I am a 40 year old wife, and mother of 2 sons, ages 11 and 12. We live in southcentral Nebraska, and of course, are devout Cornhusker Football fans! My husband is an automobile body tech, and rejoices when we receive hail storms, as it substantially increases his business. I have been a Registered Nurse since 1981, but just started my first job (since my aneurysm surgery in 11-96), only 2 weeks ago. It never felt so good to start a new job! I enjoy reading, playing piano, listening to music, spending quality time with my husband and 2 sons, and FISHING! I now live life one day at a time, and have learned to SLOW DOWN and savor each day.
I thought that I was living the 'perfect' life---Loving husband and family, 2 healthy and happy sons, a good job, etc. However, that 'perfect little world' came crashing down on me in January 1996. I suddenly became acutely ill with a bacterial infection of the intestines, and was hospitalized for almost a full week. After that incident, I thought to myself, "Great--I'm better, so now I can get back to 'NORMAL'". Little did I know that this was just the beginning of a long series of medical problems with no answers.
I began developing other symptoms, such as joint pain, fatigue, infected sores on my face, which later turned out to be shingles, blurry vision at times, rare headaches, and recurring episodes of severe abdominal pain with bloody diarrhea. I was sent to numerous specialists throughout the state, and hospitalized numerous times, with no answers. I would feel great one day, and the next day, I would wake up feeling so sick that I couldn't even attend my children's functions! I couldn't plan ANYTHING, because I never knew when I would feel good.
In June of 1996, I was at a large hospital in Nebraska for yet another workup, when out of the blue, I developed the most HORRIBLE headache of my life!!! I remember almost screaming, and telling my husband that my head felt like it was going to pop off. The doctors gave me numerous pain medications, including narcotics, with NO relief! They immediately did a CT scan which unbelievably came back 'normal'. Several hours later, the headache stopped, and we went home the next day, with no more answers than we'd had before!
By October, my husband felt a sense of urgency that we needed to go to Mayo Clinic in Rochester, Minnesota, for a complete work-up. I was on medical leave from work as an R.N., and told him I didn't see what good it would do — after all, we'd been to almost every doctor in our state, and NO ONE could give us any answers! One doctor ventured to say, "Well, since we can't find any thing, maybe it's all in your head." That doctor had no idea how prophetic his words were, even though he infuriated me at the time!!
On Oct. 25, 1996, my husband and I arrived at Mayo Clinic, and our first night there was wonderful — we toured the area, relaxed, and spent time just with each other. The next day, I saw the Gastroenterologist who had been assigned to me, and he ordered a battery of tests, including an MRI, which was scheduled for later in the week, due to my one BAD headache, and occasional headaches with blurred vision. That night, and the next 3 nights, at exactly 6:00 p.m., I developed HORRIBLE migraine-type headaches, and ended up in their 'Emergi-Care', where they gave me something for the pain. After the 4th night, the doctor working there told us that we needed to have the MRI moved up to the NEXT morning, because something was going on to cause these headaches. So bright and early the next day, our phone rang in the motel, telling us to come to the Clinic right away, for an MRI.
After the MRI, I continued on with the other GI tests, etc. At noon, we received a note to report back to the gastroenterologist, which was unusual. Once we got there, we were told by the secretary that we were to return in 3 hours to see a neurosurgeon. My husband and I were absolutely speechless, and scared to death! We had no idea what was going on, and were expecting to find something wrong in the gastrointestinal area. When we came back after the longest 3 hours in our lives, we were met by Dr. Piepgras, a renowned neurosurgeon, who explained that I had a large aneurysm behind my left eye, that was pushing up on my optic nerve. He said I had such a healthy, strong heart, that every time my heart beat, it was just pumping that aneurysm up higher and higher!!
