We would like to thank Jennifer Espericueta for sharing her story with us:
My Chiari Story
34 year old female, stay at home mom, former high school teacher
After regular visits to a chiropractor for 2 years for neck pain after the birth of my 2 children I finally visited a pain specialist. That was when I was diagnosed with Chiari Malformation in June 2010. I was shocked; this was something I had never heard of. The pain specialist gave me information from the internet and referred me on to a neurosurgeon in his practice telling me I needed surgery. The neurosurgeon told me that the malformation was not blocking my spinal fluid and that it was not causing my pain. He said that it would never get worse and that I never needed to follow up in it again. He also informed me that I could “be in the circus” because of my neck range of motion. So he definitely was not concerned or sympathetic to my pain.
Desperate to get pain relief I asked to be referred to a physical therapist, which gave me no relief. I decided to follow up with another neurosurgeon a couple of months later. He told me I “technically” had a Chiari malformation, that it could get worse and that I needed to follow up with regular MRI’s. He also told me to do exercises to strengthen my neck and prevent further deterioration. He referred me to a GP since he felt I should have been referred to him by one instead of “referring” myself. He also told me that surgery on me would be a nightmare, “like operating on a giraffe.” I made the appointment with the GP; he could find no answers for my neck pain and told me to try acupuncture, which helped short term. For the next month I worked hard to get into great shape, still dealing with the neck pain. Then things really began going downhill. I found I could do less and less. The pain was very fatiguing. I began getting very lightheaded and would have what I felt were severe vision issues after straining (lifting weights) when working out. I went back to my GP who told me everything was fine that there were many people walking around with Chiari Malformations who did not even know it and that this was not causing my problems. Things proceeded to get worse I would often get nauseated when I was on my feet too long, my ears would pop and ring and feel and if fluid was draining from them, I would have pressure and burning sensation on the right side of the back of my skull, pressure behind my right eye, vision floaters. Finally after I was in Wal-Mart with my 2 small children and almost passed out I met with my neurosurgeon again after getting another MRI a year later. I told him how much worse my symptoms were. This time, he offered surgery. I was nervous making the decision and wanted to make sure I made the right one. I was concerned that the same doctor that was so against surgery for me a year ago now believed it would solve all my problems. I had researched and read were some people regretted having surgery and I wanted to make sure my symptoms where caused by Chiari. I wanted to see the MRI, had things gotten worse? Reading the new MRI also done at Austin Radiology where I had gone the previous year, according to the radiologist I no longer had a Chiari Malformation, I had no significant findings. Really? I contacted Austin Radiology asking them to reread my MRI. How could my malformation have spontaneously corrected itself? I was refused and told my neurosurgeon had to request it. When I requested this of him he told me he should not have to tell them to do their job. Which I agreed, but this still was not helping me to make an informed decision about having brain surgery! Only after pleading with Austin Radiology that these findings were helping me to make a determination whether or not to have brain surgery they reluctantly agreed. In the new reading it simply stated “no significant change”. After further research I found that a high percentage of people with Chiari Malformations also had Syringomyelia (cysts on the spinal cord). Having pain and numbness going from my neck into my right arm and now my right hip going into my right leg, I called my neurosurgeon to request an MRI of my spine. I wanted to know everything going on only planning to have surgery once. I was refused and told I had to have a referral from someone else. Having scheduled surgery I canceled not comfortable as I was told I could die, be paralyzed, have a stroke, or be a vegetable as the neurosurgeon checked his cell phone. Scared to death my husband and I decided that these were not risks that we were willing to take with 2 small children. Frustrated I made an Appointment with Dr. Heffez at the Chiari Center in Wisconsin. What a difference. They were so thorough. I had 3 people assisting in my MRI’s with contrast of my lumbar, cervical spine, and brain. Although the staff worked hard to convince my insurance company I needed an MRI with contrast of my brain my insurance company would not approve the contrast. Three different times when I was there staff members assisting with the MRI asked “you were scheduled for surgery and you have never had an MRI of your brain?” I had never had an MRI of my brain, only my cervical spine. I had thorough neurological testing and met with the Neurosurgeon, Dr.Heffez and a neurologist. I was told that it was my decision whether or not to have the surgery and that I had classic Chiari symptoms. I did however feel much more comfortable learning that the surgery was relatively safe and that I had a healthy spine. Once I came home to Round Rock TX after more research I found another Neurosurgeon in Austin with Chiari experience, so I met with one more Neurosurgeon, Dr.Stovall. This is the surgeon I chose for my surgery. He took his time and explained the procedure beautifully. He looked me in the eye and did not insult me. He had the experience I was looking for as well as being a compassionate human being. I finally felt at ease with my decision to have the surgery. I had my surgery on November 17, 2011. My surgery expected to take 4 hours ended up taking 5 and 30 minutes. The descendsion of my cerebellum into my spinal area was more severe than showed on the MRI and part of my vertebrae also had to be removed. I had some nonlife threatening complications after surgery which made things a little rough mostly due to bleeding on the brain from spinal fluid loss during surgery. However Dr.Stovall’s follow up was excellent and I was well taken care of. Although the first month after surgery was rough I am now so grateful to Dr.Stovall and his staff. Although I am still having right sided pain I am in seeing a well experienced physical therapist to help me. I would also highly recommend him, Mike Tillman at Tillman Physical Therapy. I no longer feel as if I will pass out, I do not have the severe pressure in my head, ear popping is gone, and my vision is much improved. I finally feel safe doing simple things like driving my children. Since it has only been 8 weeks since my surgery I am hopeful that more improvement is to come!