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Tarlov Cyst Disease

Sandy8
0 Recommendations

Anyone out there with Tarlov Cyst Disease? What a frustrating experience.. Most doctors have never heard of it and I'm convinced thousands of people are misdiagnosed... The most common complaint is extreme pain when sitting... My doctor is one of about 10 in the country that has knowledge of the condition. There is no current treatments with a 100% success rate... I've tried one of them and have been able to bring my pain to a much lower level but I still live on drugs to be able to walk!
Would love to connect with others that may have more information on this disease... Perhaps most everyone reading this site is in the same boat with an orphan disease of their own to deal with but I was hoping it might ring a bell, help someone, cause someone to know of others they could send this way etc...

Explore topics in this discussion:

Exercise Surgery Acid reflux Back pain Anxiety Hernia Degenerative disc disease Lorcet Fibromyalgia Stress Hiatal hernia Sciatica Advil Fractures Emphysema Stroke Physical therapy Weakness Acetaminophen Hydrotherapy Cancer Morphine Pneumonia Herniated disc Arthritis Incontinence Gallstones Tarlov cysts Bursitis Pain Depression Paralysis

43 replies

moge

Hello........
This seems to be a good thread to post an idea that popped up in my head the other day. I was thinking about this community, how there seemed to be so many here whose dx so complicated, etc.... finding somene who's been there is almost impossible.

Here's my idea........ no problem if there is no interest.......

Those who are willing and interested would sign up for the research support group.

I'll give examples how it would work, if formed we'd work out the details.

Each member would agree to use one hour of their best research skill to find all the data they can find on the subjects disease.

Each month or every two weeks, a new subject would be selected.

In this group so not to repeat efforts, one would specifically research medications, another treatments, another support groups in the U.S., another outside the U.S.

By a set time the subject receipient would have a wealth of the latest information to research and review.

Fresh eyes on a problem. Someone else may see something that has been in front of my eyes all along........

Would this be too hard and complicated to organize and maintain? I don't know.....

Just a thought.........

moge

Suest

I have 2 tarlov cysts. The one at s2 is about the size of a quarter and the one at s3 is 3 mm. I have been to 5 doctors in my county about them and had to tell all of them what they were. I was sent to 2 orthapedists outside of the county and was told that Tarlov Cysts never cause any symptoms. All my back pain is in the s2 area. I can't sit for long, I can't stand for long and walking has become almost impossible. I live on narcotics and even with them my pain level is up around an 8 or 9 on a scale of 1-10. Even my pain doctor is becoming suspisious. I just downloaded a bunch of info from tarlovcyst.net to bring to all my doctors. I suffer from incontience, so I rarely go out because of the embarrasment. I have found doctors who treat TC's at John Hopkins in Baltimore but I am on North Carolina medicaid for disability and cannot get treatment outside the state. I have been in touch with both Wake Forrest Baptist Medical Center, Bowman Gray and Duke University Medical Center, 2 of the best hospitals in the country, but they don't treat Tarlov Cysts.

You said you had a treatment that reduced your pain, can you tell me which one you had? It is reaching a point I am either going to have to get stronger doses of Pain medication or take a morgage on my house to go to John Hopkins to get some help. My pain was about a 5 for 3 years on the meds, but now it's just so bad. I don't think it is the meds not working, I think the cyst has enlarged again.

When mine were first diagnosed they were both 3mm and I was asymptomatic. All of a sudden I started saying something has changed in my back, the pain is much worse. That's when the MRI showed the one being about the size of a quarter. And now again I think it is the pain that has changed.

I am so discouraged.


I am brand new here, I am sorry this is so long, but sometimes it just helps emotionally to vent. My grown kids and significant other keep telling me that my pain is either in my head or it is because I am about 60lbs overweight and it is the facet arthritis, the degenerative disk disease or the herniated disk, so I can't talk to them about my pain or even ask for help. My significant other is telling me he is going to leave because I won't do the housework he says he has everything I have except for the TC's and he isn't in pain. When I tell him it' not that I won't do housework, its because I can't and all he can say is what are you doing about it.

