From Denise Benitez -
Thank you so much for this opportunity to share my story. I began to develop weird symptoms, which I now know were Chiari related, in early 2001 at age 48. The first symptom was terrible headaches at the base of my skull when I would cough, laugh, or sneeze. Then I began to have unsteady balance, dizziness, horrible almost constant nausea, numbness and tingling in my lips, profound fatigue, gagging, and great difficulty swallowing. I'm a yoga teacher in Seattle, and I'm very connected to my body. I've always been able to find a way to be physical and help myself through other injuries, such as shoulder injuries, herniated disc, etc. But when doing yoga made my headaches and nausea worse, I knew something was really wrong. My whole physical self felt really "off." Like many of you, I consulted with many doctors and went through the usual mill to get a diagnosis--I was treated for sinus infection, muscle tightness, exertion migraines, depression, anxiety, etc. I tried 12 weeks of antibiotics, acupuncture, craniosacral therapy, massage, nasal sprays, physical therapy, migraine medication, antidepressants, muscle relaxers, electronic muscle stimulators. NOTHING had an impact on my symptoms. 

I went to see a neurologist and learned that some neurologists read the MRI itself and others just read the MRI report from the radiologist. Make sure you find a neurologist who actually looks at your MRI! I wasted about 3 months working with a neurologist who only read the report, where the radiologist stated, "Low-lying tonsil without frank Chiari malformation noted. Examination is otherwise unremarkable." WRONG! When I got a second MRI five months later, and looked at it together with another neurologist, she said, "You've got a classic Chiari I Malformation, and it isn't a small one. Your cerebellum is herniated down to C2." Yet, she still didn't recommend surgery! She wanted to try and "manage" my symptoms with drugs. The drugs made me feel a whole lot worse. Finally I took my MRI around to four different neurosurgeons. Three of them said the surgery would probably help me. I also was doing a lot of research on-line and I KNEW that the Chiari was causing my discomfort. Chip's website was especially helpful, because it was so positive. I had surgery on April 22, 2002 with Dr. Jacob Young at Swedish Hospital in Seattle. Dr. Young did a suboccipital craniectomy, a full laminectomy on C1 and partial on C2, and a dural graft. 

I wasn't afraid before the surgery, because my instincts told me strongly that it was going to help me, and I trusted Dr. Young completely. I am very lucky, because I woke up from the surgery symptom free and I've had a rapid and smooth recovery. I spent about a week on pain medication, although the pain was never excruciating. Now, almost 8 weeks later, I'm feeling fantastic. ALL my symptoms are gone! I'm doing a full yoga practice, walking my dogs, working in my garden. I can move my neck freely, as if I never had the surgery. I truly feel like I've been reborn, and realize that I've been subtly ill from the Chiari for a long time. The most important things I can say to someone facing this situation: Don't give up! Keep finding doctors who will work with you. Keep filling your mind with positive stories, not horror stories. Keep doing your own research. Realize that Chiari is rare, and you will probably learn more about it than your doctors. One neurosurgeon frankly told me, "I'm sure you know more about Chiari than I do." That's okay, I just need for him to know how to do the surgery! I have so much gratitude to modern medicine and to Dr. Young, because without this surgery, I would have had a wasting illness for the rest of my life. Now I'm proud to be a zipperhead and I'm thinking about getting a lotus tattoo at the base of my scar! Blessings to all of you and may you find relief from your symptoms! Feel free to email me if I can help in any way, especially if you live in the Northwest! 

Denise Benitez Seattle, Washington

My aunt, a nurse practitioner who had many friends in the medical field had her friend who is a nurse practitioner in the neurosurgery department of children's hospital Cincinnati have one of the neurosurgeons look at the MRI. We then recieved a call from Cincinnati children's neurosurgery department that Dr. Crone wanted to see me. I went in a week later and was told when we asked our options were surgery, surgery, or surgery- a posterior fossa decompression. 6 weeks later on May 14, 2002 at 6:00am I was back at Children's Hospital for surgery that was scheduled for 7:30. I was so scared that I had my scapular on (which I rarely ever wear). I woke 2 1/2 hours later in the ICU and left less than 24 hours later!! I was in short stay/ neurosurgery unit for 4 more days and went home. 5 days later I was back at the hospital in the ER with meningititis and a staph infection and admitted for another 6 days then released to home care nurses for a month. My symptoms slowly began to subside I still have nights where I don't sleep well but that is not every night. When, I went back for a post-op MRI and checkup by the Neurosurgeon and found out I was his most successful case yet!!!!

Lynn Tayor wote:

I was diagnosed with ACM in 1998 after my sister was finally diagnosed with ACM! We'll start there....

My sister was a school bus driver and had been in an accident where her school bus was rear-ended. She went through YEARS of feeling sick, vertigo, stiff neck, tingle-fingers/toes, blackouts etc. before FINALLY being diagnosed with ACM. She called me and told me what ACM was and what the symptoms and recommended treatments were. OHMYGOSH! I felt like a hypochondriac with a revelation! I called my doctor and relayed all of this information and was scheduled for an MRI. Well, long-story-short, I have had a Suboccipital Cervical Laminectomy and IMMEDIATELY felt the changes! I could actually now feel my hands and feet, headaches were mild and pretty much non-existent. Vertigo still happens, but not with regularity and not as severely. My sister has opted-out of surgery and is doing well, however, it has taken her a long time of working with life-changes and she still has a lot of symptoms with stress.

Would I do it (surgery) again? In a heartbeat!

Lynn Taylor

 If you have a Chiari success story (or you ARE a Chiari Success story), please CLICK HERE and send it in.