The SSRA is excited to introduce everyone to grant writing team member, Kelly Morgan. This has been a challenging few weeks for everyone in our
country world but the SSRA work continues with the help of some wonderful volunteers. Kyle, Sue and I had the pleasure of meeting Kelly and her husband when they traveled to Wisconsin to attend the 2019 SSRA Benefit dinner. Join us in welcoming Kelly to the SSRA.- Rori
My name is Kelly Morgan, I am 57 years old and I was diagnosed with superficial siderosis in November 2011. A few years after the birth of my third child, I noticed a loss of my sense of smell and taste. Because life gets in the way, after a few years of missing these two senses, I went to an ENT and he recommended an MRI.
Once a superficial siderosis diagnosis was confirmed I realized that all my other odd, intermittently occurring symptoms (Overview It is challenging to pinpoint the exact cause of su... More, toe numbness, a tip of nose numbness, phantom smells, balance issues, dizziness, hearing coming and going, Overview Tinnitus has been described as a soft sign of the ... More in my ears, and my eyes bouncing around) were all related.
I searched the internet looking for information, didn’t find a whole lot and when I did, it was mostly just random case studies. My local doctors had heard of superficial siderosis, told me it was rare, and that there was not much they could do for me but monitor my symptoms. I connected with Dr. Michael Levy in May of 2013 and while discussing my diagnosis, he mentioned a possible bleed site on my spine and his study on a way to possibly remove the iron deposits.
To locate the bleed, I went through all the usual testing and procedures which included MRIs, MRA, complete cerebral/spinal MRI, multiple lumbar punctures, two CT Myelograms, blood patches, and a cerebral/spinal angiogram. After all these procedures we still only have a theory about the source of my bleed. And that theory being, that my spinal cord lining is detaching from the spinal column, which causes micro-tears/bleeds/fluid leak, pressure change (brain sinking) which causes a very debilitating headache.
Having lived with this condition for so long, I have figured out that I can’t overexert my core or bend over at the waist and this has changed my life. I no longer play tennis, softball, volleyball, snow or water ski, garden or clean the house like I use to. I still overdo it from time to time but now I am pretty good at predicting when I’ll have a headache which also means I’ve had a bleed.
As for the trauma that may have caused my superficial siderosis, I can pinpoint two incidents when I was in my early 20’s. The first one occurred when I was running in the outfield chasing down a fly ball and ran full steam into a park bench that was cemented into the ground and flipped over it. I never took my eye off the ball which is why I hit the bench so hard. The other things I remember from that day was a very bad bruise on my upper thigh and my body ached badly for a long while afterward. The second incident was a T-bone car accident on my driver’s side door. I hit my head hard enough on the window that I went in for a CT scan, which was negative for bleeding but again my body ached for a week afterward.
Up until my diagnosis I had been a relatively active woman, wife, mother to 3 daughters, office manager, PTA President/PTO Treasurer and committee volunteer and currently I am a full-time accounts payable clerk. I feel it is very important to maintain my physical fitness. To that end, I work out with a personal trainer and try to work out at least 5 days a week. I will continue to lead as full of a life as I can for as long as I can. Since my progression is slow and I can deal with my everyday symptoms well at this point, I am not doing anything to chelate the iron but would like to help those who are worse off.
Stay healthy and safe,