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I was diagnosed with Tarlov's Disease seven months ago. I saw doctor yesterday and was impressed and have gained little hope that he will be able to help me. I know sacral perineural cysts are rare, but I could not be the only one to have one of these, am I? What is the treatment for sacral perineural cysts?

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You are right, Tarlov cysts also called sacral perineural cysts, are relatively rare. They are believed to be congenital, not from trauma, although not much is known about their natural history. Most cases are asymptomatic, so the cysts have been found incidentally on MRI. Sometimes cysts do grow and cause new symptoms, usually sacral or leg pain because nerve root compression. I think that they can be treated surgically. I am not sure what are other possibilities; you should discus this with your doctor.
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I too have been diagnosed with Tarlov Cysts. I am anxious to find others that think these Cysts are problematic and not an (incidental finding on their MRI). Treatment of the these Cysts is controversial. Please reply. I am curious how many Tarlovians are out there. Thanks
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i as well have a tarlov cyst, it was found 3 years ago. i have been told it can cause pain and problems, i have many dofferent back problems so it is hard to rell if it is the tarlov cyst, the doctors thinks it is but not qualified to operate on this, not sure what the future holds and i am young so it is kind of scarry, i do hurt in the are and have alot of strange feelings in both legs and they go to sleep easy as well as they feel kinda numb when i walk, lots of different types of pains from the waist down and with no apparent cause but they will go away for no reason as well, i have had many steriond injections in the spine, i do not like these, i am sensitive to the side effects, they only last for a week or two but really hard to deal with. i hope i can help some one with this mystery problem, i have had many oppions and they do vary from doc to doc but i think it is no more of a problem than a nuisence.
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I recently found that I have a perineural cyst at the L5 level tucked up under my facet. It affects my right hip and leg with tingling to my toes. I tried the spinal injections and found it helped some but not long lasting. I also tried to just treat it with a 5 day course of decadron tablets and that worked just as well and was less costly. This is my course of pain relief if necessary several times a year. This was suggested by my neurosurgeon. I am 50 and it has affected my activity level which has been an adjustment. I have a neighbor who had surgery on hers and is now in constant pain. She is having a pain pump put in to help ease some of the chronic pain. I have decided to live without any surgical intervention as long as I can. Best of luck with those who have it... no quick fix with this problem.
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:'( I have been diagnosed with Tarlov cysts since 2005. I've had the symtomatic pain for much longer then that. When I finally got to see a neurologist he found that I had 2 TC at S2 that were 2cm. I have too many symtoms to list here but I do have the same as some above mentioned. Through the Tarlov Cysts group (a support group) I found Dr. Donlin Long at Johns Hopkins. He is very knowlegable in Tarlov Cysts. I've had 2 procedures done at S2 with no results. Just last year they did an asperation at 2 upper level cysts. I intend to get back to Dr. Long regarding oblideration of both cysts at S2. Must stay in bed for 1 month and 6 months recovery. I am 62 and I have been disabled from these for the last 5 years. I had planned on working until I was 65. Not going to happen. I hope that this info has helped most people with TC's. I strongly urge you to look into the support group.
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hi I was also diagnosed with tarlov's disease a week ago but i have had pain for a while. I am interested in learning anything I can to help with the pain not very many doctors know what they are talking about. Please help.
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I am new to this so excuse me. I was diagnosed a week ago but I am experienceing a signifacant amount of pain. I was Hurt at work when I picked up a heavy tray of dishes and for awhile they thought it was muscle spazams, I then found a new doctor and they did an MRI this is when they found the Tarlov Cyst. My doctor didnt even know what it was he googled it, he said dont worry surgery will take care of it. My employer is giving me a lot of problems infact they told me i needed to go back to work for 3 hours a day but put me on the evening shift. they know I can not work in the evening because of kids and transportation. I would have to walk a qaurter of a mile to work and then 4 mile home at 9 pm. They said if I dont come then they will take away some of my workers comp benifets. I am 29 I have 3 children 10,6,and 4. Sometimes I can't even bare to talk to them I am in so much pain. A lawyer wont help me becasue it isn't enough money for them and I am feeling alone, scared, and depressed. If anyone can lend a helping suggestion please I beg of you. I have lower and upper back pain, muscle spazams, numbness in my right leg and abdominal pain. I also have problems with my bowels Please help.
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mmaha4 I am also new to this I was looking up Tarlov Cyst and I came across this site and read what you posted and I just had to send you a relpy I was also hurt at work and i have been off work for over a year. My MRI result showed an incidental finding of the Tarlov Cyst which my doctors have told me but acted like it was no biggie. I have had some major pain n my paick upper and lower and the pain sometimes keeps me in bed. I have children also and I do know what you mean when you say that sometimes you just dont feel like talking. With no result or help from anyone i have now turned to the internet for help. THATS VERY SAD THAT IT HAS TO COME TO THIS IN ORDER TO GET HELP.... I have no answers yet as to what all I can do to help get rid of some of this pain but I seen your post was done in Aug. 2009 so I was curious if you have any answers yet? Work comp. has gave me problems also so i feel your pain. I have read so many things today about this and was curious to know can Tarlov Cyst be caused from trauma or is it develpmental?? please help.....
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Rose09 did the workmans comp deny you becasue of the cyst or are they saying that it is a preexisting condition. I am having trouble right now because i had Dr. fredibaum from missouri contact wasnt very pleasant but I think it might help he said that my cyst was big, on the right side, and is causing bone erosion already. he needs a sacral MRI. I did apply for disability and maybe that might help I dont know i am so desparate. Rose if you would like I would love to talk to you one on one my email is maybe we can help each other. I just want to be normal again. Oh also I wanted to ask if anyone has had some injections for a SI joint inflamation becasue that is what my doctors swear it is, and if these injections will effect the cyst. And I am not talking about the injection to remove the fluid from the cyst.

