Thank you all for welcoming me to this site and for taking the time to read this.
My story starts in the north west of England in 1973, long before I was born. My mom found her mom unconscious on the floor next to her bed and she passed away of a ruptured brain aneurysm.
Fast forward to the south of England in 1993. My moms older sister experiences a severe headache but is only treated for a migraine. Her dad, having already lost his wife, urged his son in law to take advantage of his private health insurance and get a second opinion right away. The next day, they found a ruptured aneurysm and immediately clipped it. She survived but was put on anti seizure meds but continued to have seizures. Five years later, after moving to South Africa, she suffered a second rupture which she ended up passing away from. After her second rupture, both my mother and I (out here in Los Angeles) got checked out and both our scans showed any thing out of the ordinary.
Unlike my mom's mom and her sister, who never suffered from headaches apart from the actual rupture, my mom has suffered from migraines and headaches her whole life. Around October - November 2011, she began experiencing localized headaches right behind her right eye which she explained as the worst headaches she's ever had. She was also experiencing what she described as "funny turns". She would constantly go to her PCP and her PCP would say the turns are anxiety and caused by menopause and the headaches were a bi-product of that. For months, she was in agony with these headaches, something she had learned how to control. Finally, in August in 2012, while in tears she demanded an MRI/CAT Scan due to her family history (something she did write on the forms you fill when you start at a new doctor, something i've been doing since I can remember.) The doctors response was" I don't think they died from migraines". She never bothered to look at her family history. Anyways, it wasn't until my mom replied "no but they died of ruptured brain aneurysm" that she understood the seriousness of what my mom was complaining about all those months and immediately scheduled an exam. The people who did the scan knew right away what they were looking at and she was diagnosed with an unruptured aneurysm. We visited with the neurosurgeons at USC Keck Medical, where we were told she had a stage 3 of 4 stages sized aneurysm. After a couple days we were told it was too big to clip and that they could coil it there or refer us to a Dr. Duckwiler at UCLA for a procedure called a pipeline that was showing promising returns in avoiding future ruptures of the same aneurysm. After meeting with Dr. Duckwiler, surgery was scheduled for October 9th, 2012.
It was September 24th, the day before her 53rd birthday, I worked nights delivering organic food to peoples doorsteps and I got home around 6:05 am. My mom was in the shower, getting ready for her days work working for an accounting system for Travel Agents and at night working as a female valet for Valet of the Dolls, a mostly girls valet company in Los Angeles. I ate breakfast and was sat on couch dozing off when my mom opened the bathroom door screaming "TAKE ME TO THE HOSPITAL, IT'S HAPPENED" She then collapsed on the floor and started convulsing, I called 911, they were on there way. 2, maybe 3 minutes after it happened I could hear the sirens, they were here. She was unconscious as they rolled her out the house, asking me where they should take her. The nearest hospital is Brotman, "UCLA", I respond. I call my family Nana and other family, who have now moved to Australia. No one answers (it was about 11:30 at night), an EMT knocks and says she's conscious and they decided on UCLA as well. I called a family friend and then got a return call from Australia. Somehow, I then got in my car and drove to UCLA not knowing what to expect next.
I think I waited for about 20 minutes before I got to see her, by that time the family friend was there waiting with me. She was awake but in a lot of pain and "really cold". The doctors came in one by one and told us what we already knew, it had ruptured. "There's no time to do the pipeline now, we need to just coil it now to stop the bleeding." We say our goodbyes and they whisk her off to surgery. We sat outside Maddie's Room (the surgical waiting room at UCLA Ronald Reagan) for hours, in walked the Dr. (one of Dr. Duckwilers assistants), the surgery was a success and you can go see her in the ICU shortly. What was one family friend was now 4 and we made our way up to the 6th floor ICU. We had really no idea what to expect, would she be sat up talking? We weren't ready for what we saw, half her head was shaved, she had tubes coming out the scalp draining blood from the brain, other machines hooked up to her head. The nurse told me her brain is swelling and they're having to put her into a pentobarbital induced coma. One Dr. and his research assistant come up to me and ask if I'd like to sign my mom up for experimental research. They want to cut off circulation to her legs using a cuff similar to the cuff you use to take your blood pressure, they believe that the muscles in the leg put chemicals into the blood stream that basically "teach" the vital organs how to react in a situation with less blood flow, IE in a stroke, which I was told my mom was at a very high risk of suffering for the next few days. It was a very new research project in the states at the time, but looked promising. I was told they were already using it in Switzerland during the ambulance ride to the hospital to patients with a high risk of a stroke. I signed her up. The research lasted about 4-5 days, she was in a medically induced coma for 6 weeks. She did not suffer a stroke.
