Tarlov Cysts: Incidental Findings?

That’s what Tarlov Cysts are usually called. Incidental Findings; Something found that does not relate to the symptoms, which brought about the need for the diagnosing MRI or CT. Something unexpected, something found by accident.

When I came online and did a search for the meaning of “Incidental Finding”, the first thing that popped up was an article published by the Globe and Mail, dated September 28, 2010.

I have added a link to this article in the links column to the left of this page, which is exactly where I think this story, belongs.  Why? Because for Tarlov Patients one of the first things we hear when we’re told about the cysts growing on, or in, our spinal cord is, “there was a spinal cord cyst found in the MRI, but it’s an incidental finding. It’s nothing to worry about.”

Let me ask you, the common person, not the Physician or the specialist. If I was seeing a physician for severe neck pain and cramping, nerve pain and weakness in my arms, shoulders, neck and hands then I would think hey, maybe this is what’s causing my problems…Or if we did this test looking for an explanation of why I can’t sleep at night and when I do manage it, I wake up with an unbelievable headache, then I would automatically think that a cyst found on my spinal cord in the left, C5-6 area might have something to do with my symptoms. Especially if that cyst was located dangerously close to my left vertebral artery. If that was the case then I don’t think I would still consider this cyst as merely an incidental finding and, “nothing to worry about.” In my personal story that was exactly what happened. That was the case.

Once I knew I had this cyst, and I have to admit I’d never even heard the word before, I came home, did some research and found out that if you have one spinal cord cyst then chances are you have more.

When I underwent another MRI, this time for the Lumbar/Sacral area; again the report said, “Incidental Finding”. Again, I have to ask you. If you had over five years of low back pain, consistent nerve pain in your legs, bladder retention, bowel issues and weakness in the low back and legs, then would you not think these symptoms might have something to do with the giant Intradural Meningeal Cyst that was presently destroying your entire sacral canal? The same cyst that, according to the radiologist report claimed, “the cyst completely replaces the central canal, and nerve roots inferior to the S2 are not well visualized, likely displaced by this cystic lesion.”  Likely displaced?

During my trip down the Tarlov Road I’ve learned so many things that truly shocked me about our medical community. One of those major shocks came from medical terminology, and I’m not speaking about the complex medical names or procedures themselves, I’m referring to the not so simple use of the English language. Sometimes I feel that as I read these medical journal entries I am reading legal literature with terminology and procedures that detract from the laymen’s ability to comprehend what is actually being said. It’s like a word puzzle. Something simple said in a difficult way with the major goal of making you feel stupid and unable to question the specialists who will, or will not, speak to you about your diagnosis. Unfortunately, for myself and the many other Tarlov patients around the world, we’ve found many more Specialists who wouldn’t talk about this diagnosis, over the ones who would.

It seems that in Ontario, Tarlov and related spinal cord cysts are a topic that most Doctors within the medical community would prefer to avoid. Mind you, considering what I and others have been told when someone does take the time to talk, I think I’d rather them not say anything and wait for a proven, in practice specialist to speak to me about a diagnosis they’ve worked hard to understand.

But you don't look sick??? (You are not alone)

I don't look sick. I know that. But I also know something else very well; I'm a great pretender when I have to be.

I can take my dog for a walk, I can walk for a half hour, or more, but if you see me would you see my limp? Would you see it getting worse the longer I walk? Probably not. I'm pretty good at hiding it when I have too.

Could you see what I do for the rest of the day after I've driven to the Doctors, the Pharmacy, then home? Would you wonder why I drove my car to the store 5 mins away? I doubt it! 

Would you be there, a fly on the wall watching me go back to bed as soon as I got home? No...... no one see's that part of my life except for the safe circle of family. I can say the words, I can tell you it's rough, but can I let you or anyone else see it? No way........Not if I can help it!!! I'd rather hold onto my pride for now. 

There are so many things you will never see unless you somehow managed to creep into my safely enclosed circle. Perhaps then you could see my walker. The one I can't use right now due to nerve problems in my right arm. 

You might catch a glimpse of the small, dark red wicker basket overflowing with the medications I take daily. Some are there just to make sure I can move today, tomorrow, or  next week. They help me pretend everything is alright, while other medications are there to keep my body working properly i.e. Crestor for Cholesterol, B12 to manage my increasing deficiency, Lax-A-Day to make my bowels work because those nerves that control many functions no longer work on their own. S2- S5 needs a little help for now as I wait for them to wake up and realize there's no more pressure holding them down, choking them of life. 

