Tarlov Cyst on the spine: Any advice?

I too was recently diagnosed with a large assist in the sacral area. After another neurosurgeon and multiple pain. Doctors missed it for years. I have multiple autoimmune issues, including interstitial cystitis which I now think was a misdiagnosis because the cyst can cause bladder pain. I even have an interim device to help with that pain. But nothing touches the chronic pain that I am experiencing with this cyst, especially at night, throbbing, no asleep. I’ve taken ibuprofen, I’ve rubbed CBD oil 1200 mg, I’ve done lidocaine patches, I’ve done muscle relaxers, I’ve done sleeping AIDS from a doctor, Nothing is helping, and I am so desperate for some relief. I’m very happy to find this for him and speak with others who have also been diagnosed and what you are doing.

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!

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!

@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.

The big problem with the medical community and Tarlov cysts is that close to 80% of folks have them, and they are asymptomatic for them. The few percent of us whose Tarlov cysts are symptomatic are disregarded because very few neuroradiologists have the skill set and expertise to notate on your MRI report the number of cysts, dimensions of each cyst, fluid volume of each cyst, as well as the exact location of each cyst. I just had my pain specialist order a MRI requesting all of that information. I paid $550.00 for it. The report came back with not one of those requests notated. The neuroradiologist argued that the cysts are benign, incidental findings and it was ludicrous to ask in the first place. My doctor called the radiologist and found out he just didn't know how. I was refunded all my money. Now, I'm looking for a neuroradiologist closer to Florida to send the MRI disc to. Perhaps John Hopkins in Jacksonville. I have done hours of research, purchased medical journal articles, etc. in order to become more educated to advocate for myself. Please do not give up. If you do, you've lost. Keep hope alive!
I'll be happy to share what I've learned. Just feel free to ask.

Has anyone been diagnosed with a Tarlov cyst on their lower spine? I would appreciate any information concerning this. Thanks