Again thanks for letting me vent.
Sue

hkirkwood

I do not have the same disorder that you do, and thankfully pain is not a big issue for me right now, but I can relate to your sense of isolation. I've had a week of small incidents, none huge or a big deal, but they're all pling on top of one another and I'm feeling REALLY frustrated with my life right now. And like you said, I can't talk to anyone about it. I'm single so there's no one around to help. My mom, who lives in Europe, acts like this is all in my head and I just need to toughen up, so I can't vent to her. And, after years of chronic health problems, I've learned you don't vent to friends unless things are absolutely dire - otherwise no one can stand to be around you because you seem like a big downer. They don't know how to respond. I think that's one of the biggest challenges to having something rare and something chronic - people don't understand an illness that doesn't go away. Recently a lady at my church faced a medical crisis and the whole place turned upside down to help out. And they should have because she needed it and her family needed it. But it was something they could understand - there was a problem and she went away to fix it and now it's fixed. I go away for medical treatment four times a year, and it isn't fixed and no one seems to really understand why I'm absent so much or why I don't volunteer for this or that. Oh I could rant all night, but anyway, the point is I understand what you mean when you say you can't tell anyone how you feel. I feel that way too - I'm frustrated no one understands, but I can't tell them how I feel really because after years and years, no one would be left.

LindaLoomis

I would like to second many of the comments made on this thread. Tarlov Cyst Disease is not my disorder, but many of the issues discussed here are common to us all with various other disorders. Perhaps someone at NORD can set up threads for common topics (some of which I know I may have inadvertently left out or failed to mention as I'm not personally affected):

Sense of isolation from others/the world
Problems with immediate family members
Lack of understanding from friends or acquaintances
Money issues for treatment
Insurance hassles (many aspects to this one)
Doctors who don't know a dang thing about your disorder and aren't particularly (intellectually) curious when you look like any other person on the street
Doctors who aren't helpful
The specialist who can or may be be enormously helpful to you is on the far side of the country
Pain (for some)
Frustration
Scientific literature sources (can you understand the technical material, what scientist is studying what nit of your own particular disorder)
Medications (tackling symptoms or really tackling the disorder?)
Clinical trials by the federal government, lack of them, or failed promise of them
Sympathy versus information (fighting back)
Being your own best advocate when your own personal disorder is *extremely* rare

Feel free to expand the list, contribute your input to make this a blog a desirable place to come and share...

FranMott

Hi Sandy:

I have Tarlov Cysts (TCs) too and completely understand what you are experiencing. I've found most good Neurosurgeons have heard of them and only a handful have successfully treated them. Some apparently can not be treated. The Tarlov cyst group the other responders to your post have mentioned is the best place I have found for all kinds of information and support. They seem to have identified the very few doctors in the country who have successfully treated these. They have a good sized group with lots of info on dealing with these and you can even find out how to contact those few doctors on the site. I have another (completely unrelated) rare disorder called von Hippel-Lindau (VHL) as well as the Tarlov Cysts. This genetic disorder causes me to grow lesions in my brain and spinal column too. These are called hemangioblastomas (some docs who are not familiar with VHL just call them hemangiomas). Sometimes these lesions appear to be cysts, although there is a tumor part to them somewhere. I am scanned with MRIs regularly to watch these and thus my TCs were discovered and misdiagnosed until recent years. I suspect/fear the reverse may be true for people being scanned for the TCs also: they may accidentally find a VHL lesion(s) or may even diagnose a VHL lesion as a TC. I hope we'll see info on TC Disease in the NORD collection soon. That, together with info from the Tarlov Cyst group, will be good to take to our doctors who usually need to be educated on the TCs. There's more info on VHL at www.vhl.org for you or any reader. It's important to get a correct diagnosis when you deal with anything rare. This is especially true with VHL because we can also get lesions in other parts of the body which can cause blindness, hearing loss, stroke, paralysis, renal cell cancer, etc. etc. Often such things can be avoided with careful screening and appropriately timed interventiuon. VHL currently has no cure either, and while certain lesions in certain spots can cause problems and pain similar to that caused by TCs, I have just as many pain issues with the TCs in my S-spine. Regrettably the VHL can result in life and death issues also. I hope this helps you or someone reading this.
Best Wishes,
Fran

