My Story
Growing up, I always felt different from the other children around me. I was born with a sunken in chest and an eye condition called Nyastagmus, which caused my eyes to move rapidly back and forth. When I was a child the nystagmus was very noticeable and always fascinated people causing them to stare and sometimes even ridicule me. By Junior High School, I was often the target of hazing.
There were other differences too between me and my peers. I was awkward and clumsy and learned things slowly. I often had rashes, allergies and infections. I could not keep up with the other children on the playground. I became fatigued easily and often had side pain when running. I had sharp sudden pains in my legs, which the doctor attributed to “growing pains”, and I was unable to memorize. Direction seemed to be especially hard for me to grasp. By the end of the year in Junior High I was still having problems making my way to my classes and still could not grasp which hands on the clock were for hours and which were for minutes, looking at a map could bring me to tears because I would become so confused.
I had my first kidney infection in the fifth grade and by young adulthood I was diagnosed with interstitial cystitis. During my twenties it was not uncommon for me to have a UTI monthly.
I felt good for the first time in years when I got married and became pregnant with my first child. The day he was delivered I developed Toxemia. The labor and delivery was complicated and long. The day after my son was born a fatigue like I have never known came over me and never seemed to leave. I had a lot of trouble recovering from his birth. I had to be re hospitalized three weeks after delivery to have a blood patch because my spine was still leaking spinal fluid.
I went on to have two more children, and their births were less complicated. During those years I had periods of time where I was dead tired and felt like I had the flu. Doing the smallest chore was very difficult. I had to really push myself very hard to function because I had small children and I wanted to be a good mother, but I was miserable sometimes physically. There would be short periods when I would feel energetic. and it was during those times I tried to accomplish all of the things I was unable to do during the periods when I felt sick. Eventually, I would over do and end up at rock bottom again.
By my thirties I was having fewer and fewer good days, until one day there were no more good days and even getting up and getting a shower was impossible without a shower chair. I could not stand for longer than three or four minutes without nearly passing out and every time I stood up too fast everything would go black. I often got unexplained rashes and ended up taking prednisone before they would heal. I was very susceptible to pneumonia, sinus infections, eye infections and other illnesses. I often battled with depression and had symptoms of irritable bowel syndrome.
I went to many, many doctors hoping to find someone who could tell me how to get better. I even went to psychiatrist and tried psychiatric drugs after the medical doctors had given up. Nothing ever helped. I kept feeling worse and worse. Then I began to have cognitive and memory dysfunction. I also started to have a problem tolerating cold.
Finally, I went to a doctor I had seen when I was in my twenties. To this day, I do not know why I chose him. But it was the best thing that could have ever happened to me. He told me that he thought my symptoms were consistent with ACM. He referred me to a local neurosurgeon who specialized in a controversial surgery that was getting a lot of attention at the time. The surgery, which involved removing part of the skull in order to decompress the spinal cord, was getting attention because it was literally curing people from a host of symptoms- many of which were identical to those of fibromyalgia.
I researched on the internet and learned about the risks and spoke with people who had the surgery. In the end I decided that my quality of life was so poor that I would rather die than continue to live the way that I was. So I took the risk and had the surgery.
It was very scary. I knew about people who had to be on feeding tubes after the surgery. I knew that one man had died having the very same surgery with the same surgeon I had chosen. But my need to get better and really start living life overshadowed all of the fear. I prayed about it and had a peace in my heart by the time I entered the hospital for the surgery.
When I woke up from the surgery, I had a sensation of suffocation. I have heard of other people who experienced that as well. My care givers thought I was disoriented when I tried to sit up so that I could breath and they repeatedly made me lay my head back down instead of raising the head of my bed. ( I told them later what was going on so that they would raise the head of the bed with their next patient). I became afraid that I might die and asked for the chaplain. He prayed with me and I felt more peaceful but still had concerns about my breathing.
Once I was wheeled to my room, my nurse came right in and reassured me. She was absolutely wonderful to me and I will never forget what she said to me as my bed was being pushed into the room. She said, ”You’ve been through a lot but your gonna be okay, just rest in Jesus’ hands now.” Those words spoke such peace to me and I knew it was going to be okay. I knew my nurse loved the Lord and cared about me. I knew I had someone who would take good care of me and who was praying for me while she was caring for me. Her name was Rose, the best nurse I have ever known.