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If you ask me it's very sad to see that there is not enough information for Canadians on this illness. The US seems to be the only place to go for surgery and specialist info, but at the same time I have never heard of any provincial health care plan covering these surgeries. If you are one of the rare cases that has been covered by your Canadian Health Coverage, I would love to know!

I was diagnosed with two cervical Tarlov Cysts (Largest 1cm) in March of this year (2010). Then I was diagnosed with what has been called a Giant Meningeal Sacral Cyst (5 X 1.6 x 7cm). Since that time I have been on an amazing and enlightening journey. One that has brought me so much information that I now feel confident of what to do to fix the problem.

I have seen reference here to Dr. Long and I too have spoken with him and gained some information that I consider to be quite valuable. However, personally I would NEVER, and I mean NEVER have the cyst aspirated and filled with fibrin glue. Why? Not because I don't appreciate Dr. Longs efforts and commitment, but because think about it. GLUE. That's exactly what it is, a form of glue. From my research I found many cases (Straight Talk Tarlov Cysts) where Tarlov Patients have had this treatment done and in many cases the treatment accomplished nothing. From what I've learned it is not a traditionally successful choice. So, if you have your cyst aspirated and refilled with GLUE, what do you do if this doesn't work? Now your Cyst is full of glue! How does another Doctor work around that?

Dr. Feigenbaum of Kansas City (Also referred to as Dr. F), Dr. Henderson of Washington and many others offer the surgical route. Their surgery, as with any surgery, including aspiration, comes with risk. We are talking about our spinal cords, so yeah there are major risks associated with any treatments we may attempt. If let's say Dr. F chooses to do your Tarlov surgery AFTER you've had GLUE injected how much is that risk increased? He has to remove the glue to reach the nerve roots and do what is necessary. Wouldn't you think it would be less of a surgical risk to NOT have to deal with GLUE as well as the sensitive and fragile spinal cord and cyst itself? When I did my research, asked my questions, for me it was a no brainer. No glue!

