Tarlov Cyst Woes

I have spent lots of time reading everyone's stories about their experiences with these nasty cysts and decided I wanted to share my story. Not because mine is worse or much different, but just so I can vent to people who can relate to what I'm talking about.

I'm a 33 year old female with a "bad back" in general. When I was 13 I was diagnosed with scoliosis which was minor at the time. Since that time it has progressed into a double major curve, both curves measuring around 52 degrees. As a result, I have several bulging discs, a herniated disc, and degenerative disc disease in the lower three lumbar discs.

My problems began about 6 years ago, when after years of good health and no pain I started having "flares" of debilitating back pain and bladder issues. I had always been prone to getting UTI's but was suffering from a UTI that wouldn't go away. After much time with a urologist we found I had an infection in the lining of my bladder itself and that my bladder did not empty all the way. I also had issues with spasms and frequency. I was treated with Bactrim for 2 1/2 years and while the infections have come and gone since then, they are not as constant as they were in 2007. Not long after that I began suffering from horrible bouts of constipation despite a fiber filled diet and adequate water intake. My doctors chalked it up to IBS and wanted to put me on medication for that, but my symptoms didn't really add up to IBS in my opinion so I refused medication. The constipation issues continue to this day.

As for the flares of my back, I would go through times when I could barely walk for 6-8 weeks, couldn't stand, sit, walk...anything without discomfort. In 2008 I had my first MRI which the docs told me showed nothing besides my scoliosis and assured me my scoliosis did not cause any of this.

Now fast forward to last year, March of 2011. I had another flare, this time with weakness and pain in my right leg and tingling in my groin. Another MRI showed the damage to my discs, but the docs insisted my pain should be to my left and not the right side. I was referred to a doctor for my scoliosis who looked me over and said there was nothing he could do for me. I went to a neurologist who said he could repair my herniated disc but if I was only experiencing intermittent pain on my left side he'd just as soon leave it alone. He had no explanation for the pain in my right leg. I then was referred to another scoliosis specialist who pretty much repeated what the others said, only adding that he thought my pain was "in my head" and that a good round of PT would help me.

By this point in time I was seriously considering that death was preferable to either "going crazy" or living with pain like this. I started to question my own sanity! One afternoon when my mom was over, she thought maybe we should check out my MRI. She's got her BS in nursing and lives with chronic pain herself, and she was curious as to what the exact findings were. Right off the bat, we look to a side image and right there on my tailbone was this large, bright white glowing "thing" that looked horribly out of place. My mom said right away after looking over several views that it was a cyst, but saw that in my report there was no mention of it. We then requested my MRI from 2008, which showed the cyst, only it was mentioned in that report that there was an incidental finding of a "large meningeal cyst" located on S2 and S3. I took the disks to my chiropractor (my lifesaver) who reviewed them and said he thought the cyst could be the cause of my pain.

I was shocked that the cyst had been ignored, so I drove a two hour round trip to see the radiologist who had read both MRI's. He told me the cyst measured appx. 1.75 inches long, 1.25 inches wide, and 1 inch deep. But he insisted these cysts cause no symptoms and it was definitely NOT to blame for my pain. We talked about my pain and he insisted all my pain should be on the left side, where the bulging and herniated discs are, and that perhaps I should see a therapist to help me with my pain issues in my right leg. I wanted to punch him!

After that, my mom and I began researching these cysts and you all probably know where it went from there. Now I see there are many of you suffering like I am. I quit my job at the DMV last July because the pain of sitting at a desk became unbearable. I cannot work out like I used to without "paying for it" afterwards. Even if I can push past the initial pain, I trigger worse pain that will last for up to a week. I feel like my butt is on fire anytime I sit or stand. My groin still constantly tingles and has for over a year. I have burning and shooting pains down the back of my right leg and weakness in my knee and ankle. I also have burning and electricity like sensations in my foot. Add that to a burning bladder, constipation, and it makes for one very old feeling 33 year old.

