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

Amy writes:
My symptoms started when I was in High School. I was always clumsy and had major headaches. I was passed off as having migrains and put on Midrin. When nothing helped I finally went to see a neurologist. She took my pain seriously and did an MRI. She found my Chiari malformation and sent me to Palm Springs California to see Doctor Dureza. He wanted to do surgery, but the surgery consisted of the removal of my tonsils. I got a second opinon.  After much consideration and talking with my family I decided to go with Dr Dureza. He did the surgery on may 28th 2002. I spent 5 days in the hospital and 2 months to fully recuperate. That included Physical Therapy for more neck movement. Since that I have been symptom free and done so many things that I could never do. I can hop on one foot and walk in a straight line. I have even increased my vocal range for singing. I am living the best life and feel 1000 times better than I have ever felt. Please feel free to contact me.famousamous21@hotmail.com

WJ Stallings writes: I was in my senior year in high school. I ran 2 1/2 miles the second day of school and both of my knees swelled up. I went to the doctor and he sent me for an MRI. The MRI determined that I had something called a Chiari I malformation. I was devestated when they told me I would have surgery. The most horrifying thing was the fact that noone would tell me whether I would live or die, walk again, or even be able to function at normal capacity. I had always been an active person, who enjoyed the outdoors and especially sports. I had had some symptoms over the years, which had always been diagnosed as minor scoliosis.
My surgery was performed by Dr. Stephen Stranges in Asheville NC. The procedure took 10 hours to perform and included fusing C2 and C3 as well as inserting a shunt. I remember waking up in intensive care following the surgery. I had been worried about lost mental capacity. I remember thinking to myself 10 X 10= 100 and a few other problems, and I knew I was OK. I was in intensive care for a day and the hospital a week. In that time I had to work to regain much that I lost over the last couple of years. I had developed a limp, which subsided for a while, but came back, though not as bad as before. I was really weak, I couldn't even make it to the basket in basketball. But that returned quickly, as did a lot of strength that Chiari had robbed me of. I was able to run again.
My point of this story is, since I am not good at talking about myself, that whatever you have lost, it can be regained. As long as you have your life and your loves, then you will be OK. Chiari can be debilitating, but with surgery and proper rehab, you will be as good as new again. It will give you your life again. So have the surgery if an option is given. There is no pain. The only pain I endured, was my mom shutting the car door on my hand on the way home from the hospital, but that is another story. I am happy to counsel anyone who needs someone to talk to about it. I can answer any question, and will do so in a straight forward manner. Please feel free to contact me at SIGNU1@aol.com. If you want to talk to me in person, just ask and I will provide my number for you to call.
 Sincerely,
   WJ Stallings

Rhonda Witman tells us: My son David started out by having problems with his right foot just before his 15th birthday. At first I thought maybe he had injured it on his bike. Another week went by and no improvement. I took him to the family doctor who noticed he had foot drop, and had lost the arch in one foot.He ordered a cat scan, and when that didn't tell him anything he ordered a nerve conduction test.(not very pleasant). It showed some type of nerve problem above the knee. At this point we went on to a nuerologist who ordered cat scan and MRI of midsection. Still didn't tell us anything concrete. Next he ordered MRI of neck and spine, but after looking at films of neck decided to do brain scan. Through all of this I was getting incresing concerned, and his leg was getting worse.
Finally, the doctor told us the diagnosis, Arnold Chiari type 1 with a syrinx that appeared to run the entire length of the spine. Next he sent us to a nuerosurgeon . That doctor had only dne the procedure a few times, and due to the extremely large syrinx, decided to send us to Dr. Alan Cohen at Rainbow Children's Hospital in Cleveland. Dr. Cohen was great. He answered all of our questions, and we put our trust in him. He had done many of these surgeries. Surgery went pretty much as expected. He did decompression on back of skull and put in a shunt to drain the syrinx.
Within a few hours after surgery David started showing dramatic improvement. I was ecstatic. In the days to follow even more improvement was evident. By the time he was to be discharged, he was walking great. He stayed out of school (with a home tutor) for 6 weeks until his follow-up appointment. Dr. Cohen was very pleased that all of his symptoms were gone. David has since gotten back to BMX racing and life is pretty much back to normal. I don't know what is in the future concerning this disease, but I remain optimistic and keep up on information . I must say, that the information found through the internet was virtually the only information I could find anywhere.
One financial note, in Ohio we have Bureau for Children with Medical Handicaps. They can be contacted through you health department. This program helps to pay what is not covered by insurance or if you have no insurance. Your state may have something similar. Don't assume you don't qualify. But be sure to apply right away, so you don't lose out.This surgery is not cheap. If you would like to email me, my address is rkwhit@wilkshire.com.

Mandy writes: My name is Mandy and I am 23 years old. I was diagnosed with the Chiari I Malformation in March of 1996. My condition was diagnosed through the MRI Scan, the day I got the results, I had the hardest decision of my life to make. Do I undergo what appeared to me as a "life-threatening" surgery or deal with the terrible agony of the headaches with the possibilty of my conditioning worsening? After careful consultations and discussions with my surgeon and family, I decided to forego the operation.
On the morning of April 23,1996 I arrived at the hospital and went directly to my room to be prepared for what was a long road ahead of me. The nurse entered the room and began to run IV lines as my mom stood by my side holding my hand. Before i knew it, the nurse said it was time to go to pre-op where they would give me some medicine to make me drowsy. I remember to this day that face that came to take me to the pre-op room and her name was Dianna. She had the warmest and most comforting smile, and soon became a friend. The doctor allowed my mom to come into the pre-op room where we shared a few moments together as we both cried. The nurse gave me some medicine and I quickly got very groggy. Then it was time, time to say goodbye to my mom..my best friend. The last thing I remember from there is being wheeled into the OR and lying face down on that table in that extremely cold and scary room.
It has now been 7 and a half hours since I last saw my mom. I was now in the recovery room and remember not being able to lift my head because it felt heavy and I was very stiff. I also remember getting sick because of the morphine they gave me. All I wanted was to see my family. I remember talking with the nurse and laughing because she said I had the biggest family she has ever seen...there were 15 people in the surgical waiting room just for me. Finally the time came I recovered enough to see my family. From this point, I went to the surgical intensive care unit where all I did was sleep.
On my 3rd day there, I noticed the back of my neck was wet only to find that I was leaking spinal fluid. My surgeon told me that I somehow had torn the incision open and he would have to take me back to the operating room to repair it. All I could think was here we go again and it was that point that I didn't think I would make it through this. Well, 4 days later I was discharged to come home and only had the road of recovery ahead of me.
Today, now 2 years later, the headaches and pain have subsided and I am now expecting my first child in October. I wish to take this time to thank the gentleman who did my surgery, DR. Jeffrey Yablon in Guthriesville, PA for the continued care and concern. I also wish to thank everyone at the Brandywine Hospital in Coatesville, Pa for their part in my surgery and recovery. Thank you all,  Mandy

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