I had an angiogram the next day, which showed no other aneurysms. So I was scheduled for an 11 1/2 hour surgery to clip the aneurysm. We called family and friends, and prayer chains were set up everywhere — at our home, in other states, even in Canada and Spain! For some reason, I felt totally at peace, and almost felt like I was walking 2 feet off the ground. My husband and I both knew that the peace we felt came from God, and all the prayers being lifted in our behalf. On November 5, 1996, after kissing my husband and 2 sons, ages 10 and 11, goodbye, "for awhile", I walked down to the surgical area, waving goodbye to my family and relatives in the waiting room. The doctor had told us that he only had an area of 1/20,000 inch to work in and that if he went beyond that area, I could end up blind, paralyzed, or even dead. However, as I was being 'put under' for the 11 1/2 hour surgery, I was at perfect peace!!
The next thing I remember is hearing nurses LOUDLY asking me, "Can you move both your arms and legs?", I could. Then, they asked me to cover my left eye and tell them if I could see O.K. out of the right eye, and vice versa. I could. But when they asked me to look out of BOTH eyes at the same time, everything was skewed to the right, with severe double vision (about 3 feet apart!), and my left eye was almost totally closed! They explained that this was due to working on the optic nerve, and that everything would get back to normal. Well, after wearing a patch over my left eye for 5 months, my vision was restored to normal. It was a painful recovery to say the least, and I've battled fatigue and some depression and headaches. But I can honestly now say, that I KNOW God had everything planned for my good. I believe all of the other symptoms were there to lead me to a large medical center such as Mayo's, for most of the symptoms disappeared immediately after the surgery! The surgeon said that the aneurysm was greater than 2.5 cm. and had stretch marks on it, indicating that it was very close to rupturing!! So God's timing WAS indeed perfect, and HE restored my vision in more ways than one! I now have a much deeper faith, and realize that I won't always be able to 'see' the reasons for everything — I simply have to trust Jesus, my Savior!!
I would love to visit/hear from anyone who has questions, or needs support. And I'd like to thank the MANY people from the support page who have written me with words of suport!
Addendum: 22 Jul 1999
I've seen quite a few letters lately re: people who are battling headaches, neck pain, arm pain, etc. following aneurysm/AVM surgery. Thought I'd pass on my personal experience, which MIGHT help others.
Following my aneurysm surgery in 11-96, I never was really headache-free, and then the headaches became worse, and then it traveled to my arms, and I also had the 'pins and needles' feeling in my arms. Over the years, it traveled down my back, until finally, even my legs were involved. The pain was excruciating, and I did have surgery for a ruptured disc at C 6-7 last fall, but that didn't stop the pain. My husband and I went to MANY doctors, being told various things, and even being called someone who was just looking for 'drugs'!!!!! I can't tell you how much chaos this created in our lives. I was in so much pain that I was basically on the couch all day, and couldn't sleep at night because of the pain. FINALLY, as a last resort, after going to BIG TOWN doctors and a Pain Specialist (with no success), I took the bull by the horns and went to a small town doctor near here who is acutually a D.O., and had been highly recommended by a good friend of ours.
After about ONE month of tests, he finally, in consultation with a neurosurgeon who works only with aneurysm patients, came up with the diagnosis of fibromyalgia. I am now starting water therapy, and also have started on the meds that are recommended for this condition. The meds that the neurologist and doctor ordered are Zoloft in the a.m., and Elavil in the p.m. These are antidepressant drugs, but are used for fibromyalgia, because they work in the part of the brain that is affected by fibromyalgia. They also have me on high doses of Neurontin for the pain, which really does help. It's a seizure med, but they're having tremendous success with it for different types of neurological pain. But the dose MUST be high enough. They've upped my dose until finally I DO have alot of relief!!!! It may make you drowsy for a few days, until your body adjusts to it, but then you don't feel any different!!!
Readers can look up fibromyalgia for an extensive overview, but basically, it is like having 'arthritis of the muscles'. It causes many symptoms, including headaches, severe pain in different areas of the body, and can feel like you ache all over like when you have the most severe case of the flu. It can cause G.I. disturbances, and most certainly causes sleep disturbances. There are so many more symptoms, but often it starts after a traumatic event, physically, such as brain surgery!!! It is now accepted by the AMA as a disease, and is a close cousin to 'Chronic Fatigue Syndrome'. They are doing MUCH research in this area, and have found that it has to do with a sleep disorder, related to inappropriate levels of growth hormone, and levels of Serotonin.