Suest

I must admit I have one friend that I can talk to about my TC's. She also had a rare condition called Chiari and teathered spinal cord. She was like me, always in pain. She went to a pain doctor who perscribed a drug called Actiq. It is for terminal cancer patients and you are never supposed to be taken off the drug....In fact there are no instructions on how to take a patient off the drug. So, that is another thing we all have to be careful of, the drugs we take. Every time a doctor gives me a new drug, I go straight to the internet and look it up in several places, just to make sure it is safe for me. My friend had an opperation and is much better now, but still understands where I am coming from.
I remember one doctor who told me that: 1/ You are born with Tarlov Cysts. (I wasn't) 2/ They never change size. (Mine did) 3/ They never cause any symptoms. I argued with him and he said I would have to prove it. Then he proceeded to tell me a story about a TC which completely eroded the tail bone. Duh!!!!! You don't consider that a problem or symptom????? I guess some doctors just think they are god.

Sandy8

Sorry for the late post... I don't read this often as I'm a part of other groups. Feel free to email me direct anytime if you need a prompt conversation.
Sue... I hear the frustration in your note and I'm sorry that you are dealing with difficult doc's. They don't understand our disease AT ALL or they wouldn't fear or question helping us with our meds to regulate our pain. Mine is now managable but still difficult to function normally on most days. I have had an FGI with Dr. Richard Woodcock in Atlanta GA. I believe that this procedure along with mild pain drugs has changed my life back to living rather than laying around feeling sorry for myself. If you would like to hear more about this procedure, email me at sandy.roof@crossroadsconnect.com. Or, you can search under Dr. Woodcock on the Tarlov Cyst Support Group at Yahoo. I use to be a member of that group but I have somewhat left it do assist in a foundation that is being formed to raise awareness of our disease. We are hoping to get this foundation started and drive Medical research with the help of NORD and other agencies.
Fran... I'm sorry to hear of you dealing with TC's and the leision problem. Have you tried any form a treatment for the TC's in order to reduce some of your pain? You can email me too if you would like to learn more about my docs and treatments so far.
It is a long and painful road when you develop something rare but we have to keep the faith that someday a cure or a treatment with more positive results will be discovered.
Hoping you have a pain free day!

babbiejjb

I was just diagnosed with 2 tarlov Cysts. One at S1 and one at S2. I also have bulging disc at L4. They are going to try epidural shots in my back to help with pain but that is 2 months away. My doctor does not want to give me any pain pills. I am at my witts end. I also have Fibromyalgia which I thought at the time was painful enough. But I am in misery and getting no help. Any info would be helpful to me also as I go back to doctor on monday to fight for some relief. Is there any pills that are helping anyone for this????

Sharon

Linda,
I love your list so much that I decided to cut and paste and do a blog. I hope you don't mind. I am feeling of strong opinion today - that is good - some days I am to sick to think. So, I am taking your list to the blog section.
My illness is different from the one being discussed here - but do I have some comments for your list.
Wishing you peace, hope, and love,
Sharon

