I've been dealing with non symptomatic perineural cysts as my spine surgeon and pain management doctors have said. Right one at S2 is 2.2cm Left one at S2 is 1.3cm. For these Cysts to be non symptomatic they sure do cause me a horrendous amount of pain.

I'm taking Gabapentin 1800mg daily, Baclofen 20mg daily, percocets 5mg twice daily or as needed. I'm working full time 40-60 hours a week. I'm an industrial firefighter EMT at a large Steel Mill I have a husband and 2 kids.

I had a spinal fusion at L5/S1 in 2008 that I found out in 2012 had failed and I had another fusion done. Now the pain Dr is giving me caudal epidural shots which hurt so bad!

Does anyone know about these cysts?
Thank You!!!

Hi,

Your post jumped out at me as last week I had a lumbar MRI and it is showing a tarlov cyst in the spinal canal at S2 level which measures 2.1 cm in size.

I am also trying to find out all I can about this.

I have terrible pain in my lower back, left leg and foot/ankle and am wondering if it from this or is it contributing to the pain?

Going to a physiatrist tomorrow and will ask him about it and will let you know.

Hope someone can answer on here for you.

Hi vdub and sitke,
As well as posting here on the Spinal Disorders Forum, I just wanted to let you both know that there is also a forum here at NT specifically for Tarlov Cyst in case you need to search there for information.

Tarlov Cyst Forum

Hi! I am so happy I found someone else. I have been doing research on these since I found out in Jan. My MRI was in Nov 2013 but my spine surgeon didn't even mention them. I didn't know about them until I asked for a copy of my MRI report.

I am in the process of seeing a pain management dr who doesn't know anything about them. She is treating me for scar tissue. I just seen her today and she gave me a toradol shot with some kind of steroid in it. I am scheduled for a cortisone epidural June 9. I had one a month ago that didn't work, just made me unable to get out of bed the next day.

I have severe pain in my lower back that goes into my left leg into my ankle and little toe. Sometimes my left leg will just stop working all together. I call it my zombie leg. I have hot burning sensations on my leg and foot along with my vagina area. I get horrible stabbing pains, lightening like down my leg. I feel like I have been kicked in my butt, vagina area, when I sit it hurts so badly like I am sitting on a rock or something very hard. If I stand too long I start to really hurt same with walking. The only position that is comfortable and will relax the pain is laying on my bed in the zero gravity setting. Which is legs up and head elevated and I am on ice!! I also have UTI's every month because I have urine retention and that causes the infection. I have one now and I am so busy working 12 hour days and kids and husband and house that I can't get to the dr for medicine. Hopefully Friday or Monday I can. I have instances with bowel incontinence, not all the time, just occasionally. I also have pain that goes into my right leg just not as severe as the left I don't get zombie leg on the right. Sometimes I think if I were dead there would be no more pain.

I have put on over 40 pounds in less then a year because I am in so much pain after work I just go to my bed on ice and I will eat because I think poor me, I am in pain, I can't do anything, my life sucks but at least I can enjoy this food. I am the heaviest I've ever been in my life even during both pregnancies! I am exhausted, from not sleeping well and "pretending" to be happy and ok. I am not a complainer and I hate to ask for help so I push and I push until I am in tears in pain.

I just wish I could find a dr that knows about these things. I have found one in Dallas Texas, great, I live in Indiana. Not many drs even acknowledge that these cysts can cause pain. sucks.

I hope I can find others that have this same issue so I can try to treat myself, I am only 39, I don't want to live the rest of my life in pain like this.

Hi,

You are really suffering, I am so sorry, pain takes over your whole life, the pain and not sleeping well really, really takes a toll.

Are you on any pain med? I take Norco but it hardly touches the pain.

You're working 12 hour days too! you have to be suffering a lot, I totally understand.

I saw the physiatrist today who doesn't know much about these cysts so I was pretty disappointed.

I'm the same as you, pain in left leg/ankle but for me it's the big toe, also numbness across my left ankle, sometimes I feel pain in my left foot but it's mostly in the left.

My left leg/foot sometimes feels like I'm 1/2 dragging it, hard to explain, it suddenly doesn't work as well as the right!

Going to a chiropractor and for massage therapy, Dr suggested steroid injection but will wait to see if therapy helps. thing is the injections are supposed to be only temp, had one in my neck though and it has helped about 70%.

Make sure the Dr who gives you the epidural uses X-ray imaging to guide the needle.

Been looking on "Dr. Google" I know I shouldn't do it! but...some say these cysts get worse over time, they grow?? I am worried.

Everything gets worse sitting down but quite often I have to limp home when out for a walk, other days it's not as bad.

I have slight DDD and a mild disc bulge in the lumbar spine but again the Dr doesn't seem to think any of it should be causing this pain.

Had a car accident last year so have severe neck problems, long story...and am wondering if this cyst can be caused by trauma.

I was very, very active before this accident, now can hardly do anything and have also gained weight, the food just tastes so good!! but...I have cut back and am losing as I figure I'll only be more depressed gaining weight, can't win.

Honestly, I have sat and cried over all this, just want to be 100% again.

Hope you can get to pick up your medicine, take care, look after yourself.

Went over to the Tarloc cyst forum too, thank God for that!

Do you have numbness at all with the pain? Does zombie leg mean weakness? Urine retention and bowel incontinence may indicate a more serious condition called cauda equina syndrome. If you do a search on this forum I know I've seen others post about it. Make sure you are being evaluated for this, it may mean another MRI.

Do yourself a huge favor. Look up Frank Feigenbaum in Dallas Texas. There is only a handful of Dr. that know anything about Tarlov. He is the best. Google search under Tarlov or Perrinueral and he will come up.

Hi, my name is Stacy. I have been diagnosed with multilevel perineural cysts essentially in all the levels of the thoracic as well as lumbar spine. The largest cysts right SI, left SI, right S2, and left S2, and centrally in the S2-3 region. These cysts are causing blatant compression of adjacent sacral nerve roots. These cysts are also causing significant expansion of the sacrospinal canal as result of sacral bone erosion/thinning.

I managed to find a great specialist by turning to the internet. Unfortunately at this moment, I am not getting any co-operation from my GP. She tells me my insurance will not approve surgery for two reasons:

1 - surgery is invasive with not a high enough good outcome rate
2 - dr is out of California, there for they will not pay.

Any one have any suggestions?