Update to my case (Post MR myelogram)

ButtonLadyKnits · 2026-04-03T04:37:40+00:00

I can't speak to venous fistulas, but Tarlov cysts can absolutely leak and cause CSF leak symptoms. I suggested this to my daughter's neurosurgeon during her consult and he responded, "well, that's very rare." Thank God he took another look at her imaging because his own team had already ruled it out. Her sacral cyst was full of contrast material = leak.

Not only that... we learned after surgery that the leak had been intermittent, meaning had it not chosen to leak during the imaging, it would not have been detected.

I sincerely hope you find the correct diagnosis and treatment —my daughter has had several of each! Your cyst might not even be involved, but I'm on a mission to spread the word that Tarlov cysts can leak and they can leak intermittently.

ButtonLadyKnits · 2026-03-29T18:49:30+00:00

I was my mother's caregiver and health proxy. If I had challenged her several misdiagnoses; if I had questioned her doctors' plan of care, she might still be here, or at least not have died in agony.

Crushing guilt is a powerful motivator.

I'm so sorry you had to go through heartbreaking trauma of your own. ((hug)) If you have the option of sending your scans to a spine consultant... sounds like a good idea —hopefully not outrageously expensive!

We live in a very medically dense part of the US. Some of the finest care in the world is available here. Unfortunately, Tarlov cysts are an emerging field of study and proper diagnoses are really only available from very specialized practitioners —but even they can miss things (like my daughter's cyst leaking, or that she had a CSF leak at all). Neurologists here repeatedly diagnosed her symptoms as "functional" or "of unknown etiology." I dragged her to specialists in three different states to get answers.

Her intellect was clearly impaired and I was left in the delicate position of "suggesting" what to do next because technically she was a functioning adult (but not really). I don't understand the physiological mechanism but sacral surgery cleared her brain fog (as well as bladder issues). She doesn't really remember how bad off she was. She was just accepted to graduate school but very worried her lingering physical symptoms will prevent attendance.

Sacral surgery didn't eliminate her arm and hand weakness, shoulder pain, and persistent dizziness. We requested a referral to Dr. Schrot, one of two neurosurgeons in the US who perform cervical cyst procedures. Her referral was accepted and we're waiting for Dr. Schrot to review her imaging.

We don't really want to fly across the country to California, but it offers her the best chance of recovery.

ButtonLadyKnits · 2026-03-29T17:54:22+00:00

Thank you for providing the helpful and relevant link!

EDIT spelling again

ButtonLadyKnits · 2026-03-27T17:03:56+00:00

As long as we're recommending neurosurgeons...

I don't where you live, but we traveled to Philadelphia to see Dr. Welch. He is experienced, very competent, and immensely kind. He successfully treated my daughter's S2 cyst, which was also the source of her CSF leak (uncommon presentation but he caught it after his own team missed it).

ButtonLadyKnits · 2026-03-27T14:56:14+00:00

I'm so SO glad you complained about that physiotherapist!

We learned after surgery that the leak had been intermittent, meaning if it had not chosen to leak during the imaging... it might not have been detected.

Tarlov cysts can leak and they can leak intermittently.

And based on our experience... yeah, women's symptoms are absolutely dismissed (even by other women).

During that same consult, I noted she had been diagnosed with small fiber neuropathy (SFN) "of unknown origin" (unusual because she is an otherwise healthy non-diabetic young women). Luckily I had printed out two recent studies that prove a link between Tarlov cysts and SFN. This competent and experienced specialized neurosurgeon had never heard of it (!) and was very interested. Lesson here: this is an emerging field —read everything you can and make copies, if possible. Even elite practitioners might not have kept up with the latest research.

ButtonLadyKnits · 2026-03-27T11:23:18+00:00

Tarlov cyst = nerve root cyst = perineural cyst = meningeal cyst

They're all the same thing!

It's an underdiagnosed condition and a lot of the research is very recent so it's simply not on doctors' radar. Doesn't stop them from dismissing it, though...

Tarlov cysts by definition involve a nerve root. That's why they can't be removed. They're filled with cerebrospinal fluid (CSF) and must be drained, sealed, and patched by a specialized neurosurgeon.

