Many of us have to “fight” for a proper diagnosis and treatment. Sadly, many doctors lack sufficient knowledge about Chiari, so we’re either mis-diagnosed or our Chiari diagnosis is written off as an “incidental finding.” I want to share my struggle to find and see an experienced Neurosurgeon, in hopes that it will help others here. So…Here it goes:
I have been in constant pain, along with many other symptoms, since I was rearended on 7/3/07. I was finally diagnosed with Chiari and Syringomyelia (syrinx/cyst in spinal cord) in October 2010. The NS that diagnosed me said that it was not the reason for my back, neck, shoulder, and head pain. He said he wanted to re-evaluate in a couple years and if it started to cause problems, he would do a shunt. Over the next year, I got progressively worse. So…I started doing my own research. I soon saw that I was in fact suffering from symptoms of Chiari and Syringomyelia and that my NS’s recommended course of treatment didn’t make sense for my situation. So, I researched and found that a well respected Chiari specialist was just up in Seattle, which is within driving distance. I had new found hope and I was excited to ask my doctor for a referral. I asked my primary care doctor and he said no. He said that I needed to get a referral from the NS that I had seen previously. So, I asked that Neurosurgeon’s office for a referral and they said no. They said that I was insulting their doctor and that by me requesting a referral, I was telling them how to do their jobs. Huh?! I explained my right to have a 2nd opinion, but ultimately they never returned my calls or gave me the requested referral. So, I went back to my primary care doctor and he said no again. He said that my case wasn’t surgical and it wasn’t
that bad. I have to admit that I felt defeated at this point. Maybe, all these doctors were right and it was all in my head. I gave up trying to get the referral for a few weeks. Finally, I went to my Chiropractor for advice. He had already told me that he couldn’t fix me, but that he would do anything he could to help me. He was the only one that had ever listened to me and had taken my pain seriously. He said he would give me the referral to see Dr. Ellenbogen. Yay! I was finally going to be able to see a specialist:) I just saw Dr. Ellenbogen on April 30th and it was a completely different experience. He was kind, compassinate, and very knowledgable about Chiari:) He said that my herniation and syrinx were definitely causing many problems. He also said my case was pretty urgent and I was at risk for paralysis. I am scheduled for Decompression surgery on June 28th. I am so glad that I am now in his hands:) I am so glad that I continued to fight for myself! Who knows how bad things would have to have gotten before someone finally listed to me. I’m sorry this is so long:( I just want to encourage everyone here who is not being taken seriously to continue fighting for a proper diagnosis and/or treatment. I hope this helps someone:)