Tarlov Cyst on the spine: Any advice?

Yes, Tarlov Cysts that cause pain are rare. However, I had a large one the size and shape of a hotdog. I had a very good neurosurgeon from Johns Hopkins in Baltimore, MD that was very knowledgeable on this issue. After many tests and a few aspirations, he decided it best to go to one of the best neurosurgeons on the east coast, Dr. Welch at the PA hospital in Phildelphia, whose specialty was Tarlov cysts. I trusted my neurosurgeon and met with Dr. Welch. He scheduled a surgery. (Due to the fact that this Tarlov cyst, over time, wore away my sacrum in a large area, I had to have a synthetic titanium plate attached to what was left of the sacrum) The operation was performed without complications. The recovery was awful, and very painful. I continued to see my neurosurgeon from Johns Hopkins until he passed away a couple of years ago. I'd say that I never really fully recovered because the plate that was put in my sacral area has since broken. No doctor will remove it. I do believe that something is compressing my nerves somewhere and causing my neuropathic pain. I have seen Pain Management specialists to try to "manage" my pain. It's there that I am prescribed medications. I've had many nerve injections that have yet to work to decrease my back pain. I have had 3 TENS units implanted and removed because they caused me to get infections. I am taking a number of medications to help me tolerate my pain. I am currently the following medications; a narcotic, an antidepressant, an anti-spasm and an anti-inflammatory medication. They only take the edge of my pain. On a scale of 1 to 10, I can honestly say that I've never really gone below a 7. About 10 years ago I started with pain, tingling and numbness in my feet. I had a core sample done in my calf and the results showed that I had small fiber neuropathy. A neurologist tried different medications for the pain and that's when I was put on an antidepressant that I'm on at this time. Last year I had a nerve conductive study performed to see how my neuropathy had progressed. The results showed that my small fiber neuropathy has now become worse. I now have peripheral polyneuropathy. The pain from this has creeped up to my knees. It is also in my hands. I have a visit scheduled to see the neurologist to discuss how to deal with this. I'm sure that she's going say that I should continue with my medications, try physical therapy and exercise.
None of these physicians or pain specialist have ever been in this kind of pain or they wouldn't be telling me to exercise. I can barely stand on my own two feet and have to bend over and lean on countertops to stand up. I hope this helps. I feel for you and I hope that you have more success than I.

I had Tarlov Cyst surgery at the PA hospital. Dr. Welch, the neurosurgeon performed my Tarlov surgery.

And I for you my friend

Hello,
I had an extensive workup and after several orthos who did not know the cause for my sudden onset of pain I was finally diagnosed with several Tarlov cyst in my sacral area. My images were sent to Dr. Feigenbaum , a neurosurgeon who specializes in trading Tarlov cyst ,in Dallas, Texas who recommended surgery. He and a doctor in California are the only two that really have extensive experience in treating these and it takes several months to get on his schedule. I have researched the techniques and read many firsthand accounts from a “Tarlov cyst support group on Facebook”. The procedure is very scary and a very long recovery up to two years. Some people say it gives them their life back while others are made worse. My pain has decreased significantly with time as I have been dealing with this for about six years and I have more good days than bad so I have elected not to have surgery as long as I am somewhat functional.

Same here! That surgery is scary

Hi all,

I just received an MRI report of my cervical spine and it shows:

C4-C5: Mild disc bulge. There is no canal stenosis. There is uncovertebral joint hypertrophy with slight foraminal narrowing without nerve root compromise.

C5-C6: There is a disc bulge without canal stenosis or foraminal narrowing. A right perineural cyst is present.

C7-T1: Mild disc bulge. A left perineural cyst is present.

T1-T2: A prominent left perineural cyst is present. There is no canal stenosis or foraminal narrowing.

I have been having neck pain and what I describe as a hump at the apex of my neck/shoulders for just about 4 years. Did the whole physical therapy/chiro thing and it just kept getting worse.

Recently, about the last 3-6 months, the pain was spreading and numbness/tingling down my right shoulder and arm started anytime I’m laying down and sometimes even when I have to sit for long periods of time (at work).

I do also have lower back pain but with my neck pain being more severe, that’s where my doctor chose to start.

Obviously, it’s a holiday so I’m not sure when I’m going to hear from my doctor so I’ve been doing the one thing they tell you not to do.. read about it lol

So I’m here reading your stories and becoming familiar with what this all means so hopefully I can go into the next steps with a basic understanding of what I need to be doing, asking, and advocating for.

Thank you all for sharing!

Welcome! Thank you for sharing. My L3 superior end plate compression fracture brought me here. I am waiting on an MRI and like you, the holidays have slowed down scheduling.
It was interesting to see the information from your MRI, I know my results will help with the physical therapy in my future.
I hope you find support and valuable information here.

@makeitmakesense Hello and welcome to Connect. You've picked a good discussion to join to learn about relevant patient experience. The good news in your report is that there isn't canal stenosis, and the slight foraminal narrowing (where nerve roots exit between vertebrae) is not compromising the nerve. Have you had a whiplash? The reason I ask this, is because there could be other issues that are not spine related that can cause overlapping symptoms of numbness and tingling in the arm or shoulder, such as Thoracic Outlet Syndrome. I have that, and basically it is a nerve compression between the collar bone and rib cage where nerves are traveling to the arms. There are some tight places there that may be compromised by scar tissue or overly tight muscle and fascia. My therapy for this is stretching the fascia which is called myofascial release. TOS is most often missed by doctors, so they may go down a different path. That was true in my case when I had carpal tunnel surgery than didn't help completely. Ultimately, I did end up with a collapsed disc, bones spurs and spinal cord compression which needed surgery. It is important to try to correctly identify all the possible sources that may be contributing to your pain. MFR (myofascial release) is not like traditional PT. It is more like doing a yoga stretch or massage that you hold some pressure and wait for tissue to release.

Here are a few links to information.

Thoracic Outlet Syndrome
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Jennifer,

I haven't had whiplash. This has been an issue that's progressing over 4+ years specifically in my neck. I've had lower back pain for years since my children but especially since my twins about 12 years ago. Going into my original consult, I did tell them that I have pain in my neck and lower back but my pain being the worst in my neck. Knowing that I have these cysts, this now makes me want to push for imaging of my full spine. I'm at the very beginning of this - 4 years ago I only had an xray and they recommended physical therapy and chiropractic care. I did that. None of that helped much at all, only temporary relief. So I decided to stop and push my GP to refer me to a spine doctor. I saw them for an initial consult in October which they wanted me to get the neck MRI'd first, that just happened on Monday. The previous xray from Jan 2021 only showed "mild arthritis" in my neck, no other testing etc was done at that time or since until this MRI.

@makeitmakesense That sounds like a good idea to have full spine imaging because you just don't know if there are any other issues that may be causing symptoms. I had full spine imaging before my cervical neck spine surgery which was a fusion of C5/C6. The physical therapy that has helped me a lot and been used in my rehab is myofascial release. Here is a discussion where you can learn more.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/