@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

I just went to Dr Welch in Philadelphia and he told me if he did surgery I would have a 90% to 95% chance in decreasing the pain by 50%. He said I would still have a sitting problem. He has done 500 Tarlov cyst surgeries. If I still won’t be able to sit without pain I don’t think I will let him do surgery. I am going to Dallas, Tx to see Dr. feigenbaum who socializes in surgery on Tarlov cysts. If you Google him you can find out a lot about Tarlov Cysts, surgery and recovery. I guess I will find out more about the % surgery will decrease the pain. I hope I get a better response since he is a specialist.

@francesmharris123 Getting second opinions (and more) is always a good idea when you are contemplating surgery. Many surgeons don't promise to decrease pain, but instead they try to improve function. There are many factors leading to pain, and scar tissue after a surgery can also contribute to it. Myofascial release is a physical therapy technique to release tight scar tissue and it can relieve pain. I have done MFR before and after surgery and it has helped a lot. Here is our discussion about MFR in the Neuropathy Group.

-Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Do you have an appoinment for a consultation scheduled?

Hi, ablc,

I haven’t posted at Mayo for quite awhile, ever since my surgery and extensive research, following the very rare incidence of my hand enchondroma evolving into a chondrosarcoma, following many years.

Now, researching my, again, also rare cervical Tarlov Cyst (C7), I’m brought to several discussions on Mayo Connect… I’m grateful. I hope I’m on the appropriate chain.

While I’d, too, been “incidentally” diagnosed with several sacral TC’s back in 2011, it does seem they have been the “typically asymptomatic”, as one frequently reads. But learning more, today, of the nerves of the spine, who knows if occasional strange twinges I’ve had over the years, are from these?

However, reading of your carpal tunnel, I realized I had to write. From my chondrosarcoma history, I learned my best ammunition was knowledge. So, I looked up, today, and saved every study on the Cervical TC subject that I could.

Similarly — while this new malady is also called rare, due to limited studies being available, as well (meaning there’s no ‘proven’, standardized remedy or protocol) — I was able to happily find the full content of four of five found studies…. (Making me wonder if Mayo could, possibly, provide the fifth? Hmmm…)

But one of them, specifically, had to do with a case, sounding similar to yours, where a dX of Carpel Tunnel in reality was due to cervical TC?

Here’s the full study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369044/pdf/586_2011_Article_1839.pdf

And if it helps, here’s a link, too, to a site where it really helped me understand — and truly visualize — just where the nerve root exits the foramina, and precisely which sensory or muscular area of the body the nerve controls. (This is for my C7, but one can navigate the site to find their specific spinal segment/root.). https://www.spine-health.com/video/spinal-motion-segment-c6-c7-animation

It seems it’s important to realize two separate symptoms are involved at every area: sensory and musculature. For example, my initial symptoms were sensory, burning shooting down the back of my left arm, running from the top of my shoulder to the elbow, AND musculature, with the sudden inability to both raise my left arm higher than my shoulder, inexplicably, or to extend my left arm out enough to simply reach the kitchen faucet.

You can see on this wonderful video, precisely, how my C7 narrowing from swollen nerve root pressure (vs. normal, expected “degenerative” changes [I’m 75]) works. It was an eye-opener! I’m hopeful by sharing this link others, who seem puzzled by sensitivities and weaknesses they mention, might find and grasp how their TC pressure impinges on their specific nerves, too.

I close with it’s been said the only fear is the unknown. So, I’m trying to learn all I can about my options before seeing the pain specialists and neurosurgeon. Have others experienced what I have? Will mine worsen? Will it become permanent? Even an also recent, sudden eye blurriness — a “vascular event” — has me wondering about the artery, too, I’ve read passing thru some of the cervical joints.

So far, it seems the most important finding is that, unlike lesser concerns when normal — but still important — degenerative changes happen, with foramina narrowing and nerve impingement, the nerve is unforgiving, and sensation can be lost.

I liken it to houseplants. We’re all likely aware of those that are “forgiving”, bouncing back after neglectful watering, where others are not. Once they wilt, that’s it.

It seems important to know action matters? Our nerves, unfortunately, fall into the latter, unforgiving group, it would seem? Thus it’s important to both learn as much as we can and to seek out expert and knowing medical professionals.

Heartfelt thanks to all who participate!

Kindest regards,
Linda