AVM embolization and new headaches after procedure

Hi everyone
It’s so niceto find you all especially since until about a month ago I did not know what an AVM was. My husband had a seizure on the 7th of October this year - he had been on an all night ‘bender’ (as we say in the UK) with friends, lots of drinking and no sleep. I put it down to that, so as you can imagine was utterly shocked when an MRI scan showed an AVM.
He wanted treatment as soon as possible, as we were told that the AVM was small (grape-size) and near the surface (near reading faculty of brain)
We quickly chose embolization at Queen Square Neurological Hospital in LOndon, with a fantastic doctor called Stephan Brew.
My husband had no symptoms at all from the AVM and no bleed.
Last Tuesday they performed the procedure - sadly a little glue travelled into a blood vessel which means he currently has difficulty reading (not writing though strangely).
The neurologists are quite positive that his ability to read will improve.
My main concern however are the terrible terrible migraines he is having. We stayed in hospital 4 days and he has been in bed at home since (5 days) complaining of agonising headaches, which vere from 2 out of 5 to 5/5 on a pain factor.
I am pregnant and we have a one year old, so I am totally emotionally drained. I am just so worried about these headaches. Does anyone know what the recovery time is for head pain? Of course I don’t expect him to be dancing round the kitchen, but I just don’t have any idea about what to expect. Be so so helpful if you could offer me some advice. He is on pain killers (codeine based). THanks so much and good luck to everyone. I hope I can return the favour soon

Hello and welcome.

I’m not sure you can get a definitive answer about how long headaches last. Your best bet might be to contact the drs. It could be from brain swelling, reaction to the meds, or something totally different.

I wish you well.

Ron, KS

I would definitly contact his doc. I know after my husbands AVM craniotomy, when we got home he was in so much pain, actually we had to return to the hospital due to the pain. They then found out the narcotic pain med they put him on was not working at all. After trying about 3 others they found one that worked. Perhaps your husband’s pain med is not for him and is not releiving his terrible pain? Hope things get better for you, prayers are with you all. Take care of you and the little one you are carrying.

Hello Alex .
Have you contacted his neurological team as yet ? Are they aware that your husband is in agonising pain ? Was he released from hospital with that type of pain ? Pain is an indicator that something is wrong and a problem exists that needs to be addressed . I hope your husband gets his answer soon .

I would also encourage you to take your husband back to the doctor. He’s going to have some pain, but this long after treatment he should be doing better. My daughter was on codeine and tylenol and actually said the tylenol worked better, so I defininately agree that you should ask the doc about trying different meds. You should get some help with your baby. Let family and friends take some of the responsibility for a while and get some rest. Both of your children need you rested and healthy.

THanks so so mcuh for the advice. We went for a small walk today and he had to go home as migraine started. I am trying to get him to the hospital but so far he is refusing (he is quite traumatised by the ordeal). His doctor has assured me that pain is normal as long as it isn’t getting worse. He also told me that he should rest for as long as he needs. I think I will have to DRAG him to hospital if things are the same after the weekend. He is basically sleeping 17/19 hours a day at the moment and that seems to help but describes everything as a strain (looking at things including TV)
Thanks so so much for your kind words. thanks to everyone else who has advised me too. It’s so nice to find people who know what you are talking about.

Hello Alex and welcome. The National Hospital in Queens Square is very good. I know it! Sorry to hear that you are having a difficult time. I am wary to give advice. My operation, and the discovery of my avm (and bleed in my case) was 20 years ago. A seizure brought me round from it. Between then and now, headaches were very common, sometimes lasting weeks (due to the seizure). Brains are very sensitive…

And it takes a long time to heal a brain. Rest, staying in bed and peace help.
Monitor the headaches and talk to your dr as it is still very early days. He won’t be dancing round the kitchen table for a while! It is good he is on painkillers. Brain swelling after an op is also common but it goes down.

Best wishes

hi Alex
Are you ure that his AVM is fully occluded by just Embolization?

Hello, I do not know about your husband, or anyone else in this group, but I still feel as though I have a "base" headache all of the time and when I get stressed, my period, or feel sick, it feels as though someone has taken a piece of wire and is flossing my veins with it inside me head, maybe reliving the embolization? I also feel as though my brain is swelling as it pushes against my skull. My AVM has been obliterated since 2003 I believe and I still get them. I have chose not to take any medication for these headaches because the medication does make me feel worse.
I am wondering if anyone else feels the same way as I do.