Tarlov Cysts: Teach the Teacher

When a cyst has been located on your spinal cord,  size, nerve compression and location will usually bring froward the question of  "are these cysts symptomatic or asymptomatic?" That decision can be made by determining if you present any, most of, or all of the following symptoms. Does the following list accurately explain any of the pain or complications you experience personally.


Symptoms of expanding/enlarging cysts occur due to compression of nerve roots that exit from the sacral area. Symptoms may include the following, dependent on the location of the cysts and the section of the spine they occur:

• Pain in lower back (particularly below the waist) and in buttocks, legs, and feet
  
• Pain in the chest, upper back, neck, arms and hands
  
• Weakness and/or cramping in legs and feet / arms and hands
  
• Parasthesias (abnormal sensations) in legs and feet or arms and hands, dependent on cyst locations
  
• Pain sitting or standing for even short periods of time
  
• Pain when sneezing or coughing
  
• Inability to empty the bladder or in extreme cases to urinate at all
  
• Bowel or bladder changes, including incontinence
  
• Swelling over the sacral (or cervical, thoracic, or lumbar) area of the spine
  
• Soreness, a feeling of pressure and tenderness over the sacrum and coccyx (tailbone), extending across the hip and into the thigh with cysts in the sacrum. Same feelings in upper sections of the spine dependent on cyst locations
  
• Headaches (due to the changes in the CSF pressure) and sometimes accompanied by blurred vision, pressure behind the eyes and optic nerve pressure causing papilledema (optic nerve swelling)
  
• Dizziness and feeling of loss of balance or equilibrium
  
• The feeling of sitting on a rock
  
• Pulling and burning sensation in coccyx (tailbone) area, especially when bending
  
• Sciatica
  
• Vaginal, rectal, pelvic and/or abdominal pain
  
  
  

The sciatic nerve is the longest nerve in the body and it originates at the S2, S3 level of the spinal column. It crosses the buttocks and extends down the leg into the foot. Sciatica is a syndrome that results in burning, tingling, numbness, stinging, electrical shock sensations in the lower back, buttocks, thigh, and pain down the leg and foot. Severe sciatica may also result in weakness of the leg and foot.

**Symptoms list Copied and provided by the Tarlov Cyst Disease Foundation. Link to the Foundation can be found in the link lists to the left of this blog page.**

Some of the issues I have personally faced include:

• repeated urine infections
• blood in the urine
• urinary stasis in both kidneys, marked more on the right than left kidney.
• urinary reflux
• bowel or bladder changes, including incontinence and loss of feeling
• pain in lower back (particularly below the waist) and in buttocks, legs, and feet
  
• pain in the chest, upper back, neck, arms and hands
  
• weakness and/or cramping in legs and feet / arms and hands
  
• soreness, a feeling of pressure and tenderness over the sacrum and coccyx (tailbone), extending across the hip and into the thigh with cysts in the sacrum. Same feelings in upper sections of the spine dependent on cyst locations
• headaches (due to the changes in the CSF pressure) and sometimes accompanied by blurred vision, pressure behind the eyes and optic nerve pressure causing papilledema (optic nerve swelling)
  
• dizziness and feeling of loss of balance or equilibrium
  
• the feeling of sitting on a rock
  
• pulling and burning sensation in coccyx (tailbone) area, especially when bending
  
• Sciatica
  
• vaginal, rectal, pelvic and/or abdominal pain 
  
  
  I'm sure you can see that when the symptom list is compared to my personal list the similarities are quite obvious.
  
  
  Review the symptom list and compare your pain or personal experiences to that list to help with determining if your cysts are indeed symptomatic. Be as honest as you can to ensure accuracy and that your claims can be scientifically supported by the specific location, size and the afflicted and compressed, nerve roots. 
  
  
  This experience could provide you with legitimate knowledge, and allow you to explain in plain English when describing your issues, and your beliefs to your physician. Although Tarlov Cysts are typically deemed to be asymptomatic, science cannot be ignored in the face of accurate and scientifically sound information.
  
  
  Sometimes we, the patient, have to be the teacher. To be a teacher you must be informed.
  

Another Day, Another Change

I think I've adjusted to the changes that occur with this illness and the challenge of new symptoms almost everyday.

Last week I pushed myself a little too hard, I think. It can be a little difficult to tell when I'm blessed with the  pain numbing gift of Dilaudid. Believe me, I'm not downing pain medication, not at all. If anything I wish we could find some consistent, dependable pain management for my constantly increasing pain, but right now we're still trying to find what works, what doesn't and what might.


