AVM Survivors Network

My daughter is a week post op and in so much pain


Thank you Lisa


Thank you for update, I realize these are trying times and want you to know we are all pulling for you, her and your entire family, have not forgotten about you and your all in my thoughts and prayers, I hope you are finding away to have some me time, even if its a short time, maybe a short walk for some fresh air, sunshine, I know how difficult this is and I am so sorry you are forced to deal with it, if it helps I am 30+ years post craniotomy surgery that ran into some major complications, but I’m here, I survived, this was along time ago and things have become much more advanced, you have that in your favor, try to stay positive, take care,


Hoping the best for you all. Is she on something to help with the swelling, e.g. steroids?


Hiya suzzanae,
Just read your last post saying your daughter has double vision and headaches, have they done a ct or mri scan since all these symptoms began? I’m only suggesting and I don’t want to scare or alarm you, I had my avm in my right temporal lobe removed 10/05/17 due to a bleed, After I suffered from double vision and what I now realised was migraines, it turned out 4 months after surgery I had fluid on the brain. I haven’t had to have medical intervention at this time to correct it,we are doing the wait and watch approach with regular checkups with the nuro, it seems to be decreasing by itself with no major side effects. I’m only sharing my experience and maybe a solution I don’t wish to cause you any panic.
All the best to you and your daughter xx


I agree, actually. Raised intracranial pressure can put pressure on the sixth cranial nerve and cause double vision. Covering either eye gets rid of the double vision, which indicates an issue with the brain or effects outside of the eyeball itself. If the double vision is eye-specific, it may be an issue in the affected eyeball.

Again, not to alarm, but it is a potential signal of intracranial pressure.

All the best,



Hi Suzzanae,

I know every case is differant but if it is swelling, your daughter will most likely be put on steroids. I had alot of swelling after my op and atleast for me, I felt relief the following day after being given steroids. The steroids significantly reduced my pain, nausea and dizzyness. I only needed to be on them for 2 weeks, had an MRI a month later and showed my swelling was nearly completely gone - so steroids did the job pretty quickly! I’m hoping your daughter will have fast relief too.

Best of wishes,



Thanks all. She’s still going through stuff. Three week check up st the eye and ear hospital showed high pressure swelling behind her optical nerve right side. She thought she was getting better as headaches less and double vision gone

Was admitted to the neurologist ward again. Her team did mri. Didn’t show much to explain the swelling in her brain

Said they might have trapped or squished a vein. Did lumber puncture. No pressure at all. Sent her home. That was May 2nd that they admitted her.

Today at eye and ear eyes worse again. Swelling worse. They are operating on both eyes on Friday to try and relieve some presure but they cannot stop the swelling as that’s the neurologists area
Trouble is no one knows why she still has swelling

No idea where we go from here. She is two months post op all the neurologist said when they admitted her in May was very perplexing


Hey Suzzanae,
A very stressful situation for all involved, especially when the dr’s have no sure answers. I say this from experience as the dr’s were a bit unsure what is going on within my skull and this un-surety has been an on going issue.
I do hope that the planned surgery on Friday gives your daughter some relief and that they can pinpoint and solve the issue.
Merl from the Moderator Support Team


There is such a thing as Idiopathic Intracranial Hypertension (“IIH”) which basically means “unexplained / of its own, unusual cause increased intracranial pressure”. Hopefully, the docs can find a cause for it but it is always possible to have no known cause, hence IIH having its own name.

Really hope they get to something. I’m glad you went back.



Thank you all for your replies
Thing is she is so much better in herself. Headaches are more frequent now. Not piercing pain but she describes them as pressure in her head. Eyesight still not good. They showed us a graph of her eyes that were done in a test yesterday. It was a circle with I think 8 or 10 segments (like an orange) Left eye was all green, although swelling there also. Right eye only had one green segment.

All the others were red. I asked what happens when that goes red and he said they had to avoid that at all costs and their job was to save the eyes, at this point.

He said she needs fenestration operation in both eyes and may need more of these surgeries until the nuro’s figure out a long term solution. Maybe a shunt?

He said this is just to slice and make some flaps so they can drain some of the hemorrhaging in her eyes

I guess then they talk to the nuros? As they didn’t consult them on this

But all they said a few weeks ago when they admitted her is maybe the eyes are a delayed reaction and they don’t know her brain is better???
Sounds lame to me


Shunt is the only fix I know for IIH but I only know one patient with IIH.


