Hi there, I just wanted to introduce myself after recently signing up to the site. I haven’t really contributed much to forums in the past, but I thought I’d give this a go as there appears to be quite an active, supportive community from what I have read.
My name is Stephen and I live in Manchester, England. I’m 29 (although I turn 30 later this month), and I wanted to share my AVM story.
Last year in July 2017, I experienced a severe headache which I thought was migraine. I’d never experienced a migraine before but had heard that they were pretty bad, so I just assumed it was that. No serious medical history prior to this, no idea of any AVM or the like. For a few days afterwards my eyes were very sensitive to light, so I went to the eye clinic to get this checked out. They also thought this was ocular migraine and advised me to come back a week later. In this time I felt fine, a little tired, but I was still attending work etc.
A week later I returned to the eye clinic and they performed a visual field test which showed that I’d lost my peripheral vision in my upper left quadrants of both eyes. I hadn’t actual noticed any vision loss thankfully, and while my peripheral vision will not recover, I am lucky that my core vision remains intact. After finding that my peripheral vision was gone I was transferred to A&E for more tests, as this indicated some kind of lesion in my occipital lobe. MRI scan revealed quite a large bleed and I was transferred to Salford Hospital (the main centre for Neurosurgery in the North of England) for observation. Initial tests did not diagnose my AVM, as the bleed obscured the imagery. I still felt fine at this point, and was kept in hospital for 5 days. Various outpatient appointments followed and I had an angiogram in November 2017. I was then told that they had found what they thought was an AVF (they didn’t have all the information at this point because I was awake for the angiogram). My consultant suggested that I proceed with endovascular embolization of the AVF and this was scheduled to take place in April 2018.
On the day of the operation, I was admitted to surgery, and put under general anesthetic. I was awoken from the surgery to be told that they aborted the surgery because the felt it would be too risky to proceed. They actually found an AVM and they felt that injecting the glue had a higher likelihood to cause sight loss than they originally thought. My understanding is that I can still have the embolization procedure, but originally I consented to it when the risk of any adverse event would be much lower than they thought.
I am due to return for a follow up appointment this Friday to discuss my options and see if gamma knife surgery is an option.
On the whole I have been dealing with what happened pretty well, but since I was told that the procedure was aborted, and there is a much higher risk of losing my sight, I have started to have quite bad panic attacks. My GP has started me on propranolol to help (which it does), but I also worry about having a second bleed as I have been told that the chance of this is higher in the first year of the original rupture. I know I am lucky - despite the slight loss of vision which I don’t really notice, I haven’t really had to change my life after the AVM. I know things could have been much worse, but I still feel very anxious about what will come next. I think my surgeon was very surprised that she had to abort the procedure, as she hadn’t told me that this was a possible outcome. I went into theatre that day thinking that my AVM would be resolved but found up to find that there were in fact more difficult decisions to be made.
I am terrified at the thought of losing my sight. I wouldn’t be able to do my current job and two of my other passions are reading and playing video games which would of course be impacted if I lost my sight. I have a wonderful boyfriend who has been so supportive throughout this whole thing, but if I did lose my sight I don’t know how he would cope with that, and I don’t think it would be fair on him to have to deal with that. It feels like a bit of an impossible choice: either let nature run its course and live with the anxiety of knowing the AVM could rupture any day, or elect to have the surgery and possibly lose my sight as a result. It feels a bit overwhelming at present.
If anyone has any tips on dealing with the anxiety or thoughts on my options, please do share. I hope this is okay as my first post and I look forward to hopefully chatting with some of you.
it is really comforting to have someone who is in a similar situation to me. Speak more soon x