Marion Davis on LinkedIn: This email response from a pain management anesthesiologist in a hospital… (2024)

A great article by Linda Bluestein, M.D. on EDS and HSD!In the FemTech book club I go to each month, we were talking recently about how inappropriate conclusions drawn on female participants of studies often impact not just women but men too. Myth Number 5 stood out to me: EDS and HSD are “Female Conditions.”Spontaneous spinal leaks are not uncommon in the EDS and HSD population. Many spinal leak studies conclude that spontaneous leaks are more common in women. However, the study designs are often highly flawed with low numbers of participants.There is an interesting situation here where women tend to present with more "typical" symptoms from a spinal leak. Neurology at Mayo in Phoenix, AZ, and the neuroradiologist they use for spinal leaks at Banner Health notably look for sudden-onset autonomic dysfunction as a major sign that someone has a spinal leak. This differs from centers like Duke where the neuroradiologists try to tell women with spinal leaks that they just have POTS.From what I have seen of my immediate and extended family in which we have EDS/HSD on both sides and spinal leaks galore, the men do not tend to seek care very persistently and may present with more behavioral symptoms due to frontotemporal brain sagging syndrome as is known to happen at times secondary to a spinal leak. They say the cause of schizophrenia is unknown. Yet, spinal leaks are one known treatable cause for patients diagnosed with schizophrenia who were later determined to have intracranial hypovolemia.Thus, it ends up being the EDS/HSD women primarily seeking spinal leak care and setting the standard of autonomic dysfunction involvement. However, medical misogyny affects everyone. When I went to Duke that proclaims to be a spinal leak expert center, one of the neuroradiologists there dismissed the presence of a thoracic osteophyte that was later determined to be my spontaneous leak site and is one of the most common causes of a spinal leak."We get so many women coming here who have those," he told me later in a portal message. "And they don't have a spinal leak. Thoracic osteophytes aren't important." This was all after a dismissive experience in a consultation. You would think he would have made the correlation that there are a lot of women showing up with suspected spinal leaks who all had thoracic osteophytes and the potential clue there, but alas, his brain did not make those connections.Currently, I am watching my brother struggle with navigating the healthcare system with a likely spontaneous leak. I was the one who had to recognize that he had a likely leak. His symptoms aren't what would be expected for a spinal leak patient as the male presentation of symptoms can be different, but considering his symptoms and disc degeneration, his leak cause would likely be mid-to-low-thoracic disc involvement.And yet because of medical misogyny, physicians dismissing women have set the standard to fail to diagnose all genders.

When your persistent efforts have resulted in your work becoming a significant enough part of the data that Google AI is now accessing your articles...In looking at the search rankings, it was unfortunate to see that there was a recruiting company article also referring to bedridden talent and providing guidance on how people can seek employment while bedbound. Unfortunate in that there is a need, but fortunate in that more awareness is being brought to just how many people in the US are bedbound and working. As part of my work in advancing spinal leak care, I recognize that we need career options and accessible psychosocial support in a holistic approach. #SpinalCSFLeak #BedboundTalent

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One problem with searching "normal brain MRI" is you find images like this on Radiopaedia, the peer-reviewed collaborative radiology resource.This image stood out to me immediately. While many radiologists may look primarily for diffuse pachymeningeal enhancement (DPE) on contrast-enhanced brain MRIs, DPE disappears quickly after the onset of a spinal leak for a large portion of the population. I am exposed constantly to brain MRIs by people with suspected and diagnosed spinal leaks.I posted this picture in our Facebook group: "umm, guys, doesn't this look like a leaker brain MRI to you?"Everyone agreed.What draws my eye immediately is the slight descent of the cerebellar tonsils, the fact that the brainstem is thus shifted over with that classic kinking, effacement of the prepontine cistern, and slightly reduced mamillopontine distance. The Bern scoring system reviews what all parts of the brain can be affected, assigns weighted scores, and these are calculated together into a total. We must consider what parts of the brain are most affected to better understand symptoms. For example, with a kinky brainstem, we can expect symptoms of autonomic dysfunction as the brainstem is a major control center for the autonomic nervous system (ANS). Clearly, human eyes in radiology are failing here. I fed the Bern scoring diagram into ChatGPT4O to calibrate the AI and then gave it this brain MRI to give me an estimate of how likely it was that this person had intracranial hypotension.This is what AI thought it saw. On a scale of 1 to 10, with 10 being the highest likelihood of intracranial hypotension:Likelihood: 6/10 (Moderate)Rationale:Positive Signs:🧠 Slight reduction in mamillopontine distance.🧠 Slight reduction in the pontomesencephalic angle.🧠 Downward displacement of the cerebellar tonsils.🧠 Potential effacement of the suprasellar cistern.Negative Signs:🧠 Only slight flattening of the ventral surface of the pons.🧠 Signs are present but not highly pronounced.Obviously, AI still has a long way to go for testing, and current quantitative scoring systems still need to be improved.Interestingly, AI can't pick up on my own brain MRI signs even though the physician who invented the system found signs for me using measurements. The AI needs to be able to measure and to adjust for human diversity. However, I see a future where AI streamlines workflows, quickly identifies cases possible for a spinal leak, and sends patients to the right interventional care team.#SpinalCSFLeak

