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I am waiting on an appointment with Dr F but in Dallas Texas. I am hoping he can give me hope. We have a very similar story. I was dig with fibre following a car wreck. Years later, after continuous complaints to my GO about leg pain, he ordered an M R I. I have three cyst on my lower spine. One large and two small. It is affecting me from the waste down.
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If you have not found help yet at the Tarlov Cyst Disease Foundation (TCDF) You can look them up & get all sorts of wonderful & helpful information there. My daughter is only 15 & is suffering from this horrible disease & it's so frustrating dealing with doctors that don't have a clue or understand the disease. Best wishes, Annie
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Hello I just had surgery on a C-8 cervical perineural/tarlov cyst and feel great.....4-5 weeks out from surgery. There is a doctor in Dallas who treats these cysts. Dr Fdank Fdigenbaum. I live out of state so had to stay in Dallas 2 weeks...mostly in a hotel. This doc has websites I encouragd you to look up.....it is to my understanding he is the only doc in the US who does this surgery.I do work in the medical field and have educated myself on this problem because it was causing problems with my work.


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I believe this! I have had 3 children but I have never suffered so much. I have gotten my MRI results. A 7mms cyst on C7 T1. I have never felt such intense unrelenting heavy pain. I was deleterious and could not think straight. I went to the ER 3 times and they could find nothing and sent me home after a useless p ain shot. Oxytocin did zip. It is still there and constantly a dull ache. Rest and little movement has so far kept it at bay. I pray they will help me now with the MRI results but I can hardly get in to see my doctor, the ACA Medical is a danger to society and the suffering.
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Has anyone had any experience with tarlov cysts and pregnancy? We are planning on trying this year and I am worried if this will impact labour? Mine is in my sacrum and 6x3x2cm. Everyone tells me it is not it causing my symptoms but no other explanation. I have no had an accident so assume I have always had it but it has grown and started causing symptoms.
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My experience; started with numbness down side of right leg and foot.  The MRI suggested a Tarlov or arachnoid cyst in the sacral area 5x2x1cm.  Neural surgeon said to leave it alone as it probably is not causing the neuropathy.  Ten years later and the number is worse, weakness in the leg, severe sciatica, and bladder and bowel problems, headaches.  Another MRI suggested perineural cyst or Tarlov, 9x2x3cm.  The Tarlov cyst Foundation, says it is pretty rare and most doctors won't treat Tarlov cyst since most are asymptomatic.  Nerves are in the cyst so cant just drain it.  Yesterday went to see Dr. Frank Feigenbaum in Dallas.  The Foundation recommended him as one of only two neurosurgeons who specialize in perineural and Tarlov cyst.  He treats 1000 a year, said local surgeons may treat 1-2 a year. Check out website of Tarlov Cyst Foundation, Center of rare diseases, and nation neural surgeons association.  I came to believe the symptomatic cyst are rare, only 2 surgeons specialize. Dr Feigenbaum suggested surgery and the pain is so bad, local doctors seem ignorant of problem.  He takes Medicare and insurance so I'm going to try it, see what happens.

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Hi I just read your post and so many others. I was just diagnosed and wondered how you are doing?
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Thank you so much for sharing. I have a very similar situation & my research has also led me to Dr. Feigenbaum's site as well. I haven't contacted him yet. Your post might have just been the nudge I needed. A confirmation of sorts.....

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I'd love to chat with you more!

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I recently had surgery to repair a ruptured cyst. I have numerous cysts that hopefully will remain stable. Mine caused significant vision and hearing problems as well as headache. MRI can be used to diagnose the cysts, but a specialized myelogram may be needed to find the leak. See a neurologist for diagnosis and then a neurosurgeon for treatment. There is nothing to be afraid of and no need to be in pain.
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Hi, I just wanted to ask you where abouts your cysts are? I have one on my C3 nerve root and like you I have headaches, vision problems (I already had double vision but it's now worse), and hearing problems (an intense sensitivity to noise). I also have neck stiffness and pain, nausea and weakness/ a lack of energy. I have been ill and mostly bedbound for 2 years now and I'm desperate to get the help I need to get better.
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Did you have surgery and if so was it successful? I may have several cervical, lumbar and maybe in the lower back.
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How did your surgery work out?
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Hello,
I am a disabled veteran & have Tarlov Cysts too! Trying to figure out my upper back/neck area, while I'm waiting on surgery for my cysts located in my sacrum/pelvic area. I was curious as to your current situation with all your cysts, especially the neck/upper back ones. Did you get surgery? If so, how did it go and who did you have surgery with? Any information would help! Hope your doing alright and look forward to hearing from you!
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Whoever you are, thank you so much for commenting. I had an MRI of my cervical spine in May 2015. They found not only facet joint arthropy at 3 levels of my cervical spine, but Bilateral perineural nerve root sheath cysts at the C5 and C6 levels. Recently I've been experiencing such sever head pain, I can barely function. I work in the medical billing field, was a coder of 5 providers for a privately owned practice and am resilient when it comes to researching and kicking a doctors door in for a real answer. Doctors have diagnosed me with fibromyalgia, stating nothing in my MRI would cause my severe head and neck pain. I fell in 2013 smacked my back, neck and head on the concrete. Then the pain has been on/off this week it's lingering and I have no range of motion and feel gawd awful ill! I will not give up on getting a real resolution to my horrific pain and the sheer dismissiveness of being told I have fibromyalgia. It's a lie. I know what is wrong now. I need a trained surgeon and one who CARES. I will be prepared by my next visit with real research expecting a real answer and solution.
Thank you again.
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