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For me, being able to help others is important. I had spent fifteen years in the medical field, never having heard of sm, when I was diagnosed in July 2011, I had no idea what it was (or what it was doing / had already done)...
I had never cried so hard.
I had never been so scared.
Here is where it began for me...
We had just returned home from our honeymoon and everything seemed like it was perfect. I loved my job, I had just gotten married (after being a single mom for 13 years!), we had moved into our home and was working on making it our 'perfect' family home. We had been spending hours every night cleaning up the yard and creating flower beds...all of a sudden I began having chest pain on the left side and down my left arm. I ignored it at first. It lasted for a week before the symptoms were so severe that I couldn't use my left arm and I thought I was having a heart attack. I left work on July 11, 2011 and went to the minor emergency. I called my husband, Kevin, and he rushed right over. My heart was fine. Thank goodness!! But the symptoms persisted and an MRI was done. My doctor thought it could be a dislocated disc in my neck and sent me to a neurosurgeon.
I had no fear at this point. At least until the surgeon reviewed my MRI...
He said that I had a huge spinal tumor and that there wasn't a neurosurgeon in Kansas that would touch it. I couldn't understand what he had just said. A tumor? Inside my spine? Then came the tears.
More like sobbing. He said that I was to stay out of vehicles, don't walk up or down stairs, don't trip, fall, etc...he was afraid that by jarring this tumor, I would not survive.
Needless to say, I have survived.
I found a neurosurgeon that has performed both of my cervical spine surgeries. I may be up for another soon...that is the thing with syringomyelia, once you are a surgical candidate, you are always going to need another surgery. I have met some people on my online support group that have had more than two dozen surgeries! That is a lot of recovery time for one body to deal with.
My first surgery was on August 8, 2011 at the Kansas Spine Hospital. I had a laminectomy on discs C4,C5, decompression of an over enlarged spine, and a subarachoid shunt placed at C5. They had to shave a good bit of hair off of the back of my head...my scar is the length of my neck. My surgeon had hoped that after a couple months off of work, that I could return, with some possible limitations for awhile. But my symptoms did not improve, they have progressed. I was an Ophthalmic Technician/ Ophthalmic surgical tech. in pediatrics. I was my surgeons personal assistant, so he and I had a routine, a way of operating that allowed us to know each others moves and needs in the OR. On my last day, July 21, 2011, I took my equipment into the OR to measure and record an 8 month olds eyes for lenses...he was born with cataracts. I took the measurements, broke scrub, and left. I knew that I could not stay and help perform the surgery. I was heartbroken. I have not been able to return to work. I had spent 15 years in the medical field and was good at my job. The recovery from that surgery was not without complications. I ended up having to be admitted back into the hospital after a week or so at home.
On November 6, 2013 I had a cervical fusion of C5 to C6 after removing C5 and replacing it with cadaver bone. I have a titanium plate and screws in my neck due to kyphosis, the abnormal forward curvature of the spine).
I have had two surgeries in between, one being a partial hysterectomy due to endometriosis.
Today, I have symptoms that are baffling to my doctors. They do their best to treat and take care of me and my concerns. I have a great team of doctors that care for me and I trust them, but I wish that I had a sm expert to talk with. The disease is progressing and I have to decide what level of pain I am comfortable living with because none of the medications have ever made it stop. As an example, it may surprise some of you, I take morphine 3 times a day and can not, at any time, say that I am not hurting. This is a supplement to another pain medication that I take twice a day, along with nerve medication, arthritis medication, and Zoloft. It has been a long 3 years of trial and error with medications. I don't want stronger meds, I want more efficient meds. I want them to do their job so that I can feel it yet, still be aware and mindful.
My daily symptoms: Intense pain and pressure in the back of my head and neck (sharp pains when I lay down on my back), facial pain on lower half of face, neck pain all around, neck stiffness, shoulder pain and stiffness, upper back pain, spine is sensitive to touch, my elbows are very painful, my arms and hands are very tingly and numb, all of my joints hurt to bend and are achy, lower back stiffness, knee pain/stiffness, ankles swell occasionally, feet hurt and I can no longer walk without shoes, my legs & arms (they take turns) fall asleep in the most painful way you can imagine, I can't move the limb when its asleep and have no feeling at all...until it tries to wake up, this is excruciating and leaves my limb feeling dull and lifeless for hours. My vision has decreased some. I feel really hot most of the time, which is new, I used to be cold all of the time. (I believe this is everything I currently feel, it can be hard to keep up)
Syringomyelia is an autoimmune (AI) disorder and usually leaves the door open for others to enter. In the summer of 2012 I was diagnosed with fibromyalgia (not autoimmune), arthritis (AI),and then in January of 2013, I was diagnosed with asthma (AI).
Before July 2011, I had not one inkling that anything was wrong with me. No pain, no tingling, no numbness, no pressure...I was very active, worked hard, and enjoyed life. Now, I have to enjoy things on a different level. However bleak this all may sound, a door has opened to my dreams. I had always wanted to be a writer but never really had time...I have time now. Writing is my ray of hope, my way of continuing to fight this.
Trying to maintain a positive attitude is the only way to live. For everyone. Nothing can hold you back if you're reaching for something that makes you happy, makes you feel whole.
Syringomyelia is a struggle. Daily. The sunrise can bring with it more than a few rays of golden light and warmth, it may bring with it the sharpness and coldness of a disease progressing, taking over. Sometimes...I just prefer to keep the shades drawn.
Take care and stay well,
~Monica
Love you! <3
ReplyDeleteThank you, Kristine <3 I love you!!
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