I had stereotactic radiation treatment back in October 2016, I had an MRI with contrast last year. I’ve finally had the results of the new MRI a couple of days ago. Even though it’s been over five years it looks like I’ll be needing more treatment. The letter says that there is a good response to the radiosurgery, but there appears to be some enhancement at the side of the nidus which needs further evaluation by cerebral angiography. As there’s no further information and the letter is saying I need another outpatient appointment to discuss it, I can’t tell if this is a serious setback and if I’ll need more radiosurgery!
Does anyone know what the ‘nidus’ is please?
“Nidus” is Latin for “bird’s nest” but it’s used to describe the tangle of vessels that is your AVM, so it refers to the AVM, it at least that part of it that looks like a tangle of vessels.
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Thanks for explaining it … I did Google it but not a lot came up that made sense to me. I also have Giant Cell Arteritis and have some memory loss and confusion at times.
Sounds like the communication is not the best with the SRS folks. It is nice when they explain things much better. I would certainly go to the appointment well prepared with questions. The angio will certainly tell the whole story. Hopefully they follow up fairly quickly but to me to have the MRI in October and not get the result until now seems pretty slow. I would reach out and try to schedule the appointment, they sometimes need a little nudge. Take Care, John.
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I had the treatment in October 2016. Then I had an MRI with contrast around the beginning of December 2021. This was to check how the stereotactic radiation treatment had gone and how the aterialvenous malformation is going.
My son is (hopefully) gonna go with me to my new consultation. It does depend on the Covid restrictions at the Hallamshire though. I’ll find out when they send the appointment through. My son is also my carer as well so they may let him be there with me.
I’m already jotting down questions. I have a lot to say! It’s been ages since I had a F2F with my neurosurgeon! The last time it was over the phone via a video call.
I’m dreading having the angiography as I’m in constant chronic pain in my spine and have osteoporosis with a history of crush and wedge fractures, spondylitis and fibromyalgia, they all conspire to make the whole process of the angiography really painful!! By the time I was allowed to sit up, I was in so much pain I couldn’t walk properly. Or at least that was the outcome the last time I had one!
Oh well…. Onwards and Upwards! I can’t change it so I’ll have to get on with it!
Thanks for your reply… it’s much appreciated. 