There's more, I know it. I counted them the other day when I filled my little pill case.... 12 pills a day now. My see through AM/PM case holds little buttons, all colors of the rainbow. Next week they come pre-packaged to make sure I take what I have to take when I have to take them. The packaging makes sure I know I took them, and I'm not taking it again and doubling the dose. I;ve done that by mistake and believe me, with certain medications it's not fun!!

Gravol, actually motion sickness medications you can buy over the counter are much cheaper; 100 pills for less than $5.00! The things you can find out about when you're a regular at the Pharmacy. They help more when they know you and your story by name. Those little pink, anti-nausea pills are the powerful game changer. They're the only thing standing between a day in bed and a day of pretending I'm ok. We're still working on it, but more often than not even my meds aren't strong enough to let me pretend some days.  Those are the days, when you will not see me at all. I may not even answer the phone unless I know who you are, and what you may want. Chronic Pain can make a person do odd things.... but in some cases that's all you can do! Sometimes setting up and maintaining barriers and filters are the only way to still remain attached to the world outside as you wait for the pain medication to take effect, or take a nap at 1pm so I can go to the grocery store at 6pm.

My memory isn't the best. What could I blame that on? Medications? Pain levels? My B12 deficiency? Or perhaps my depression? Yes, you have depression when you live this life. What else could you feel? Thrilled? Happy? Not likely. What I feel is determined to make the best out of a really bad situation. Sometimes my determination gets choked in sadness, self pity or anger, but I always know that soon, later today, tomorrow or the day after, my determination will come back. I wouldn't have made it this far if it didn't.

When I have to go out, medications or not, I still drive, walk or sit. Yes I look totally normal, dressed nicely, well kept, at times, which is totally dependent on the days pain level. Just having my makeup done, hair washed and styled, feeling outwardly confident as my eyes take in my environment, which usually ends with me staring at the floor wondering how weird it would look for me to quietly slide down onto the floor in front of my chair and curl up like a newly born baby. I constantly crave any positions that can protect my right arm and lets it rest. Or maybe it's the nerve pain in my legs, hips and thighs as I wait for my nerves to regenerate from my surgery four months ago. If I'd listened to my Canadian Specialists I would even be able to say that.... "four months post op." For those words to be the truth and not in my imagination, or my dreams, is totally amazing and a miracle!! Those four words are so valuable to anyone with a symptomatic Tarlov Cyst.

If I'd listened to OHIP or Canadian Neurosurgeons, Orthopedic Surgeons and Physicians I'd still be laying in my bed wondering how long I have before I totally lose feeling in my legs. I'd still be worrying and wondering how long I had until I needed a catheter as a companion. My right foot already has limited reflex, my sense of hot and cold is still messed up. Most days I can't even wash my hair and styling it is definitely a chore saved specifically for special occasions.

No I don't look sick and neither do most of the other Tarlov Cyst patients I know. Why? Because we have no choice... no one will talk to us about our illness unless it's to to say, "It's in your head. Tarlov Cysts don't cause pain!" as they look at you like a hypochondriac conniving for narcotics to make life look better.

I hate admitting that I'm living a medical nightmare in Brampton, Ontario, Canada. We have public Health Care, but where's my Health Care?

Can you believe I haven't even gone to an emergency room once? Even when I had pneumonia, couldn't breathe and the ambulance showed up, compliments of TeleHealth, just to make sure I wasn't having a heart attack! Why? Because at the end of that 10 hour wait is a, "I'm sorry, but I don't see anything wrong, at least not anything I can help you with." No one here knows what to do, most  specialists will admit it, but the problem lays with the Specialists who say they could if it was warranted, and mine was warranted. 

Almost every referral my Physician and I tried came back with, "I'm sorry, but there's nothing I can add to this patients care." In the end I had to find someone who could say otherwise so I could have some hope. Thankfully I found that someone in Kansas City. Thankfully I had surgery in Nicosia, Cyprus on July 7th, 2011. 

I've had surgery for the largest of my four cysts and for that I will always be grateful. Grateful for everyone who played a role in making that happen for me, but I know I will never be happy and my soul will never heal until I can hear all of my Canadian Tarlov friends say those four magic words......  I'm "     #   months post-op!!!

Please help bring this torture into the light within Canada.... we are suffering now in silence, but we will be silent no more!! 

No one should lose their life, their hopes, their dreams or their future to a "spine bubble" that's just waiting to be popped.

I may not look sick, but believe me, my body knows I am.