I was diagnosed this year with an AVM in my left occipital lobe and have been told that I will need a number of embolisations and gamme knife surgery. I have been having twitches in my hand but I am more frequently having moments similar to day dreaming. Does anybody else have this?
Hi Susan, My right hand use to twitch quite often but as the years have progress it hardly does it. Maybe three times a year if that… Hope all is well! <3
Hi Susan-my hand twitches once in a great while, and sometimes will have a numb feeling. I was diagnosed due to a car accident-I have not had a bleed & was adviced at this moment to just be monitored. I haven’t had too many moments of day dreaming, although I do think a lot more than I have in the past! I would be sure to get a lot of opinions before going through surgery & do your own research as well on your options. Good luck!
Hi Susan,
Anxiety can be the cause of daydreamy spells, and another possibility is that the daydream-like moments are absence seizures, which can go along with AVMs. You can read about absence seizures here: http://www.epilepsy.org.uk/info/seizures/generalised#absence
The best type of doctor to tell you whether these are seizures is an epileptologist–a neurologist specializing in epilepsy. (My husband has a different type of seizures, and we’ve gotten bad treatment advice from neurologists and a neurosurgeon, so in my opinion, it’s best to go to an epileptologist straight from the start, to get the most trustworthy information on what’s happening, and what you can do about it.)
If you think anxiety might be at the root, many people suggest meditation or another calming practice.
Good luck with your upcoming treatments. My husband improved greatly after his embos, and I hope you’ll have similar success!
JH
Hi Susan. I have that all the time. For me it is a form of seizure, as I have many types. I also have the twitching in my hand. Have you ever had an EEG to see if you have epilepsy?
Hi thanks for your reply and everyone else who has taken the time to reply.
Seizures is one thing that I am concerned about. My neurosurgeon is referring me on for investigations due to the twitchings that I am having and he reckons that I am having focal seizures. These stares only last a couple of seconds but they can happen quite a few times every day.
JH said:
Hi Susan,
Anxiety can be the cause of daydreamy spells, and another possibility is that the daydream-like moments are absence seizures, which can go along with AVMs. You can read about absence seizures here: http://www.epilepsy.org.uk/info/seizures/generalised#absence
The best type of doctor to tell you whether these are seizures is an epileptologist–a neurologist specializing in epilepsy. (My husband has a different type of seizures, and we’ve gotten bad treatment advice from neurologists and a neurosurgeon, so in my opinion, it’s best to go to an epileptologist straight from the start, to get the most trustworthy information on what’s happening, and what you can do about it.)
If you think anxiety might be at the root, many people suggest meditation or another calming practice.
Good luck with your upcoming treatments. My husband improved greatly after his embos, and I hope you’ll have similar success!
JH
Hi Maria
I saw a neurologist last year due to the twitchings as my GP thought I may have had a seizure (this was before I was diagnosed as having an AVM). He dismissed me and said that I had alot of other things wrong with me and didn’t want to put me through numerous tests and he thought that there was nothing seriously wrong. I am diabetic, suffer from tachycardia, fybromyalgia, fatty liver disease, and high blood pressure. I suffer from chronic back pain and dr finally referred me on to an orthopaedic surgeon. He wanted a full spinal mri scan and my AVM was incidentally found. I worry too about losing my driving licence, I do feel these stares are some form of seizure but afraid to admit it. Due to see my neurosurgeon on 04 August when he is going to go through my angiogram results and give me a treatment plan. I wish you well and take care. Susan
Maria said:
Hi Susan. I have that all the time. For me it is a form of seizure, as I have many types. I also have the twitching in my hand. Have you ever had an EEG to see if you have epilepsy?
Good luck to you. I am 50 years past the AVM bleed and brain surgery in 1959. I had seizures prior to having the surgery, big ones. I have had small seizures now and then although I still take seizure meds. I was also called “Droopy” by family members because I always looked sad. I was not sad, I just don’t use the correct facial expressions at times, and I have a hard time reading others faces to know if they are mad or sad. I had many daydreaming minutes, and still do. The last seizure I had was a month ago. I was just sitting there rubbing my face for a few minutes. I was at the Lighthouse for the Blind orientation and mobility class I was involved in for two months, and the wonderful teacher who was totally blind got some bad family news during the class. She was sitting next to me at the time, and no one else knew, but she felt something was going on with me and she was right. I still have optical seizures - meaning bright lights in the corner on one eye. Strange. I am not blind, but lost the vision in both eyes to the left at the time of the AVM bleeds. The AVM was in the back of my head in the right occipital/parietal lobe. Let me know how you are.
beans