Since starting these meds at the beginning of this week, I already feel better, and have been up and about, and slept ALL night for the first time in ages!!!!!! I feel so much better overall already, but still have days of pain, which you need to try to 'glide through'. Usually if you overdo it, you'll suffer 2 to 3 days later. Sometimes with me, I pay the next day!!!:-)
The only absolute diagnostic test is a positive 'trigger point, or pressure point test'. The doctor presses 12 to 13 areas on your body, and if you experience severe pain, the diagnosis is established. You only need to test 'positive' on a certain percentage of the points. However, mine was so severe, I was positive on ALL of them!! However, you need to exclude other diseases first, such as lupus, Rheumatoid arhritis, etc. SO, after going through LOTS of pain, tests, and stress, we finally have a firm diagnosis, and I can now work on this, and learn to deal with the 'bad' days. But have hope!!! They are working vigorously on a cure!!! Guess I forgot to mention....They also prescribed Soma for the muscle spasms, which are also a part of this.
Thanks for your time...Just thought I could maybe help some of these people who have written in.
God Bless!!
Update 31 Aug 1999
I thought I'd let everyone know about recent developments in my life. After many weeks of Physical Therapy, I was having more and more pain, especially when they had me do neck exercises!! The water therapy felt great, but they only have you do that for approximately 8 weeks. So, I went back to my original Dr., as the new Dr. felt it was only fibromyalgia causing this excruciating pain, and I knew in my heart that something else was going on!! My original Dr., who I've gone to for many years, told me that I probably have some degree of fibromyalgia, but that my case is very complicated, and the pain is probably due to a combination of 'failed back syndrome', 'post-craniotomy headaches', and 'fibromyalgia'. After MUCH suffering, he finally prescribed pain meds, and said I'll have this 'chronic pain', always.
Also, after much debating, I finally decided to file for SSDI in April of 1999, as I was in constant pain. My Drs. AND chiropractor told me they considered me disabled, so I went for it!! However, the Drs. and everyone I talked to, told me that you almost NEVER get approved the first time, and not to get discouraged. Since I knew absolutely NOTHING about this process, I wrote Mr. Hankinson, who has so kindly volunteered his services for our group. Also, I talked to Joyce Steadham of our 'group', and her advice was SO helpful!! Then, after the forms had been filled out, and I was playing the 'waiting game', Richard Stokes (also a volunteer for our group), was extremely kind and helpful, as he helped me 'navigate' the system to expedite the process!!!! God is SO good, because I just found out last week that I've been APPROVED for SSDI, and on my FIRST TRY!!!!!
This certainly isn't what I had planned for my life, as I've always been a very hard-working person with strong work ethics, and I studied day and night to become an R.N. However, once again, I'm reminded that GOD has everything in control!! I am OVERJOYED that I've been approved for SSDI, and once again, want to thank all of the above, for all of their help and 'words of wisdom', which helped me so very much!!!!
Update 21 Oct 2001
It's been awhile since I've written, or been able to respond to others who have questions, and for that I apologize. I read the recent poignant narratives that were written by daughters who lost their father, and decided I would add a quick update of my own.
There truly is a special bond between a daughter and her father, and I didn't realize HOW special that bond is until I recently lost my Dad, also. My Dad was diagnosed with Alzheimer's one year after my aneurysm surgery (which was done on 11-5-96). He and my Mom moved from the farm they'd lived on for most of their married life, to a town close to where I live, so that my siblings and myself could help "down the road", as his disease progressed. My Mom and Dad had been married for 55 years, and my Dad just celebrated his 79th Birthday in August, but looked and acted like a 65 yr. old. He had NEVER been in a hospital in his entire life. Was born on his family homestead, and was a strong man physically, who was never sick. He was the quiet 'strength' of our family, and loved us all very much. When he and my mom married, he started with nothing, other than a strong work ethic and a great faith. When he moved from the farm with my mom several years ago, he had built a large farming and cattle operation, and was respected and loved by all who knew him.
