Originally Posted by i.a.n.

Hello,

This is my first post on this forum. My name is Ian and I was diagnosed 5 years ago with 3 Tarlov cysts, and an additional 2 after a recent MRI. I have no idea how long I've had them, but it could go back decades. Like many of you I'm sure, I was told they are not an issue. But I'm done listening to doctors and finally listening to my gut.

I have a 30 year history with constant back pain. Four years ago I had an artificial disc inserted at L4/L5. I was able to get my life back, return to mountain biking, kayaking, all the things I enjoy. Then things collapsed a couple months ago and the life ending pain returned.

My cysts range in size from 1.7 x 1.7cm to 1 x 3cm. All of them are large enough to be symptomatic and located around S1/S2. My MRI shows no stenosis, no other disc problems, but I do have a history of SI joint issues, which stem cell injections helped repair.

So I'm now finally focusing on the cysts. Our options are either surgery, or aspiration and fibrin glue. I'm going to try aspiration before undergoing another surgery.

Who hear has had their cysts aspirated and what success did you find? Other than Dr, Feigenbaum, which doctors took you seriously and offered any real solutions other than drugs. I refuse to take pain killers. I'd rather find a cure to the pain than mask it.

My pain starts in my sacral area and spreads into my lumbar and down my left leg into my foot. It can be diffused, dull, sharp, stabbing, numbing, etc. I can't stand in place, and sitting is difficult. Exercise is no longer an option and sleep is getting harder and harder. Basically, I'm down to one more shot at finding a solution, and if I can't, it's time to move on from this world.

I have an appt for a consult with Dr Feigenbaum in June and I'm waiting to hear back from the spine center at UCSF and Johns Hopkins. I'm hitting this with all I got, so if anyone has other suggestions I'm open to anything.

Thanks,
- Ian