Tarlov Cyst on the spine: Any advice?

I had the same issue. My doctor send me for a sacral EMG and they told me they don't do them. Lucky for you nobody does a sacral EMG. They stick needles into your nerves and that would probably cause your symptoms to get worse. The only thing I hadn't tried for my symptoms was acupuncture. They did needle therapy and the one they put in the right side down by the sacral area hurt sooooo bad! It made the cysts kick into high gear. That night I lost control of my bowels and a week later the bladder issues got worse. Then the symptoms I already had got a lot worse over the course of a couple months.

I have been having issues and have gotten progressively worse over the last 4 months to the point of having bowel issues which took me to the ER and resulted in the MRI showing the cysts on my spine and the Tarlov cyst in my sacral channel. While the issues from the lack of feeling in my lower body and the headaches, nausea and dizziness are disturbing and disruptive placing a halt on my very active lifestyle; having an answer that finally makes sense is somewhat of a relief. Now, I have to find someone who will help me. So far, Wisconsin and Iowa doctors have told me they can't do anything for me. It is affecting every part of my life. I have reached out to Dr. Feigenbaum to start the paperwork. I am not ready to go from running, biking, hiking and kayaking to a sedentary lifestyle. Walking, sitting, standing and laying are uncomfortable with numbness in both legs and lower body. Losing bodily functions without being able to feel it has occurred is disconcerting, to say the least. My reflexes in my knees and ankles have not been responding. My certified massage therapist is who discovered no response below my neck due to lack of feeling. I was hoping maybe Mayo has care but it seems, by the messages that Dr. Feigenbaum is my best option. I believe my PCP will refer me to him if there isn't anyone else to help me. You really feel like it's all in your head until they find something there. I do have degenerative spine issues with 8 bulging discs (cervical, thoracic and lumbar) and fell on my head causing a severe concussion and cheekbone fracture while trail running almost exactly a year ago. I have fallen running at least four other times since then although not as severely. My health took a big turn on July 11 with lower body numbness - and has just progressed. It affects my sleep since I have numbness and cold lower back due to less circulation at all times. My massage therapist works to get my circulation back into my feet during my visits and I am regularly having acupuncture to try to get some relief but it isn't getting any better. I can't tell you how much it means to find others who know what this is like. Sometimes you just have to cry and then try to get yourself out of the funk.

Hi - In May 2020, I had a Parathyroidectomy due to Hyperparathyroidism. About a month after the surgery, I started having numbness in my feet and hands. The numbness has continued to the present and it is constant. In addition, I had carpal tunnel surgery on my right hand, 6 months after the Parathyroidectomy. According to my surgeons, my feet and hand numbness is not related to either surgery.

Besides the numbness, I have back stiffness - difficulty get up & down to sitting position, pain primarily in my lower back and middle back and sometimes in the center of my back. Also, I still have symptoms related to Carpal Tunnel. Recently, I had an MRI of my cervical spine and the Radiologist noted that there were multiple prominent perineural cysts noted within the neuroforamina bilaterally at the C7-T1 through T2-T3 levels. I have not yet had an MRI of my entire spine.

I have researched Tarlov cysts and understand that the cysts are usually found in the sacral spine. However, I have also read about some (less frequent) Tarlov cysts found in the cervical and lumbar spine areas.

I do have pain throughout my back which causes me discomfort and has limited my quality of life. But I do not have the intense pain that I have read about per persons who have been diagnosed with Tarlov Cysts. I am wondering if anyone less pain than is described in writings or symptoms of Tarlov Cysts? Or perhaps could my situation be related to the start of problems with Tarlov cysts?

I would appreciate any input or suggestions related to my post.
Thank you very much.

@ablc Welcome to Connect. I took some time to think about your message before responding. You are asking great questions, and this is exactly what you must do to advocate for yourself and help your doctors find answers for you, so good for you! I am a cervical spine surgery patient, and I have a lot of years of physical therapy visits. There can be lots of reasons for back pain that are not spine related. Since you mentioned difficulty standing up from a seated position, I would think that you may spend a lot of time sitting instead of standing or walking. When we sit too much, the hip flexors get tight, and they pull on the lower spine and pelvis. This can cause aching and back pain in a person who doesn't have spine issues. A physical therapist could help with that, and also with regaining strength in the hips and legs for standing and walking. That is important to try to maintain as we age and to try to maintain good balance in the name of fall prevention.

Have you had a follow up visit with your physician about the Tarlov cysts? They had a reason to prescribe the imaging, and hopefully they will follow up on recommendations for a treatment plan. You can always get copies of your MRI reports and the disc and take it to a spine specialist for a consult if you are not getting answers. A spine specialist would be best to consult for an answer on if your Tarlov cysts could be causing symptoms or if your symptoms could be from other causes.

I do have a question about your carpal tunnel surgery. If your doctors say the numbness in your hands is not related to the Carpal Tunnel Release, why did they need to do that surgery? Is this a post surgical opinion because the surgery did not relieve your symptoms? If that is the case, you may want an opinion from a different doctor. I did have a carpal tunnel release surgery years ago and it did not relieve my numbness and tingling in my hands. My hands were also turning blue and getting cold. This was from thoracic outlet syndrome which is common, but a lot of doctors miss it and misunderstand it. The hand surgeon (not at Mayo) missed it completely, and then refused to authorize physical therapy to treat it.

