Hiya, I am a 29 year old female, who was diagnosed with a 4cm AVM in the bottom right of my brain.
I was working two jobs as a policy consultant, one in science tech and innovation, and another in gender and conflict. I Handed in my notice to go freelance in June, 4 days before ending up in ICU. i suddenly had a huge headache and I could taste copper in my mouth. I never really paid attention to health, so I stuck an ice pack on my head and continued working. The next day my mum forced me into A and E, and I was swiftly stuck in ICU for 5 days, whilst they diagnosed me with an AVM.
I then made the choice to go for surgery rather than Gamma ray, because I wanted the thing out, and I really didn’t want to have to spend the next 4 years worrying about it. In probability terms, the surgery was much higher risk short term, (1/5 chance of stroke, death, loss of hearing, movement etc), but the gamma ray had the accumulated risk over 3 or four years of rupturing again.
long story short, I was meant to have surgery 3 weeks later, but it got cancelled (NHS underfunding) 6 times until I entered A and E again in September because I had an anxiety attack. I then had the surgery on the 5ht of September.
Recovery has, of course been brutal. Fatigue is a whole thing to deal with, so are the headaches.
It’s been 3 months now. What im currently struggling with is nerve pain where my scar is. shooting searing pain, and it sucks. Paracetamol, ibuprofen doesn’t work. I took pregabalin but I hate the side effects. what non medicinal things has anyone found helps? Massage? (Im absolutely terrified of touching the area incase my skull implodes), acupuncture? B12 vitamins? any advice?
I also have huge anxiety. I keep waking up to my body feeling like it’s dropping like an elevator, or watching a film and suddenly my body drops. Its terrifying. I used to never care about health, (my parents are French and I had a very French attitude about it, of don’t worry it will be fine don’t bother the doctor). ive travelled extensively, I have a masters I used to never worry about pushing myself or taking risks. And now im scared of even just walking in the street, going up and down stairs, getting drunk, it all terrifies me. ive had PTSD therapy. Im also finding it really hard to care about peoples menial problems, which is not a trait I want to keep because im normally a very empathetic person.
Has anyone else dealt with this? is it normal? what helps? Even knowing someone else has had these feelings might help me feel less scared.