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Today, I got one of those annoying messages promising to get me 300 leads per month. I said he could not as he had no idea what I offered. He parried, responding that he absolutely could and repeated to me what I offered via a ChatGPT report based on my LinkedIn profile. I decided to up the ante and gave him a challenge. Okay, if he was going to get all these leads for me, how would he address crucial aspects such as explaining to physicians that lumbar punctures are not the best way to assess for a spinal leak?Lumbar punctures have up to a 60% risk of causing a new leak and are an inappropriate method of assessment. Looking at the cranial result of a leak, Shin (2022) finally asserted what has long been hinted at in research: intracranial hypotension is a misnomer. Intracranial hypovolemia is the correct term and only sometimes involves intracranial hypotension. So why then are neurologists referring patients to radiology to have their opening pressure checked to rule in/out a spinal leak before running non-invasive tests and using better brain MRI reading techniques? Why am I getting messages from people asking what lower-risk alternatives they have who've already been signed up for surgery without ever having had a brain MRI and without ever having had a blood patch?Mr. 300-Leads-a-Month sent me the following message that MR myelography and CT myelography are more accurate and safer methods to assess for a spinal leak than a lumbar puncture to check for opening pressure alone. And he's almost right. The term MR myelography is sometimes used inconsistently with references to intrathecal injections of contrast (penetrating the lining of the spinal cord and going into the fluid trough with spinal fluid that surrounds and cushions the really important part and injecting substances into this fluid). However, MR myelography is actually a non-invasive approach used by many centers with the injection of contrast intravenously so as to avoid the risk of causing a new spinal leak. This creates an under-utilized alternative to the CT myelogram with lower risk. Although, I will add: we see many patients reacting to contrast dye due to impaired barriers from their spinal leaks. Personally, I could tolerate contrast dye just fine with a spontaneous leak alone, but lost the ability to do so after a lumbar puncture leak was added to the mix and started having seizures in the MRI machine. Not a fun time.So we need more alternatives here. Some anesthesiologists use a regular spine CT scan to look for suspicious spots as causes of a spontaneous leak such as thoracic osteophyte. It's the little calcified hangnails that get you. But quick question: why does Mr. 300-Leads-a-Month know this and yet my first neurologist told me I had the body of a spinal leaker (tall and lanky), encouraged me to drink caffeine, told me that I would need cranial surgery, put an intracranial HYPERtension diagnosis in my chart, and scheduled me for a lumbar puncture?