loves2dance

I too, have been diagnosed with a 2.2 cm Tarlov cyst in the sacrum. 3 years ago, I saw an orthopod for 6 mos. because of sharp leg pain while exercising. After being on anti-inflammatories for 6 months, and cortisone injections to the ankle and SI joint, he admitted that he had no idea what was wrong, and sent me to PT. After one PT visit, during which I told her that the exercises were really hurting me (she told me, "Oh, don't worry, just let the pain come out.."), my back pain quickly shot up to a 10. I became unable to sit at ALL, or stand still. My chiro sent me for MRIs, which showed a bulging disc at L4-5, and the Tarlov cyst. He referred me back to the ortho, who said not to come in, they didn't treat backs, and sent me to a back doctor, who wouldn't even see me until I had 3 epidural steroid injections. In the meantime, the only doctor who would speak to me was the chiro, who gave me his cell # and kept in touch with me at home. At this time, I was more or less completely bedridden, in severe pain. Then the chiro told me to call back the ortho, and tell him I needed to be seen THAT DAY. When he saw me, he realized something was terribly wrong, as I could barely walk. He immediately got me into see a neurosurgeon, where I had to lay on the waiting room floor for 30 minutes, as I still could not sit. The neurosurgeon told me he thought it was muscular, gave me muscle relaxers, and said that the cysts never cause a problem; I was probably born with them, and he could see no reason for the pain I was in; that I should go see my OB/GYN, because an ovarian cyst would be the only thing he could think of that would be causing this much pain(!) Said to go ahead and have the epidurals and see if they helped. After 3 epidurals, the anesthesiologist, who gave all 3 to me, said he was concerned, because I should be a lot better. So he made a call, and finally got me an appt at the back doctor for the next day. Once there, after xrays, that doctor told me (as I lay on the floor looking at the xray) that the pain was not all in my mind (!), that I had spondololisthesis, in which the disc was bulging because the actual vertebra had slipped forward. So he sent me to hydrotherapy, where I improved slightly, to the point where I could sit for 5 minutes at a time, a few times a day, although still very painfully. After 2 months of exercising in the pool every day for 2 hours, I returned to him. He told me, "Oh you're much better, keep doing what you're doing, and I'll see you in 2 more months." At this point, I had had it! I was virtually homebound, not able to stand still yet or sit; I hadn't been able to sit for a meal for three months, work or exercise normally. Then through a lucky encounter with my PCP, he sent me to a sports physician, who treated my back with prolotherapy. The first time I saw him, I had to get there lying down in the back of my husband's car, because I couldn't sit; the next time I went, 2 weeks later, I was able to drive myself--a 45 minute drive! He has been treating me for 1 1/2 years, now, and I am living a fairly normal life now, although I do still have pain. He is now referring me to a pain mgmt center, to find out exactly where the pain is coming from, but we are both having suspicions that it is the cyst that is causing this. From reading the other website recommended, I did see that some people have had success with taking L-Lysine. At this point, I will try anything, so I have been taking it for a few weeks now, and I am seeing a slight improvement. So, to finally answer your question, that is the only pill I have heard of for this condition.

LindaH1

Hi Fran,

I have 9 TC's and live in San Franicsco. I see from your member info that you live in Michigan. I probably will have to move back there, it is where I am from because my disease has progressed. Are there doctors in Michigan who you are seeing that deal with TC? If so would you share that information?

I'm sorry to hear of your complications with VHL and thank you for explaining that disease. I know of the frustration with the TC disease. It is frustrating. I had an appointment for FGI but was denied by insurance so am now facing the big, risky surgery or living with this disease - both options make me shudder.

Thank you
Best
Linda
lindalotus1@sbcglobal.net

jmh

Sandy,
I just read the post that you sent on Thur. I too have tarlov cyst. You may want to go to tarlov cyst disease and also tarlov talk and tarlovalt. You can go there and read about the surveys and different people post what their experiences are. I have found it to be encouraging. I am experiencing pain from back to my foot (right side and sometimes the left but not as bad). None of the mds around here believe that the cyst are causing my pain. If you go to the site, there is a Dr Long in MD that will do procedures on the cyst. I had a phone consult with him on feb5 and i am waiting for a phone call to give me a date that they can see me. I am taking lorcet every day for pain and sometimes advil. I spend most of my time lying on my back with my right foot proped up. I hope this helps. Let me know.
jmh

jhu460

I have had back and hip pain for the past year and a half. The pain was really bad last year and an MRI showed a herniated disc at L4-L5. I had a microdiscetomy to remove the herniation. I went through physical therapy and a very conservative rehab, but have never really recovered to where I was a year and a half ago. A month ago my back started acting up and the pain was really bad into my hip and butt. One doctor thought I had an upslip of my pelvis and another was convinced it was my old disc injury causing problems. An MRI I had last week showed a 20 mm Tarlov cyst at S2-S3. I am a physical therapist and have never heard of this before. Since I read the MRI report, I have been looking up information on the web and I have all of the symptoms listed and I see how they can definitely mimic the other diagnoses I was given. I appreciate everyone sharing their experiences and any resources that they have. I was upset when I read that there really is no cure for these cycts and that there only a handful of doctors that recognize them. I am currently symptomatic and dealing with a lot of pain that is dulled with anti-inflammatories for a few hours at a time. I am also seeing a physical therapy twice a week which does not seem to helping that much.

