2 Months of Spinal Headaches and Rehab...Really?

So off to another hospital for rehabilitation. I couldn't walk, I couldn't read, I had the nose of a dog and the ears of a bat! My senses where so hyper that the shades needed to be drawn and not even the cleaning lady could come in my hospital room. The crinkling of the waste paper bag was too much for me to handle. The headache, oh the headache...it was like NOTHING I had ever experienced. The dura graft that covered my brain was sown in place and the tiny needle holes leaked spinal fluid for 2 months straight! I had to sleep at a 30 degree angle. The rehab unit was nice and the nursing staff was great. But the Physical Therapy and Occupational Therapy drove me crazy. Why couldn't these people just leave me alone?! I didn't want to do anything but lay in my bed.  Of course that was IMPOSSIBLE on a Rehab Floor.  The pain was brutal. I remained on Morphine pills and barbiturates for the head pain. I was starting to make some progress, that was until this horrible excuse for a Neurologist went and ruined my world!  I know....that sounds pretty harsh.  But if I am going to be honest then I have to speak the truth. He looked me straight in the eyes and said "you can't take these meds anymore because you will become addicted. You have children who you need to take care of."  Who did he think he was? I just had my entire neck and skull sawed open the week before and he was worried about me getting addicted?!!!
Well, he took away all my medications without consulting the Doctor who ran the Rehab Unit.  I could feel every millimeter of where that saw carved through the bone of my skull! My nurse came into my room on the next shift and saw me rolled up in a ball with the lights out. She asked "what happened to you?"  I told her that the Neurologist took me off all the pain meds. This Nurse was furious. Her name was Roxanne. She looked like  a biker-chick, and had a truck drivers mouth. But she was my ANGEL! She ran out of the room and came back with my pain meds. She used some colorful language to describe the Neurologist and told me he had no right to do what he did. She reported him and he was off my case.
I made progress a little at a time. My short-term memory was trashed and I could not organize my thoughts but I was able to at least walk with a walker and read a little. One morning I awoke. I sat up and then without any assistance walked right up to the Nurse's Station and said  "I want to go home now".  They looked at me with amazement. Everything just seemed to kick in gear. I called my husband, packed my bags, said my thankyous and waved good bye.....was I really ready to go home?

My Brain Surgery...AKA A Zipper Head (Sept.13, 2000)

I decided to wait a couple of months to have the surgery. I wanted the kids to be in school. I don't think I could have lasted much longer. I was so weak and pumped up on drugs. I looked like the walking dead! I decided to have 12 inches taken off my hair before the surgery. It was like removing my right arm. I always had long hair and the only way I could deal with it was to donate it to make wigs for cancer patients. It made me happy to help. September 13 th 2000 could not have come quick enough. I arrived at the hospital at 5:30 am. My husband and parents came with me. I kissed them and rolled away into the pre-op room. I had incredible peace. I could feel all the prayers carrying me. I was not one bit nervous and didn't need any sedative beforehand. The IV went in and out I went. 4 to 5 hours past and the Surgeon came out to the waiting room. He looked exhausted. He told my husband that the surgery took much longer than he anticipated. He explained that the MRI did not show the extent of the problem. I had so much scar tissue  and had virtually no spinal fluid flowing from my spine to my brain. He was able to perform a successful decompression with a dura graft. The incision went from the base of my neck to almost the top of my head. Hence, the zipper-head. I remember very little but I do remember feeling and hearing this swishing sound in my ears. The doctor explained that I was actually hearing the spinal fluid flowing into my brain. It was an amazing sensation. It felt like my brain was being bathed. Almost like a dry sponge soaking up water.
To the doctors surprise, I was NOT able to walk and I had double vision. All my senses were magnified 1000 times. The pain in my head and neck where unexplainable. How much pain could the human body withstand? I think I had found out. Somehow, none of this concerned me. I just knew everything would turn out well in the end. I spent a week at the hospital and then I was transported to another hospital for rehabilitation. This was not typical. Most went home in five days. But not me...

An Angel with Neurosurgical Hands

I called Dr. Duncan's office and took the first appointment available. I walked in his office, shook his hand and knew almost instantly that this was no happenstance. He put my films up on his x-ray illuminator. He studied them for a minute or so and turned to me and said "I can fix this". I thought my heart would leap out of my chest. I could not believe that there was actually someone that was willing and able to help me. I gave him the long list of my symptoms. His assessment was not exactly what I expected. For the first time, a doctor was actually able to separate my symptoms into more than one problem. He explained that the surgery would resolve the headaches, nausea, dizziness, difficulty swallowing, and possibly the fatigue. But what about the pain in my spine and all my joints and muscles? He explained that those where the symptoms of something else. I was a little bit disappointed, but at the same time relieved. Would my constant excruciating headaches finally come to an end? What would that feel like? To be honest, it was very hard to comprehend. I could not remember life without them. The doctor warned me that this was the most painful surgery that he performed. Nothing could have prepared me for what would happen next.