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In marketing, we conduct a competitor analysis to look at pricing. For any concierge care spinal leak center, you're going to have Pegasos in Switzerland as a competitor. You may wonder: what is Pegasos?Pegasos offers a voluntary assisted dying (VAD) program for 10,000 Swiss francs. This currently is worth USD 11,392.80 which is divided into two payments. The first half must be paid as a deposit when you sign up for the program which would be about $5,696.This is the service that I see spinal leak patients use the most. Hopelessness is what kills us. The simple truth is that for all the pain management anesthesiologists who claim publicly on LinkedIn that they can give blood patches, they admit to me privately that they have not given a blood patch since their residency. In fact, I have heard from radiology nurses that pain management patients are being shipped in to interventional radiology after pain management gave them a leak and did not know enough to diagnose PDPH and patch the patients. Radiology often slams blood in during patches, causing sudden pressure surges inside the head and accidental dural tears from shoving the needle forward. There is quite simply no access to blood patches with experienced anesthesiologists for many people. Our primary care team with neurology will often tell us that there is no hope for us. They will say that the sudden-onset neurological symptoms that began immediately after a lumbar puncture must be some syndrome unrelated to spinal leaks. They will tell us that we are destined to be bedbound forever. We know that we could try to go through interventional radiology, but many radiologists require that we get a lumbar puncture to check our pressure to see if the first lumbar puncture gave us a leak. This is not a research-backed, reliable, nor low-risk method of evaluation.And so, when facing this idea of hopelessness, people begin planning their suicides. It gives them peace to go ahead and make the initial payment of $5,696 to Pegasos as a deposit. It gives them peace to have some level of control over their care and to have a painless way to escape this endless pain.Anesthesiologists sometimes tell me that patches don't pay much with low reimbursem*nt rates but that they don't want to sound like they are driven by a desire for financial gain.To which I say, people are paying $5,696 simply for a deposit for assisted suicide planning because they don't have patch access for a basic lumbar puncture leak left untreated for months or years. Let's look at the money. Do you have confidence enough in your skills to patch that you could compete with Pegasos' value of a peaceful death and charge cash for your value offer of a blood patch to fix their leaks?$5,696 for a deposit on death.Do you have the confidence to charge for an investment in life?#SpinalCSFLeakhttps://lnkd.in/gYBnCdZz

With the backlash against DEI, disability inclusion as a corporate pledge is on the rise. As Meg O'Connell, PHR states, disability inclusion was never truly included in DEI efforts. In fact, I was told early on that I'd come to the wrong party; I belonged in DEIA as a white disabled person. The statistics don't lie. While we can look at race additionally, the reality is that homebound and bedbound disabled people have extremely low employment numbers. For us to work, we must have remote options. Commonly, I face disbelief when on the phone and working remotely. People overestimate my level of mobility because they seem to subconsciously associate this with my level of competency. "How are you doing all this?" They ask me when I go over what I have completed in the past few years.But yet, go into any new moms groups, POTS groups, and any other Facebook group with symptoms from a leak, and you will encounter at least thousands of women working from bed for years "ever since that sudden headache started," "ever since that spinal tap that messed me up," or "ever since that labor epidural."The cost to companies for employee absenteeism for salaried workers is $2,660 per person per year. This is just a starting point. Spinal leak patients might have been high-achievers, the VP of Sales about to close on a million-dollar contract for their company before an incorrectly suggested lumbar puncture disabled them and the anesthesiologist at the hospital gave a piddly 5 mL lumbar patch and was scared to do more. What often happens is the patients are no longer able to work and stack up enormous costs in being sent down so many rabbit trails, especially at the beginning, because they want to be seen as compliant, thinking this will help them better access the right care. This does not happen; their care team expresses confusion because "one patch is all it takes; you're now healed. If you're still symptomatic, it's due to POTS, and we just don't know enough about POTS to get you upright again. Sorry. Looks like homelessness is on the menu for you."Where the medical field is apathetic and continues to say there is no chronic spinal leak crisis at play, corporations are unhappy. All of their workers are being wiped out. I remember when my younger sister's entire office gave birth around the same time and were bouncing in and out of the hospital to get repeat blood patches or were just told they had the baby blues and had no access to blood patches. As I interestingly find more traction among corporations wanting to improve employee wellness programs and invest in raising awareness of and addressing the spinal leak crisis, I find a great deal of resistance from medical professionals. As more awareness grows of the sheer number of bedbound professionals, I would encourage any physician who wants to create a concierge care spinal leak center to consider a B2B angle too. Corporations want to invest in improved spinal leak care.

