Symptoms: Tarlov cyst(s)

I am a 56 year old very frustrated female. I am a mother of 3, including a son, who is a physician in residency who says Tarlov cysts are asymptomatic. When I read about other sufferers from Tarlov cysts, I know that our common symptoms are not coincidental. I would like to hear from others. I have a Tarlov cyst on S2 thecal sp? sac. I also have two herniated disks at T10 & T11. I previously received relief from back pain with epidural pain blocks done in the hospital while awake. A few months ago, my orthopedic surgeon referrred me to a new outpatient surgery center (which incidentally he is part owner). After being put to sleep on my stomach, I woke up on my back and my gurney was quickly sat straight up. I immediately had the worst headache of my life in my left brain and stroke symptoms on the right side of my body. I was flown to UAB in critical condition to the stroke center. I have recovered from most of the obvious physical symptoms except weakness in the right side of my body but the pain I have in my back and tailbone area are unbearable. Occasionally I get perineal pain that is best described as being in natural birth labor (awful!!!!!)Also, the pain is severe down the inside of my right leg from groin to below knee. I have chronic unexplainable UTIs. Depression and insomnia have become unbearable. My life has been changed forever. I, also have an 11 year old daughter (that is hard in itself). My doctor's only solution is to prescribe more Lortabs and tell me he is sorry. Has anyone had similar symptoms or experience(s)? Maggie

By mbooth
Posted May 22, 2009 at 11:31 am
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You sound like so many other TC'ers. Tell your son to listen up!!! He is in training and needs to be educated on these monsters!!! He said the textbook version of what doctors learn in Med school. Ask him to look at the Tarlov Cyst Foundation website and he will see that these things do cause problems. How could they not? They are on the actual nerve!! They erode the bone away. How could anything that is associated with these things not be considered to cause pain. Med school students are taught only Dr. Tarlov's first finding, not the fact that he later retracted his statement and did in fact state that these can be symptomatic and cause problems.

Yes, the epidural shots made me worse, but not as bad as they obviously made you. Where are you located?

Love, Hugs and Prayers,
Mary B

By formercampbell
Posted May 26, 2009 at 9:31 am
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I have a similar story. I started having pain in my right buttock about three years ago. After talking to my doctor she referred me to a pain clinic. After enduring a year of painful injections into my piriformis muscle, the doctor at the clinic sent me for a mri. The mri picked up my usual degenerative disc problem but noted at the time a small cyst at the L5-S1 area. I was told it wasn't the problem and he couldn't help me anymore. I endured weeks of physical therapy and still no relief. In fact things just got worse. Over the last 2 years I have lost so much because the pain and burning in my lower back has completely debilitated me. I spend most of my days taking pain meds and trying to find some position that wasn't going to be excruciatingly painful. I went to see a neurosurgeon after my recent mri showed it had grown in size and was now growing and tangled in my nerve root. I never saw the surgeon, only his PA. He told me the doctor didn't want to open me up to remove this but said and I quote "it should go away". After complaining he ordered a mri with contrast and this finding came back more confusing. The radiologist stated he thought it was a tarlov cyst but stated it wasn't shaped like a cyst and couldn't conclusively tell if it was a tc or something else. In between the last 2 mri (they were only 2 months apart), the "cyst" grew 2 cm. I am now going next month to see a neurosurgeon at Mass general hospital and hopefully will get some answers. I understand how frustrating it can be because no matter how much you tell the doctor how horrible the pain is, they look at you and say well I don't think it's caused from this growth. I do agree that we know more than the doctors. I have recently started having trouble urinating and I told my doctor of my research into the possibility that my urinary symptoms are caused by the tc. She agreed to send me to a urologist to confirm this.

