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Hello! Is there anybody who could tell me something about perineural cysts? My mom has been found one during MRI. I am so concerned about her. What does this mean? Are they tumors? Can they cause death? AM I also in danger? Thx for the info!

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Hi! These perineural cysts you are talking about are also called Tarlov’s cysts and they are suspected to be heredity. They are morbid enlargement and they grow, and some books identify them as tumors because of that. But, these cysts grow because of the pressure of spinal fluid within them, not through uncontrolled cell division as in the case of malignant cancer. These cysts can cause severe pain and damage distant organs, such as the bladder and the brain, by affecting the flow of cerebrospinal fluid and nerve energy. If the cysts are not treated successfully, they can cause constant pain that can be so string that a person may even consider suicide. A person in this stage of the disease can die from the stress of the suffering and from the pain medications if they get hepatitis.
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Now wasn't that encouraging, "bellomo"!!! >:( Are you a medical professional??? Ïf so, you have a bedside manner that leaves a lot to be desired... 8-| I have had multiple 12 to 15) perineural cysts in my upper spine for as long as 10 years (diagnosed about 5 years ago). Drs. couldn't tell me a lot (b/c they don't know a lot either) other than that they probably were due to car accident injuries and are the cause of sudden intense pain which lasts a few days to a couple of weeks that they think happens when one or more cysts rupture. Apparently some people have no symptoms at all. There is always the possibility of loss of function in my lower body, but that has not happened, and I will get the appropriate surgery IF that ever does occur. I am not a medical professional but none of my research has led me to the conclusions you have come to. Anyone who has chronic pain, whether from perineural cysts or from any other cause, should see a good pain specialist who can help pain to be at least bearable.
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I agree with cig50, bellomo's reply is very scary! Don't do that, please. Health issues worry a lot of people and that's not fair to them to do that to them. I have a perineurial, aka Tarlov, cyst in my sacral area (the bottom end of the spine, the part you sit on). I have done research, also. I found the Tarlov Cyst Foundation website very helpful. Tarlov cysts are perineurial cysts which contain cerebrospinal fluid (CSF) and the wall has nerve fibers attached. Tarlov cysts are usually found in the sacral area. They can cause pain. I've never heard of them bursting. I would imagine bursting would cause a severe headache as loss of CSF can cause a really bad headache. They are not always caused by accidents but can be naturally occurring in that particular person and have no cause. They are usually not symptomatic but a small percentage of people do get symptoms of nerve compression if it gets big enough or you are in the right body position to cause it to press on a nerve. If you are worried, take a peak at the Tarlov Cyst Foundation website, they have some very helpful links and very thoroughly explain symptoms, causes, treatments, and where to find good doctors. Tarlov cysts have been classified as a rare disease, so I encourage anyone to check out the foundation's website and contact them or one of the doctor's they list if you have more questions. There are not that many doctors in this country who believe that these cysts cause any problems and it is hard to get them to believe, so be prepared the next time you see your own doctor about this and bring printouts or website info when you see your doctor to try to get them to do something to help you. If they won't, ask for a referral to someone who will.
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I had chronic pain for a long time due to one of these cysts.One day the cyst bursted.I had an extremely high unbearable fever for about 3 days then after the fever subsided I was pain free and have been pain free since.
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First of all, medicine is serious, it is not something to sugarcoat. You wouldn't want a doctor to tell you that you have cancer, but dont worry, you'll be okay if the doctor is positive you will die. Unless you like being lied to anyway... If you dont like what someone tells you regarding a specific condition or disease, then dont ask because you probably wont like the answer, especially if it is someone who doesnt believe in sugarcoating things, such as myself, and another thing, that person may have not been a medical professional, but whose the real for asking for medical advise on the internet? Maybe you should ask the doctor who diagnosed you with the cyst, afterall, if he knows what it is, he should be able to educate you more formally, if not, i would suggest searching for a new doctor who can educate you because that doctor is a quack.
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Every once in awhile I visit this site just to see who's arguing about what, and how many people are being effected by the lack of "definitive" information available on Tarlov and associated cysts. This is a diagnosis that to this day is being debated by medical specialists. So as much as we would all love to have answers, or give answers, not many people can.

I was diagnosed with two cervical Tarlov cysts following a motor vehicle accident in January of this year. The headaches, the neck pain and the ongoing and increasing nerve pain has proven that these cysts (or at least one of them), are in fact symptomatic. Following that diagnosis I began researching this disorder and found out that if there is one cyst, there is a good chance there are more. And it was true, at least for me. Two months later I was diagnosed with what is considered to be one of the larger sacral Tarlov Cysts and it has even caused Cauda Equina Syndrome (severe nerve compression on the nerves exiting the spinal cord) and major sacral bone erosion. This cyst is believed to have been caused by another MVA I was in in 2005 that has since been bringing on more and more pain and problems. I was diagnosed with Fibromyalgia after that accident and since that diagnosis no tests were ever done to check for any other possible causes for my pain. Everything was thrown into what I call the "Fibro Bucket".

