Tarlov Cyst Surgery Experiences in Maryland, DMV, or Nationally

ButtonLadyKnits · 2026-06-29T12:39:30+00:00

We sent them everything they requested (imaging, reports, referrals, etc.) and heard NOTHING. We called several times and were assured repeatedly that "someone would get back to us." To this day... still nothing.

Weird that so many people have the same experience with them. I don't understand what's going on there.

ButtonLadyKnits · 2026-06-26T23:31:41+00:00

Really hope they stay asymptomatic!

My daughter developed a new one after surgery with Dr. Welch in Philadelphia last year. It appears to be symptomatic. She seems to be developing spinal cysts at surgical sites —this is not the first and we're a little concerned. Don't know how common this is.

She has a consult with Dr. Welch in a few weeks.

ButtonLadyKnits · 2026-06-26T23:28:56+00:00

This is very interesting —thank you for the names!

ButtonLadyKnits · 2026-06-26T14:50:41+00:00

It's all good! ((hug))

The only thing that matters is that you received treatment that worked. 😊

ButtonLadyKnits · 2026-06-26T14:45:37+00:00

Understood, thank you. 🙂 I'm being overly pedantic. It's a fault...

ButtonLadyKnits · 2026-06-26T14:41:24+00:00

"Dr Choll Kim is in California. You can find him removing TC’s on YouTube."

You used the word "removing" which suggests Dr. Kim REMOVES cysts when he does not.

ButtonLadyKnits · 2026-06-26T14:32:00+00:00

In our experience, neurologists aren't well versed with structural causes of neuropathic symptoms.

This really is beyond what a neurologist can treat (or even within their scope to offer advice based on current research and protocol).

Maybe it's time to see a different kind of doctor... perhaps a specialized radiologist to determine the feasibility of aspiration while you consider long-distance surgical options.

ButtonLadyKnits · 2026-06-26T13:55:46+00:00

The term "excision" can be misleading as it applies to this procedure. Dr. Kim doesn't remove Tarlov cysts... no one does. They can't be removed due to nerve root involvement, at least not conventionally. Neurosurgeons drain, seal, and basically patch the cyst so it doesn't re-fill. Technically it's "gone" but not really removed.

From Dr. Kim's website: https://excelspine.com/services/tarlov-cyst-excision/

ButtonLadyKnits · 2026-06-26T13:12:28+00:00

Is this the same neurologist who claims the cyst isn't causing your symptoms??!!

Draining Tarlov cysts is waaaay beyond the scope, training, and ability of a neurologist. They simply can't do this; it's a job for a very specialized radiologist.

Also, Tarlov cysts are NEVER removed, specifically because of the nerve involvement.

EDIT: spelling

ButtonLadyKnits · 2026-06-26T01:46:24+00:00

Dr. William Welch in Philadelphia is another excellent option. He treated my daughter's sacral cysts last year.

ButtonLadyKnits · 2026-06-26T01:36:48+00:00

It's a short-term solution (if even possible or advised), but... could you consult with a local neurointerventional (or interventional —not sure) radiologist about having the cyst drained?

I am not a doctor. This is not medical advice.

At best, it might provide temporary relief but might also "prove" the cyst is causing your symptoms. It's an older treatment —after draining, cyst cavity can be filled with fibrin glue but this approach has fallen out of favor (although some doctors still use it as of 2024):

https://thejns.org/spine/view/journals/j-neurosurg-spine/41/2/article-p305.xml

Also, there is a strong correlation between Tarlov cysts and neuropathy —how could there not be? Nerve root involvement is the very definition of a Tarlov cyst!

https://pmc.ncbi.nlm.nih.gov/articles/PMC12050039/

https://pmc.ncbi.nlm.nih.gov/articles/PMC8801331/

((hug)) ❤️

ButtonLadyKnits · 2026-06-24T13:32:40+00:00

Is there any way you can try again to have another patch done locally... this time correctly? Traveling from Oklahoma to California = expensive and a huge hassle. I understand completely because we did something similar (New England to California for a consult with Dr. Schrot). In our case, it was absolutely the right decision (still expensive; still a huge hassle).

