Tarlov Cyst on the spine: Any advice?

Kindof in same boat as you. I'm in Toronto and feel like no docs here understand what tarlov cysts are and just dismiss me. Have a large Tarlov cyst in sacrum pinching nerves , am considering a flight to my home country where the surgery is definitely available.
Would your 10hr flight be better if its a business class where you can be lying flat? Or do you think it's irrelevant..simply being in a pressurised cabin just makes the pain worse?

The flight to my home country is around 19hr so would wanna seek any advice i can....

There is a Canada Tarlov Cysts support group on Facebook. This could be a good resource for you if you have a Facebook account.

I have multiple small cysts on neural foramina on C5-C7 and T1-T2 but have not been investigated. I’m 33 and use a walker now. Hope you get the help soon 🙏🏻 blessings and healing ❤️‍🩹

Dr Witham at John’s Hopkins works on them. I am going in January for a consult. If any place knows what to do it should be John’s Hopkins.

I have MS and fibromyalgia. I've had excruciating pain running down my left butt cheek down to my toes. Thought it was my ciatic nerve. My pain Dr sent me for an MRI, with contrast. Came back as consistent with Tarlov syndrome. Next visit I asked my Dr what can be done and he said that they can be popped, removed, whatever, but "HE" wasn't concerned about that right now. I said "I am. I'm in alot of pain here. Can't put any pressure on my left side, can't sit, can't sleep, etc. " That was almost a year ago. Now it's starting on my right side. Can you get it on both sides at the same time?

Hello @grammyof5 and welcome to Mayo Clinic Connect. I am so sorry to hear of your pain and that you haven't felt heard with regard to your pain. Members such as @francesmharris123 and @kennoct may be able to help support you.

Do you think this warrants a second opinion to make sure the treatment plan is what you feel comfortable with?

Can a Tarlov cyst go away on its own?

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

Can a Tarlov Cyst go away on its own?

I have a large sacral Tarlov cyst. My neurosurgeon and PCP told they rarely go away on their own, and my research has told me the same.