Does this sound familiar? Please tell me I'm not crazy like the doctors make me feel! Dr. F in Overland Park has agreed to see me once his new office is set up in April. (I'm only 5 hours from him) I'm terrified he'll tell me the cyst is nothing to worry about and I'll be back to square one.

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18 replies. Join the discussion

You are not crazy and Dr. Feigenbaum will tell you so. I have not back problems since 1995 with surgery in 1996 for a herniated disc. A few years ago I started injections for pain once again in my back. Then the pain got worse but this time they found out that it was my hips. I had spurs, bone on bone and arthritis. I had both hips replaced 4 days apart. Fast forward to 2010/2011 I started the injections again for pain. This last time I ended up in the ER.
My husband and I said "no more."
I am now my own advocate. In September when I had all of the tailbone pain they said it was my back, thus the injection on 11/11/11. When the pain in my tailbone got worse we sent for ALL OF MY RECORDS. We did research and found the foundation and Reta Honey. I can't believe that doctors and radiologist don't know about these cysts. My own PCP did not know but he is learning now. He scheduled a new MRI and the radiologist when asked about "the tarlov cysts" said they were "insignificient" I went back and told him I needed him to reread my MRI and tell me how big they were, what side they were on, and how many I had. He was not a " Happy Camper. TOO BAD!!!
Anyway, I saw Dr F on Feb. 24 and I have 2 large cysts
on my tailbone and a few more elsewhere.
Caution: Do not let just anyone operate on these cysts.
Do your homework.
There is hope. Hang in there. These forums are great. Us "cyster" stick together.
Hugs. Bobbi/ Gma 11

my tailbone and a few smaller ones elsewhere. I am wziting now to hear back when my surgery will be snd where. He is moving to Dallas in April but will still do some surgeries in KC.

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Sorry for the mix up on my note. It kept jumping around on me as I tried to write. Hugs. Bobbi/Gma11

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Thanks so much for your reply! I guess that is what I'm doing now, becoming my own advocate. I am excited to hear back from Dr. F's office. I plan on taking what I learn to my GP, radiologist, scoliosis specialists, and pain medicine doctor. They may just ignore me but I don't care. I wonder how many people out there have been made to live with this pain and told there is nothing that can be done for it? That's sad to me, because I don't know what state of mind I'd be in if my chiropractor hadn't believed me and kept me looking for answers.

PS: After a somewhat easier day of pain yesterday, the awful burning and pain has already set in today and I've only been up for 20 minutes. This is going to make for a long day!

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I'm sorry that you are starting your day off in pain.
Me too. I have been up since 4 am and have already taken 2 pain pills. This is unusual for me. I usually just have my Lidocaine pain patch on and can do pretty good. For some reason today the pain is a lot more significient.
I had an appointment at 10 but I changed it until tomorrow. I hope I feel better because I need to be there.
I, like most of us, have good days and bad. I am blessed because, so far, I have more good than bad.

Try to have a good day.
Bobbi/Gma 11

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HI Blh - I too have a similiar story of tc's. Two spinal surgeries 11 mo apart and still agony hair-on-fire pain. The 1st surgeon darn near killed me. Lied... yes the bones are fusing was what he told me each month atfer surgery till I returned to work and started 'losing my legs' and falling over. They were so weak I'd just go down. No warning. Last time I had no feeling for 5 hrs!

I worked for a co that had a mini hosp on site and the company dr referred me to a spine specialist. My 1st surgeon was at Froedert Hosp in Milw Wi area - he was the head of neuro that but NOT experienced with tc's. @nd surgeon had an immediate mri done...I had no FUSION at all!! He ordered me to wear a Michelion Man type brace. no walking no car driving no working no nothing because of the danger. I had surgery 4 days later. He was great and helped as he could...but told me I would never work again. Probably be in a wheelchair in 2 yrs. The rods and screws were broken and the wrong size in the 1st surgery he was horrorifed.

