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Treatment of Tarlov Cyst Disease

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Rare Disease Report

Rare Disease Report

Күн бұрын

Tarlov/perineural cysts are dilations of the nerve root sheaths filled with cerebrospinal fluid. Most Tarlov cysts are located in the sacral regions of the spine (95% of cases) where they can be responsible for a multitude of symptoms, including excruciating back pain. Due to their location (and its limited recognition) most surgeons are reluctant to perform surgery.
In this exclusive interview with Rare Disease Report, Reta Honey Hiers, executive director and president of the Tarlov Cyst Disease Foundation talks about the treatment and the few neurosurgeons in the world who are experienced in treatment the condition.
For more information, visit www.tarlovcystfoundation.org

Пікірлер: 26
@trythinadavison604
@trythinadavison604 2 жыл бұрын
Thank you
@nursejulie3636
@nursejulie3636 5 жыл бұрын
Good evening Howard your smarter than me I need to look this up since I’m only a Lvn which is a license vocational nurse not a registered nurse either way never heard of this stuff helping with these cyst. Hope all is well with your health.
@honerdcouster8723
@honerdcouster8723 5 жыл бұрын
Your wrong I'm not smart but you are. I'm a little lucky that's all. I diagnosed my self after seeing a survivor video. KZfaq is the power that could revolutionize heath even so. Im amazed how you got diagnosed. Doctors are carefully trained to ignore them. If this true in your case hats off to your doctor and your luck.
@honerdcouster8723
@honerdcouster8723 5 жыл бұрын
Your right this my speculation. I have read abour epidural injections for tarlov cyst. But not much more than that. I believe in injections but most people dont. For good reason, but you seem to have good imaging. I never had that. What I do have is a doctor who only puts the needle where I tell her. It's been along process somehow with each shot I got better at it For you I hope you don't have a sacral tarlov. These are generally acknowledged as the worst ones. From my experience their monsters. Their smart stealthy always one step ahead.They are liars they toy with imaging can do anything. Linked to not just marfan but. Also autism ADHD schizophrenia willaims syndrome Cystic hygroma I counted forty other neurological conditions. See what I mean. Not much known about it. But it's time in the sun is coming
@nursejulie3636
@nursejulie3636 5 жыл бұрын
I know Marifan syndrome is link to tarlov cyst from what I learn. 😊
@honerdcouster8723
@honerdcouster8723 5 жыл бұрын
Yes there is a link look up marfan and tarlov cyst surgery. I love finding new things. God I hope you find your way. Im pretty sure luck will accompany this knowledge. Julie
@soniachambers6460
@soniachambers6460 5 жыл бұрын
Yes, I have both!
@honerdcouster8723
@honerdcouster8723 5 жыл бұрын
But everyone with fibromyalgia has a sacral tarlov cyst. Rare disease status flies out the window.
@kelliv2995
@kelliv2995 5 жыл бұрын
Honerd Couster the experts obviously disagree. Where’s your medical degree?
@honerdcouster8723
@honerdcouster8723 5 жыл бұрын
@@kelliv2995 Thanks for your response. Are you speaking for the 3 experts on Earth? I have fibromyalgia many shots latter I looked up spinal cysts. Let me tell ya something there is no way fibromyalgia can be any thing else but the mighty TARLOV CYST in the sacrum. Someone in feingenbaums office admitted as much. Yes I'm just a patient. At one point the lowest of such. When I went to the nuerologist he said what's that? He said he didn't believe me and doesn't believe Dr Google. 2 months latter I had my diagnosis. What about you? Are you a doctor or stricken your self,? Either way there's stuff you should know feel free to ask.
@nursejulie3636
@nursejulie3636 5 жыл бұрын
I’m not dx with fibro and my Tarlov cyst are in c6 spine and thoracic spine area. I have eight of them and stuck with meds. Here in Southern ca with no help
@honerdcouster8723
@honerdcouster8723 5 жыл бұрын
@@nursejulie3636 I know the feeling. Find a good bi-laterlist injectionist.
@nursejulie3636
@nursejulie3636 5 жыл бұрын
Honerd Couster thank u so much for your advice. It’s gets so old when the docs look at u like your crazy and I’m in the medical field doesn’t matter like I’m needy or something 😆
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