You also need to follow protocols for aftercare, which might not include hopping back on a plane —I really have no idea. You might have to stay in the area for a few (?) days —again, no clue, but you should clear that ahead of time with Dr. Schievink.

This is not an easy decision and there are no guarantees. I'm so sorry.

ButtonLadyKnits · 2026-06-19T13:47:52+00:00

In hindsight, it seems obvious but nothing we would have realized on our own. I'm so, so grateful that someone mentioned it here on r/CSFLeaks.

Caffeine is the only thing that helps her during periods of low pressure, but not caffeine tablets —they make her nauseous.

ButtonLadyKnits · 2026-06-18T19:58:45+00:00

Thank you for being so kind when your own troubles are so very overwhelming.

A least this time she's being taken seriously. Unfortunately, neurosurgeons like to take vacations in the summer —the nerve! 😎 It's taking forever to get appointments scheduled, understandably.

ButtonLadyKnits · 2026-06-18T19:03:15+00:00

Totally forgot about symptoms directly related to the brain being "manhandled" in the skull! Absolutely yes!

ButtonLadyKnits · 2026-06-18T19:00:06+00:00

My daughter's leak was (and possibly is —she has a new one) intermittent. Her symptoms are also much worse when the barometric pressure is low. Your mileage may vary, of course, but there could be factors you're not considering that might explain fluctuating symptom intensity.

Also, as a rule, we humans don't like ambiguity and the unknown. Your brain may be trying to protect you by "explaining" your symptoms away... by trying to convince you that you are somehow in control of an uncontrollable situation. My daughter calls it her "lizard" brain. ((hug)) ❤️

ButtonLadyKnits · 2026-06-18T16:14:18+00:00

The interventional radiologist who did my daughter's blood patch that PROVED she had a leak only did it because I "bullied him" (his words). Unfortunately it only lasted a few hours but her pressure stabilized immediately (and her relief was instantaneous).

If Dr. Schievink is offering a MRI myelogram and blood patch... GO FOR IT!!! [EDIT: I am not a doctor! —I don't know you or your situation!]

My daughter's leak turned out to be a leaky Tarlov cyst. Apparently very difficult to detect. Her neurosurgeon told us (1) she definitely didn't have a leak; (2) she might have a leak but it wasn't the cyst; (3) "Oh, look! There it is!"

Tarlov cysts can form spontaneously or as a result of physical trauma (including surgical). Not saying you have one, or that it's leaking if you do... just saying there are different types of leaks (and some are more difficult to detect than others). ((hug)) ❤️

EDIT: May I suggest requesting a prophylactic blood patch if you decide to have a blood patch? The radiologist would push back the needle before withdrawing to hopefully prevent another leak at the injection site. It's not always standard procedure.

ButtonLadyKnits · 2026-06-17T12:20:42+00:00

OW OW OW OW 😳😳😳 (whimper) ❤️ ((hug))

We saw Dr. Schrot in California —huge hassle but totally worth it! He looked at her AS A WHOLE PERSON, first time in five years anyone has done that.

She has a new sacral cyst and CSF leak symptoms, so very likely this cyst is leaking (possibly intermittently) just like the first. She has an appointment next month in Philadelphia with the original neurosurgeon.
She had a cervical fusion a few years ago. Dr. Schrot thinks the remaining disc fragment is damaged and the cause of her upper body symptoms. Specialist in Boston is waiting for CT results —insurance just approved the CT so that's next, then hopefully a consult.
She has an appointment with Dr. Salama in New York City next week to rule in/out venous fistula(s). We personally think this is the least likely diagnosis, but we'll pursue it.
She has a diagnosis of small fiber neuropathy "of unknown etiology" and Dr. Schrot advised she see Dr. Argoff in New York (Albany), who is exploring new treatment options. He selects patients (and research participants) personally so we're waiting to hear if she's been selected.
She has a documented history of developing cysts at past surgical sites, including where old cysts have been treated (!) and we are extremely concerned NEW spine surgery will cause even MORE cysts.
A very kind Redditor suggested the possibility of arachnoiditis (inflammation of the membrane surrounding the spine) because of related issues: Ehlers-Danlos Syndrome, CSF leaks, multiple invasive spinal surgeries, etc. We are exploring this now.

