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Sacrum, congenital lipoma tumor or Tarlov cysts?

Started by MyRareSpine on 07/27/2016 9:54pm

I have done a lot of research and finally found a organization that deals with rare disorders. It's called NORD (National organization for Rare Diseases) This organization has done extensive research on Tarlov (Perineural) cysts. Their research finds these cysts are predominately found in the sacrum (95% of the time) they are Tarlov cysts and can cause symptoms from head to toe. They can cause retractable pain and 3 out of 5,000 neurosurgeons will operate on them because they are not only in the sacrum but like myself have these cysts connected to almost every level of my nerve root sheths and themselves have nerve fibers within the cysts, so you can't blame them. But because I have this rare disease, little is understand about their pathology and symptomology. They cause multi-symptoms. Things I have experienced is paresthesias (abnormal sensations) in legs, feet, arms, hands, my scalp, like bugs crawling on me when there is none. This involves nerves and could be a sign of nerve damage, which can be irreversible. Weakness and/or cramping in legs, feet, arms, hands. Pain in lower back below my waist including legs, buttocks, legs & feet. Pain when walking or standing too long.
Bowel & blader changes. Headeaces (due to the changes in the CSF pressure). Sensory symptoms: ear noises, I get ringing, buzzing or sounds like a bowel of Rice Krispies in my ear. I experience painful Sciatica, especially at night. I get rectal cramping that is extremely painful, it feels like I'm in labor. There are more symptoms but these are the ones I experience. And recently I was so exasperated with an ear itch that has been checked by a few doctors, an ear nose and throat, and my regular doctor, and my ears are clean and clear, but when I started getting rushing of heat feelings in my ear and then felt like something large was trying to crawl out of my right ear I took a shot after dealing with the itch for 6 or more years, googled, can nerve damage cause itch and low and behold it can. These cysts are all up and down my spine, I have more than most doctors have seen on MRIs, and they cause nerve pain and possibly irreversible nerve damage. Its been a tough long 10 years, and I pray the medical community, especially neurologist's would find a way to help with this debilitating disease. The doctors that will operate say that going in and draining the cysts and then filling them with a fibrin glue relieves the many symptoms and they won't grow back. The cysts can also become large enough and as they continue to press against the spine it can weaken the spine, which I'm sure is of some importance to the overall health of the spine.

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I was so surprised to find someone else with multiple tarlov cysts and the weird/horrific nerve symptoms that come with it. It started four years ago with tingling at different times in different places, arms, legs, feet, face, head, and more. That progressed to the feeling of large bugs crawling in my ear, that could only be stopped with pain medication. From that to searing knife pain in the ear. Neurologists had brain MRI and found nothing. Pain dr had neck MRI and found multiple tarlov cysts on cervical spine., along with arthritis and a spur. The ringing in my ears is so loud, but had hearing tested by ENT and it's fine. Also have all the symptoms of trigeminal neuralgia on one side of the face and is beginning on other side. Unbearable pain, sharp zapping from the top of my head to eyes nose ears and face.
I am sorry to hear of your pain as I can relate.
I would be very interested if you have found any relief, or if you know if there is any way to slow down the growth or progression of the tarlov cysts.
Thank you for any response.

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This is an interesting discussion about Tarlov cysts. While myrarespine2's cysts are in the cervical spine, this article about lumbar spine cysts shares a bit about one spine specialist's treatment approach to this type of cyst:( Lumbar Spine Cysts ).

We hope this information helps, and we look forward to hearing more from people who have this same type of rare spinal cyst.

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My MRI shows the cysts as well but the doctors never said a word about them. The only way I knew they were there was looking at my MRI results

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