Unless, of course, someone close to you suffers with this debilitating disease - chances are, you have never even heard of Tarlov Cysts.
I believe that raising awareness is very important for every rare disease, this one is no different. I'd like to tell you all about what they are, how they affects the life of someone who suffers because of them and how they have personally affected mine.
What are Tarlov Cysts?
Tarlov Cysts, also known as sacral nerve root cysts or perineural cysts, are abnormal sacs filled with cerebrospinal fluid that appear on MRI as "ballooned" sheaths that cover the nerve root connected to the spinal column. Needless to say, if the cysts are symptomatic (yes, they can also be asymptomatic for some people, which, in fact is more common), they can be extremely painful.
What are the causes?
While the causes are yet to be scientifically proven, the cysts are said to be associated with disorders that can increase spinal fluid pressure and are very common with connective tissue disorders, such as Ehlers-Danlos Syndrome and Marfan Syndrome.
Asymptomatic cysts can become symptomatic if a person experiences trauma to the spine, such as a car crash or childbirth.
What are the symptoms?
Symptoms vary from individual to individual, however, here is a list of common symptoms, according to the Tarlov Cyst Foundation
- Pain in and below the lower back / butt / around your waist and hips / legs / feet.
- Pain in the chest / arms / upper back
- Weakness
- Inability to pass urine or have a bowel motion
- Pain with sitting or standing, even through very short periods of time
- Dizziness
- Headache
- PGAD (Persistent Genital Arousal Disorder
- Sexual dysfunction
- Vaginal / rectal / pelvic and abdominal pain
- Other sensory issues
Is there a cure?
No, however, there are some forms of treatments that could help a person suffering from Tarlov Cysts. They don't work for everyone, therefore it is best to consult with your neurologist before making a decision upon a treatment. For example. for some people, physiotherapy can ease the pain. Some need very strong painkillers.Others have a complicated surgery. It really depends upon the individual and their whereabouts.
My experience with Tarlov Cysts.
When I was eight years old, I began having debilitating pain in my abdominal region - it felt, and still feels, as if someone poured steaming hot water into my abdomen, tied all my muscles and started stabbing me in my groins all at the same time. This was accompanied by a loud pounding headache, inability to pass any urine for up to twelve hours, inability to sleep, stand or walk.
At first I was terrified, and so were my parents. Wouldn't YOU be terrified if something like this began randomly happening to you? We went to several doctors and nobody quite knew what was going on. Of course, there were many theories - kidney infection (but we always checked urine and bloods, they were clear), growing pains (they kept happening even after I stopped growing) and my absolute favorite: one doctor told my parents I was making it up so I didn't have to go to school.
Anyway, the pain continued, sometimes up to three times a week. Seemingly brought on by any physical activity. From walking, to washing myself, whatever I did it always came on. Sometimes it was so bad I called an ambulance, just out of desperation, hoping that maybe, just maybe they will find something this time.
Until I was seventeen. When I was seventeen, it came up in an MRI that I have Tarlov cysts all over my spine. Certainly more than eight, medium sized cysts that were leaking and unfortunately, we could not do anything about it at the time as I was going in for an emergency cardiac surgery.
After my cardiac surgery, I was referred for physiotherapy, despite my protests. By that time, we have already tried every weak medication to kill the pain, but nothing worked. Panadol, Tylex, Lyrica and Diofene, I ate them like candy and they did nothing for the pain. Until I got prescribed oxynorm, to try and see if it would help.
Bingo. The pain didn't fully go away when I took oxynorm, but it was eased to the stage where I could move around and go to school. Unfortunately, in the previous years, the pain has gotten so bad that even oxynorm is not helping as it used to. I use it but now, the pain has taken over my life. I do not go to school, I do not go outside. I cannot even get up to the toilet sometimes, as I cannot stand up.
A couple of months ago I have had an MRI that showed the presence of twelve medium cysts on my spine. We are currently saving up and looking for a surgeon in Europe that could perhaps take up the surgery as I have tried every other possible treatment and nothing is helping me.
I am hopeful.