By NORDGeneticCounselor
Posted May 26, 2009 at 12:20 pm
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The Tarlov Cyst Disease Foundation provides additional information that may be helpful:

http://www.tarlovcystfoundation.org/Home.asp

By bren_q
Posted May 27, 2009 at 6:20 am
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I felt this cyst in my back more than 30 yrs ago, showed it to the Dr who blew it off and told me that it was wrapped around my spine and would never bother me. Boy was he ever wrong. Then in the 90's I started noticing other symptoms unfamiliar to some doctors and some called it a cop out and said there was no such thing. But at the time I was a critical care LPN(one of the last few, I suppose) I was a paramedic, Type A personality, I taught all the ACLS type classes and probaly would have gone for my RN but being a single parent there just was no time andd try to keep our heads above water too. So in 2001, the fibromyalgia became worse, I came down with chronic fatigue., migranes that were so bad, aches and pains all over, irritable bowel. Then one day I picked up a bug calledH Pylori which caused severe diarrhea, like 40 or more times a day and were the most awlful smelling in the world. They reminded me of the patients with intestinal stomas. for a week I ate nothing but ice chips and clear liquids and they continued, Finally after a week on very high dose antibiotics and other things, it stopped. I went back to work, and worked 1 and 1/2 days and it started all over again. I was ask to retire. So for 3 long years I fought federal government and social security for some sort of disability pay. Finally got my first check after 18 mos and was approved by medicare in Nov 2008. Then all of a sudden I was unable to walk for than 15 min without hurting and cramping so bad, I was getting menesical tears because of the falls. I had 3 repairs and they are still torn up and the knee caps are full of fluid. After 3 doctor office trips and 3 MRi trips, I was told I had a Tarlov cyst. I read up alot on them and realized that had to be where my pain was, My life was limited because i could not walk. My nerves were terrible, I have a feeling of impending doom and feel like everyone is out to get me(dumb I know , but it's how I feel). So I saw a neuro surgeon yesterday who sent me for more MRI's( and they aren't cheap) one of my cerviacal spine and my right shoulder. It took about an hour for the neck, but by the time we got to the shoulder, my back was spazing so badly that my arm started moving without me being able to control it and so did my leg, so now I have to go back for that and I also have to have a nerve conduction test because of tingling in my toes and hands. Basically the neuro sugeron doesn't feel surgery would do any good, he feels that m pain is more or less from a combination fo the fibro and the cust, as well a degenerative disc disease. So in the meatime I wait, and I cry in pain. But I will tell you that I have had one thing that I have found that actually helps me. I invested in a very nice 21 jet hot tub, the top of the line. I figured with my copay of $15-$20 two times a week and the high price of gas which was costing me almost $40 a week, I would save in the long run. So I had them call the company and get the tub that was recommended for arthritis and fibro. I am now starting my 3rd year with the tub and orginally had it on the back porch but found myself waking at night in pain and going out in the dark alone. So I have now enlcosed the area to make it safer feeling for me. The hot tub actually works if you get the ones with jets that you can turn to hit the area that hurt you most. Hoepe this helps some of you, My empathy is with you all, tell your son, that everything isn't by the book. He needs to start to have a broader look on life and listen to the pt not the book. Very little in medicine is textbook. I pray he gets in touch with an old seasoned LPN or RN who will take him by the ears like I did a few while i worked as a civilian for the Navy, and showed him his nose. Sometimes they get so caught up in their titles or their authority they gorget to come down to earth and LISTEN to their patient who knows more about their bodies than anyone else, same a pediatricians who don't bother listening to the parent about their child. Do they really thing that kid is gonna say"hey man I got a sore thraot, diarrhea and earache" Good luck, and my sogga continues

By Tammera
Posted May 27, 2009 at 11:54 pm
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I was diagnosed with a Tarlov Cyst 1 year ago.After I lifted something heavy I came down with the worst nerve pain in my back.I sent my films to a wonderful doctor named Dr.Feigenbaum.I went to Kansas City to have surgery.I did physical therapy with a therapist that specializes in backs for 2 months before surgery and 3 months after.I was pretty much homebound before surgery and now I have 80% of my life back.I had also a wonderful support system in a group I found specializing in Tarlov Cyst.They are the ones that told me about the doctor.They were great in guiding me the right path.If anybody has any questions please reply.I pray that you will be guided the path to get healed.

