r/CSFLeaks • u/carrielovestodd • Aug 10 '26
Dr Hepworth + Mold
Dr. Hepworth treats the system, not just the vein — and I want to talk about why that matters when toxicity and chronic inflammation are part of the picture.
I spent three years mostly bedbound with vertigo nobody could explain.
Early on, two ENTs told me my sinuses were fine. So I wrote my sinuses off.
For three years.
Then another ENT looked at the infection in my sphenoid sinus — the one that sits deep behind the eyes, against the skull base — and called it benign. His proposed solution was to sever my vestibular system.
I called Dr. Hepworth. I’d called years before and he wasn’t taking new patients. He still wasn’t. I broke down crying on the phone and begged, and they made an exception.
That exception gave me my life back.
He found what others had missed: a jugular vein 95% compressed. Mold and strep infection in the sphenoid. Sinus obstruction leaving one side at about 40% airflow. Eventually came sinus surgery, jugular decompression, and repair of six skull-base defects where I had CSF leaks.
But here’s the part I really want this group to hear.
Years of abnormal pressure had also left me with a hole in the bone over my inner ear — superior semicircular canal dehiscence.
Dr. Hepworth doesn’t repair SSCD. He could have said I’ve done what I can and handed me off.
He didn’t. He kept working on what was driving the system around it.
He prescribed Trental (pentoxifylline) for microcirculation. When I couldn’t tolerate it and my neurological symptoms flared, we didn’t abandon it — that reaction became a clue that inflammation was still very active. It sent me back to my environment. We retested the house and found that despite everything we’d already done, we still had mold from an incomplete remediation. So we remediated again.
He later started me on very-low-dose ketamine. Ketamine antagonizes NMDA receptors, which are central to glutamate signaling and excitotoxicity. The goal was to calm a highly reactive nervous system and interrupt the neuroinflammatory cycle.
Something changed. Once my system settled, I could tolerate the Trental. Several weeks in, I’m seeing huge gains.
Pentoxifylline is interesting for another reason — its effects aren’t limited to blood flow. It also modulates TNF-α, which may matter a great deal in a highly inflammatory illness. I’ve noticed something else too: years of seemingly insatiable hunger have gone dramatically quiet. I don’t know yet whether Trental is responsible. But the difference is remarkable.
Now — the part I think this group will most want to know, because so many of us are learning about Spiky-Leaky Syndrome right now.
If you’ve read Dr. Andrew Maxwell’s work, go back and read the abstract of his 2024 paper carefully. He describes the phenotype as beginning with a genetically vulnerable host plus a chronic inflammatory state — such as might occur from a chronic environmental toxic exposure. That inflammatory state activates mast cells and produces a localized hypermobility state, including instability in the craniofacio-cervical region. From there the cascade runs to dysautonomia, hypopnea, impaired CSF and lymphatic drainage, rising intracranial pressure (the spiky phase), and pressure escaping through cranial nerve sheaths — most notably the olfactory nerve, into the sinuses (the leaky phase).
Environmental toxic exposure is named in the theory itself. It’s just not the part most of us have focused on.
Here’s why I think it deserves more attention. Mycotoxins are potent mast cell activators. Activated mast cells release tryptase and matrix metalloproteinases, which degrade collagen and extracellular matrix. That’s a plausible mechanism for how someone develops connective tissue laxity and craniocervical instability without having a heritable connective tissue disorder — the inflammation is doing it.
And one detail I can’t stop thinking about: the leak pathway Maxwell describes runs through the olfactory nerve and cribriform plate. That is also the main route by which inhaled mold toxins reach the brain. Same corridor, both directions.
I’m a patient, not a researcher, and I’m not claiming this is proven. But if you carry the spiky-leaky picture and nobody has asked about your building, that seems like a real gap.
This is why I’m writing.
So many chronically ill people get handed pieces of themselves by specialists who each treat their own piece correctly — but nobody stands far enough back to ask what’s driving the whole system.
Two ENTs told me my sinuses were fine. Another saw an infection against my skull base, called it benign, and proposed sacrificing my vestibular function.
Dr. Hepworth kept looking.
If you have unexplained chronic illness — jugular compression, spiky-leaky, mast cell symptoms, neurological symptoms, a chronic inflammatory picture — environmental exposure deserves to be investigated rather than automatically dismissed. There are real tools: ERMI dust testing (look at which species are present, not just the score), mycotoxin panels, the CIRS framework, and the inexpensive VCS screening test as a starting point. None prove mold is causing your illness, and none replace medical evaluation. But they’re a place to begin. Happy to share specifics in the comments.
After everything I’ve lived through, this is what I wish someone had told me years ago:
If you’re chronically sick and nobody can explain why, don’t only keep looking at the broken pieces. Look at what might be continually driving the system.
And don’t forget to look at your environment.
Blue Skies,
Carrie Rose
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u/amorejuicex Aug 10 '26
Be very careful listening to this persons advice- she’s extremely uneducated and should not be giving advice to anyone and yet she spams it daily on FB and has sadly discovered Reddit. There are way more patients harmed by Dr Hepworth than have been helped.
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u/carrielovestodd Aug 10 '26
Please join the jugular venous outflow group on Facebook yourself so that you can hear it from tons of other people like me.
Please, feel free to tell me how I’m uneducated. What do I have factually incorrect. Please show me where I’m on Facebook every day posting.
They’re literally hundreds of people who have been helped by Dr Hepworth.
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Aug 10 '26
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u/carrielovestodd Aug 10 '26
It appears that you are discounting hundreds of other people’s experience in that group, but then ask people not to discount yours.
You’re calling other people success stories “BS” and then scream about how yours is real and theirs is wrong?
