I plan to document everything properly this time. 2 weeks ago I got huge news.
For anyone not familiar with my story, I was diagnosed May 2017 with a high pressure medium-large left occipital lobe AVM. I had an embolisation which partially treated which successfully stabilised my AVM but also triggered a stroke during the OP. (More info here: My left occipital embolisation story)
I was told until now during every MDT meeting that further treatment would never be an option. (More information here: My MDT meeting news)
2 weeks ago I had another MDT meeting. The neuro team started the call informing me that they think I should have another surgery and have my AVM fully treated. They might be able to get it all with an embolisation but will likely need a craniotomy back to back.
For years I have asked about surgery and every time I’ve been rejected. I asked about whether I would ever need surgery and whether I should get it out the way and they said I’d monitored for foreseeable future.
Suddently I’ve been told I should have full treatment because long term my likelyhood of a stroke is increasing cumulatively. I was told they weren’t afraid of radiation exposure with an embolisation. They are not concerned about significant danger in treating me. I will still with 100% certainty have full RHS visual field loss but other than that the team is confident that it will be this alone. 1% chance of anything to go wrong.
I will have an embolisation by the same neuro-radiologist who expects to take about 3/4 of last time, so about 6 hours. He will try to glue it all but might need a craniotomy to make sure it’s all gone.
I’ve been told to be prepared that this surgery will put me a step back in my recovery. Worsened fatigue is to expected. Another intensive embolisation means I should expect to have hairloss all over again after I’ve finally got beautiful longer even and thick hair. My scalp has recovered and my hair grows at the same texture. So I’ll likely have to go through this process of hair growth again (more info here: Post embolisation hair loss - my hair recovery (pics and dates)).
Inspite of wanting this for so long, I have had lots of emotions. I’ve gotten so far in life. I feel beautiful again, the same as before I started feeling Ill. I’m fully independent with a full time job which I love and living in a flat alone and fully supporting myself. My energy levels are the best they’ve been since… I can’t even remember. Don’t get me wrong I’m still always tired but much less tired than before. I had a breakup for the 2nd time with my ex but I’m finally feeling better in myself 5 months later. I’m in a great place in life.
I have been told to expect to be back at work within 6 weeks but I still feel heartbroken over the idea of taking a step back in my progress. I have felt angry about being uninformed and not being given the opportunity to have this dealt with sooner. They made this decision based on my Jan 2018 embolisation and August 2018 angiogram scans. So these decisions aren’t a result of changes to my MRI scans which are consistent.
But in the end I know this is something I need to do and something I will get through. I want it out the way and to put it behind me. It’s hard knowing this has set my timeline back from realistically finding love so I’ll have to go through it single again. Someone can like me now but what about when I’m part bold again? It sucks but it is what it is. It’ll be behind me.
As for dates I am planning to book the OP for March/April 2022. I will have been at my job for a year in January and I’m anxious about telling them before hand. Not long to go!