3 weeks into her coma, they tried to ween her off the pentobarbital only for her to show signs of seizures on her EEG readings. She was put back under for another 3 weeks. When they finally got her seizures under control and weened her off the pentobarbital, we were told it's not like the movies where the patient will wake up and begin to speak. They really didn't know what to expect when she did wake up, how much damage had occurred etc. She would open her eyes, stare out into space, close them again. A week after being taken out of the coma, there was a morning where she looked like Teri Schiavo and it scared me to death. From that morning on though, we started to see improvements. A couple days after that, she mouthed her first words of a picture and an object we were holding up. (the last name of her best friend in England and "blackpool rock", a type of candy in blackpool). The next day, we were told our insurance thinks shes stable enough to leave UCLA and go to a SNF. When we arrived at the SNF, the nursed asked "what happened to her?" Isn't there medical records passed along, shouldn't you know what happened? A week and a half ago, she was in a coma and now she's under the care of people who don't know what happened to her? I was scared. Fortunately, they weren't that bad, but a week after being there our insurance tells us she doesn't need to be at this place anymore and they move her to another SNF. I'll respect the rules of this board and not post the name of this place, but I wouldn't send my worst enemy to this place. There were times I would show up to see my mom and she would be on the floor (because she had involuntary muscle movements) or there would be diarrhea escaping from her diaper into her bed. Even after demanding it got cleaned right away, it would take them 15 minutes to appear. Who knows what happened when I wasn't there and how long those people sit in their own feces. Anyways, she was there for 2 weeks and they removed her trach pipe and stitched it up. As soon as that happened, I was told the insurance thinks she's fit to go home and if she stays she's 100% her bill. a month or so ago she was in a coma, now she's coming home. She barely recognizes me, can't walk so is bedridden, but fit enough to go home.
3 days later, she admitted back to UCLA for acting very loopy. She had a really bad UTI infection. She was back to the 6th floor where she left a month a go. While she's there, Dr. Duckwiler visits and says he thinks it's a good time to go ahead and do the pipeline surgery while she's at UCLA. During this time, the UCLA PT noted to us that she hadn't received PT for weeks in the current shape she was in, something she was supposed to be receiving and was told she was receiving at the SNF. He wrote an email to his boss, the director at OneWest Rehab facility at UCLA, that he believed my mom was a possible candidate for the rehab. It's a 3 week inpatient "boot camp" designed to help people like her get back on their feet quicker. The director visited my mom and thought she was an idea candidate for the program, and authorization from her insurance was all she needed. Her insurance decided she would be better off at a SNF and tried to send her back to the original SNF she had just left. 2 weeks before, they sent her home because she didn't need a SNF, now instead of one of the worlds best rehab programs, a SNF is better for her.
On January 9th, 2013 they performed the pipeline and a couple days later she was discharged to a new SNF (I was not sending her back to the other place) which was 2 blocks from our house. The PT at this place was excellent. They got her up and using a walker. In the middle of February, we got the "your insurance doesn't think you need to be here anymore" talk and back home she came. This time, she was way better off. Unfortunately, her PT had her believing she could walk with a cane way too soon and in mid March she fell and broke her pelvis. After another 30 days in a SNF, she was released home. In May, while using her walker, she fell and broke her hip. She was FINALLY released at the end of September (she spent more time in hospital and a SNF for her broken hip than her ruptured aneurysm, including the 6 weeks in a coma...). She's progressed well but is still using a walker. She's still on lots of anti seizure meds but hasn't suffered any seizures since the coma. Just this week she was diagnosed with hydrocephalus, so we're waiting to see if it's gotten worse or better with a newer MRI. The Dr. said that when it's taken care of, she should see fast improvement in her walking so fingers crossed on that.