Tarlov cyst and Spina Bifida Occulta

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Hi,
This is my first posting. I live in Ireland and am 46 years of age and have just been diagnosed with Spina Bifida Occulta, Tarlov cyst on s1, duplex collection system in my left kidney which is also enlarged . I have been having a lot of weird problems with my back and my bowels for the last few years. My bowels literally stopped working and I have to use all sorts of meds to get any result. My doctor suggested a colonoscopy as my dad had had cancer of the colon. Came back clear.

For the last three years a weird sensation has progressively developed to the left side of my spine in the approx location of my left kidney. I feel pressure there, tingling, buzzing and throbbing. A new sensation of pressure developed recently lower down in my back and again to the left. I had several x-rays of the spine and Spina Bifida Occulta was discovered on my s1/s2 area. Doctors told me it was nothing and that it causes no problems at all. I have done some research on the internet and that does not seem to be the case.

Anyway I had an MRI done last week to see if there was any disc herniation that was causing these sensations. The results went back to my doctor who when reading them out to me only noted that they had discovered a duplex collection system in my left kidney and that he wants it further investigated by ultrasound. He said that it was just a formality and not to give it a second thoughtl. He gave me a copy of the results to take home with me. When I did get a chance to read them I also noted that the results showed that my left kidney was also enlarged but interestingly and only incidentally noted was the presence of a tarlov cyst at the exact location of my spina bifida occulta.

I researched tarlov cysts and was quite disturbed to discover that they are not just 'incidental'. Apparently they can affect bowl function, even mentioning severe constipation and can cause pain and weird sensation in the legs and or back.

In the last few days after prolonged period of sitting at my computer as soon as I get up I feel my tailbone hurting me. It is as if I was sitting directly on it. I also feel that my spine is taught and under pressure when I lean forward or bend down.

I really need to know if these symptoms and the gremlins that appear to be living in my back could be caused by the combination problems in my s1 and s2? By the way, what I am experiencing is more severe discomfort and not pain. That is for the moment anyway!!

Vivien

3 replies

Hi Vivian

I have TC's and from the sounds of things that is what is causing your problems as well. I would go and see a neurosurgeon ASAP and check out the other article on this site under just Tarlov cyst and you will see at lot of other places to go check out your symptoms.

Margaret

Thanks Margaret,

I have already decided to push for a neurosurgeon but you know what the doctors are like when it comes to Tarlov Cysts and for that matter Spina Bifida Occulta? I lost my 11yr old son to cancer 10 months ago (brainstem tumour) and I feel that doctors may believe that my grief is somehow manifesting these symptoms. I keep having to remind them that I had presented at their clinics a long time before Conor was diagnosed.

I will check out the article you mention.

Blessings,

Vivien

I have the same conditions. Im pretty sure all your symptoms are related to your spinal condition, I have many of the same symptoms. I had to go to 6 neuro surgeons before I found someone who could help me and believed my pain and symptoms where related to my spinal problems. I am having surgery dec 2nd. Please don't give up. I know this can be very srtessful and depressing.you may have to look outside of your country to find help.I wish you the best of luck.

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