What is an Arnold -Chiari Malformation Anyway?

Before I go any further, I think it's necessary to explain what a Chiari Malformation is. Most people had never heard of it and at the time of my diagnosis most doctors had no clue what it was either. It supposedly is a birth defect, although some can be acquired from a severe whip lash. Anyway, mine was congenital. I was born with it. I don't really doubt that, because my cranium is quite small in comparison to other people my size. Apparently the base of the skull does not grow large enough to accommodate the growing brain. The brain then herniates into the spinal canal and causes all kinds of problems. My herniation measured 9mm while lying down. Chiari is a cousin to spina bifida. As research continues so does the scope of this birth defect. There are now many known associated conditions that were not known when I was first diagnosed. Feel free to click on the link to learn more about the condition. Someone you know may have the malformation and not know it.

http://www.asap.org/index.php/disorders/chiari-malformation/

Doctor, Doctor, Give me the News. I've Gotta Bad Case of ..........

Soon after my third child Caroline was born, it all got kind of fuzzy. I do remember that the next two years were spent either in bed or at doctors appointments. Pain filled my body and my entire life. One evening in 1998 I was taken to the hospital emergency room. I could not move my neck. It just came out of no where. I didn't twist it funny or hurt myself. The pain was incredibly intense. They took an X-Ray and shot me up with Demerol. Not a compatible drug. But that's another story! They sent me home and recommended I see a Neurologist. In the meantime, the neck pain and headaches persisted. I felt incredibly fatigued and all I wanted to do was sleep. I would sleep 16 hours a day. This was so difficult because I had three children who needed me. My youngest was just a baby. I saw the best infectious disease doctor in the state. She found nothing on the blood work and diagnosed me with Chronic Fatigue Syndrome. Basically she had no clue. The neurologist thought I was depressed. He took all kinds of tests to rule out MS and other neurological diseases. According to him, all were negative. One day he called to tell me that my MRI showed a couple of things, but that he considered them to be very minor and that they did not explain my symptoms. After he hung the phone up, I took a few minutes to digest what he said. I called his office back and asked the secretary to read me the results of my MRI and I wrote down every word she said. I looked at the piece of paper and although I was not a doctor, it looked like it was SOMETHING. And that is when the nurse in me took over and I began doing my own research. The Internet was pretty new to me, but I learned how to navigate it quickly. The first thing I looked up was something called an Arnold Chiari Malformation with a 9 mm herniation. I mean, that sure sounded like something to me! There was not a whole lot of information on it at the time. Most were found on autopsies or babies with Spina Bifida. However, I stumbled upon a world wide Chiari Group. Finally an answer to prayer. I read all I could and emailed people from all over the English speaking world who had the birth defect or knew someone with it. This was amazing. It explained most of my symptoms to a tee. The head and neck pain, the dizziness and nausea. The difficulty swallowing and loss of balance. And the chronic fatigue. I seemed to find my answer but I could not find a doctor to agree with it or to help me. I went from neurologist to neurologist. I even went to see the head of Neurosurgery at New England Medical in Boston. They all thought I was crazy and depressed and recommended that I see a psychiatrist. I was sent home time after time with no help and no hope. I spent nearly two additional years on the couch or in bed. I grew weaker and weaker as the months passed. I thank God for my mother and some close friends who helped me with the kids. The burden was also tough on my husband who at that time worked a gazillion hours. I prayed and prayed for help and guidance but it seemed to elude me. Until one day a friend of the family through our church called me on the phone. She told me that her daughter who had spina bifida had an excellent pediatric neurosurgeon. His name was Dr John Duncan III. This friend told me she would talk to her doctor and explain my situation and see if he would be willing to see me. He agreed! And that's when everything began to look a little bit brighter......Was there a light at the end of this long dark tunnel?

A Tea Party with the Devil.

