Even More Success Stories from Chiari Patients

Page 5 Success Stories

If you have a Chiari success story that you'd like to share, just CLICK HERE and send it in !

Karen McAdory
I just had Chiari surgery 4 weeks ago. My headaches started at age 25. I am 40 years old now. My headaches got worse after my 2 children were born. Amazingly, I am an ER nurse for 17 years and had never heard of ACM, when after begging my MD to do a MRI, I was diagnosed with this strange defect.… I was so happy I had a diagnosis and there was a surgery that could possibly help me. I already new the best Neurosurgeon in my state of Alabama. He was 60 miles away. His name is Dr. Evan Zieger (205-250-6805) if someone needs a name of a great Neurosurgeon. I was in surgery 3 hours. I was in ICU 4 days due to heart problems. I was home for a week and developed a spinal leak and had to go back in hospital for 13 days. This doctor made a graft during my surgery using my own platelets instead of anything artificial and there is a risk of developing a spinal leak. I feel so much better I'll deal with any leak of any kind. I don't know how I will feel in 3 months or 6 months, but I cannot worry about that today. I have read the other stories on Chip's web site and I just wanted to add mine because it is a success story. I was diagnosed, treated, and felt 90% better in exactly one month. Who can ask for anything more. I pray to anyone reading this who is still living with ACM that you find the right MD (try mine) and you keep fighting until you get the help you deserve. God puts these wonderful people on his earth to help you. Thank you,
Karen McAdory

Rob Ruff

My name is Rob and I was diagnosed with Chiari in January 2003. The first symptom I am aware that I had was double vision which started sometime during 1995. The incompetent doctor I had at the time said that people's eyes wear out in different ways and he sent me to an ophthalmologist for a pair of glasses. Over the years many symptoms popped up and I pretty much ignored them and chalked it up to getting old or something. Some of the symptoms were ( I can never remember them all ) severe headaches when coughing or sneezing, difficulty swallowing, double vision, nystagmus, loss of balance, difficulty reading small print, back pain, and a loss of sensation in my left foot. My muscles were also rigid and would not relax. I race bicycles and over the years got to the point where I couldn't even keep up on training rides. It was painful just getting off the bike after a ride.

I finally went to the doctor in 2002 when I my foot went numb on a treadmill. I then went through a year of treatments on my back since the problem with the foot MUST have been linked to the lower back pain. Eventually it became obvious that my spine was not the problem. The following year my GP sent me to a neurosurgeon - Dr. Worthington in Charleston, SC. That was an eye opener. I failed every test he threw at me. He asked me to close my eyes and touch my nose. I touched my chest with one finger and over compensated and touched my forehead with the other. He scheduled an MRI and I had a 20mm herniation with a syrinx. A month later I had the decompression surgery with a lamenectomy of c1 and c2. I was in the hospital for 10 days and had a pretty long recovery time.

It has been over 2 years since my surgery and everything is pretty much back to normal - that is, like it was back in the early 1990's. I am racing bicycles again and won the bronze for category 3 in the state criterium last year - my first top 10 in over 5 years. I have not had a single headache since. The lower back pain also went away since it was due the the fact that my muscles were strung up so tight. The only lingering symptoms are the double vision, the nystagmus, and the loss of sensation in my left foot although they are all better than prior to the surgery. I feel the surgery was a complete success and if I had to go back I would do it again.

From j0930@aol.com :
My symptoms started to really show up a little over a year ago. I liked to play a lot of sports, but twice I got dizzy and fell down playing hockey and basketball. At the time, I just chalked it up to being out of shape. But then, I was playing pick-up softball and had trouble catching a little fly ball; the ball looked like it was bouncing up and down.

So, with a little coaxing from my wife Colleen, I finally went to my family doctor, who noticed that my right eye showed a lateral nystagmus. He referred me to a neurologist. The early diagnosis was that I probably had MS, which scared me quite a bit. However, the MRI films showed no signs of scarring in the brain, so my films were sent to two neuro-surgeons at Mass General
Hospital. Both noticed the Arnold-Chiari malformation immediately, and both recommended having it treated in the not-too-distant future.

This was not an easy decision, as my wife was pregnant with our third son at the time, and our other two adopted sons were less than two years old as well. Nevertheless, after much prayer and talking, we decided to go through with the surgery shortly after Christmas, and I was admitted on January 5th, 1999. My surgery was performed by Dr. Ojemann at Mass General and took a little over 5 hours; it went so well that I didn't even have to go to ICU.

It has been a little over four weeks now, and already there is noticeable improvement--several things have cleared up. For a year and a half before the surgery, I had a mysterious chronic cough; now that is completely gone. My nystagmus is almost gone, and my reflexes are much better. The pressure in my head is gone. Also, I can smell things which I couldn't smell before, including poopy diapers, which isn't necessarily a good thing!

In any case, this has been a challenging, but wonderful experience. I am very glad that I had the surgery and am very grateful to the doctors who helped me. Now I can play basketball and hockey again and look forward to being much more active with my three little guys. I would love to answer any questions that you may have about this operation. My e:mail address is j0930@aol.com.