Dr. Keirnan Murphy, a Neuroradiologist previously of John Hopkins, who is now employed with Toronto Western Hospital has applied to the Canadian FDA for approval to use of Fibrin Glue for Tarlov treatment. Personally, I'm hoping Canada maintains its conservative medical approach and doesn't approve this application. At least not until other treatment options become more accessible to Canadian Tarlov Cyst sufferers.

In my journey I've come across and read about some pretty amazing people. They've helped me to learn and understand my illness, while also leading to me to look in other directions for answers. Unfortunately for me though, my regular family physician for the past ten years is not one of them.

In July of 2005 I was involved in severe MVA when a straight truck T-Boned my friends car where I was a passenger. In the beginning I thought I was fine with just a few mild aches and pains. But then, when I would go to Physiotherapy I was able to walk in, but not out. I had to be carried home regularly and would remain in bed for a day or two totally unable to move my legs. I approached my physician for approval of a walker for such times and even though I do agree now with his refusal, I do not understand why he didn't feel the need to order an MRI. He instead ordered a bone scan. Something that would only show bone injury and a test that he knew was very limited in scope. That was the beginning of five years of being ignored as the pains grew, symptoms increased and suffering continued. When I was diagnosed this year with the Meningeal Cyst and with Cauda Equina Syndrome, that quite easily explained my symptoms, I walked into his office and quite directly told him I was very angry and hurt by his lack of interest in my health. I then swiftly changed Doctors. Now I am what you could call "more assertive" and more involved in my own care. Now I ask questions, I annoy and I push for understanding.

I saw a comment on here where someone said these things are not caused by trauma. Well I say they are, and so does the majority of Specialists who took the time and maintained the determination to understand as much as they can about these cysts.

I've seen Orthopedic Surgeons, Neurologists and Physicians who without experience flippantly claimed these cysts are NOT symptomatic. Well I say tell my legs, butt, hips and bladder that, they disagree wholeheartedly! Others have said they are not caused by trauma, when five minutes later they look at me and admit they do not have a lot of experience with these cysts and are unable to help me. Don't you think it's funny how both of those sentences can come from the same person within a matter of a few minutes? Most of the time I think it's just plain arrogance that makes any Doctor decline from admitting they know nothing about your illness, so instead they pretend and walk around the topic till they reach a NO.

I don't know about you, but I know I'm angry. I'm fed up with having to deal with arrogance, ignorance and lack of interest. That's why now I email my specialist of choice when something happens concerning my cysts. He is reachable, supported by a caring staff and dedicated to the treatment of Tarlov and associated cysts. I now feel relief everyday knowing I am in good hands.

As for Canada? I think it's time to rock the boat and push for something that should have been handed to us. When the time comes that the head of Neurosurgery, from Toronto Western Hospital, one of the largest Neurosurgery Departments in Canada sends your Doctor a fax stating he can not help this patient, I think that says a lot of what Canada has to offer us.

All we can do is hope it gets better soon for Canadians, and do whatever we can to help make it better for us Canadians....
I wish you all luck on your journey. But if there is anything I would like to say to anyone here..... you count and you deserve to live a life without pain, so dig, push, question and even demand answers! That's the only way we will get anywhere in this messed up system.....
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what is the name of the specialist you are seing?
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I was browsing old tarlov cyst posts and i was wondering if you'd gotten any assistance with your diagnosis? i too am Canadian with tarlov cysts.  ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

i'd love to know whats been happening and if you've managed t get any help...

I look forward to hearing from you....
sherri

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I too was also diagnosed with Tarlov's Disease, about 2 yrs ago.  I have since developed another, I don't know if there are treatments for them, I so know that mine are symptomatic.  They cause me a great deal of pain, at times, even numbness and weakness too.  You can google Tarlov Cyst, there is a foundation for them.  It was very informative.  Just know that, yes they are rare, but, you are not alone.
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I also feel ignored at this stage. As if people wont believe me when i tell them my symptoms. I recently spent a week in hospital being scanned, having a mri etc, but what happened - i got discharged with pain killers for 7 days. they dont even help. I am just at the beginning of this journey, Quite dishartened at this stage.
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