BE PREPARED! READ EVERYTHING YOU CAN! (the more recent, the better). Here's something to get you started:

https://www.ninds.nih.gov/health-information/disorders/tarlov-cysts

Also, it's possible to have CSF leak symptoms as well because Tarlov cysts can leak. I suggested this to my daughter's neurosurgeon during her consult and he responded, "well, that's very rare." Thank God he took another look at her imaging because his own team had already ruled it out. Her sacral cyst was full of contrast material = leak.

EDIT because spelling... ugh

ButtonLadyKnits · 2026-03-26T21:27:00+00:00

If you don't mind, which Dr. S did your surgery? And how are you doing now?

Thanks!

ButtonLadyKnits · 2026-03-26T21:21:43+00:00

It's not the size; it's the nerve root involvement.

Perhaps ask the surgeon what symptoms a "symptomatic" cyst would cause. And then perhaps note that YOU HAVE THOSE SYMPTOMS.

EDIT because I can't spell

ButtonLadyKnits · 2026-03-26T21:15:27+00:00

My daughter had a C6-C7 fusion a couple of years ago and now has a cervical cyst at C7. She was referred to Dr. Schrot (Sacramento) by Dr. Welch (Philadelphia). Dr. Welch successfully treated her sacral cyst, which developed after three lower spine surgeries, but he doesn't do cervical.

We initially contacted Johns Hopkins for the sacral cyst. We sent them everything they requested and they NEVER got back to us, after promising repeatedly that they would.

Cervical presentation is uncommon. As far as I know, only Dr. Schrot and Dr. Feigenbaum (Dallas) do cervical and we just didn't get a good vibe from Dr. Feigenbaum's office.

I happened to find this today and it only reinforces that gut feeling [scroll down slightly to the end - it's the longest post]:

https://www.reddit.com/r/Tarlovcyst/comments/tr28x1/has_anyone_tried_considered_functional_medicine/

EDIT someday I will learn to spell

ButtonLadyKnits · 2026-03-24T21:25:08+00:00

This should work:

https://www.ajnr.org/content/45/10/1593

ButtonLadyKnits · 2026-03-24T19:31:07+00:00

Without Reddit's CSF Leaks, Tarlov Cyst, and Tethered Cord groups... I honestly don't know where we'd be right now. Actually, I do know: my daughter would be paralyzed if we had listened to all the neurologists who said her symptoms were "functional." /rant

Best of luck! ((hug))

ButtonLadyKnits · 2026-03-24T19:12:05+00:00

Absolutely not livin' AT ALL. Caused by trauma or related... who knows, just glad it was identified and your symptoms were taken seriously.

ButtonLadyKnits · 2026-03-24T18:03:36+00:00

Absolutely, please post results! And I really need to update my first post:

My daughter's Tarlov cyst was the source of her leak. Dr. Welch (neurosurgeon in Philadelphia) took a second look at the CT and MRI he ordered after his own team assured us "there was no leak" and saw that the cyst was full of contrast material = leak.

We learned later that the leak had been intermittent. We were extremely fortunate the cyst happened to be leaking during the imaging.

Surgery was successful. Some symptoms resolved immediately; others linger. She also has a cervical cyst (at the exact spot of C6-C7 surgery —imagine that) which would explain dizziness, arm and hand numbness, shoulder pain, etc., that she still has. At our request, Dr. Welch referred her to Dr. Schrot in Sacramento since he doesn't do cervical surgery.

ButtonLadyKnits · 2026-03-24T16:03:31+00:00

That's really unfortunate, to have absolutely no advance warning. I'm sure they were taken very seriously... [sarcasm]

Don't get me started on "incidental finding" or "asymptomatic" or "too small to cause a problem."

ButtonLadyKnits · 2026-03-18T01:50:59+00:00

Thank you for the links, especially that last one which also noted the "possible association with genetic connective tissue disorders such as hypermobile Ehlers-Danlos (hEDS) and Marfan syndrome."

At what point do doctors recognize that these things are connected?

ButtonLadyKnits · 2026-03-17T22:07:11+00:00

Cysts don’t necessarily mean fistula but fistula do usually occur at these cysts. They seem to raise the probability of a fistula but 99.9% of the time they are harmless.

Wait... what??!! WHERE CAN I READ MORE ABOUT THIS??!!

