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Tarlov’s: An Update

July 5, 2014

December 12, 2013 was the one year anniversary of my Tarlov Cyst surgery. It wasn’t until then that I started to see real improvement physically. Prior to the one year mark, I had been slowly improving, but around 11-12 months post-op, I started to see significant changes. For instance, up to that point, I had been unable to sit on my couch. I only sat in a wheel chair with a tush cush. I pretty much hurt every day.

Around Thanksgiving, I discovered I was comfortable sitting on the couch which was incredibly exciting. I even started reading sitting up. (Oh, how I had missed that. Sometimes, it really is the little things!) I did not have to rest every day. I could shop and walk around without sciatic pain and my feet going numb.

Then…(add the ominous music) I did a ton of traveling from late December through the end of March, about 2,900 miles worth. Needless to say, that was WAY TOO MUCH. I started to really regress. I couldn’t sit for long in my wheelchair; I couldn’t sit on the couch; I couldn’t stand for long; I couldn’t lean over the kitchen counter. It was heart-breaking.

In May, my doctor bumped up my Lyrcia to three times a day and did a round of steroids. I noticed a little improvement, but I was still struggling physically. Dr. F’s office ordered an MRI and suggested doing another round of steroids which my family doctor ordered. I also started physical therapy at the same time. I am blessed that another TC’er lives in my area and even goes to the same family practice I do. She suggested using the same physical therapist she had used the previous year. I am so glad I did. My physical therapist, Holly, listens when I tell her an exercise bothers me and she discontinues it, no questions asked. She is familiar with Tarlov’s and is careful to slowly add in exercises to see if they cause  a flare.

My exciting news is that today is the fourth day this week that I have walked almost a mile. I am not proud of myself. I would have done this long ago if I had been physically able. But, I am very excited.



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