Hi,

This is my first post here, but I have recently been diagnosed with Tarlov cysts.

I had a fall in November 2013, have been back and forth to the doctors to find out what is wrong, but have had no answers at all. I've waited months in between appointments / scans and all the while I've been in pain and have been off work and all I want to be is working again and be pain free.

Because of the long NHS waits, I decided to start paying for my own treatment - physio, an MRI on my pelvis because this is where I was getting the pain and NHS refused to scan it (this is when the cyst was found) and I decided to pay to see a neurosurgeon who is apparently an expert in these cysts. I wanted to get more information about it and to be able to see him now rather than wait months with NHS.

I was told:

*I have a definite Tarlov Cyst at left S2
(this is the spot where I fell)

*there is a bulge at L5/S1 so it looks like the spinal canal and nerve seem to be in the same sac - nothing to do with the discs (not sure of the medical term, but he said this was ok)

*He's never had anyone go to see him with a tarlov cyst after trauma (I know this is false as I have spoken to someone who also has a cyst and saw him after trauma).

*Cysts aren't caused by trauma, it was there already
(I know this is debated by experts after reading medical research papers)

*There is no clinical reason for my pain and he thinks it's psychological!!!!

*he insinuated I was only there to jump on the compensation band wagon!

*he doesn't know what is causing my symptoms

Even though my cyst is on the nerve root, my pain is in the S2 dermatomes and I haven't had any problems before my fall and there is nothing else wrong with me, he is still adamant it's not the cyst causing my problems.

He was recommended to me, but I have to say he was so arrogant, he chucked my file on the side and had already opened the door for us (me and my husband) to leave before we had even lifted a cheek off the chair!!

I know there are debates regarding cysts being symptomatic, but surely anything on a nerve root can cause pain?

I'm sure it's not just me experiencing these things, but are there others here that have had doctors tell them it's psychological and the TC's are asymptomatic?

I'm quite sure it's not all in my head and I absolutely hate it when someone makes me doubt myself in this way.

Thanks

No, it's not in your head. However, the frustration of dealing with an arrogant, uninformed neurosurgeon IS currently in your head (brain). After I had successful surgery with Dr. Feigenbaum and was able to return to work, the doctors hired by the state workmen's compensation board still insist it was "all in my head".
I'll say it again: If you have symptomatic Tarlov Cysts, contact the office of Dr. Feigenbaum and request a consultation. Don't waste any more time. And yes, trauma does cause this condition. It can not be confirmed whether the cysts were pre-existing, as most of use do not have spinal MRI's on a regular basis prior to experiencing the trauma.