This is all double Dutch to me but this was her scan from 2nd May when they re admitted her for swelling on her brain behind the optical nerve


Thank you for that. At the eye and ear hospital now and they are doing the surgery on her eyes

The. It’s a case of a more permanent solution



I’ve had a go at reading and understanding the report. I’m not sure that I can tell you anything useful but I’ll tell you what I can. The bilateral papilloedema means pressure in both eyes. The suspected venous thrombosis means that the reason for the scan was he thinks there is a thrombus, a clot or blockage in one of her venous sinuses. These are the larger veins that drain blood away from the brain (which might be a cause for increased pressure). I’m not clear that although that was the theory that it actually correlates with what he found. What I can see in the findings / conclusion is that there is an area of tissue death, towards the back of her corpus callosum. This is the dark patch in the top left picture in her mid brain. I assume the dark patch at the top is her surgery site. His comments on that mid brain dark patch seem to me to be to do with lack of supply of blood to that area (i.e. the pericallosal artery referred to) rather than the theory at the start being about drainage away, though if there is a blockage in the drainage, I personally think it would have the same effect – no blood flow.

In the conclusion section, he notes a number of things about the surgery site. The things I read as positive are “no hydrocephalus” i.e. no excess fluid / I take that as no sign of increased pressure and “no herniation” means no excess pressure showing on the brain, e.g. no sign of it swelling out. Does Tayla have a gap in her cranium? It looks like she has a gap on top and the herniation might show there, if it were present. He seems comfortable about what he can see at the operation site. The second paragraph of the conclusion is about that dark area mid brain and the arterial supply of blood appearing absent.

The bottom two images are showing the corpus callosum and again the dark space behind (below in the picture).

What does it mean? No idea. If it were me or my son, the piece I would ask about is the “mild vasogenic oedema” which I don’t understand. It uses the term “oedema” (= swelling, so seems relevant) but is “mild”. It looks like he is dismissing it but should it be put aside?

The other thing I would ask about is if Tayla has a gap in her cranium still, whether the atmospheric pressure outside her head is creating the pressure that is being felt most acutely in her eyes. Would a repair to that take the pressure off? I know nothing except a film I watched in Feb or March about a man with a much larger gap in his cranium who only recovered / started to recover when he had a cranioplasty (= a plate fitted). Without the cranioplasty, his head appeared concave on the side where he had no skull, as the atmospheric pressure was squeezing his brain over considerably.

Now, I’m no doctor, so don’t take any of this as reliable because it is just me reading words that I don’t know and googling them but I hope it helps a bit for areas to ask about.

Lots of love and very best wishes to both of you!



Hey Suzzannae,
I tried to view the report but unfortunately I couldn’t get a picture clear enough on my system. I think the ‘double dutch’ of these radiology reports is very common, I know my scan reports are often as clear as mud. I think DickD makes some very valid points but like him, I’m no dr, and I’d say you need a professional to translate it into “common English”. But in saying that some of the points I would agree with.

“No hydrocephalus” Hydrocephalus is also known as 'Water on the brain", even though it’s not actually water but cerebral spinal fluid (CSF) which is a nutrient filled solution. CSF surrounds the brain and does a few things, it helps cushion the brain so any rapid movement doesn’t cause the brain to collide with the skull, it assists in the flushing of the brain and helps keep the brain nourished. Within the skull there needs to be a balance of brain matter, blood and CSF. If one of these is out of balance it can cause issues, major issues.
Now, I say all of this because I have issues with hydrocephalus and now have a shunt (x2) to drain the CSF from my skull. I know the severe pain and chronic symptoms that occurs when that balance is messed up. In my opinion (and it is ONLY my opinion) the dr’s will be trying to work out which part of the balance of blood/brain matter/csf is not balanced and why, then workout how to bring it back to that balance. Although they say “mild”, I know for myself, even a mild unbalance can have some chronic awful symptoms, ones I wouldn’t wish on my worst enemy.
I also agree with DickD in regard to atmospheric pressure having an effect. I find the weather plays a huge role for me and that is even after the surgical scars (holes) from a craniotomy have healed. Some dr’s have written these symptoms off as minimal effect, but as the patient they are not minimal for me.
I would also like to say that blood flow and the changes in blood flow can have an enormous impact. Our body’s have a ‘normal’ circulation of blood (and other fluids) around it that develop over our lifetime. When these circulation routes are changed or altered our bodies need to adjust, some of those adjustments may be minimal, but some can be life changing and it can take quite some time for those new routes to become our new normal.

I also want to reiterate DickD’s words “…I’m no doctor…” and say that my information here comes from my own personal experience and the follow up investigations I have done of my own situation. Anybody who tells you this is an easy/simple situation to deal with and manage has never been here and please know that we are here for you and thinking of you both.

Merl from the Moderator Support Team