This blog gets a lot more personal and goes deeper into my psyche.
I was 31 yrs old and my husband and I were discussing whether to have a third child or not. However, the decision was made for us because I was already pregnant and didn't know it. Like clock work the vomiting began in the 4th week. I had already been through two difficult pregnancies, but for some strange reason this one felt different. I couldn't keep anything down. I had the morning ritual timed perfectly. I would eat a bowl of CoCo Puffs, rest on the couch for about twenty minutes or so, walk upstairs to my bathroom, tie my long hair in a ponytail then open the toilet seat and throw up. I purposely chose to eat the coco puffs because they didn't taste bad coming back up. The nausea and vomiting began to eat away at my stomach. My gut burned with agonizing pain. I could no longer consume any substantial food. I would constantly vomit bile which did a number on my stomach and esophagus. My husband would leave a bottle of Gatorade and some dry toast or instant mashed potatoes (the only foods i could tolerate) by my bedside before he left for work. I have no recollection as to where my kids were or who was taking care of them. I laid on that bed in agony. Sometimes I would fall asleep on the cold marble floor of my bathroom after wrenching up stomach acid. I was just too weak to crawl back to bed. Almost every day and night were spent on my couch or bed. I became so frail and dehydrated that I would either be hospitalized or need IV therapy at home. My viens collapsed constantly from the lack of fluids. My drained body gave way to a very weakened mind. To anyone who knows me, they know me as a person full of life and positivity. That person disappeared. I had never known what it was like to be depressed before. I had heard and read about people with severe depression but could in no way comprehend it. I may have even been a little bit judgmental about people wanting to take their own lives. I guess I looked at them as selfish. All that changed , because now "that person" was me! The agony went on month after month. I spent most of my time with my head in a toilet bowl. I felt like my stomach lining was being eaten. My body was sapped of all energy and any nutrients I had stored were being sucked by the growing baby inside me. My mind was starting to become affected. I was laying in my bed praying that God would take my life. How could I think such thoughts and truly mean them? I thought "I am a Christian and life is a precious gift". I didn't care. I just wanted the suffering to end. My mind began to come up with all kinds of scenarios. I thought that my husband was young enough and could find someone who would love and raise my children. I rationalized that everything would work out. I just wanted it to end. I would never have taken my own life, but from that day on I had a very clear understanding for those who had. I felt as if the devil himself was sitting on the edge of my bed and I was having a cup of tea with him! Very soon after, I was hospitalized for severe dehydration. My doctor said I was one in a thousand cases that get this sick. But he could not offer any real explanation. I knew this was not normal. One of the nurses told me to make an appointment with a GI doctor when I was discharged. I was about 7 or 8 months pregnant when I went to visit Dr Coli. He was a peculiar gentleman but brilliant. He asked me lots of questions and appeared quite intrigued with having a pregnant patient. There were no tests that he could safely perform so he had to go on symptomology. He told me that he felt I had an ulcer. He put me on some old fashion medication that the pharmacist had to hand mix and within
3 days I was eating! But I noticed as I grew in size, I continued to become even more weak. I had trouble walking more than ten steps without huffing and puffing. I could not lift my arms over my head to wash my own hair and the fatigue kept me in bed despite the fact that I could at least eat something as long as I downed my medication. What in the world was wrong with me? NOBODY could give me any explanation. I had baby Caroline right on time and as soon as she was out, I felt as if a wilting flower finally got some water. But to my dismay, that was VERY short lived.

The Eye of the Storm

It was time to sell our tenement house. I was done being a landlord! We bought an adorable brand new little three bed ranch in the boondocks. I was working part-time for a Nursing Agency and loved working with new mothers and their newborns. The job was perfect because it took no physical exertion. My husband and I were discussing having another baby but I was so afraid of the brutal back pain I endured for 9 months with my first pregnancy. I actually asked God to either take the pain away or not allow me to become pregnant. It was the first time I prayed with such fervency. He answered my prayer! I became pregnant with Luc at the age of 27. I carried him so far in the front that when I turned around I hardly looked pregnant. He didn't rest on the nerves of my back. I went through the first five months puking up everything I ate, but my back felt great. It was a very needed respite from the chronic pain........ My son was born. The headaches and fatigue persisted and my discs would periodically rupture. I took care of my kids and worked part time but still needed my almost daily nap. Many times I think back and wonder how I did it. I entertained, made 4 and 5 course holiday meals, decorated ten foot Christmas trees, baked Italian cookie trays, Easter breads, had birthday parties, had play dates and everything else a normal  mom would do for her family. The difference was that after I did something big, I would crash for three or more days! That was my life, but I was still young and could handle it. Things seemed manageable, but little did I know the real storm was just beginning.