If perineural cysts are found in the cervical and thoracic spine are they still Tarlov cysts? I am confused. My searches for cervical cysts always take me to Tarlov/sacral cysts. Does anyone have information? I am definately symptomatic. It is debilatating pain when all is "firing". What help is out there since this is all in my head?

Tarlov cysts have been found outside the lumbar/sacral area...You might want to contact either Dr. Henderson at Georgetown or Dr. Long at Hopkins. They are tops when it comes to the Tarlov cyst.

Who exactly is this Dr. Long from John Hopkins? I need a first name....does anyone out there know "of" him and his work?

You are speaking of Donlin Long. I had surgery with him in January of 2005. He operates on the Tarlov Cyst and sometimes aspirates the cysts. I have not really kept up to date on what Hopkins is doing to the cyst now...You might want to check with Donlin Long.

Any new update since 2007 with your Tarlov Cyst? It's been almost a year. Did you seek medical attention with Dr. Long? Surgery to remove? Aspirate it? Right now I do have a tarlov cyst located on my S3 region. The neurosurgeon thinks that the burning is not coming from that. I had a lower MRI & now am having an upper MRI. For now, I'm going to my family physician to seek meds & do a Vitamin B12 Deficiency test. If all is negative, it has to go back to the cyst. Any feedback on this is appreciated.

Hi Annette,

I'm new to this site, and have a giant TC in S2-S3. Where is your burning? My symptoms are burning, cramps, spasms and strange sensations along the backs of my calves, ankles, feet and toes, (tibial nerve at S3) as well as hips, glutes and some upper thigh, bladder and bowel urgency( Nerves from S2)...I've seen a NS here in Santa Monica, Ca. and will have surgery on March 13th (his 12th surgery on TCs). There is a Dr. Feigenbaum from Kansas, Mo who has performed more than 90 surgeries on TCs, if you want he'll look at your films and give you a phone consult. Many MDs will tell you the cysts have nothing to do with your pain (my first NS 3 years ago gave me that erroneous information and now my cyst and symptoms are much worse). Best of luck....Tobi

Hi Tobi,

I don't know how big mine is. It's located on the middle of my tailbone (S3 region). I had an MRI done 3 years ago & it showed I had it then. However, they were not concerned @ that time. I only had chronic back pain during that time. 3 years later, I did another MRI which shoed the cyst & mild bulging disks @ L3/4 & L4/5. I now have constant burning throughout bottom, legs, ankles, feet. I've even had some burning in my hands & arms. I do have bowel incontinence but bladder seems to be fine. The NS said that the burning wouldn't be caused from the cyst??? I am having an upper MRI done tomorrow. I did the nerve testing with the Neurologist last week. All nerves & muscles looked good. Still no cause for the burning yet. I've been checked for thyroid issues, diabetes & Vitamin B12 Deficiency. All were negative. If it is not upper back, my opinion it's either the cyst or start of periphial neuropathy. I do have some symptoms of the neurophathy. ??? This can be caused from an accident/injury or even use of medications. The burning started back in 11/07. My family physician has put me on Neurotin (100mg) for now & only taken @ night. It does make you drowsy, which I was fine with that because I am not sleeping @ night. I also take Xanax for anxiety. I can only take (3) a day .5mg/ea. So I've been spreading that out through the day. The meds have calmed my burning down. It's not completely gone away, but it's gone from a 9/10 to a 3/4. It's been very frustrating mentally & physically. I do have a desk job & it makes it tough sitting all day. I had to buy an expensive chair pad & back rest. This helped with my lower back pain only not the burning. Sometimes I wonder if stress plays a role in it. The last 6 mo. for me have been amazingly stressful. It's nice to talk to others who are experiencing similar physical ailments & try to reach a diagnosis. I do know after reviewing some info. off the internet, not a lot of NS want to mess with the cyst(s). Too many risks involved. I have heard of Dr. Frank Feigenbaum from Kansas, MO. I live in Illinois. I'm not sure how close that is from here.

Are you having the cyst removed or just aspirated?

Please keep me posted on the results of your surgery. I do appreciate it.

Annette

I have been diagnosed with Tarlov Cysts and I have been researching the subject for 8 months. It appears surgery is the most effective treatment (NINDS Tarlov Cysts info page).

Does anyone know how a layperson can find out the inside scoop on the few doctors who are doing this surgery?

What the doctor's reputation is among other doctors and in the hospitals?
What the nurses that work in and around the doctors have to say about them? For example, if another doctor's wife had a Tarlov Cyst, who would he send her to?!

I would also like to know if there is anyone out there who has had surgery and is now pain free, i.e., is the surgery a success or do they still have pain but just a different kind of pain.

Thanks so much for any help or insight you have...I just don't know where to turn at this point.

barb

Hi Barbara,

How are you? Wonder if you still check these threads? I'm six months out from my surgery on my TC, and virtually pain free! It's been a miracle of a journey...Best, Tobi

Hello,
I was recently diagnosed with a tarlov cyst at S3. I had read that scientist believe that these maybe caused by the herpes simplex virus. I had chicken pox twice as a child and I have had shingles 3 times. Has anyone else had this problem? Thanks