TOS can come from poor forward slouching posture which I was guilty of, but after becoming a spine patient, I am now more focused of good posture to prevent future problems, and I am doing physical activities that build core strength which supports my spine. According to my Mayo spine surgeon, that is the best way to help avoid needing spine surgery in the future. All of that good posture has helped the TOS symptoms, and my hands don't get cold anymore from it. My physical therapist has been a great help and also does myofascial release work. You may want to look for a PT who also specializes in MFR because that can help with a lot of postural body issues when you get stuck and can no longer maintain good ergonomic body positions. My shoulders were too far forward, and therapy has helped get my shoulders back where they belong, and get my shoulder blades to move closer together again.

It is hard to find a doctor who can accurately diagnose TOS. Look for a specialist like a thoracic surgeon at a teaching multi-disciplinary medical facility that lists thoracic outlet syndrome as a condition that they treat. If you can find a TOS specialist and a spine specialist at the same facility, that would make it easy for them to consult each other. Recommended treatment for TOS is usually physical therapy and not surgery because surgery can make it worse by creating scar tissue. Mayo is a good place for a TOS diagnosis. Before I had spine surgery at Mayo, they tested and reconfirmed my TOS diagnosis to determine if it or my cervical stenosis was the bigger issue causing my symptoms. https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

Here is our discussion about MFR. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There is a provider search at http://mfrtherapists.com/

You also mentioned removal of Parathyroid glands. My elderly mom had this surgery because at least one of the four parathyroid glands was pulling calcium out of her bones. She had osteoporosis and was taking Alondrenate for several years. Right after the parathyroid surgery, she fell and fractured her pelvis, ankle, and foot and went through rehab 6 years ago. Since then, she recently had a spontaneous compression fracture of the spine. She has just consulted an endocrinologist who will be doing injections of Evenity to try to rebuild bone. I mention this because the endocrinologist said that after parathyroid surgery, and being on Alondrenate for ten years, it can have an adverse effect on bone building. You may want to consult an endocrinologist to ask questions about bone density and possible treatments following parathyroid surgery. The parathyroids are responsible for hormones that affect bone density, and if they have caused bone thinning, an intervention early on will be better sooner than later as in my mother's situation.

Would you please share what you learn as you follow up with your doctors? Have you consulted an endocrinologist, thoracic specialist or a spine specialist before? Is myofascial release physical therapy something you would want to try?

Jennifer - Thanks so much for your reply and information, I really appreciate it.
I have decided to get an opinion from a dr, who specializes in Tarlov Cysts since the cysts showed up on my MRI and I seem to have some of the symptoms. I think this is the best route to take at this point since the doctors that I have seen (Neurologist & Endocrinologist) cannot explain my symptoms.
My Carpal Tunnel surgery did relieve most of my pain after the surgery. However, the pain has started again - not as bad as before surgery but enough to notice, i wonder if it could be related to Tarlov Cysts since I read an article about an individual being diagnosed w/ Carpal Tunnel, having surgery without success. and then it was found that the cause of pain was due to Tarlov Cysts. I will have to see what the expert thinks about this as well as physical therapy.
Thank you again for your input

Hello. Was just made aware that I have Tarlov cysts in my thoracic spine. T6 to T12. Largest on is 20mm. Anyone have these in this area of spine? Thank you.

Hi @cpidgeon59, welcome. I moved your question about Tarlov cysts to this existing discussion posted by @vadaanglin
- Tarlov Cyst on the spine: Any advice? https://connect.mayoclinic.org/discussion/tarlov-cyst/

I did this so you can connect with fellow members like @bogobarb @qball2019 @klnd53 @bluej @mfratt @rkbunn @peacenlove who also have experience with Tarlov cysts. You may also be interested in these related discussions:
- Recovery after surgery for Tarlov cyst: What to expect?: https://connect.mayoclinic.org/discussion/recovery-after-surgery-for-tarlov-cyst-what-to-expect/
- Perineural or Tarlov cysts: https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/

Have the cysts been causing you pain? What treatment options have been suggested for you?

I would also like to be in on this discussion, as I have Tarlov cysts that are apparently the cause of my severe chronic lower body pain over the past six years. I can’t sit for long without pain, nor stand in one place for long (cooking and washing dishes are basically torture), and even walking occasionally gets difficult after a while. I also have restless leg type symptoms, but it’s not RLS. (No problem with pain or restlessness in my legs when I am lying in bed on my side at night, so clearly not RLS. It’s less of a problem when I take adequate iron supplements.)

I was considering going to Dallas to have an in-person consultation with Dr. F (I live on the East coast), but didn’t do so during the pandemic because I am over 65 and have asthma, so have been extremely cautious about COVID-19. I think I was trying to convince myself that the pain might be due to repressed emotions, which is actually a thing (sometimes referred to as Tension Myositis Syndrome or TMS, Mindbody Syndrome, or other such terms). But in my case the persistent chronic pain is more likely due to my Tarlov cysts, as I have tried the more psychological treatments for TMS with no success.

I probably should try to get a virtual consultation with Dr. F at this point, and may need more up-to-date scans (since my previous ones go back several years now).

Thoughts?

Thank you

Hi @cpidgeon59 . I just had an MRI for a possible CSF leak. They found at least four thoracic Tarlov cysts (right T7-T8, left T9-T10, and bilateral T10-T11). They also found fluid that they believe is from a CSF leak. It is visible down through T9 and again at T11-T12. The size of each cyst was not noted. I have back pain and nerve issues, but have not had any injuries. Based on what I read, thoracic Tarlov CSF cysts are rare, especially ones that are bilateral and leaking CSF. This has made me concerned about the diagnosis. Were yours confirmed? Did they treat them? If so, what was the outcome?