Question of the Day: Am I Going to Get Worse Quickly?

Dr. F says I have had these cysts my whole life. Most people with TCs never have symptoms. No one is exactly sure of the cause of TCs. The fancy word is “etiology.” Or, why exactly some go from asymptomatic to symptomatic. They have seen cases where there is a connection between TCs and trauma (such as childbirth, falls, injuries, epidural injections, back surgery). They believe that sometimes these cysts are related to connective tissues disorders and other diseases. They have seen cases where they run in families. For those of you familiar with a Dermatome Chart, if you look at the areas related to S1/S2, those are EXACTLY where my symptoms are. (How any neurosurgeon can say that TC’s in your S2 do not cause symptoms is beyond me, other than the fact that they were educated to believe they are asymptomatic and they can’t do anything about it anyway.) 

My pain, muscle weakness, spasms, shaking and sciatic symptoms have been worse on my right side due to the location of one of the large cysts, but the other large middle cyst affects my left, though less severely. The pain starts in my lumbar back, sharp stabbing pain in my piriformis muscle (middle of the butt) and radiates down the back of my legs. The nerve compression is causing my piriformis muscle to stay contracted when it’s not supposed to. It’s a pain in the butt. (hahaha)

All of this mayhem has snowballed very quickly. One of my most concerning questions I had for Dr. Feigenbaum was “This has all come on very suddenly? Am I going to get worse quickly?” (I.e. be in a wheelchair and diapers in two months?)

No way to predict that. But, in many patients, the symptoms do hit all at once.

Dr. Feigenbaum confirmed that the longer you go without treatment, the worse the nerve damage becomes and eventually gets to the point where it is irreversible. There is no consistency among patients as to how fast their cysts grow.  He’s seen pictures of ultrasounds where they have grown over a period of decades. Some in months. I’ve spoken to patients who have had untreatable tiny cysts, fell on their butts, and then their cysts blew up like light bulbs within months on their MRIs. Due to lack of awareness and education in the medical community, because this is an extremely rare disease, even the best of neurosurgeons and orthopedic surgeons don’t know about this, much less are willing to even consider treating it due to the risks.  As of now, they do not monitor the cysts because they are “asymptomatic” and “incidental.” And, being so rare anyway, it’s more likely they their patients with TCs wouldn’t have symptomatic ones.

If my symptoms worsen, Dr. F said to call them. Please pray that I don’t get worse. I’ve spoken to several TC “cysters” who experienced progressive symptoms over a short period of months that ended in them being unable to walk. One friend got to the point where her husband had to literally carry her to the bathroom. Of course, this is my worse fear. I can still walk right now, where many of my TC cyster friends have reached the point where they cannot.

The nature of the disease is its unpredictability. Talk to any TC patient and they will tell you every day is different from the other and you never know what to expect or what new symptom will pop up. It’s like playing a game of “Wheel of MIS-fortune!” Let’s spin the big wheel and see what it will land on today! Oh goody! I got tinkling in my pants when I blow my nose! MY FAVORITE!

Sometimes the debilitating pain gradually creeps up over a few hours. Sometimes it's instant, sometimes it comes on later as a backlash if I’ve been on my feet. One day I tried to put up clean laundry and was only on my feet for 20 minutes and it killed me. Another time, I had been in bed for so long and was beginning to get disgusted at the carpet in the master bedroom and upstairs hallway. I grabbed my handy-dandy dyson ball lightweight vacuum cleaner and did a quick run through. HUGE MISTAKE! Seriously? I can’t even vacuum the hallway!?!? It wasn’t even the entire bedroom! It was nice not to have to stare at the nasty floors anymore, but immediate backlash was definitely NOT worth it. I’ll take my dirty floors next time, thank you! Other days, I can magically manage to drive myself 15 minutes to my doctor’s appointments, but using my right leg to drive hurts and by the time I get home, my pain is pretty bad and I have to go straight to bed. Did I mention that one time I went to poop and my pain went from a 5 to a 9 instantly and I was writhing in bed for hours that night? That pain lasted a day and a half. Seriously? Am I not allowed to poop now? I’ve started taking Natural Calm, which has magnesium and is supposed to make those type of situations “come out” better, if you know what I mean.