MY TARLOV CYSTS STORY in a nutshell

2 years ago I thought my life, as I knew it, was over. I started having overnight a very intense back pain in my sacrum area and numbness in my right leg and foot. I couldn’t seat on a chair for more than 5 minutes, I couldn’t work, I couldn’t take care of my kids. After being diagnosed with Tarlov Cysts I consulted several neurosurgeons and all of them advised against surgery; they told me risks were high and outcomes mixed. I spent weeks browsing the internet and I felt desperate as I found a lot of information on outcomes following surgery (indeed, results were mixed) but almost nothing on outcomes following conservative treatments. Furthermore, several websites described the condition as ‘progressive’, which caused me to be extremely anxious.

Then, I saw ONE POST that brought me much-needed light – It was entitled ‘TARLOV CYST NO SURGERY’. There, a man described how he had improved his Tarlov Cysts symptoms by strengthening his back with Tai Chi, doing stretches every day and following the water diet. I haven’t managed to find that post again; but that post gave me hope and guidance and I’ll be forever grateful to that man for writing it. After that, I started following many conservative treatments that (very slowly!) brought me to recovery (see My pain toolkit for an overview).

Today, dear reader, 2 years later, I can say I’m about 90% recovered from my Tarlov Cysts symptoms.

WHY AM I STARTING A BLOG TO SHARE MY TARLOV CYSTS STORY?

Because 2 years ago I would have LOVED to hear about cases of POSITIVE PROGRESS of Tarlov Cysts disease symptoms and I found (almost) none. I wish you to know that in the past 2 years I’ve gone from feeling severe back pain and being seriously limited in my daily activities to living a normal life (without having had surgery!). As a result, I believe that, by sharing my story, I can give hope and guidance to those of you who have been just diagnosed of Tarlov Cysts or who are looking for ways to cope with chronic back pain and the anxiety it generates.

IMPORTANT NOTE

With my blog I aim at giving visibility to a case of improvement without surgery (so far). I don’t mean to say that ‘all cases can improve without surgery’ and I also don’t mean to say that ‘your condition will improve if you follow the steps i took’ (unfortunately). This is a rare disease and mine is just ‘a case’…actually maybe my condition worsens over the next 6 months, and I end up having surgery myself! But my wish is to drive awareness that recovery without surgery is ‘a possibility’. My wish is also that scientific community gets interested in understanding TC using a representative sample and create evidence on what really works/doesn’t work on a large base size patient population (studying both surgical/non-surgical procedures) so that TC patients can get better informed, treated and advised.

I invite you to visit My pain toolkit section to have an overview on the steps I took to lower my back pain and My positive progress post to better understand my recovery journey.

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