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25 June 2001
It was the Friday before Memorial Day Weekend, 2001, when I noticed I had missed a phone message from the night before. It was a 6:00 pm call from the neurologist I had been sent to, somewhat cheerfully stating he had the results of my MRI. I figured he wanted to clear my mind before the long weekend ahead.
I had gone to the emergency room and my primary doctor when I had a bout of unusually strong headaches, during which my left arm and leg had gone numb. My doctor sent me to a neurologist to be checked. The neurologist ordered an MRI and a carotid duplex.
When I got to work on Monday morning, there was also a message from the neurologist. We played telephone tag for most of the day but at 2:00 pm he told me that the MRI showed that I had an aneurysm. I listened as he explained what would happen next, but none of it was really registering. When I got home at 4:30 that afternoon his office was calling to tell me that I had already received approval from my HMO to see a neurosurgeon at a major university hospital. I immediately made an appointment for the following Wednesday. I'm not sure what frightened me more, the news of the aneurysm or the speed with which my insurance was giving approval.
It wasn't until I met with the neurosurgeon that I found out that the aneurysm was on the carotid artery directly behind my left eye. There was some concern that it might be touching the optic nerve. They explained that I had three alternatives: coil embolization; surgery, or waiting and doing nothing at this time; but I was told that because of where the aneurysm is and the direction it was facing, if it did burst, it would be serious, if not fatal. Needless to say, waiting was not an option. I went home and back to work on Thursday, but I didn't make it past 11:00 am before I was calling the surgeons and saying that I needed to proceed now! Every headache was causing me to wonder if the aneurysm was about to burst. In addition, my cousin, who as only three months older than me, had died in November from a ruptured aneurysm. They scheduled the coil embolization for Tuesday, June 5, 2001.
Based on all the information I had received from the doctors and all I had read on the internet this seemed liked the least invasive and easiest way to go. And it would have been, if it had worked. Unfortunately, due to the shape of my aneurysm and its close proximity to the retinal artery, the coiling method wouldn't work despite three hours of trying.
I was kept in the hospital for two days until the lead neurosurgeon would return from out of state. It was decided that Friday, June 8, 2001, he would do the surgery. What was predicted to be a 2-3 hour surgery, only took 1 1/2 hours. Everything went without a hitch. When I awoke in ICU, I had complete memory, total vision, and of course a headache. I was sent home on Monday, and my recuperation has been going well. I was even able to take my Dad and my husband out to breakfast on Father's Day!
The most phenomenal part of this entire ordeal has been the outpouring of caring, love, prayers, and good wishes from people in all parts of my life. My parents flew cross country to help with the cleaning, cooking and caring for my two sons. The cub scout pack brought dinners when I was in the hospital. My work colleagues sent flowers and coupons for everything from videos to coffee to Pollo Loco. I even heard repeatedly from a brother I hadn't heard from in years. There was the nation's largest state lottery here yesterday and I didn't have the winning ticket - but that doesn't matter, you see, as far as I'm concerned, I had already won a much bigger lottery, life!
Update: 9 Jun 2003
Memorial Weekend has passed and the Jacaranda trees are just coming into bloom. For me, these things tell me that my anniversary date is drawing near. After two years, I guess I'm coming into what I suppose is going to be my "normal." I had avoided writing before this because I wanted to feel as if I was improving before I wrote. You see my original narrative was so positive, it felt silly to complain about the miserable headaches, the fatigue (that even I didn't fully recognize), and the general malaise that I was feeling. But I felt dishonest leaving it to appear as if I had no ramifications from my surgery. So here is my update.
Like most, I was in a big rush to resume my "normal" life after my surgery. So I entered what can only be called a period of denial (having nothing to do with the river in Egypt). I even convinced myself that everything was fine. I returned back to work as a prosecuting attorney in just 6 short weeks after my surgery. Then I took on a position in my local city government as a sub-committee chairperson; this required weekly evening meetings in addition to my full time job. Of course, I was still doing everything I thought I should as a Mom and a wife.
In September, I began having head pain - I stopped calling them headaches, because it just confused those trying to help me make the pain stop. I went to three neurologists trying to find a way to make the pain go away. I was literally in pain 24 hours a day, seven days a week. I was able to keep the pain under control with the use of advil or tylenol, up to 10 per day! When that didn't work, I used Vicodin but only sparingly as I had no interest in becoming addicted. One of my neurologists had me trying every narcotic and opiate known to mankind - they were not for me.
Before my aneurysm, I was in need of sinus surgery, and so proceeded to have that surgery in November, hoping that my pain was a result of a sinus problem. But the sinus surgery did nothing to help the pain. Unfortunately, a series of sinus infections after the surgery sent me off in search of another sinus doctor who found an infection, in of all places, behind my left eye which is adjacent to my aneurysm site. This surgery required a specialist who also required an MRI. The surgery in July went well. But, the MRI showed a decrease in blood flow beyond the point of the aneurysm surgery to the left side of my brain. I went to my neurosurgeon to tell me what he made of the MRI. Unfortunately, he denied that anything was wrong, saying that if I had this decrease in blood flow, I would have suffered some deficit and I had no such deficit (but I opined that perrhaps I was proof that we didn't use our whole brain). He indicated it could also have been something misinterpreted in the MRI.
Fortunately, for me, another neurologist in his office disagreed and has been working with me to try to find a means of controlling the pain. In September '02 I was in a car accident in which I hurt my knee, broke my sternum and a rib, and had serious head pain. An MRI showed no new damage or problems, but once again showed a decrease in blood flow to the left side of my brain. This time the MRI was done at my neuro's hospital. While the neurosurgeon still denies that anything done in the surgery caused this decrease, my neurologist is not so sure. Unfortunately, if the clipping is somehow responsible for the decrease in my blood flow (it can't be seen due to the reflective reaction of the clip causing a black spot) the only solution would be surgery, something I am not prepared to do. She has however managed to help me control the pain with the use of Amitriptyline - now I only need 4-5 advil's per day. I have my blood checked annually to make sure my liver and kidneys are OK. I wish the pain would go away for good, but at least now it's tolerable. I'll continue my quest, but until then I think of the pain as my reminder that I am alive and was fortunate enough not to fall victim to the threat we know as aneurysm.