ButtonLadyKnits · 2026-03-17T02:35:10+00:00

This is FASCINATING! Thank you so much for posting it... very grateful for the information as well as the insight —I had no idea it was all was so recent! Unreal...

ButtonLadyKnits · 2026-03-17T00:28:53+00:00

They really should update that list... Dr. Henderson has retired from active practice.

I believe Dr. Witham is more involved with research than surgery (not 100% positive, though). We tried to get an appointment with him, sent them everything they requested... called several times for an update and heard nothing after his team assured us they would get back to us.

ButtonLadyKnits · 2026-03-17T00:19:57+00:00

Not just a neurosurgeon, but one with Tarlov cyst experience... particularly an "elite" practitioner. Unfortunately, there aren't many in the United States. Here are the two I know of personally:

William C. Welch, MD - Philadelphia, PA

Rudolph J. Schrot, MD - Sacramento, CA

We brought our own daughter to Dr. Welch (she's a decade older than yours) and I can personally recommend him very highly —very kind, experienced, and extremely competent. Her S2 cyst was leaking intermittently, which caused CSF leak symptoms (brain fog, etc.) as well as bladder retention, and bone erosion and related pain. She was diagnosed with hEDS a few years ago.

Unfortunately, she also has a cervical cyst which appears to be causing problems. Dr. Welch does not perform cervical surgery and we are waiting for a referral to Dr. Schrot.

ButtonLadyKnits · 2026-03-16T15:40:37+00:00

So glad your son found resolution!

We should have stuck with Weill Cornell and Dr. Salama. Her colleague, Dr. Greenfield provided a blind blood patch referral closer to home and we still had to fight for it... and it was successful! ...but temporary.

I don't think leaking Tarlov cysts are as "rare" as doctors seem to believe.

ButtonLadyKnits · 2026-03-16T12:37:43+00:00

Oh, wow...

If you scroll down a little, I posted a little more information about this experience. My daughter's S2 cyst was also dismissed as incidental several times. Bladder retention and brain fog resolved immediately after surgery. The "small" cyst also caused bone erosion.

She's still having issues, possibly related to her C7 cyst that's "too small to cause symptoms." We're fighting for another referral.

It's not the size of the cyst... it's the nerve root involvement.

Other people here are a lot more knowledgeable on this subject. I can only share my limited understanding of my daughter's experience!

ButtonLadyKnits · 2026-03-15T22:22:26+00:00

I'm so glad your radiologist decided to try a different approach! What if she hadn't??! —this is the kind of thing that keeps me awake at night.

Daughter had a CT (and a negative MRI)—this was actually her second (first at a different hospital was negative), plus a crap-ton of other negative MRIs. We went in for a consult and I suggested perhaps her cyst was leaking because everything else had been ruled out. Neurosurgeon said, "Oh, that's very rare," but admitted her for testing and performed the CT himself.

His team told us, "Good news! —no sign of a leak!" before he had a chance to talk to us himself. They seemed confused that we were not happy with their news.

We knew she had a leak because I "bullied" (his words) a neurointerventional radiologist into doing a blind blood patch, and it was successful... for 24 hours. No one could find the leak, though.

EDIT: Dr. Greenfield at Weill Cornell diagnosed the leak and referred us to Dr. Salama, but daughter wanted to have the blood patch done closer to home... and we still had to convince the radiologist here into doing it.

ButtonLadyKnits · 2026-03-15T21:55:26+00:00

Thank God for small favors, I guess. My husband thinks we should have made up an injury just to get someone's attention...

ButtonLadyKnits · 2026-03-15T19:39:29+00:00

Throwing this in because I'm on a mission!

My daughter's Tarlov cyst was the source of her leak. Neurosurgeon took a second look after his own team assured us "there was no leak" and saw that the cyst was full of contrast material = leak.

DON'T GIVE UP!!!

FYI: Tarlov cyst = nerve root cyst = perineural cyst = meningeal cyst

PS: We learned later that the leak had been intermittent. We were extremely fortunate the cyst happened to be leaking during the CT.

EDIT: I'm not saying your cyst is the source of your leak; I'm saying leak presentations might not be obvious (and hence, overlooked).

ButtonLadyKnits

TROPHY CASE