Will This Ever End?
7 April 2005
I called my husband when I retuned home with news that I was sick and asked if he could come home from work to watch our daughter. I'd never asked him to return home to take care of our daughter mid-day, so I guess I should have realized I needed attention, but thought I'd just try to sleep it off. My husband came home, took our daughter to work for a couple of hours and checked in on me via phone. When he found I had not improved at all he suggested a trip to the ER. I agreed.
The ER saw me quickly, gave me medication for my strong headache and eventually ordered a CT. My husband and I knew something was up when we heard neurology being paged. We soon found out that I had something called an AVM, and a flow aneurism. I'd suffered a ventricular hemorrhage and was being admitted to the ICU for a few days.
After "healing" from the bleed, and learning a bit about AVMs I returned home to make a second opinion appointment with the local neurosurgeon at Stanford. We met with him within a couple of weeks and really liked him and his team. It seemed from every doctor I had talked with that a second hemorrhage was not a big risk in the near future. I was put on Dilantin for seizure prevention from the ER doctors, so we had some time to mull everything over and get our lives in order for my temporary absence if I was to have surgery.
Three weeks after the first hemorrhage I was driving with my baby down to Stanford to deliver my angiogram films from the post-ER exam. I made great time (no traffic) and was mentally planning the remainder of the day. In the parking lot at Stanford I lifted my baby to my back in her baby backpack and immediately felt a dizzy surge of pain. I knew I was having a second hemorrhage; it felt a hundred times worse than the first. I managed to take my baby out of her carrier, transfer her to a stroller, take the elevator to the top of the garage and started walking toward the hospital. The pain was quite bad, and I had started throwing up and sweating uncontrollably. The most concerning thing however, was that I was starting to lose control of my left side. I was dragging my leg while walking and luckily found a very nice man who immediately called an ambulance.
This second hemorrhage just about killed me, I have later found out. I truly believe that the spirit is a powerful thing and that because I had my baby in my arms in the basement of a parking lot - I just couldn't die. I had to get her to safety.
Embolization began for me the next day. I suffered a small brain stem stroke after the third and final embolization during the beginning of October 2004, which gave me nystagmus (shaky eyes) and double vision. Both improved to the point of driving again within about two months.
In November, I had my first craniotomy to remove the now shrunken AVM (80% of the flow had been reduced). The surgeon got a little more than half of the AVM during the surgery and I recovered quite quickly. Five weeks later I was walking with my baby a couple miles to the store! I was eager to have the second surgery completed so that I could start my life AVM (and treatment) free in 2005.
In the middle of December, I went in for the second craniotomy, but there were complications. I had a much larger stroke, which paralyzed my left side. I spent the remainder of December, all of January and most of February learning how to move my fingers, toes and eventually walk and lift my baby. I lost my left vision field completely, and the double vision returned with a fury. The experience of not knowing if you'll walk, move my left hand or foot or be independent again was terrifying. I was totally devastated, not to mention being separated for a month from my family. I was on high doses of Decadron the entire stroke rehab hospital stay and the steroids made me insane. I get shaky just remembering that very recent time period in my life.
It's now March 2005 and my life is much different. After months of hard work I can walk well and hold my child with both right and left arms. I take yoga classes to help my balance. My eyesight is still poor, but I have had some improvements since December.
I'm really curious if others who have had field loss and/or double vision have continued to improve months after surgery? Did anyone ever drive again? Did anyone have success with alternative therapies? I've started acupuncture for my lack of energy and compromised immune system, which seems to be marginally helping.
Has anyone had an unruptured aneurysm clipped? What side effects have occurred from the surgery? Has vision been impaired? Does anyone have any advise on complimentary treatments or things that worked for you?
Update: 10 July 2005
First of all I'd like to thank everyone in the "family" for all of the kind words, encouragement and suggestions to my questions that I received after posting my narrative. I have so many wonderful friends and family who have been incredibly thoughtful and supportive these last months; but it really is a whole different support system to be able to correspond with folks that have been through what you have. It's been priceless to me.
I've eagerly been waiting to be at the point of health where I can submit an update.
After my last CT Angio in March 2005, I found myself in a state of stunned disbelief for weeks. I've had two hemorrhages, two strokes, two craniotomies and three endovascular surgeries. My CTA showed no reduction of my aneurysm. I had read that it was possible that when a large AVM is removed, a related aneurysm could self-correct. After all I had been through, it just seemed like that would happen. Not true.
So... back to researching. After talking about surgical options with my doctor, visiting various internet sites and reading narratives from this site, I came to the conclusion that any deficits that I would incur from surgery (my doctor had clearly laid all of them out and scared the life out of me) were better than the potential outcome from a ruptured aneurysm. Once I made the decision to undergo yet another craniotomy, my life became a painful three-month-waiting-in-fear game. Everyday I would wake wondering if this would be my last, and every night would go to sleep wondering if I'd awaken and in what state. Every head pain I would assume was "it". Since I'd experienced an AVM rupture from lifting my daughter, I was fearful of doing that. I don't think I've ever lived a longer three months.
Surgery itself was on June 22nd, and went well. I remember waking in recovery asking if I'd had another stroke and for the next five days, while in the hospital kept moving my fingers and toes just to remind myself that I hadn't. My aneurysm was located in the vertebral artery, and the entire left side of my neck at the base of my skull was cut to access it. The pain was/is unbelievable. I also lost the ability to talk and swallow for about a week, and am still dealing with residual effects of both. My voice is very strained and weak as well as swallowing. I feel like they'll both get better with time.
After the clipping surgery, the doctors don't believe that the aneurysm was caused by the AVM, but a separate congenital defect. What are the odds of that? I oddly feel encouraged that maybe that means I won't be a candidate for recurrent aneurysms.
I had a minor setback a few days out of the hospital. I had a bout of hydrocephalus, which was aggravated by a fever. A spinal tap and some dreaded additional decadron took care of the hydrocephalus, but the fever got me admitted longer than I would have liked and is still a bit of a mystery. The hospital, rightfully so, was alarmed about staph infection. I just chalked it up to my daughter having just been sick, having given me a virus. Who knows, my fever left, I left the hospital.
I find myself in awe of people who can step back and evaluate this experience as bringing meaning and growth to their lives. I desperately want that epiphany, that understanding. I'm grateful for not being more disabled than I am, grateful for every second with my beautiful daughter and husband, but also feel cheated that I missed so much of her first two years of life. I also still need to grapple with my lost vision, not being able to drive and the myriad of other side effects (like pain). I won't give up, it's not in my nature and I'll continue to explore all avenues to improve my quality of life. I'm not hung up on the why me? But not able to say I've gained something either. I suppose that will come with time and my next update will focus on that. So, I get my next scan for aneurysms in a year. I don't think they'll find any. Hope not anyway.
Discussion, comments, or questions: Ann Sizemore
© Copyright 2005 Ann Sizemore