When I had my brain aneurysm surgery in 1996, it was a very long operation, and I wasn't waking up like they 'wanted me to' when I finally was transferred to ICU from the Recovery Area that night. The next morning, I still was not 'waking up' as they wanted me to...that is, until I heard my Dad's loving, strong voice saying, "You're strong...You can do it, Lynnette." I was telling my mom about this yesterday, and how Dad was SO strong for me then. It was then that she told me that Dad had been standing outside the ICU with tears, but was told that maybe I would wake up if I heard my Dad's voice. So, he took a deep breath and came in, and after hearing his voice, I did indeed REALLY wake up for the first time.
I could go on and on, but will tell you what happened to my Dad, that I find so ironic. He was still ambulatory, etc., and living at their home with my Mom. In August, a week before his grandson's wedding, he was out with my Mom to meet some friends and go out for lunch, when he tripped over a cement curb that had not previously been there. He was badly bruised on his face, and had a minor cut on his eyebrow, which the Dr. steri-stripped, but other than that, was apparently O.K. He never complained to anyone. He only told Mom several times that his head was a little sore. Then, the end of September, he seemed to deteriorate a little, and we thought it was just the Alzheimer's. He was, however, very loving towards Mom and the rest of us in the following days...more than usual.
On the morning of Oct. 5th, 2001, Dad didn't wake up. He was unresponsive, and taken to the hospital ER by the emergency unit. A CAT scan was done, which showed a subdural hematoma that correlated in time with his fall in August, according to the Dr. He also had a current major bleed on the opposite side, which the Dr. said could have been caused by a recent minor 'jolt' which irritated the existing hematoma. Thankfully, my parents had made a living will years before, and my Dad was adamant about not wanting any life support of any type, or anything that would prolong his life, should something such as this occur. The Drs. told us it would be a miracle if he lasted 24-48 hours. However, due to my Dad's strong heart, and excellent physical condition, he lingered for 5 days without any IV, oxygen, or ANYTHING, other than Morphine for comfort, in the last several days.
I would sit and talk to him, and tell him how blessed I was to have him all these years as my Dad, and how very much I loved him, and thanked him for being such a loving, caring, Christian Dad. Finally, at 6:30 p.m. on Oct. 10th, my Dad opened his eyes for the first time since the bleed, and his beautiful blue eyes 'sparkled', and he SMILED the most wonderful smile, before taking his final breath. We have NO doubt whatsoever, that Dad was seeing the gates of Heaven open, and seeing His Lord and Savior. I should add at this point, that from the time Dad entered the hospital, his pupils were fixed and dilated. However, when he smiled and opened his eyes, they were eyes that were sparkling and 'alive'!!!
I miss my Dad very much, and even though I know in my head that he's finally 'Home', and not suffering anymore, my heart is heavy and 'hurts', and I am grieving. At his funeral, we included a note in the bulletin that was written by my oldest brother, with input from us all.....The Pastor also read it during the service. I'd like to share it with you:
Dad,
At times, you expressed regret over having only an eighth-grade education. We never understood that. You showed great insight in dealing with others. You showed courage in dealing with illness. You showed creativity in your farm and business. You showed integrity in every area of your life. Most importantly, you showed compassion to each of us. Your death leaves a hole in each of our lives. Yet, we celebrate your faith and love in Christ. You were a remarkable man. We love you.
I might add, in closing, that Dad had only an eighth-grade education, due to the times he was living in. He was needed at home to help with the farming, and many people at that time were forced to do the same thing.
They say that writing is 'good for the soul', and therapeutic. Thanks for listening. And I just find it so ironic that my Dad is the one who gave me the 'strength' to wake up after my surgery, and in the end, he succumbed to a subdural hematoma, and major brain bleed.
I love and miss you, Dad.