I’ve had a very poor experience of support from my neurosurgery team in uk- inability to speak with anyone about side effects without lack of trying every avenue.
I have now had an emergency MRI only gained through an A and E visit and now been informed that indeed some swelling has been found. I am now quite upset because these feelings I’ve been having all along which I knew were not right are indeed swelling. I still can’t lie on the left of my head in bed, I have this constant tightness tension worse in mornings and couple times a week it moves across my head to be a painful migraine. The other main symptom is constant tiredness. I often feel slightly better just lying down which I do a lot. What makes me worse is heat. I’m now waiting for the neurosurgeon team to discuss my scan in an MDT meeting, they have yet to pick the phone up and ask what my symptoms are and support me! My main concern is if I have had swelling all this time is my brain ok?! I also think back to how extreme this same tension was in the weeks after my treatment and my speech was gone throughout that time. Fortunately I have not suffered a bleed nor a seizure so I realise I am lucky however my day to day quality of life is horrible always in some form of headache and extreme tiredness trying to avoid a migraine which will have me in severe pain and nausea. When I’m not struggling through work I’m in bed. Am I over reacting , does everyone get some swelling on the MRI?
On a side note my gp advised propranolol a beta blocker for headache prevention , I am very worried about the effects of beta blockers so chose not to start it. I am interested in acupuncture, does anyone have any suggestions around headache prevention
Really sorry to hear what you are currently facing, it has to be very frustrating. I had gamma knife and did have some swelling around the 6 month mark, but was managed with OTC meds only. I do know some people do require a course of steroids to manage swelling, but 15 months seems fairly late from my experience. The propranolol is a fairly common preventative med in respect to migraines, but does come with potential side effects. I am on a calcium channel blocker and experience no side effects, so there is that possibility with any medications.
Hopefully you can get some positive communication with your neuro team, soon.
Hey - very similar story.. I am 16 months post GK and had 2 recent hospitalisations, one following a severe and scary headache and one following what turned out to be a seizure. Both of these events were over a year after the zap, and I’d spent that year essentially symptom free.
I too have found follow up explanations and help non-existent - I have an appointment with my consultant to come in August, 8 months after the first report of swelling. Ultimately I have resigned myself to waiting for the 2 year follow up angio etc in December - which makes me as frustrated as anyone with an AVM will allow themselves to get. My GP gets it, but she can’t really make any difference.
I’ve had a course of mega-steroid Dexa to reduce any swelling, which hopefully worked - but who knows really!? And those pills are not my friends and come with awful side effects which my family would tell you all about. I won’t be taking them again unless something bad happens.
I don’t like taking medicine unless I totally have to, so I balance risk of AVM issues vs side effects of pills and hope for the best. It’s not a great game to play is it?
I wish I could be more helpful or profound than this, but all I can say is that I hear you - and absolutely understand your predicament.