By lwagner
Posted May 28, 2009 at 1:08 pm
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hello just read some of the newer tarlov cyst suffers,i also have been diag.w/tarlovcyst i have had numerous epi steroid shots its been 5 yrs i feel like i have lost them iam 45 and waiting for disability mycyst has gotten bigger its involved w/ s1 nerve root ialso have 2 hernieted disks 1 in my neck and one in the lumbar region of which i did not have ,i takr 2 oxycodone and 1 morphine daily ive had to scale back because i only have 18%funtion in one kidney the other kidney is not working i have been told i will be on opiates for the rest of my life how depressing ihave had to see a shrink for the dibilitating pain and trouble this supposed to not be painful disorder,i have been on so many drugs so strong it was to much for my 125lbs body to handle and theirs the stigma of being an addict because you look normal why is she taking this stuff even from medical staff its very hard to deal with,ive been to and i am not kidding 5 hospitals ive gotten statements that this is very common and we can help oh what insurance do you have again im sorry cant help how about this hospital?so their i go to another and than another,and then i have heard this is so rare theirs no specialist w/tarlov it is not explord.their is also no one industry that knows about tarlov cysts how to treat people i have had tons of therapy because i ve spent so much time in bed but therapy makes it worse water therapy is really nice but as soon as you get out of the water gravity takes over....but anyway i also wanted to tell the person going mass general i also went their because it was recmmed by the doc that did my mri i did have an appointment but when i got their they said my appointment was "tentative" i even got my registration no# in the mail i go there and the doc was in albany ny at the time and thats exactly where i was coming from so they told me that they no longer do the tarlovcyst surgery because of risk to both surgeon and patient be careful i cant remember his name ive seen atleast 10 nuro unfortunately no one can help me my cyst is in the cauda equina means horse tail its where your nerve systemcomes out if the spine i also have bad tailbone pain and siactic nerve pain sacral atheritis and other areas of artherits sorry about the awful typying i never on my pc because of pain but thank goodness for laptops lohugs for all you people suffering w. hope things wll get BETTER laura

By Tammera
Posted May 28, 2009 at 7:51 pm
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Dr Feigenbaum has 2 offices .His main office is Kansas City ,Missouri and there is a Kansas office in Overland Park,Kansas.I Live in Hurst,Texas so we drove 8 hours to get there but,there are many from all over the country that fly in to see him.He is also on the Tarlov Cyst Foundation website as a surgeon that can help.He is a very nice and wonderful doctor.His staff has always been great and the nurse that works for him is incredible.I know I am not 100% but at least I have my life back.If you have films or cd of MRI he will look at them and let you know if he can help.I went to Kansas City to meet him and got my surgery done the next day.After he looked at my films it took about 3 months to schedule the surgery.He is very good at what he does.I know if I have to have any more Tarlov surgery or back surgery that I will go back to Kansas City.I hope this helps,Tammera

By Tammera
Posted May 28, 2009 at 8:02 pm
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There is also a wonderful support group called Straight Talk about Tarlov Cysts.When I was at my lowest they lifted me .I would not have made it without this group.They are angels.
When they were diagnosing me I was on all kinds of pain meds and finally one doctor put me on Lyrica and it helped me alot.I was able to function alot better till I got surgery. I still take a smaller dosage of Lyrica even today.Let me know if you have any other questions.
You can even email me at shamera @prodigy.net.
Take care,Tammera

By formercampbell
Posted May 29, 2009 at 10:02 pm
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I live in massachusetts and will be seeing Dr. Wilkinson at Mass Gen Hospital. Does anyone in the group know of any doctors in mass that are qualified to take care of these cysts?

By lwagner
Posted May 31, 2009 at 10:24 am
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hello , my name is laura ,i have gone to mass general they told me they are not operating on tarlov cysts any more because of risk they sent me to nyc hosp of special surgery and they couldnt help so i was sent to albany med center and the list goes on the pain makes you go on to try to find treatments ,i truly wish you all the best of luck!

By Tammera
Posted June 1, 2009 at 12:13 pm
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Please look into Dr.Feigenbaum in Kansas City.Or look on the Tarlov Foundation website to find a doctor closer.Please take care,Tammera

By Jorja
Posted June 1, 2009 at 3:39 pm
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Hi, I had TC surgery in Oct. 2007, done by Dr Frank Feigenbaum @ Research Med Center in Kansas City also. I have made a very good recovery and recommend him to anyone who is going through this painful disease. His phone number is 816-363-2500. He trained at Georgetown University before he came to KC.

