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Tarlov cyst

What is this and who should I see?
I have had a couple of episodes of severe tailbone pain. 2 Years ago I got out of bed and had NO feeling waist down. Disappeared after a few minutes. 6 weeks ago pain severe in tailbone. Felt pop after chiro adjustment and heat radiated from tailbone-buttocks-up to shoulders on back. Dr. put me on antibiotics and pain killers.
As of today, I have had a CT scan - negative. Sigmoidscopy - negative but extreme pain (off the table!)as camera was removed and dipped toward tailbone. Pain is now moderate with a "pressure" feeling. Legs feel "rubbery". For the past week I have had flue like symptoms with very neausea (sic). Procotlogist said he can't do anything for me and suspects a rectocele that he can't see and next week I get a Proctoscan.
Please help! I am tired of getting smoke (and other things) blown up my butt!
ma23boz
PS: I have also got a swollen lymph node in groin.
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Avatar universal
I had surgery at the Johns Hopkins Hospital in Baltimore in January for the Tarlov Cyst.  I only know of two surgeons that operate with any degree of success.  My surgeon was Dr. Donlin Long at Hopkins and the other is Dr. Fraser Henderson at Georgetown University Hospital in Washington, DC.  Of the two Dr. Henderson has performed more surgeries.

My cyst was large and at S2.  I had a laminectomy done at the same time.  Dr. Long fills the cyst with fat and fibrin glue, while Dr. Henderson simply empties the cyst and I think stitches it shut....

It is difficult to find a NSS that feels the cyst are symptomatic, but that attitude is slowly changing as doctors are starting to think outside the box and not believing everything they learn in med school or read in a textbook...
Helpful - 1
Avatar universal
I had an MRI done on my back two weeks ago and my MD sent me to a Neurosurgeon.  I had the appointment today.  They diagnosed me with a Tarlov Cyst (at the base of my spine sitting on the nerve to my legs) as well as degenerative disk disease.  I too have had severe lower back pain as well as leg pain down to my calves.  Specialist told me that they could not drain or remove the cyst and has set up physical theropy as well as suggested that I get an appointment to a pain clinic.  He told me that it was basically something that I would have to learn to live with and to limit my physical activity.  No lifting over 20lbs, no excessive bending and told me that if I were going to be in a vehicle for more than 30 minutes, that I should stop and get out and stretch and then continue on.  I am at witts end thinking that surely with all of the technology today, there would be something more that they could do.  Guess not.
You have my sympathy because I know exactly what you are going thru and it is not fun at all.
Helpful - 1
Avatar universal
A Tarlov cyst is a name for a 'meningeal' or 'perineural' cyst. This is a collection of fluid lined by the same lining as the covering of the spinal cord, and in the same location. the cyst cells can secrete fluid into the cyst so that even when aspirated, it recollects again. They can be small and cause no problems or large and cause problems mainly by compression of adjacent structures ie the spinal cord. An MRI scan is the investigation of choice to identify one

I am not sure if you mean you have already been diagnosed with this or that you think you have one?
An MRI will give you the answer, and a spine neurosurgeon can help decide whether if one is present, is it causing the symptoms? (it may not be!)

A lymph node in the groin could be an indicator of infection or an abnormal growth or cancer, and you should have this looked into by your doctors
Good luck
Helpful - 1
Avatar universal
I had an MRI done and it came back that I have a Tarlov Cyst. I have had consistant back pain,tail bone pain, my lower legs are always falling asleep, and I have pustular Psorasis on my hands and feet which makes it impossible to walk with out pain.  I had a palinotal cyst removed off my tail bone about 8 years ago and havn't had any relief yet. My doctor didn't seem at all concered about the tarlov cyst.  Should I be? I am only 33 I should not be in all this pain everyday of my life. I take methrotrexite for the psoriasis, this should help with arthritsis pain, but it doesn't.  Should I get a second oponion?
Helpful - 0
Avatar universal
I had an MRI done and it came back that I have a Tarlov Cyst. I have had consistant back pain,tail bone pain, my lower legs are always falling asleep, and I have pustular Psorasis on my hands and feet which makes it impossible to walk with out pain.  I had a palinotal cyst removed off my tail bone about 8 years ago and havn't had any relief yet. My doctor didn't seem at all concered about the tarlov cyst.  Should I be? I am only 33 I should not be in all this pain everyday of my life. I take methrotrexite for the psoriasis, this should help with arthritsis pain, but it doesn't.  Should I get a second oponion?
Helpful - 0
Avatar universal
No, I have not been diagnosed with a Tarlov cyst. I have yet to find a doctor that has even heard of it.
Today is Thursday and starting last Sunday I have had severe abdominal cramps and bowel problems.
Had to call an ambulance yesterday. After all day at hospital I am now being tested for pseudomembranous colitis caused by the clindamycin I was on because they thought originally I had a ruptured cyst thus giving me the swollen lymph node.
On Friday I am having a barium enema to rule out an endocele and/or hernia.
I have TOLD my GP that if this comes back negative that I need an MRI however I am not sure if there is anything specifically I should ask them to do for the MRI.
Thanks for your help. At least SOMEONE knows what I am talking about.
PS: Hospital gave me morphine for stomach cramps and this was the first time in 7 weeks I have not had pain.
Helpful - 0

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