Tarlov Cyst on the spine: Any advice?

Posted by vadaanglin @vadaanglin, Jan 31, 2019

I have a large tarlov cyst 2.5cm and 3.5cm on the spine in the lumbar region. Some what rare and doctors seem to know little about and say they are nonproblematic. I'm having chronic pain. Any advise will be appreciated.

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@anniebrook

Im in BC,Canada.Talking to my lovely personable GP is useless,says lots of words and excuses but no answers for my pain issues. I have had MRI's and it seems I have Torlov cysts too. I attend the pain clinic for various treatments non of which work very well. EVERY Dr says they don't cause pain, 'they mean nothing and you can be born with them'. The person who ever it was that reported on my MRI's said " there is no account for this woman's pain' so again another Dr who has no idea. I bet if someone would listen to me and treat me in a holistic way I could show them exactly where the 2 that I have are because I can put my finger right on the exact spot on my spine where the pain is radiating from. I keep wondering if it would be worth me going back to live in UK to see a Dr in my own country to see if they would have answers. I am 67yrs old I've had pain since I was 29yrs old but this pain is about 10yrs old and I feel I am just sitting waiting to die because there are so many things I can't do. I went back to UK 2 Xmas's ago and I was in so much pain on the 10hr flight I feel I can't do it again, I had to constantly move and if anyone knows what a Huntington's Patient looks like well that was me on the plane. IWISH SOMEONE WOULD COME UP WITH AN ANSWER.

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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….

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@kennoct

Is anyone here from Canada?

I'm having lower back pain for 5 weeks (I know, it isn't long compared to many others on this thread, but I wanna fix it before it got worse and chronic) which progressed into my right leg and toe with tingling and numbness since the 3rd week. It's disabling me from usual daily life and work and pretty much anything even as simple as getting dressed. After MRI on my lower spine, radiologists found no herniated disc or other disc issues, but found at least one sacral Tarlov cyst, pronounced to the right, associated with bone remodelling.

My symptoms are getting worse since onset, as now I started experiencing mild bladder issues. My current treatment is only NSAID since originally suspected to be disc problems which were ruled out in MRI.
I'm residing in Toronto from Hong Kong, and have no US visa. I read up in the Foundation website and found there's a doctor in Canada, Dr. Kieran Murphy MD, for such issues. But I have no idea how to navigate through the Ontario public healthcare system to get referred specifically to Dr. Murphy.

But looks like Dr Murphy is now on the research side only instead of operative. If he no longer perform operations I don't know how I can find any other neurosurgeons who are experienced in fixing Tarlov cysts..

(I did find some good neurosurgeons from google but not sure do they do Tarlov cysts..and the referral process to find a relevant neurosurgeon even for just consultation is long and tiring..)

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

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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 ❤️‍🩹

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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.

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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?

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@grammyof5

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?

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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?

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Can a Tarlov cyst go away on its own?

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@ablc

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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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

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Can a Tarlov Cyst go away on its own?

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@armenm2121

Can a Tarlov Cyst go away on its own?

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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.

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