Looking for Input Re: Tarlov Cysts

Posted by ablc @ablc, Jan 1 9:22pm

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.

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@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

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