If you could please pass along any specific information (names and numbers) for doctors that you know that deal with Tarlov cysts, I would greatly appreciate it.

Thank you for taking the time to read my story.

Jane5

Hi! I don't have any info on docs for you, but I do understand your discomfort and frustration. I am waiting to see a neurosurgeon. The wait time here is horrid! and, I have no idea what the outcome will be from the consultation. I am a RN and also had never heard of this condition. I work full time...in a management position so I am not doing a lot of lifting etc. I have several cysts the largest being 20 mm. I have pain, tingling, and burning from the waist to the toes...at least the toes that aren't numb. Most days it is all I can do to walk....and as you know sitting is just torture! I cannot take anti-inflammatory drugs of any kind, and Acetaminophen just doesn't relieve the pain. Any activity irritates the pain....but then, it is no different when I rest! The disabling nature of this disease is agonizing! A colleague told me the other day that her sister had TC and the surgery performed (total excision of the cyst) was 100% effective. She lives in Wisconsin. I will try to get more details from her.

dibar

Dear Jane, I am also anxiously awaiting the information you said your colleague's sister has regarding a Wisconsin doctor who performed surgery on her Tarlov cyst. I live in Wisconsin and also have a Tarlov cyst and up til now have not been able to find any help for it, although in the meantime the docs have found other serious problems that I am being treated for but still in just as much pain.

Jane5

To dibar:
My colleague"s sister lives in Wisconsin but as it turns out went to California to stay with family ,see the neurosurgeon and had surgery there, The Neurosurgeon's information follows...perhaps he can communicate with your family physician and refer you to someone closer to your home....hope this is of some help to you or others out there!
Dr. Roderick Sanden
Neurosurgeon
3609 Mission Avenue
Carmichael, California
1-916-484-4444

nita2k

Hi, I'm new to this site but am very frustrated. Several years ago, I was having serious back pain which made it difficult to walk, move, sit, sleep - just about everything. It took doctors seven years before I was even given a back X-ray (I was told that I needed to see a shrink.). I didn't dare mention it to any doctor for a long time. But after that seven years, I had a new PCP and he was totally surprised there had never been an X-ray taken. He ordered one and they discovered two prolapsed discs L-2/L-3 and L-4/L-5 and a large, what they termed initially as as an arachnoid cyst, 7 cm x 3 cm. I went to several neurosurgeons. The going theory at that time was cortisteriod injections in my spine would take care of the pain so I did. I was fortunate that I only needed them once a year and they were quite effective. Now, 13 years later, I am having problems all over again. With a new MRI, the cyst is now diagnosed as "multiple tarlov cysts ranging in size from 3 cm to 1 cm. (centimeters, not millimeters). I went to see a new neurosurgeon today and, lo' and behold, it begins again....tarlove cysts do not cause symptons. He didn't even talk to me, just the PA, and walked away. I haven't had an injection in three years and, maybe, I have to go back to that. But, I have another appointment in a month with yet another doctor. It's time doctor's started taking this condition seriously. We aren't all crazy!

