Tarlov Cysts or Tarlov's disease

[ouiday]

Is anyone familiar with symptomatic tarlov cysts or also known as Tarlov's disease?  They are nerve root cysts, usually found in the sacral region of the spine.  You may never know you have them, as they are asymptomatic until the area is traumatized in a fall or accident.  I fell on my tailbone in June and this resulted in unbelievable pain in my sacral region, which traveled to my entire lower back and pelvic region.  It is beyond maddening.  I have 2 of these nerve root cysts and it is extremely depressing, as there does not seem to be much that can be done about this condition  besides pain management.  

Any information or insight of this condition would be most appreciated.
Thanks,
Yvonne

[igsrock]

I'm sorry to hear about all the horrible pain these things are causing ya'll.  I finally got my doctor to get me an appt. with another neurologist (we moved, new doctor, she's aweful!) going to see him Monday.  I've had consistent headaches since I stopped taking pain meds in June 2011.  I read somewhere that the spinal fluid shooting to the top of the spine will cause headaches.  With a TC the spinal fluid is not kept where it's supposed to be, it drains out onto your bones actually wearing them away over time.  It's true some people never have symptoms or problems with these things but to say they DON'T cause problems is BS! I hate it when docs don't listen!  They act like you're just after pain meds or attention!  If anyone gets stuck with a situation like that, keep going until you find a doc who'll listen!  Good luck to everyone, I'll check back and let ya'll know whenever I find out anything. take care!

[lkdodgson]

In 2010 I had months of numbness, tingling, vertigo, all down my left side. I absolutely felt as though a war was going on inside my body. Dr's tagged me as having anxiety/panic attacks. I finally went to a Neurologist who ordered an MRI and was found to have bilateral tarlov cyst at C4-C5 region. The neurologist wasn't very familiar with these, but his internet research led him to believe that at times they can be symptomatic, but there isn't anything you can really do for them. I continued to go to work very miserable. I then went to see a Neurosurgeon and in all his arrogance I left his office and just dealt with it. Physical therapy and massage only made it worse. Eventually things quieted down even though I had twinges here and there, but could deal with. 2 weeks ago I woke to suprise all the same symptoms except more intense. I have been on leave from work as I can not deal with it this time. Back to the Dr's again and guess what. Was told you are suffering from anxiety/panic attacks. My Zoloft has been increased to 200mg and here is some Vistaril and some Klonopin. I am becoming my own patient advocate and pushing for more aggressive help with this. I had an MRI brain to rule out MS. That MRI was negative. I have pushed to get another MRI cervical to see if there are changes in the cyst. I have an appt. scheduled with yet another Neurologist following this. I am gathering all my records and will be forwarding them to a Dr. in Kansas City, MO who specializes in Tarlov Cyst. Nothing I take gives me any relief. It only makes me tired and I sleep, watch TV, read and I hate it. I love my job and I want to get back to work.

[stacey55]

Hi I to can empathize I have 3 cysts they found them in 07' MRI I had a shattered tailbone since then I have been getting worse sharp pain sciatica ribs skull knees hips numbing down both legs muscle weakness in the morning fatigue I can't have a relationship hurts to have relations in the pelvic bone although bowels feel numb sorry if that was timing however we are learning and I was told when I first got these they don't cause problems but sometimes they do I'm getting another MRI to see if their growing or if more developing

[donnasund]

I'm in a similar situation, having multiple Tarlov cysts at S2, though mine are inoperable, according to the neurosurgeon at Davis in Sacramento.  So  I'm left with pain management, spending 90% of my time laying down and doing a lot of reading and watching TV.  Trying to stay as positive as possible. I am so grateful for the tarlovcystfoundation.org, where I found the doctor.  I actually did my own research, finding 'Tarlov cyst' in the description of my MRI, which led me to the foundation site. The symptoms there showed me what was causing all my pain. The doctor thinks I have a connective tissue disorder, which is sometimes linked with TC .  Blessings to you.

[igsrock]

I guess it wasn't ok that i put my email! hahaha!! well it was good for a laugh!  

[igsrock]

I don't know if you've gotten any other answers yet about the Tarlov cysts.  I had surgery last year to 'remove' mine.  After the surgery, the nuerologyst said he drained it, then folded it down and stapled it.  Why he didn't REMOVE it was I'm supposing out of safety reasons.  At that time there were only four neurosurgeons in the U.S. of A that would touch any case of Tarlov cyst for surgery.  I got lucky and got a great surgeon, Dr. Sunil Patel in Med. Univ. of Charlston, SC.  The cyst causes extreme havic as you know, I don't need to tell you how horrible this thing is.  I am somewhat better after the surgery and healing time, but far from good.  I had a slim chance and I had to take it.  It did help but not enough to make my life more productive but a bit less painful so it was worth it.  I just wanted to reach out to you cuz it didn't look like anyone else even understood. It's late and I'm in pain, and yes pain management is what I have to deal with and it's no picnic either. I hate pills!  Any questions, I'm here ***@****  hope thats ok that i put my email. take care and God bless

[Dr. Kokil Mathur]

Hi
Welcome to the forum!
Well, yes, pain management is the main stay of treatment. However if the pain is debilitating and the neurological symptoms are progressive, then the cysts can be removed by microsurgery. The only problem is that this is a very highly specialized surgery which may not be available in all hospitals.
Other methods employed are repeated draining of cyst, injecting corticosteroids in the cyst or injecting cysts with fibrin glue.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!