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That moment when you've been clear that you only complete business calls as voice calls and someone starts demanding that you turn your camera on.#SpinalCSFLeak #TheHorizontalLife #BedboundEntrepreneurs

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One thing that has always bothered me with pain management clinics is the lack of effort put into reviewing my spinal anatomy before attempting an epidural blood patch, especially considering my history of past punctures during patches and the fact that I have extensive spinal imaging.Last year, I contacted thousands of pain management anesthesiologists to get a feeling for their ability to handle a case where a lumbar patch had not worked on a mid-thoracic leak, a thoracolumbar patch (T12/L1) had provided immediate relief, and of where I had been regularly thrown around on tables while physicians fought for their lives to get a needle into me in the mid-thoracic area, causing punctures during this. It was difficult emotionally receiving 10 emails a day with answers ranging from responses such as telling me I probably had scar tissue blocking the way that made my case hopeless to telling me I was lying and that no sane anesthesiologist would attempt mid-thoracic interlaminar to telling me that I needed to get surgery as lumbar patches worked on everyone for a leak anywhere. My favorite was the anesthesiologist who said the problem was that I probably was moving too much, and he offered a telehealth to consult with me on how not to move during a patch. As someone who gets complimented on how still I can hold during patches by physicians--when I'm not being thrown around on the table--I did not feel I needed this service. I started thinking at that time: what if my body shape is playing a role here? I have extremely wide hips but the ribcage of a bird. In fact, I have to order custom bras because my under-bust measurement is the size of a child. In multiple discussions with anesthesiologists that I had, they refused to patch above L1/L2, referencing Shin (2022) which says that blood injected will travel 2:1 towards the head versus towards the tailbone--but the articles cited by Shin do not clarify the sections of the spine referred to. I had already had a radiologist patch me with 33 mL at L1/L2 and I could see that it all moved out instead of upwards. Some anesthesiologists said they would just repeat the T8/T9 interlaminar patches despite my describing how much difficulty past physicians had had here. They seemed to take this as a challenge. "Well, *I* can do it."In the telehealths that I booked where I paid cash, I had two offers for T12/L1. One pain management anesthesiologist backed out as he had not given a blood patch since his residency and was scared. Another offered a T12/L1 patch and had given 10 thoracic blood patches within about 20 years of private practice. However, her front desk constantly blocked my care, she did not publish visit notes for me to check her understanding/planning of my case, and I later learned she had never reviewed the imaging I sent to her in advance. I canceled the patch with her for which she was charging $500 cash. It pays to take steps to reduce risks.

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For some traumatized spinal leak patients that I have encountered online, my mentions of epidural blood patches are highly triggering and can evoke extreme emotional responses. They often ask me to stop mentioning epidural blood patches as a treatment modality for spinal leaks or block me as they can't bear to see "blood patches" mentioned. This is not to criticize them, but for us to ask why? For quite a few chronic spinal leak patients, an epidural blood patch is the worst thing that's ever happened to them.The below news article is from Belfast. This was a case where a neurologist took it upon himself to start diagnosing patients with spontaneous intracranial hypotension and then performing 261 blood patches. Now the British physician interviewed in this article is unaware of what's happening in chronic spinal leak care as he mentioned that it is normally only anesthesiologists performing this procedure. This is true for PDPH but people in the UK with untreated iatrogenic and chronic spontaneous leaks are actually all going to a neurosurgeon in Scotland who is performing the patches.Unfortunately, the results aren't great. I remember my Irish friend worsening with each visit to him and then witnessing a mobile British woman with a chronic leak be rendered bedbound after receiving a patch from him. She started wondering as we all were wondering: how many of us are getting punctured during patches?I would encourage any physician to read the patient impact as far as the Belfast neurologist covered in the news. Many of the patients were disabled by his blood patches. These patients report cases of contracting meningitis, and one physician comments that this might have been from non-sterile conditions during the blood patches. Keep in mind here that patients who have blood accidentally injected into their CSF are typically diagnosed with chemical meningitis, so the patients may not have been referring to an infectious meningitis.Some cases include wet taps at the beginning and of wrong needle placement with blood injected into the CSF. But from what I have seen, a much more common event is correct placement initially and an accidental tiny bump against the dura *during* the procedure while pushing to inject blood. Other times, dural rips can happen from rushing combined with making mistakes, but I don't see this commonly for American anesthesiologists. This is typically for patients getting patched in radiology for the US. For people with chronic spinal CSF leaks who had some mild head pain but were fully mobile, receiving a rough, rushed blood patch could have been the moment that changed their lives for the worse.Accidental punctures during blood patches for patients being patched by all specialties are the most common complication I see. What typically happens is the patient is blamed for being punctured and no more care is attempted. Rather than avoidance, improvements need to be made to reduce risk.

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