I have 4 meds I take throughtout the day and I am not in a wheelchair. So I am happy. I have all the pain you live within but try to find some tiny joy in each day. It is not easy to live with tarlov cysts. I hope your family is supportive.

If you have not already contacted Reta Honey Hiers at the tarlovfoundation.org do so - she is very knowledgeable and also has tc's. So she 'lives' it each day as we do.

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How long do we have to wait for Drs. to understand the pain we go thru? M.R.I. shows 2 Tarlov Cysts, but I cant find a Dr to fix it. I feel like giving up at times, reading every ones stories, I know Im not the only one suffering thru this HORRIBLE PAIN. Prayin every day for some one to help us. Have Dr appt. today, hope that it will be good news this time.

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Thank you everyone for your replies. This whole mess is driving me crazy. I know my pain is real and there is an explanation, I've just been burned so bad I refuse to get my hopes up. I still do have hope, I just don't get excited about too much when it comes to the medical world. What gets me is this...my husband got this cyst in his wrist and the docs get all worked up to get it fixed. "Oh, Mr. Weston, that's got to be painful. You should have that removed"....on and on and on. But yet a big 'ol cyst in a little bitty sacral canal..."Psssht, no big deal. You must be imagining your pain." I DO NOT understand the logic.

It is such a relief knowing I'm not alone. It really is.

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Where is his new office going to be located, what city and what state?

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His new office will be in Dallas,TX. He will continue to come to Overland Park, KS as well, just not many days a month. This is where I will be seeing him. I have been told that once he wraps up his practice at the end of March at the office in KC Missouri, the office manager for his practice in Ocerland Park will call to schedule. I am seeing him here in Ks since his practice is only 5 hours from where I live.

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I am so with all of you....went to nureosurgeon yesterday and he blew the tarlov cyst off just like that!! Still no anwsers?? Just about to go totally crazy!! Family doctor put me off work until I can get into yet "another" gastroentestinal dr on the 5th of April due to loss of bowel control. Nuerosurgeon did order a MRI/MRA of my brain due to other issues but I know these syst have to play a part of my numbness/tingling in my toes on my left foot and the weakness in my legs....can't concentrate or do anyting. Afraid to leave the house because of my stomach issues. I really need to work. My husband is self employed so I carrier our health insurance but I just can't sit at the desk all day everyday anymore....just don't know what to do or where to go. Thanks for sharing your story....it gives me encouragement and comfort just knowing I am not alone!!

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I was in a similar situation with insurance. My husband is self employed and so I carried our insurance through my job. In May of last year the sitting got to be too much. I had heating pads, ice packs, Biofreeze, my TENS unit as well as pain medication at work and finally I couldn't take it anymore. I would walk around or even lay down on my breaks and during my lunch break but the cumulative effect was too much to bear. I left my job in July of 2011 and am now covered until January of 2013 by COBRA coverage. I thought about going back to work earlier this month, just because of the insurance, but my husband said NO WAY. He's probably right, I wouldn't be able to take it eventually.

I think we will wind up insuring through the state high risk pool after our COBRA runs out. The rates may be a bit pricey but there are no exclusions or riders on the policies and the insurance is through the same company I have now. It is discouraging when I feel like I need to work for the insurance but know I can't.

As for my cyst, I know it is the cause of the constant tingling in my groin and for bowel and bladder issues. There's simply no other explanation for it as everything else has been scanned, tested, poked and prodded. As for my horrible leg pains, that may very well be from my numerous lower lumbar issues, but the burning in my tailbone and hips seems to come from the area of the cyst. WHAT A MESS! Surgery recovery sounds AWFUL, but if this thing is only going to grow over time and cause more destruction, what other permanent option does a person have?

We're not alone, and we have to stick together.

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I won't be at this new year a year until the end of May so I don't even qualify for COBRA...not sure what is going to happen. Guess I should just suck it up and go back but I just don't think I have it in me anymore......!! Just don't know what to do? I guess I will wait and see what the brain MRA/MRI says on Monday and take it from there! take care and praying for less pain for everyone!

