AVM Survivors Network

Recovery hiccups

Hey Everyone

I was just wondering about everyone’s recovery experiences?

I’m 8 month post AVM craniotomy from my right temporal lobe and this week I have started experiencing headaches and pains that I didn’t before and they feel like they have spread to different areas of the head outside of the surgery area. It all started when I tensed my core going to the toilet and I felt a slight twang that I never felt before. Any form of over exertion has exhausted me.

I’m seeing my surgeon next week for a catchup but it’s still quite concerning just because I never had these feelings before.

Any words of wisdom are welcome!!

1 Like

Hey Lun,
Post craniotomy I have had to deal with and manage all sorts of pains and sensations.
I spoke to my surgeon but he became VERY defensive when I started querying why. “Well, it’s nothing I’ve done…”
The grey matter of the brain itself has no pain receptors, it processes information from other pain receptors within the body but has none itself. There are 12 cranial nerves that control everything from swallowing to optical focus, any damage to these can have an effect on the other cranial nerves. My surgeon was rather insistent that his surgery had minimal if any impact and I had one private neurologist who said that my on going pain was in fact Trigeminal neuralgia, the trigeminal nerve is the 5th cranial nerve. The neurologist’s recommended treatment for this was Botox, but, for me, this was not a successful treatment.

I have to say here recovery from neurosurgery can be a (very) bumpy road. Some symptoms I have recovered fairly well from, but by the same accord, some I have not. My best advice for you is to attend your appointment with an open mind, don’t be going in with any great expectations of obtaining a decisive answer. That way if you get an answer, fantastic, but then if you don’t it’s not so much of a letdown. Personally I think the best answer I’ve been given over the years was “Well, you’ve had brain surgery. What did you expect?” At the time I thought that dr was a bit blunt in his response, but as time has gone by I think it’s probably the best response I’ve received.

Merl from the Moderator Support Team

I know this post kinda old but i really would like to know what did the doctor told you … Because i do have a similar situation with my son he never had any headaches post surgery but after 6 months he started having it … but not too much maybe 1 in a week or 2.

Hi Merl

Sorry for the late reply - I’ve only just read this as I haven’t logged in for quite some time.

Appreciate the response and I definitely feel you! It’s been a little over 1 year 3 months since my last surgery and generally doing better but alot of things are still ‘hiccuping’. Current climate isn’t really helping either!

Hope you are staying safe during this time,

Hey Lun,
Staying safe is the name of the game in these challenging times. All we can really do is keep ourselves safe, if you do that and I do that and EVERYBODY else does that we will get through all of this.
But we’re certainly living in some challenging times.

Merl from the Moderator Support Team