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Tarlov Cyst

gobigred777ggobigred777 Posts: 1
edited 05/25/2015 - 9:50 AM in Lower Back Pain
First off, I am 65 year old female.
Feels like I am sitting on a bowling bowl in my sacrum - lower back pain and radiating aching pain in sacrum area. I have pain in my lower left front and lower left back. My feet have aching burning numbness and pain in legs (left leg worse). I have had this pain for months and getting worse. I also have horrible headaches and very dizzy - lightheaded when I stand up.

Told my primary care physician who ordered a CatScan. On April 17, 2015 I had a CatScan on Lumbar Sacrum spine. This report states that I have 4.7 x 1.6 cm in long and short axis sagitally and 4.4 cm transversely and ectasia of exiting S1 nerve roots and proximal S2 nerve roots bilterally consistent with Tarlov cysts. Also, 2mm and 3mm broad disc osteophyte on L2-L5 and L3-4 diffuse disc space height loss, approximately 50-75% and mild to moderate levoscoliosis centered near L2. I waited until May 27th for appointment with neuro surgeon who admitted me to hospital (direct admit from his office during appointment),. He said I was having myelogram on May 29th and Surgery on May 30th. The neuro surgeon said I had a 6 inch x 4.5 cm cyst on Lumber to Sacral spine.

I saw the Neuro Surgeon on the morning of the 28th to discuss Myelogram and surgery. Had Myelogram on May 29th. After myelogram, a doctor came into my room and said he was a neurologist and told me I had Peripheral neuropathy and proceeded to ask me questions and do some testing on my legs. I had just been given a Oxycodone so I wasn't really all there. I just stared at him and was thinking - what are you talking about - what about the cysts on my Lumbar spine and Tarlov cyst in my sacrum? He took a ton of blood and did every test known to mankind to try and figure out the cause of my Peripheral neuropathy - all tests came back normal. On May 30th was given Cymbalta and felt like I was going to vomit and the nurse told me I was talking slow and slurring my words. She looked up Cymbalta side effects and all were there. The neurologist came in and I told him I couldn't take the Cymbalta because of side effects, He was really mad at me discontinued all medication and discharged me. I was discharged from the hospital on May 30th and was told to walk to my car - 2 blocks away. The whole time I was in the hospital, they had the bed alarm on so I wouldn't get up without someone present and now I was discharged. On the discharge information my discharge diagnosis was Synovial cyst of lumbar spine. No one discussed my Myelogram with me, didn't see the Neuro surgeon again - just discharged.

May 22, I called the hospital for my myelogram results and on the myelogram, the radiologist just said dilation of the sacral canal cyst and with moderate sized Tarlov cyst. I called and asked for more detail and radiologist didn't transcribe any dimensions of cyst or if cyst filled with dye, if I had more one cyst in sacrum and then was given the run around on who to call to get further information. I finally called the hospital medical records and emailed them to order addendum to my myelogram sacrum test which I am waiting for. In the meantime, I had all my scans sent to the xxxx clinic and they contacted me telling me that they were going to view my case on June 3rd. They have a Spine Conference with heads of each department and will tell me on the 4th or 5th if they can help me. I also am sending my records to Dr. xxxx in Houston TX - how I will get there if he can help is beyond me - he is an expert on Tarlov Cysts.

Has anyone had this happen to them? Are people that freaked out about symptomatic Tarlov cysts and just run the other direction and call it Peripheral neuropathy and walk away - no physical therapy, no pain management - nothing. I am in pain, really want some answers - i have no idea what is wrong with me - just know I am in pain, annoying, aching, burning, stabbing pain - Very frustrated right now.


  • SavageSavage United StatesPosts: 5,476
    Wow! I can understand your frustration.
    I have no clue as to why your doctors did not make tests results clear to you..nor why they sent you on your way and why without pain management follow up.

    It is good that doctor in Texas will be discussing your case. Fresh eyes always good...with another opinion.
    And with all department heads at this meeting, there will be more opinions.

    While you are waiting for results on 4th or 5th, you may want to make little list of questions. Doctors explanations may answer your questions and no need to ask. But always good to be prepared.

    If by some chance surgery is not an option, you may want to ask if pain management would be beneficial for pain relief and coping. If they could give you referal ...never know.

    I would also be planning re trip to go to Texas. I would list any options I could think of, list of resources and support people.
    Whether you have surgery or not, having a support system is so important in helping you recover..or to help you cope with the chronic pain.

    You are not alone!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • Hi, was wondering about your progress in Houston. Would you pm his name?
  • sandra1717ssandra1717 CaliformiaPosts: 1
    I just got an MRI where impresion reads tarlov cyst c7 -T1  11mm measure. I beeing having terrible headaches and neck pain. And right arm shoulder pain  I was treated  by shoulder strain with physical therapy 12 sessions prior to the MRI which made it worst the pain.  After I knew I was send to acupuncture.  Te pain at times is less in my neck but sometimes is very bad.  I want to know since you have this experience. Can you please tell me. What are you doing now. What is helping you. Where did you go for treatments. I beeing reading myself  about tarlov cyst is not much information that I can find. 
  • LizLiz Posts: 7,832
    Hello Sandra
    This is an old discussion created by a member who hasn't been on the forum for over a year so will not respond. I am going to close it as you won't get a response.
    I suggest you create a new discussion using the link below

    Please click on the link for useful information

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
This discussion has been closed.
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