Shortly after what I assume was overdoing it (ODI), perhaps a day or two later, a new limitation showed itself. A new limitation that totally changed things.

Everyday I walk my little Jack Russel Rennie. Usually we follow a regular route in the back of the apartment building where I live. I swear it's never been an issue, if anything it was nice way to wake up in the morning, break up my day, or to end what seemed like a long and endless, pain filled day. So I decided this time to take him to a different park and en-route I found myself having to sit four times, more than I've ever been required to do.  


In the recent past I'd been able to walk that far with only one or two stops, but this time it was a mandatory four. I know it would have been even more if I'd given in to the pain and sat again. I made it back home, rested and the pain from the walk seemed to fade, leaving behind stiffness that I could live with as long as I didn't do too much. 

The next day I did the typical normal morning walk with Rennie and when we were half way through I began to experience an excruciating pain in my low back and left hip. The path of pain felt like a nerve pinch sending what felt like an electrical shocks down to my foot, forcing my foot to turn inward. I was forced to rest for a quite a long time waiting for the pain to ease and I sat on a bench with Rennie at my feet, staring at me. I think he knew something was wrong.

As time passed I became strong enough to face the pain and walk to the building. As I walked I kept my eyes focused on the door, staring at it, feeling like it moved farther and farther away as I limped home suffering from severe pain in every step. I made it into the apartment door and walked straight to the safety of my bed, while dropping Rennie's leash to the floor and calling out to my Mother for help.


That was a moment of change. I didn't realize it then, but as my Mom removed my shoes the tears filled my eyes. I knew this would be another day of resting and trying to recover. Another day of my life lost to this disease while I became more and more fearful of walking too far on my own. I knew things where getting bad, but I didn't think it would get this bad. I guess I was in denial and still holding onto that small glimmer of hope. The hope of finding, or being offered a solution. I prayed that one day that remedy would come.

The following day, the day before my Grandsons 2nd birthday I endeavored out the door on a mission. I walked to the mall, a short 10 mins away, accompanied by my nephew and thankful that I wasn't alone. I made it into the mall with that now common and typical pain slowly building. I knew where I was going, knew what I wanted and didn't spend much time getting it and heading back out the door, but just as were were leaving the store the same pain as yesterday came on extremely strong. Once again I couldn't put pressure on my left leg without that electrical shock in my hip shooting down my leg and into my foot. I leaned on my strong nephews shoulder and limped to the door while every step increased the pain. We stopped near the exit and as I sat on the bench I downed some cold water, accompanied by my pills. We called for a taxi and every moment seemed like forever. Every single second of having to stand upright made the pain even more severe. I stared at the sidewalk wondering, "would it be too strange if I laid on the sidewalk and curled into a pain-filled ball?" Thankfully the Taxi  appeared before I had to resort to such embarrassment  and we were home within minutes. 


Once again, just like the day before, I hobbled directly to my bed where my Mother once again removed my shoes and that's where I remained for most of that day. Another day of my life lost to this disease. The days I was losing were certainly mounting!

These experiences taught me a valuable lesson. A lesson I'd have to face eventually; I was time to get a walker. I needed something to rely on. Something to help me maintain whatever independence I could as these cysts took away my freedom while I wait for surgery.

This disease isn't just filled with pain or lost days. This disease is also filled with challenges and loneliness. It's a disease that can easily generate fear. Fear of being alone, fear of walking too far from home and also the fear for my future and how much more I could handle. 


Now I'm more cautious of what I do that requires walking. Now I have one more thing to add to the long list of limitations and complications. Now I have one more thing to thank the cyst and the confused Ontario and Canadian medical system for. Thanks for taking one more thing I have always loved and making it a fear rather than the pleasure it had always been.

I know I'll mange, that's what I always do! I will not let this stop me from being me and I will not let this take away the things that make me, me. 


The lessons we learn overtime are all we have to depend on. We have to keep moving forward, with and by whatever means necessary. Things may have to be modified, but it never has to end.

I do hope we can change this medical system in the future to help them understand that Tarlov Cysts are NOT an incidental finding! These Cysts are real, they cause real pain. They can change life and turn it from a learning journey into a never ending challenge. 


I'm still learning, but I'm getting a little wary of the never ending challenges with no professional, medical support. 


A GP really can only do so much.