Marvin

Sandy,
I feel your pain, literally. I have had back pain since I was 14, I am now 52. It started with compression fractures in my thoracic spine. I now have 3 or more. Then I was in a rollover accident and injured my cervical spine and caused a subluxation, or dislocation, of two vertebrae. Then about 2 years ago I had a bout of shingles which is caused by the chicken pox virus and things changed. I kept telling my wife something was different and I had increasing pain and weakness from my waist down. If you read the literature available on the net you will find there are several believed causes or precursers to T. C.s including trauma injury to the spine and a recent herpes zoster or chicken pox/shingles infection. I had never been on narcotics for pain before, but a year and a half ago the pain got so bad I had to accept the drugs. That act opened a can of worms worse than I ever thought possible. I have been accused of being a drug seeker/ addict and liar. I was told that treating my pain went against everything the Dr. (and I use that term loosely here) believed in. I am now being cared for by a P. A. (Physician's Assistant) who is very open minded and actually read the info on T. C.s I took in to him. He too had never heard of them. I am waiting to see a Neurosurgeon and we will see what he says. I was a Respiratory Therapist for over a dozen years so I am not intimidated by the Dr.s and I speak my mind and research the subject before my appointments. This does not always go over well, but it lets them know I am a knowlegable patient and I'm not going to be blown off and go away. You are very lucky that your Dr. has knowledge of T. C.s as you say he is probably one of ten. Most Dr.s do not have any knowledge of T. C.s or their treatment, so if I could give anyone any advice about healthcare in general and orphan diseases in particular, it is to be informed and be persistant. If you do not get the treatment you need at your current provider make it known to them that you are unhappy and you will look elsewhere for treatment if needed. Change Dr.s, if you need to, as many times as you need to until you find the ONE. It's kind of like dating, I guess...since it's been a while since I've done that and if I did it now I wouldn't need a Dr. once my wife got a hold of me! Anyway, you usually don't find the right person the first time you date, it takes time to find the right ONE. So take heart! There are a lot of us in the same boat and we need to take back our lives and make the Dr.s do their job. Their first job is do no harm. T. C. s untreated can lead to permanent nerve damage and in the worst case paralysis. T. C. s flair up and cause extreme pain and then can clear up when the fluid drains out, probably after you've been forced to lay on your side in bed for a couple days. I will post whatever info I get from the Neuro Dr. on this site as soon as I can. Please don't give up hope yet! I haven't and even if I get the T. C. "fixed" I have the other conditions that will continue to get worse. And don't let them make you think it's all in your head and you're just a hypochondriac. Remember they are Dr.s...Not God's!
Marvin

shepherdkeeper

I hear all of you! I live in WI and was just diagnosed in Jan. What further complicates my situation is that I also have degenerative disc disease as well as bulging discs in the same area of the cysts. Every doc wants to operate on the discs, and tells me what I am going thru can not be caused from the cysts....that they do not cause pain, incontinence, inability to walk or sit.....basically that they are a-symptomatic.......I say bull pucky! I am going to make a last ditch effort by going to a "spinal care clinic" in one of the states best hospitals for spinal disorders tomorrow. Hopefully they will not all be dimwitts there as well. Also, I have emailed JH to get any published studies to take with me ( I suggest anyone looking for treatment do the same so that they have something a Dr will actually look at and take into concideration). My thought is that if i have to educate on it, I may as well have the studies to back me up. I find that i am throwing myself into this as a way to try to keep busy and keep my mind of the pain as best I can. What some do not realize is how embarassing this can be.....for instance, I am 36 and they want me to use a cane for walking because I fall so much. ( I fall because the cysts put pressure on the nerves, and my leg goes numb). They first wanted me to use a quad cane.....sheeeesh....like the pain does not put me into a deep enough depression, now you want me to look like my grandmother! I also have the incontinence issues.....but am dealing with those best i can. I try not to laugh or cough or ....move :^) Just remember guys, we have to try to find some kind of humor in this or things will only be woprse on us. As I am sure we all know, stress will elevate your blood pressure, which will elevate the CSF, and thus increase the pain....l.its a never ending circle isn't it!
I would like to know more from the person that stated they were getting disability.....I am fighting with social security right now, they claim it is not a dibilitating disease and that i should be able to work. I have been rejected twice so far but am appealing and having a hearing this time. I will bring my medical charts, reports and studies on this, and pry they have their heads outta their buts. This is a horrible thing to live with!

distressed

There are many of us with tarlov disease and the best site is tarlovcyst.net. It is a wonderful support system and wealth of information> If you would like more information email me at distrressed100@yahoo.com.

Thanks Debbie Goetz

Hope this helps someone

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