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8/22/2016 Latest post:
A few months back, I didn't consider myself a candidate for having a story on Caring Bridge, yet here I am trying to document the predicament I find myself in today. The short version is that I will undergo a risky surgery at U of M Health Fairview Riverside Hospital on Tuesday that if all goes well, I will still be facing 3 months of recovery before resuming "every day" life. That means that for the most part, Iliana will be a single mom to Alex and Emily for the foreseeable future. We thought this is the best venue to help minimize Iliana's responsibilities and allow her to provide updates to family and friends. For anyone that wants to hear the long version, I'll do my best to spell it out here.
To bring you up to speed, I have scoliosis, which is curvature of the spine. A couple of my vertebrae have a triangular shape instead of the block shape as they should. This led to my spine curving in the first place as I grew. In order to halt any potential worsening of that curve in my spine, at age 11, I had surgery where they fused the curve in my spine with two Harrington rods. The surgery also had its risks, but was a success and for 40 years, I didn't give much thought to my condition and lived an active normal life.
Early this year, I started to experience numbness and weakness in my legs, especially my right leg. I went to the doctor with thoughts of ALS and MS crossing my mind. I met with orthopedic and neurological doctors, and had many images created from x-rays, CT Scans, MRIs, and a Myelogram. The resulting diagnosis is that I suffer from Myelopathy from Thoracic Spinal Stenosis. I'll let you look up those terms if you are so inclined. But it means that I have neurological deficit due to compression of my spinal cord in the thoracic region of my back.
What those images reveal is that where my spine curves, my spinal cord is taking the inside lane around that curve, and being stretched thin and draped against the bone along my spinal column which is not conducive to the passage of all that information that needs to travel between my brain and nerves and muscles. My spinal cord is sick. The doctor said that the odds of having this condition are about 1/100,000. To make matters worse, I also have an Arachnoid Web, which is an abnormal formation of the arachnoid membrane which surrounds the brain and spinal cord. So this is applying pressure on an already sick spinal cord. The doctor said this moves me to 1/1,000,000,000 odds. The bandwidth along my fiber optic cable is being throttled.
I estimate that I have had some minor symptoms from all of this as far back as perhaps three or four years ago, where I noticed my right foot didn't have the full motion in walking or running as it should.. They sometimes call this a "drunken sailor gait" and so now you know, it wasn't always the beer. It is only this year, that I've noticed significant progression of my symptoms, which drove me to seek medical help. Without taking corrective action, these symptoms would progress to the point of paralysis and put me in a wheel chair. I feel very grateful for my life and want to maintain the quality of life that I have, even if I remain burdened with the symptoms that I currently live with. Therefore, I have elected to undergo corrective surgery.
Joining me in the OR, will be Dr. Polly, Chief of Orthopedic Surgery at the U of M, another Orthopedic Surgeon from Twin Cities Orthopedic, and a top Neurosurgeon at the U of M. They will remove the two old Harrington rods that have fused my spine for 40 years, and made me think each time I passed airport security that alarms would sound. They will perform an osteotomy, or the removal of one my triangular vertebrae, straighten my spine out (giving my spinal cord a straight run), and then refuse my spine for stability. At some point during the surgery, the Neurology Surgeon will also take care of the arachnoid web to remove that pressure that is being applied. The entire procedure will take about 10 hours.
The scariest of the risks that are associated with this procedure for me is that there is a possibility that I could still come out of it paralyzed and in a wheel chair. The doctor is good at putting odds on things, and he places this at 1-10% chance. The other lower risks are associated with the fact that I will be in the OR for 10 hours and require blood transfusion and blood washing procedures, which raises the risk of infection.
I'm planning on all going well, and waking up, being able to see beyond the post surgery pain and see my feet and toes wiggle. It's estimated that I will be at Fairview Riverside for 7-10 days where they intend to get me to the point that I can go home and walk around the house, sit in a normal chair and sleep in a normal bed. Recovery at home will mean no twisting or bending, and no lifting objects heavier that a milk jug. How heavy is a milk jug?
The main objective of this surgery is to stop any progression of my symptoms. As there is no telling how the body will heal, there is no guarantee that my symptoms will dissipate. I've already wrapped my head around this new sense of normal and would feel fortunate to maintain the status quo. I'm optimistic that I will see some, if not all, reduction in symptoms because I've noticed that after swimming, I experience a decline in symptoms for a couple hours afterwards, which tells me that removing that compression on my spinal cord, makes me feel better. There is a possibility that they will aggravate my spinal cord during surgery and that I may experience worse symptoms post-surgery from inflammation, but they foresee these receding in six to twelve months.
Although it is unfortunate to be stricken with this medical condition, I also feel very fortunate to have access to some of the best healthcare in the country and that a possible cure is available to pursue. I feel that I will be in the best of hands in the OR, and that they have mitigated any potential risks as much as possible. Dr. Polly told me his goal is to make me better, he is at the top of his game, and has a very successful track record. This is what he does.
I'm blessed and forever thankful for having the love and support of my family. Iliana, Alex and Emily are my lifeline to happiness and joy. It brings me great relief to know that we all will have the love and support of this great neighborhood we call home, Bryn Mawr. We are so lucky to be surrounded by a genuine community of friends and neighbors who care and look out for each other.