That day and the next I was very nauseous and could not open my eyes without vomiting. I was prepared for that because my surgeon warned me that the nausea would be bad. By the second day the drainage tube on the side of my head was removed as well as the catheter to my bladder and PT had visited me and helped me walk to the nurses station and back. That first walk was so so hard. My Nastagmus was out of whack or something and I was seeing everything move. I was very dizzy and all sounds seemed to be louder than normal. I have to say that my caregivers stayed right on top of my pain and I had very little pain at all (I had a pump the first two days, then I got pain meds IM or IV I think).
By the third day I was initiating walking the halls myself. My nausea had resolved and I could feel a wellness inside that I had never felt before, the fatigue was gone completely. I think I went home on day four or five. I was given a prescription for steroids and pain meds but I found out quickly that I could not tolerate the steroids (they made me vomit every time I took one).
Anyway by the third week I went back to my PRN job working as a CNA maybe once a week for 8 hours. I had the surgery on Feb. 14 and by May I had a summer job which was full time. Every single symptom I had pre surgery (except the Nystagmus) was gone. My Nystagmus slowed dramatically and it is now less noticeable than before. I passed the tilt table test, which I had failed miserable before surgery.
I went back to college and for the first time in my life was making straight A’s! I felt great for two years. Then I began to notice memory loss and cognition problems. Next I began to have pain and sleep problems again. Then the fatigue floored me and I had to quit college, giving up two scholarships and a Pell grant. I had just been accepted to a four year college into a teaching program and then I became very sick again.
I went back to my surgeon. We got new MRI’s and a new tilt table test. I failed the tilt table test but the MRI of the area where I had surgery looked good. So the surgeon did more Xrays and MRI’s. He told me that an area lower in my neck looked compressed and he could do a surgery to decompress that area and my symptoms would likely improve. He put me in a neck brace to prove this theory and yes my symptoms did get better. But now I had this huge decision to make, continue to suffer, wear the neck brace every day, have the surgery, or look for another way to help myself. I choose to look for another way, partly because this surgeon is not a part of my insurance group and therefore I would have to pay 100%, and partly because I didn’t want to go through it again. I have talked to a lot of people who have had second and third surgeries for this and most of them say they didn’t get as good of a result the second time, some even got worse-much worse. So now I am going to Dr. Flechas who specializes in Fibromyalgia and is involved with research. I am involved in a study using Iodral and ATP Cofactor to reduce the symptoms of fibromyalgia. So far I am impressed with the results. You can keep up with my results by clicking on my daily journal.
If you’re trying to decide whether or not to have the surgery seek God diligently in prayer about it. Some people get miraculous results, some do not. There is no predictor of who will get better and who will not. If you do decide to have the surgery, go into it with a positive attitude. Believe that it will give you a better quality of life. Attitude can have a huge influence on whether or not you recover quickly and how you progress into wellness. Do not have this surgery if you are filled with uncertainty and doubts, I can almost promise you that your results will not be good if you don’t walk into this with faith and trust and hope.
Some people ask if I am sorry or glad I had the surgery. I will tell you today, several years postop, that I am grateful for the surgery because it gave me two wonderful pain free fatigue free years to enjoy my life and my family and the appearance of my nystagmus is improved. Yes I became sick again. But it was so worth it to me to have all that time to function normally and really live. And I am optimistic that we are about to have one of the biggest breakthroughs in fibromyalgia treatment in the history of this illness.
So hang in there. Even though there are some doctors who scoff at your diagnosis there are many others who are working diligently to find a cure or a treatment so that we can have hope for our futures. I have personally met doctors who care deeply about this issue and really want to see you get better. Three doctors that I highly recommend are: Dr. Jorge Flechas in Hendersonville, NC Dr. John Winfield in Boone, NC., and Dr. Steven L. Mendelsohn in Asheville, NC. I would be glad to share their information with you, just e-mail me.