By formercampbell
Posted June 1, 2009 at 9:13 pm
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Thanks everyone for the advice. Unfortunately, Kansas City is very far away from where I live. I wish more doctors were educated in this disease. I am preparing myself for more disappointment on the 11th when I go to Mass General. I have done alot of research on this disease and am certain I will have to inform him.

By mbooth
Posted June 2, 2009 at 11:30 am
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Don't be surprised if he tells you that the pain is all in your head and that the TC's can't possibly be your problem. Very few doctors will acknowledge that these things cause problems.

I also had my surgery in October 2007 and have about 75% of my life back. I had it with Dr. Feigenbaum also. There is Dr. Long in Maryland, Dr. Mendez in Minnesota (or someplace up near there), Dr. Feigenbaum in Kansas City and Dr. Khoo in California. Those are the only doctors I know of that treat these monsters here in the US. Check the Tarlov Cyst Foundation to see if there are any others.

Good Luck!!

Love, Hugs and Prayers,
Mary B

By formercampbell
Posted June 10, 2009 at 10:03 pm
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I feel your pain. I am on 160 mg of oxycontin a day plus 20 mg of valium and 40 mg of flexeril and I still feel horrible. I will be going to mass general hospital tomorrow with the probability of them telling me they can't help. My only advice is to try to stay positive and don't let this disease get you down. I'm sure all of us who suffer from this disease want to crawl into a space and die but everyday we get up and attempt to live our lives.

By formercampbell
Posted June 11, 2009 at 10:40 pm
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Today I visited Mass General Hospital. After an exam with the doctor I was told that the two tarlov cysts I have I probably was born with and that wasn't the cause of my pain. He chalked my pain to a sprained back. I have had sprained muscles before but none that have lasted over 3 years and never heal. I was prepared for that diagnosis because of other peoples experiences. He wants me to take antidepressants and go on a vigorous exercise routine. This doctor is a "so called expert" in tarlov cysts. I left the office more confused than when I went in. I was also told that a 4 cm by 3.5 cm tarlov cyst was quite small even though it has started to erode my bone. Anyone in this group have any suggestions as to what my next move should be or have had similar experiences with doctors who believe this.

By bren_q
Posted June 11, 2009 at 11:07 pm
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well after MRI's of the lumbar and thoracic area, I saw a neurosurgeon who ordered a cervical and rt shoulder MRI and some electrical condution test in my arms and hands.
the neurosurgeon does not recommed removal of my TC because of the attachment to the spinal cord, he is afraid that should it not seal properly then I would have much worse pain.sometimes I ask myself if it can possibly get worse. I feel like I co-exist in a body that tells me what to do even if I don't like it. My life has changed so much, that I don't even recognize me as a person anymore, and to be honest I just don't want to live like this. I feel like I am punishing my family because they do not do things that they want to do because I can't participate. I often don't tell them of the pain and just tell them I don't want to go, that I have plans for myself and send them on their way. I really don't think they would understand me if I told them how bad I feel and you know how people are when they hear you complain all the time, they don't want to be around you anymore. I've lost alot of friends because I cannot do the things I use to do with them and they just think I don't want to or I am a hypochondriac. Right now darvocet and loratab are the only pain meds my doc will give me. He doesn't believe that I have as much pain as I do and he says if I put you on them now I don't have anywhere to go when it gets worse, which i GUESS IS TRUE, BUT I sure would like him to walk in my shoes for a couple of days. I am so glad I found this site and others who share my pain. My prayers are with you all,, Brenda

By mbooth
Posted June 12, 2009 at 10:33 am
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You should both contact Dr. Feigenbaum in Kansas City! I heard the same things over and over and over. 5 different doctors told me my pain was in my head. I'm so greatful that I found Dr. F!! He truly helped me to get my life back!!!

Love, Hugs and Prayers,
Mary B

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