I am having a hard time finding pain management doctors that believe I have symptomatic Tarlov cysts. My neurosurgon is at UC Davis in Sacramento who I'm schedulted to see next week, and I live in San Diego. A whole days drive. No doctors believe in this disease. They all think it's no big deal. They keep giving me epidural steroid injections, which hurt so bad. I am in unbelieveable pain with 4 MRI's showing 7 Tarlov perineural nerve root cysts that started hurting after a bad fall. I can't get pain management anywhere. Does anyone know how to help?
Tarlov cysts are relatively uncommon, however they are typically asymptomatic. Besides physical therapy the only other treatment I have heard of for tarlov cysts is surgical cyst aspiration or possible cystectomy (removal of the cyst). Cystectomy is often not possible because of the intimate association and incorporation of the nerves into the cyst wall.
I don't know how big your cysts were, but usually cysts less than 1.5 cm should not cause symptoms.
At what level are you getting epidural injections? Also are these epidural injections or facet injections? Perineural (tarlov cysts) are seen in in the sacrum.
I know, I'm one of the rarest I'm told. My biggest one is located in my cervical area c6-c7 and I have 5 more small ones throughout my cervical area. A fall caused them to become symptomatic. I just recently found out I have one in my lumbar area of L3 as my leg was going numb. I did a survey on the Tarlov cyst foundation website and the founder contacted me and we talked for quite a while. All the signs suggest they are symptomatic. The injections I was getting were cervical epideural steriord injections and nerve root injections and they would leave me in so much pain. The type of surgery that I know of is where they remove the spinal fluid and fill it in with glue and muscle and don't touch the nerves. Thats what I'm going to see the neuro at UC Davis for next week. Most Tarlov cysts are in the sacrum but RARELY they do occur in other places, lucky for me.
I also have these cysts in my neck. 1 at C6-C7 on the right and another at C7-T1 on the left. I found this on a 3 year old MRI report, doc didn't even mention them. My symptoms have compounded over the past several years and was recently diagnosed with severe sleep apnea, then another said no bad diagnosis, sending for more intensive sleep study. I believe these cysts are messing with the pressure of CSF and causing alot of neurological symptoms like muscle weakness and numbness as well as excrutiating pain, headaches and dizziness. I think they could possibly be the real reason for the apneas if they are compressing the brain stem. I have another MRI on friday, but I think one may have ruptured at the chiropractor last week. I've been in bed since. Have you gotten anywhere with yours? I'm having trouble with doctors as well.
I was having headaches dizziness metallic taste and nausea after a spinal surgery at l4/l5 and l5/s1. After an MRI they found a dilation of central canal of spinal cord at c4-to t1 and nerve root cysts involving the left/ right exiting nerve roots at c6-c7 and c7-t1. I could use any help with understanding my symptoms. I thought if there was compression at exiting nerve roots that it would not cause my symptoms. I have VA insurance and Medicare. I know this is rare but any info would be appreciated thank you
I would be very interested to hear more of your story. I was diagnosed with a Tarlov Cyst around the tailbone area about 12 years ago. No one would do anything for me. I learned to "live" with it.
I have been dealing with severe neck, mid back, shoulder, radiating pain upper body for atleast 4 years - originally thought it was due to a fall on the ice. Had 2 shoulder surgeries - nothing helped. Had an MRI done in May. I do have 2 disc herniations at c3-c4 and c5-c6 - but today I was reading my MRI (having another one done tomorrow) and realized it says I have another Tarlov Cyst around C7-T1. None of the doctors that I have seen (ortho surgeon, neurologist, pain management) have mentioned this.
Getting so frustrated for a doctor to do anything - now I realize I have a huge uphill battle....
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