount of blood can be drawn from the patient and injected near the hole. The blood clots and the clot seals up the hole. Obviously there are risks with this procedure, all of which should be explained to you prior, but there can be a very small risk of creating another puncture.

As harsh as this may sound, it is fact. You have no control here, this is all up to the medicos from here. If you could change it, would you? Of course you would, but it’s the medicos who have the say, it’s the medicos who have the control and its the medicos who need to act. All you can really do yourself is stay on their case. They have no idea of your pain nor symptoms, they need to be informed just how chronic all of this is for you. DO NOT LET THEM MINIMISE YOUR CONCERNS.

Please do keep us informed on how things go with all of this as there maybe others trying to deal with exactly the same issues.

Merl from the Moderator Support Team


Hey @Mickeboy, I am guessing you felt something similar when you found out you had an AVM. In shock and unsure of how to deal with it. But once you get over the initial shock, you just take it one step at a time. You are already dealing with your AVM diagnosis and you will deal with this new possible diagnosis too.
I’m really glad you have a new neurologist and that they are taking you seriously and investigating your symptoms thoroughly.


Mickeboy, I agree with Merl that a new neuro will be a good thing and hopefully work towards some resolve. A friend of mine experienced something similar due to a “leak” . They were discussing a blood patch with him however he was fortunate and it resolved with rest over a period of a couple months. They did never determine exactly where the leak was and in addition to any prescriptions which I don’t know what he was taking, he was told to up the caffeine level. Seems odd but was told it increased the pressure, seems odd but made for an easy choice when visiting! The other thing he was told that as soon as he felt the beginnings of a head ache, lay on his back and elevate his feet. He found that worked amazingly well and caused a great deal of relief.

You’ve had a heck of a go and sure hope some reliefs is coming your way. Take Care, John

1 Like


How excruciating! I get migraines and I feel SO GOOD when one clears up! This must feel like torture.
I have seen how almost instantly a blood patch can work. I have seen this within days of a spinal, not weeks after. I suppose a blood patch could be successful for a leak, as long as the site is clearly identified.
I’m thinking the caffeine may work for now,
as it causes constriction of the arteries. Knowing how much these headaches are, I would probably try anything to rid myself of them!
Sending good thoughts,