June 2001

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 Hi! My name is Vicki. I am 50 years old, married to the absolute *best* husband in the world, and have just had brain/skull/spine surgery. I am a born-again Christian, and had been very active in church since I was a child. I sang in church choirs, ensembles, quartets, trios, duets and solos, played folk and classical guitar and played in three handbell choirs. I was also ready to perform handbell solos, when an illness I had been dealing with for many years suddenly became much worse. I also love horses dearly, and loved caring for them as much as I loved riding them. I started riding neighbors’ horses at age 3, and by the time I was 13, I had been given full responsibility of taking care of a neighbor’s horse when he entered the military. I was hungrily learning everything I could about horses and their care. When my neighbor finished his time in the Navy, he told me to continue to treat Rusty as if he were mine, as he would only want to ride a few times a year. I cared for Rusty until advanced cancer necessitated his being put down, after I had finished college. I have never been without at least one horse since then. Over the years, I have worked at many stables in several states to pay for board and lessons, managed barns, been a broodmare manager, taught riding, shown hunters, trained horses, etc, and fully enjoyed it all. One thing I always wanted was my own boarding stable, and in 1995, we saw my dream become reality. We bought a small horse farm, with a very nice 10-stall barn, and immediately started boarding horses. I never had to advertise or try in any way to get boarders, as my vet referred people to me, telling them my barn was the only place he would consider putting his own horses if he needed to board them.

Unfortunately, as I happily did the routine things associated with caring for horses, I started having strange injuries and debilitating pain, and my energy level kept decreasing. 3-1/2 years after opening my barn, I had to close it, as the pain and lack of energy had gotten to be too much. I was still caring for my own horse, but not riding anymore. Then, a month later, just before Thanksgiving, 1998, I developed an unbelievable cough that just would not go away. It was the worst cough I’ve ever had or even heard anyone else have, deep and racking. Even my doctor and his staff were astounded by it. I was just able to finish my responsibilities in our church’s singing Christmas tree presentation, but have been unable to attend church or go anywhere else since then, except for trips to doctors and hospitals.. As the cough continued over the next 7 months or so, I grew dramatically weaker and felt progressively more ill. After years of tests and various specialists, I ‘gave up’, in the sense that I didn’t want to have any more tests or see any more doctors. It was too hard to get my hopes up time after time, then have them dashed when the doctors couldn’t figure out a reason for my problems. Then March of last year, I saw a segment on 20/20 about breakthrough surgery for some patients who have been diagnosed with Fibromyalgia or Chronic Fatigue Syndrome. As my husband and I watched the segment, I KNEW this was the answer that had for so long eluded all the doctors. I got on the Internet and researched, finding lists of symptoms that read like a litany of my problems. I was even more sure, if that’s possible. I talked with my GP, and after reading over what I’d found, he agreed it sounded exactly right. Very long story made a bit shorter, after being on the neurosurgeon’s waiting list for a year, he got down to my name. Sure enough, the tests he had done showed chiari malformation, hypoplastic posterior fossa, and cervical spinal stenosis. I had surgery for it on April 11, 2001, and will be recovering from the surgery for 12 to 18 months (yes, that DOES say ‘months’!). The surgery involved permanently removing a fair amount of my skull around the hole where the brain stem exits it, removing the back of my C1-C2 vertebrae, opening the dura and patching it with a section of a cows pericardium, and removing two small segments of brain tissue (cerebellar tonsils). All this was done to relieve pressure on my brain stem and spinal cord which had been caused by the ‘skull hole’ being to small, constricting and deforming my brain stem. The improvement is already dramatic, but I definitely have a long way and a long time to go. I am ecstatic that God showed me the segment on 20/20, and that His hand was on the surgeon, nurses, me, etc, to bring about hope for a future. I am still very limited in what I can do, for instance, for the next 6 months, I can’t lift more than 10 to 15 pounds, and I will go through really good and really bad times for the next 1 to 1-1/2 years, according to the neurosurgeon. However, the changes I’ve already seen are so wonderful, I haven’t regretted having the surgery for even one second. I am so much looking forward to getting back in church, singing, playing handbells and classical guitar, working with my horse, even driving again and going to WalMart will be a delight! I’ve not driven in 3 years due to the severe decrease in concentration and cognitive function I had pre-surgery. Where I had been unable to concentrate enough to read, I have read 12 books in the last 4 to 5 weeks. What a joy!

I am so grateful to be considered for the ShareaCard feature, as I still have days when the extreme fatigue is overwhelming, and getting a card on a day like that would be a wonderful breath of fresh air.