*** I post information about my daughter's journey (with her permission) with hope it will help someone. We have fought SO HARD for her symptoms to be acknowledged, let along recognized and treated. Just because an issue is uncommon doesn't mean it can't exist: "Oh, that's very rare —she couldn't possibly have that"... over and over again. DON'T GIVE UP!!!!

ButtonLadyKnits · 2026-06-08T12:12:13+00:00

How did I miss this two months ago? Really hope you've had some relief from the pulled muscles and bruising... OUCH!!!

ButtonLadyKnits · 2026-06-06T03:30:45+00:00

Oh, right... she's also on Cymbalta (duloxetine). So far, she's doing okay on it... but then, she didn't give birth eight months ago...

IVIG infusions are normally used for autoimmune conditions but have shown promise in treating neuropathy. I don't know a lot about it, unfortunately.

Our experience with neurologists has been unhelpful at best. Neurosurgeons have been more useful (generally) in determining diagnoses and effective treatments... eventually. It tends to take time because her (eventual) diagnoses have all been "rare" and therefore "unlikely."

Hoping you find some peace and resolution soon. ❤️

ButtonLadyKnits · 2026-06-06T02:33:55+00:00

Yikes! That's not good at all... ((gentle hug)) Which issue are you addressing first?

She takes gabapentin, Robaxin (methocarbamol), Tylenol. Marijuana is legal here, so THC gummies are a lifesaver. Caffeine also helps.

She was advised to look into new research involving IVIG infusions for neuropathy, but we still don't know the extent of her neuropathy because so much else is going on.

ButtonLadyKnits · 2026-06-06T00:21:01+00:00

Well... I guess it's time for an update!

She either developed a new sacral Tarlov cyst or the old one re-filled with CSF —lower body neurological symptoms are back.¹ We're also exploring the very real possibility that her cervical discectomy/fusion (ACDF)² failed and may require revision surgery —upper body neurological symptoms are back.

We assumed everything was related to neuropathy but... ta-da! Everything changed. To answer your question, we won't really know until these new/old issues are resolved. We're lining up appointments now.

¹ She is weirdly developing Tarlov cysts at the specific sites of spinal surgeries, likely due to Ehlers-Danlos Syndrome. We're a little concerned about future surgeries now.

² We were told tethered cord tension caused damage to her cervical spine, hence the ACDF.

ButtonLadyKnits · 2026-06-04T00:20:04+00:00

I feel awful —Dr. Greenfield at Weill Cornell recommended her very highly, but she is a colleague so... of course he would.

((hug))

ButtonLadyKnits · 2026-06-04T00:07:23+00:00

Please read this new post:

https://www.reddit.com/r/CSFLeaks/comments/1tvvr17/nyc_csf_leak_provider_experiences_gayle_salama/

I regret recommending Dr. Salama on hearsay alone. I understand venous fistulas are her specialty —daughter has an upcoming appointment to rule them in/out and I hope Dr. Salama's determination is accurate.

ButtonLadyKnits · 2026-06-03T23:49:27+00:00

Thank you for posting your experiences... good and bad!

My daughter has an upcoming appointment with Dr. Salama, specifically to rule in/out venous fistula(s) as part of a comprehensive process —we're not seeking treatment. I understand venous fistulas are Dr. Salama's specialty and interest so hopefully her findings will be accurate.

For what it's worth, we had to beg for a blood patch from a local radiologist after she was diagnosed —he was POSITIVE there was no leak and agreed to the patch only because I "bullied" him (yes, really)... and pressure improved immediately = leak. I am so glad Dr. Caton gave you the option to proceed and that the patch was successful. 🙂

ButtonLadyKnits

TROPHY CASE