As I am now in my 2nd week after my 1st of a few embolization's, I am facing so many deficits and just things that I didn't expect, and I have to say, its hard. So I thought I'd drop some pearls of wisdom for the next person with an occipital lobe AVM who will be undergoing an embolization or embolization's followed by craniotomy.
So, no one ever told me...
1. That when I woke up the headache would be so severe, I mean it felt like some one cut my head open with a knife and I didn't get any relief for hours. No cocktail of drugs were effective.
2. That you would feel uncontrollably nauseous as soon as you woke up and it has VERY LITTLE TO DO WITH anesthesia. When someone is tinkering with your brain it sends some funky signals that make you want to vomit. I puked a few times while in ICU minutes after coming out of the angiogram room. It was bad, I felt horrible and did a lot of praying. It was a cycle of pain, passing out and waking up to vomit.
3. The catheter would hurt. That thing was downright painful and I think they should train nurses a little better on how to insert them so they are comfortable when you wake. I had to beg for them to remove mine.
4. ICU should be called, I WAKE YOU. I was woken up what seemed like every few minutes for everything, from vitals, to more pain meds, vision tests and silly questions like, "do you know where you are?". That coupled with the cords that are all over the place makes it impossible to get sleep or relief from pain.
5. No one told me that there would be so many cords. They monitor everything from the brain to the heart, and if one goes loose the machines are beeping hysterically. Chances of getting meaningful sleep are so slim in the hospital.
6. That peeing laying down was so hard. Why didn't anyone tell me? It is almost impossible to convince the brain to allow you to go when you are laying flat on your back in a well lit room surrounded by nurse staff.
7. That you would loose most of your hair depending on how long you spend on the table. I have lost all of by beautiful curly hair. I mean, today, I had to cut what was left and cried my eyes out the entire way through. It just hurt so bad. I had been trying to hold on to what little I had left but reality was, it was all over the place. It was embarrassing. Now I have HUGE BALD SPOTS in the middle of my head and along the left side. Its awful and I haven't gotten use to any of that yet.
9. That I would get so tired so easily now. It is exhausting to do the most basic of things.
10. Noises would annoy me and I would scare easily.
11. That waking up after an embolization is a bit disorienting. I now have a quandranopsia as a result of the procedure, and it will eventually after all is finished be a complete hemopsia, but waking up it took a while for my brain to figure out what I was seeing. I kept my eyes closed often.
12. Why did anyone tell me about the many bruises? I am bruised along my groin and right side. My stomach is pretty bruised too. I am not sure why, but it is and it is still sore.
13. Last but most certainly not least, why didn't anyone tell me about the teeth pain? Now I know 5 plus hours on a table with radiation being pumped into your brain isn't the healthiest of things to engage in, but I had no idea the impact it would have on the rest of my body and my teeth hurt. A LOT. I hate it and am not sure if I'll find much relief soon....
So, this isn't meant to be funny, but it is a light hearted way of me dealing with a lot of the frustrating events that have taken place since my 1st embolization and consequently what I have to look forward to for the next one.
I will not create the illusion that things are easy, or that it would get easier because I have no idea and been kinda going day by day, but I will say a positive attitude and surrounding yourself around people that genuinely love you helps make all the hurdles a little easier to get over. Don't be afraid to ask for help and to cry, and most importantly, don't be afraid to stand up for yourself and tell people to back off when you need too. People have a tendency to pass along their stress. We are dealing with enough, don't internalize someone else's stress in the process. If you think they are being too abrasive and their tone is not supportive, make them aware so that you are in an environment of constant support and encouragement, because you are gonna need it.
Tight hugs and kisses to all my fighters and survivors!
Good luck to all my fighters and survivors. The road is an interesting one, filled with a lot of unexpected obstacles, but there's some special stuff going on in there too. :-)
~Mica