Thankfully now I know what is actually wrong, but the options and information on treatments is very limited. I live in Ontario, Canada and the information on this diagnosis is so limited here that if you do not have strong research skills you could easily be left out in the cold. The first thing my Doctor said, and I consider her to be one of the few good one's was "I'm sorry but I have no idea of what these are. I've never heard of them". I appreciated her honesty, which at the best of times is hard to come by. Luckily for me, and I've been told since, for her as well, I am a trained and experienced journalist with a strong passion for research. I taught her about this illness and I've learned more and more since then.

I found a Doctor, a specialist actually, who had recently moved to Toronto from the States. I found his information on the Tarlov Associations website and contacted him directly. At the time all I knew about was the Cervical Cysts, and with them being so rare I think it peaked his curiosity. He emailed me back right away and said to drop off my MRI's. I did and several weeks later he wrote back saying they are perineural cysts that could cause head and neck pain, and that he would not treat them as they were too close to the left vertebral artery. He considered this too be too risky. This was all I got. Just that, which to me made me even more scared than I began with. I tried reaching him multiple times afterward and never did receive a return call or email. I was left out in the cold. That was when I got angry and started to reach out to almost every known specialist in the States and I found many more answers. Most of the answers I found are very conflicting a can differ largely from one specialist to another.

Many Doctors claim to know what these things are, but I have found that all they've been able to offer me is more confusion. I strongly believe that your own research skills are your best bet at finding your own answers. I've found my answer and the best possible solution for me is waiting in Kansas City with Dr. Feigenbaum. Surgery is certainly not the answer for everyone, but for me it is the only one. Without it I will eventually lose control of my legs, bladder and bowels and I will not accept that as an option. At least surgery gives me hope.

I wish you all the best and if I can help, don't hesitate to ask.....
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I have been diagnosed with perineural cysts, more prevalent on the left, but have some on the right. They are located on the UPPER spine, causing me excruciating pain, with the pain radiating down my arm, into my fingers and hand, making pain like someone is pounding on my "funny" bone all the time. I got one reply from a so called "neurosurgeon" saying he couldn't do anything for me. I know, there has to be someone somewhere that can tell me more about this. The pain is so bad sometimes, it makes me really frustrated. If anyone has any suggestions, please tell me. I do have good insurance, so that wouldn't be a problem.
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I don't know who the Neurosurgeon was that you consulted with, but I have a feeling it wasn't Dr. Frank Feigenbaum, of Midwest Neurosugery in Kansas City, MO. To my knowledge he has never said he couldn't treat any cyst, but I could be wrong.

I have two cervical Cysts that I was told couldn't be treated because they were too close to my left vertebral artery, but he says he can treat them and his words give me hope. I also have a giant Meningeal cyst in my sacral area and he is going to treat that as well.

Go to the Tarlov Cyst Association Website and look at the info they have available there. They have been an amazing resource throughout my journey and Dr. Feigenbaum and his staff have been my only active support for experienced answers and support.

Be grateful that you have great insurance to support you. I wish I could say the same. I'm in the middle of an Insurance battle here in Ontario Canada, as my cysts were made symptomatic due to 2 separate motor vehicle accidents. Anything insurance based here is a nightmare and there is no treatment available in Canada at all for this diagnosis.

There's also a site called straight talk tarlov cysts and the people there are great at providing support based on experience. Check them out. I'm sure they'd be happy to help you learn as we all have.

Good luck with your journey and I wish you all the best.
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Wow your story sounds just like mine!i have the largest tarlov cyst my neuro has ever seen it is 7.5x6.8 cm on mri spanning from l2 to the base of my tailbone i have massive sacrum erosion bulgomg discs and.spinal stenosis now.i am in major pain and have had.3 surgeries thus year.i was diagnosed with fibro as well which severelydelayed proper diagnosis.i am 33 years old and a mother of 4.they are considering a shunt now but it is very risky. I need to be in control of my healthcare again i feel like a test rat:(plz contact me i have never spoke with anyone with this..
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Hi Linz?

I can just imagine how good it feels to read a story written by someone else, that sounds so much like my own!! Been there, done that!! lol I'm happy you've found me, and I hope finding me brings you the same relief I experienced when I found a Cyster, to relate to..

 ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use


and my blog is at www.canadiancitizendailybattles.blogspot.com there's a lot of info there... even  MRI images of my sacral and cervical cysts...

I'd love to chat and hear your story... I look forward to hearing from you soon!!

Hugs,
Sherri
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Wow I just told my fam about u but me being the skeptic I am I wasnt syre I would ever hear back:)im going to your blog now thank u x1000 huz back,linz
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I took an MRI and it is showing a Tarlov Cyst size of 8cm X 4cm X 3cm. I am concerned about the size, it has already caused L4 & L5 Disc Damages. I wonder if it is going to grow longer, I am supposed to see a Neurosurgeon this week.
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I have had one of these on the lower part of my spine I am 17 it causes a lot of pain in shens mostly in only one leg foot pain back pain sometimes affects bladder it cause me to be in pain and I became unable to walk my legs had feelin but they were like rubber and wouldn't support me I had to have surgery to get it removed was hers the same ? Because I have another one
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Just discovered today I have numerous perinueral cycsts from my neck to lower thoracic spine. I've been told these are not malignant but to keep on eye on them as they can become an issue if they get too large. I have one that is 6cm, apparently very large for these cysts, but I am asymptomatic at this time. Hope this helps.
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