I want to thank our family for this site which has allowed me to not only ask questions of the group, but to share what I have experienced with others. I pray that when next I write, I will have even better news. Until then, my prayers are with all who share directly or indirectly, this experience known as aneurysm.
Update: 8 June 2004
It is June 8, 2004, and I just had the privilege of sharing my experiences with someone who was asking a question about aneurysms. I can't think of a better way to spend my third year anniversary. The past year has been great. For the first time in I can't remember how long, I did not have a single surgery for the whole of 2003! Oh my podiatrist was making sounds, but I put my foot down. I was not going to have a single surgery, and I didn't!
This year has brought with it a coming to terms with who I now am. And I am a very different person then the one who had a crainiotomy in 2001. I still have head pain, but now it only requires 1-3 advil per day in addition to the Amitriptyline. Unfortunately, the age gods have caught up with me and I am now officially in the state known as menopause. A state which allows me repeatedly to have, as I call it, "my own tropical vacation." I had started to exercise at "Curves" only to develop a heel spur, which required I not put so much force on my feet. In addition, it has been determined that I have a hypothyroid condition. So, between the medicine to handle my head pain, menopause, hypothyroidism, my heel spur and the general fatigue that still persists even three years later, I am so much more the person than I was before.
And while I mean that physiologically, I also mean that spiritually. I have a greater respect for life and family and prayer. I went looking for a quote to express what I was trying to say and found this. I think it describes us all.
"The most spiritual human beings, assuming they are the most courageous, also experience by far the most painful tragedies: but it is precisely for this reason that they honor life, because it brings against them its most formidable weapons." — Fredrich Nietzsche
Update: 9 June 2005
Every year on June 8th, I take the family out to dinner to commemorate the date of my surgery. I just got home from my anniversary dinner and thought I should write an update on what the year has brought. It's been four years! Sometimes it is so hard to believe that it has been that long and other times it seem like forever ago.
Overall, I feel that I am so lucky. I am able to go to work every day at a job I love (yes it's the same job I had before my surgery). I have a loving husband and two rapidly growing sons. There's not much more that I could ask for. But, so that I don't mislead anyone, my life is not without its hurdles. In February I had surgery on my foot and was required to not walk for 8 weeks! And almost eight months later I still walk with a limp. But I'm working on it. They tell me I have carpal tunnel syndrome and will require surgery on both of my wrists. I don't think I'm going to rush into that surgery until I get full use of my foot. I continue to get headaches daily, but have them under control with amitryptiline and advil. I still have some memory glitches.
On a happier note, my husband and I are going to a long saved for vacation to Europe! Both of my boys are going to the National Boy Scout Jamboree so we get to go alone!!! Our first vacation without our children in 15 years.
To everyone in this group, may you find a reason for joy in each day; a source of help for each problem; and a way to help another each day. To all those who have sent thoughts and prayers my eternal gratitude.
Update: 22 July 2006
It's been five years since my aneurysm surgery, and for the first time I really didn't know what to write. It seems that I have had the ability to resume my life. Not that things are as they were BS (before surgery), but that I have settled into comfortable acceptance of those things that are different and have adapted my life around them. But even after all these years, it seems we survivors sometimes forget that our ordeal affects all of those around us.
When I went to my 12 year old son's school's Open House, I found out that my son had chosen me as his "hero" and had written his essay about me. While some of his facts are not completely accurate, and his spelling may not be perfect, I just now found out the impact my surgery had on him. His essay caused me great difficulty in keeping my eyes dry. I thought that I would share.
My hero isn't all that strong. My
hero isn't all that fast. My hero, however, is the bravest person I
know. My hero is a lawyer, but more importanly, she's my mom. She
lacks nothing in character. Her only fault is a brain anurisum that
she had when I was in second grade.
She found out she had it the day after we went to Six
Flags. She found out that if she had gone on Goliath she probably
would have died. But she didn't because I didn't want to go on and
she stayed with me. After that she went to the doctors on May 8.
She was told that she had to undergo surgery that had a chance that
she wouldn't make it.
She showed bravery beyond anything I had seen before
by understanding and being willing to undergo the sergery. Lukily
she made it, but she had major headaches four times a week for the
next three years. She never complained about the headaches, even
when they woke her up in the middle of the night, she just kept
going, saying the she was lucky to be alive.
That's my idea of a hero.
We are all so busy trying to get through our own day, that we often forget that others around us are along for the ride. Stop and give those others a hug.
Update: 14 May 2009
I had planned on doing my eight year update the first week in June. But then, just when you thought it was safe to go forward with life, another surprise rears its ugly head. Last Sunday, I began to smell cigarette smoke - the only problem is that no one was smoking! This smell continues on and off to today. A quick check on the internet revealed that many have had this and that I should call my neuro. Well, an EEG showed abnormal brain activity in the area near my surgical site. My neuro is concerned that I am in danger of having seizures as a result possibly of scar tissue around the site. The questions I have are, has anyone else had any smells that were a precurssor to a seizure? Have you had a seizure? What was the severity of your seizure? Any information that anyone can give including what medication they may have taken would be greatly appreciated. I really thought that after eight years, I was in the clear in so far as new problems were concerned. I thought wrong.
Thanks in advance for any info you can give me.
Discussion, comments, or questions: Eloise Phillips
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