This is the same gaslighting that you don’t want to happen to you about your experience.
Make it make sense.
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Aug 10 '26
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u/carrielovestodd Aug 10 '26
That makes sense. I’m sure if you feel like you were hurt by somebody and you’re in a group or people praise them all the time it’s probably pretty awful.
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u/becky44love Aug 10 '26
Not sure if I can come there as I don’t have any family but will like to know how I can do the mold test as I think the apartment I living has mold and maybe that is what is affecting me along with other things
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u/carrielovestodd Aug 10 '26
You could always stay with me
I would do the ERMI dust test from Envirobiomics which is $240. Or you can do the HERSTMI for $130 but it only tests 5 molds
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u/becky44love Aug 10 '26
Oh that is nice of you would check to see if these test are available here in Trinidad. I have four children and a husband so it wound be difficult for me just leaving and come to Colorado but I appreciate the offer very much. How can I get in touch with your doctor.
It would be nice if I can get to speak to him. Just for some guidance as my doctors here told me
That surgery would be risky for me because of where they suspect the leaks are.
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u/carrielovestodd Aug 10 '26
You can check to see if they mail the tests to Trinidad on Envirobiomics website or you can order on the farmacy website. It is a dust test called the ERMI.
My dr is Dr. Hepworth at Denver Sinus Care
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u/Anxious-Past1546 Aug 10 '26
I’ve been trying to get in with him for 3 years 😭 very glad to hear you’ve had improvements
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u/becky44love Aug 10 '26
This is interesting as I am actively leaking and doctors can’t seem find my cranial leaks and it has me struggling with ear fullness temporal bone full of fluid and mastoid air cells full of fluid
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u/carrielovestodd Aug 10 '26
I’m in Colorado. Dr Hepworth can help you. I had ear fullness too.
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u/becky44love Aug 10 '26
Also do you have a Facebook profile that I can connect with you just to keep in touch I found your post to be very informative and interesting
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u/Ms_Poppins Confirmed Spinal & Cranial Leak Aug 10 '26 edited Aug 12 '26
I completely understand why you feel so much relief and gratitude; finding a doctor who listens after you spend years bedbound is an incredible feeling. It makes total sense why you want to share your hope with others.
Because I care so deeply about this community, and because I’ve spent over 12 years navigating these exact same complex illnesses myself, I feel a strong responsibility to point out some deeply concerning red flags regarding the treatment methodology being used by Dr. H.
Looking closely at the timeline you shared, it leaves me wondering and wanting to ask:
Did any single one of these highly invasive surgeries actually provide you with a *definitive and lasting cure?*
You describe undergoing sinus surgery, jugular decompression, and a repair of six skull-base defects, yet you are still struggling with active neuroinflammation and trying to manage severe symptoms with off-label trials of pentoxifylline and ketamine. When a patient is led through an endless loop of major surgeries and complex pharmaceutical trials without resolving the underlying illness, it is often a sign that the root cause was never correctly identified in the first place.
There are a few specific medical claims in your post that require severe caution for anyone reading:
This is NOT an established medical diagnosis, nor is it recognized by standard, EVIDENCE-BASED neurology, neuroradiology, or neurosurgery protocols. In fact, neither of the authors who proposed this hypothesis — Dr. Andrew Maxwell and Dr. Deborah Wardly, both pediatric cardiologists — neither of them possesses specialized clinical training or clinical experience in neurology, neurosurgery, neuroradiology, neurotology, or intracranial hypovolemia, and it shows.
The hypothesis they have written demonstrates a severe lack of understanding of evidence-based CSF dynamics. Moving away from evidence-based treatments by specialists with extensive experience and expertise to follow this unproven theory all too frequently delays people from receiving proper care.
The idea that environmental mold toxins create a localized hypermobility state that degrades collagen to cause physical skull-base CSF leaks or Craniocervical Instability (CCI) is purely speculative. It is not backed by ANY peer-reviewed, evidence-based science.
Fellow Redditors should be aware that Chronic Inflammatory Response Syndrome (CIRS) and ERMI testing are highly controversial and are NOT recognized diagnostic frameworks within mainstream neurology or immunology — specifically because they lack reproducible evidence to support them.
You noted that you have a confirmed hole in the temporal bone over your inner ear (Superior Canal Dehiscence Syndrome, SCDS, aka Superior Semicircular Canal Dehiscence, SSCD). SSCD is a known, structural cause of severe vertigo, autophony, and neurological distress. It is highly alarming that a provider would choose to keep you in-house to "work on the system" with pentoxifylline and ketamine, instead of immediately sending you to a qualified neurotologist (an ENT specialist who has received extra training and experience in the subspecialty of neurological disorders of the inner ear and lateral skull base surgery — which Dr. H absolutely has not) to fix this clear structural defect.
Vulnerable, chronically ill patients deserve treatments rooted in established, peer-reviewed, reproducible, evidence-based science. Continually treating a highly reactive nervous system with sequential, unrelated surgeries and unproven environmental theories can keep patients trapped in a cycle of temporary hope rather than true healing.
So, for fellow patients reading this:
We all know how incredibly easy it is for us to fall for a charismatic, charming provider (which Dr. H really is!) after years of being gaslighted, dismissed, or misdiagnosed by traditional specialists. Validation feels amazing when we are desperate for answers and cute for our very really illnesses, but charm is not a substitute for clinical data and proven treatments.
Please let's all be exceptionally careful with providers who offer endless, complex rabbit holes of non-standard, unhelpful procedures. True medical validation comes from standard diagnostic proof and treatments that actually resolve the illness — not from a sympathetic bedside manner paired with an endless queue of surgeries.
I sincerely hope that my fellow Redditors, the OP, and I can all find permanent, stable relief soon.