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The symptoms you have are probably due to compressed nerves in various areas of your spine.

My spine doctor told me that if I had bladder or bowel incontinence that it was an emergency. I would need surgery to relieve the nerve compression because if I didn't it would permanently damage the nerves.

What did your neurologist or spine specialist say about nerve damage?

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Well...my actual neurologist has retired and I didn't know it....so I went to the neurosurgeon who did my neck surgery and he is the one who says tarlov cyst does not cause problems....which I was expecting with all the research I did...lol...he did however, order the MRI/MRA of my brain which will be done on Monday. I had one in 2003 and 2004 that showed a possible old infarction and some demylenating so he wanted to check that again. I just recently seen an eye doctor who says he does think there is some nerve root things going on after he examined my eyes but he could not pin point what or exactly where. So long story short....I am now looking for a new neurologist and will be seening my 3rd gastroentestinal doctor next week. I truly do feel that there has to be something with the nerve ending roots going on because of the buring in the spine....swishing in the right ear and the vibrating feeling in my lower rt side of my stomach just above my groin area. Then there is the numbness/tingling in the left foot...3 smaller toes...I also feel tingling up into my head and feel like I have a tobagon on my head most of the time. I just don't know who to see or how to get them to listen when I do talk to them. I had a whole list of symptoms I wanted to discuss with the neurosurgeon the other day but he didn't really want to hear it. So here I go again....it's like starting all over again.

Thanks for listening ...it helps just to vent a little!

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What doctor do you see? What is his speciality?

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Did you print out all the information, Abstracts .... I just copy everything and ask them to read it. It is just so frustrating, I also am looking for a neurosurgeon that agrees with TC's.

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So, I made a call to Dr Frank Feigenbaum in Kansas City today and they returned my call this evening. They will do a phone consultation or an office visit....as he is also opening an office in Dallas it will take a little time but I think it will definately be worth it. They will contact me in a week to three week to set up an appointment....I just need to see someone who believes these cyst are real and that there is a plan of action that can be taken. Thanks to this site for all the adivce and information. The Tarlov Cyst Foundation is full of info.

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This might be interesting.........I slowly lost the ability to use my right arm over a period of ten years, sort of tingling, then numbness, sometimes I could use my right hand, sometimes there was just no power in the hand or arm Couldn't hold a cup. Lots of shaking movements.. Finally neck surgery restored my right arm to just about normal.
All good for about twelve years then strange pains in my right leg (calf mostly) then lower back pain always on the left side I when back to the neurosurgeon who did the neck surgery thinking it was the same condition. After ordering and viewing a MRI he advised pain killers until they don't work.... then ........reluctantly conceded that back surgery might work????
Unfortunately facial pain then started to dominate my life, intense burning pain in my right ear, teeth pain (like ice held against teeth) sharp stabbing pain in both temples.........Eye socket pain. I checked with my dentist for the tooth pain.....I saw a Eye specialist; Had CT scans of my sinuses.......All vaguely thought it was TN.
The back pain stayed day and night even waking me, extreme back of right knee and leg pain forced me to use crutches. My family despaired and suggested I solve my own problems.

I then tried taking Cats Claw ( started with a dose of six, then four next day) Fantastic .... Back and leg pain subsided to almost nothing for about 6 months But it slowly returned so I now take three to four Cats Claw daily and always do one hour of swimming-like exercise each day in a heated pool. So far so good, just hope it doesn't get worse.

The TN flares up occasionally, so I up my Cats Claw to six. I use a sonic wave toothbrush and occasionally use ear drops for the burning ear pain.
Again so far, so good, although this TN might be another ailment altogether.

Recently, I noticed a worrying symptom of tingling and numbness in my left foot.........yep, checked out the diabetes bit (not diabetic yet).
Pressing the sole of each foot on the edge of the swimming pool steps helps a lot.
Hope this information helps someone.


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