I am new to the group and was diagnosed with a left frontal brain avm back in February. I had a seizure and following a five day stay in hospital, the AVM was finally diagnosed. I was lucky enough to be able to pay for a private consultation with neurosurgeons in Nottingham, and have since undergone gamma knife treatment at Sheffield at the end of September.
My question is whether anyone else has experienced quite bad side effects after the gamma knife? I’m now on anti nausea medication for the dizziness, headaches and vertigo symptoms. I also have poor balance, memory loss and some confusion. The pressure headaches are intense!! It feels like I’m underwater and my ears feel very strange.
I’m currently unable to work due to having a job where I am required to stand all shift, which I can’t do due to the vertigo. I feel like I need to get back to work ASAP to start to feel ‘normal’ again but just not fit enough right now.
Any comments on dealing with the side effects, how long they’ve lasted for others etc would be much appreciated! Im aware because they’re rare in themselves, neuro can’t always give you a list of what to expect!
Welcome! It’s great to hear from you! I’m sorry you’re finding it so challenging.
From what I understand, I’m surprised that anything has changed so quickly post zap: most people seem to find the six month mark to be the point at which things seem to start to do something, including often some increased intracranial pressure. You may need either Sheffield or Nottingham to have a look at that (you may also be able to get your GP to check that your pupils are dilating correctly, as a first check).
It’s a very worrisome thing but hopefully you’ll continue to go through and the gamma will do it’s thing. We do have a wide range of people who have had gamma knife and can share their experiences with you.
I had an embolisation procedure undertaken at Nottingham (I’m in Leicestershire, so I assume not very far from you) but a different treatment. I was very dizzy as my AVM was developing and I felt really weird post op for quite a long time. You’d expect an embolisation to be a fairly immediate thing but that sudden change took me by surprise and it took me a long time to feel back to “normal” – best part of 2 years, if I’m honest. I was back at work after 3 weeks and felt “ok” but it took much longer to feel normal.
Gamma knife is a long journey: I think 2-4 years.
However, some of the way you feel is probably to be expected, not all of it will be, so you will need to use whatever contact you’ve been given – either the neuros at QMC or the radiology team at Royal Hallamshire – to check in with them that what’s going on is “ok” rather than needing a check. In the absence of that, I found talking to my GP a way back into the system.
Thanks for your reply. I’m in Derby so not far at all! I think I’ll call my neurosurgeon consultant to make sure there’s nothing to worry about. From other people’s stories it does seem that every little thing you feel makes you concerned, even though there’s nothing to be concerned about!
This is a great group and a real help when dealing with something so rare.
I’m no expert – I’m a patient, just like you – but some people who’ve had gamma knife do seem to get swelling going on where the radiation has been focussed and that oedema can need treatment. It’s not something to just “work through”. So, from my point of view, it’s the “pressure headaches” you mention that worries me a bit, in case it is indicative of swelling. It seems very early for that but it is best to ask, I think.
It’s great to have you on board!
Let us know how you get on: I’m always interested in learning (and it’s helpful for future members, too).
Hi Hayley, and welcome. I had Gamma Knife back in November of 2016, this was after a bleed in May of 2016 where I learned I had an AVM and what one was. I had a little swelling around the 6 month mark. I also experienced “ice pick” headaches for a period of time that slowly disappeared. Often with the swelling the go to is steroids, however there is some well documented success with things such as hyperbaric chamber etc. Always the consult is a good course certainly never the wrong answer.
I can tell you that I was hypersensitive to any different feelings. The first time I experienced the ice pick was quite frightening, sudden pain but went away almost as fast. Whenever I felt something different or new I would just sit down for a second and assess, fortunately I did not experience anything serious. John
I also had gamma knife at Sheffield 4.5 years ago. Within days of the treatment I started experiencing similar symptoms to yourself and these went on for a good 10-12 weeks. I was very anxious at the time and called in to the team at Sheffield who were very reassuring. They said that the radiation hasn’t really had time to cause those symptoms, however they said that quite a few patients report similar things. The lead guy suggested that it may have even been stress induced because of everything you go through leading up to the treatment and including the frame etc etc. A kind of ‘post exam’ payback. Anyway, I felt pretty awful for a while including nausea, dizziness and my face felt very strange. This all worsened with exertion. I really don’t know what caused this but what I can say is that it all resolved within around 3 months and I’ve not had any problems since. If you search me you may find the thread I started on this exact topic back in Autumn 2019 when I was searching for the same answers you are.
Best regards
Jonny
