I have not been doing well the past few days. My pain has been bad, and I haven’t been sleeping. My Chiari friend Jen Babcock has been kind enough to share her story with us!
I was born and raised a farm girl and a tomboy. I have always been physically active, played sports, loved life and lived it to the fullest. I have never been one to speak up for myself or want to tell my story until now.
My journey with Chiari began back in 2001, working as a rehabilitation assistant on a weekend day helping out the physical therapist on duty. We were working with an elderly patient who had gait (walking) difficulties. As we were walking the patient along the parallel bars, she lost her balance and the therapist and I went to catch her and in the process I injured my neck.
I went through physical therapy myself, injections in my neck, pain medication, depression medications (because they said I was depressed and not in pain), multiple evaluations with multiple doctors and then finally, an MRI was ordered. The results were that I had Chiari I Malformation. My family doctor referred me to the University of Wisconsin, Madison, where I saw Dr. Iskandar. He is a neurosurgeon at UW who had supposedly specialized in Chiari.
It was suggested by Dr. Iskandar that I have decompression surgery. Obviously, if my neurosurgeon is suggesting this, I am going to believe that this is what I am supposed to do. I was released after four days in the hospital only to have to go back two days later with aseptic meningitis. I spent another four days in the hospital. After two follow-ups with Dr. Iskandar, another MRI, an EEG, physical therapy, chiropractics, more medication, and a year of time, I still wasn’t completely normal, but was told that this is my new normal.
I learned to accept the daily neck pain, limited function, numbness and tingling down my arms and legs, etc, and tried to move on with my life best I could. I couldn’t work as much as I used to, but I had to work, I had two small children to raise on my own. I had a full-time job and a college education to finish, so I didn’t use pain medication. I just took over-the-counter medication.
With determination and a go-get‘em attitude, I was successful. I did return to Dr. Iskandar for follow-up at the five and seven year mark. (The seven year follow up was actually with my son, who had been diagnosed with Chiari I malformation as well.) I was told that everything looked fine and that I must still be depressed. I needed to go see my family doctor to start on antidepressants again.
I went on with my life having daily, chronic pain, but I still had to do what I needed to do to survive. I continued to have evaluations for my symptoms. I was told that I had nothing wrong with me. In the summer of 2012 there was an unfortunate accident where someone was thrown off of my boat onto the top of my head, and my symptoms were exacerbated severely by the injury.
I went for evaluations, started my therapy again, increased my over-the-counter medications, and had another MRI. The results showed that I had herniated discs at the C5 through C7 level. The doctor told me I needed to have fusion surgery. Since I was seeing a new neurosurgeon I believed they were the expert, and that I needed to go ahead with the fusion surgery to get relief of my symptoms.
After the surgery in November 2012, my symptoms were worse than before, and have been since. I have seen the neurosurgeon who did my fusion surgery, who told me that it may just take more time to heal. I saw a neurologist in Marshfield who told me there is nothing wrong with me and that it was depression and stress causing my symptoms. My primary care physician has told me that there was nothing that I could do other than the home therapies that I had been doing, and the over-the-counter medications.
With further research on my own into Chiari, and with the support groups on Facebook that I am a part of, I decided to look into the Wisconsin Chiari Center. As part of one of my follow-up examinations, I asked my primary care physician for a referral to this facility in Milwaukee. After my appointment with Dr. Heffez, two hours worth of MRIs, a BAER test, multiple laboratory tests, and neurological tests conducted by the physician, it was determined that my first Chiari surgeon had in adequately performed my surgery back in 2001. My Chiari was never fixed.
The was the answer I needed verifying that my feelings and discussions with all of these other doctors were correct. I had felt that it was my Chiari that was causing my symptoms, but was constantly told that it was not the case. Dr. Heffez informed me that I would need to have my decompression done again.He would have to go in and fix all of the things Dr. Iskandar did wrong.
I found out I also have Tethered Cord Syndrome. It is a condition that is common with Chiari patients. It is something that should have been discovered had the other doctors listened to me when I asked for a full spine MRI.
I will now be going in for another surgery on September 1st, 2015. Dr. Heffez will be redoing my graft, reopening the dura into the cerebrum to make more room as I have compromised cerebrospinal flow, and he is going to place a plate into the lower part of my skull because the first surgeon took out too much.
The reason I am telling my story is so that anyone and everyone who is reading this will listen to their bodies. If you feel as though you are being told something that you do not agree with, stand up for yourself! That is something I did not do enough. Only you know how you are feeling. Even though I did tell my doctors I was not feeling right, they made me feel like I was crazy even though they really had no clue what I was going through. They had no clue about what Chiari malformations truly is.
I have been suffering for 14 years. I am hoping and praying, as are my family, that this second surgery will help me so I can live a somewhat normal life. The last six months to a year has been extremely limited. I am no longer able to lift any weight or enjoy the things I used to because of the extreme amounts of pain I am in, the daily headaches, and the dizziness I feel all of the time.
I am hoping my story will help someone with our condition. Take care of yourself, and stand up for yourself. Use your voice. Don’t let one person’s word be the last word.
Thank you for taking the time to read my story and letting my voice be heard.
Thank you Jen for sharing your story with us. Every story shared helps us be better advocates.
Stay Positive dear readers!