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Dropping Connie

Earlier this month, the spinal CSF leak group misplaced a vivid mild when Connie Rim handed away. Her Fb web page, known as My CSF Leak Story, was the place she detailed her lengthy combat attempting to get sealed and healed. A number of days after she handed, her husband posted phrases from Connie about her demise, sharing it with the world.

Connie sustained her leak 5 years in the past throughout spinal surgical procedure, and tirelessly rallied her physique and thoughts in her makes an attempt to get care and discover her manner again to a spot of much less ache. Like me, she discovered solace in sharing this journey publicly. In her case, through movies that she posted to Fb and TikTok, detailing her many debilitating signs, explaining the procedures and exams she bought, and patiently answering questions.

When somebody is chronically unwell and takes a break from remedies, there may be inevitably a swell of individuals asking why. “Why aren’t you doing extra?”, as if it’s as much as you to not be higher. As if there’s full management of the lengthy tightrope you might want to stroll on while you’re coping with a number of complicated situations. Regardless of her openness and uncooked, unflinching movies, folks nonetheless requested Connie this query.

Maybe in response to this, or for different causes (I don’t know), in Could 2023 Connie posted a protracted record of procedures and exams and docs she’s seen proper earlier than she headed out to Mayo for extra leak diagnostics and procedures: “This can’t be my life. This isn’t a life. I’ve been preventing to get higher and advocating for myself as a lot as doable however in fact, I’m drained now. Nothing is as simple because it as soon as was,” she wrote then.

By this level, she had been to leak specialists and nonetheless her leak(s) weren’t sealed. She was in fixed ache. She reposted that record, up to date, a number of days earlier than her demise.

She did get remedy after that Could 2023 put up, one which introduced her ache down slightly bit. We might all really feel her pleasure and hope when it did. However that remedy failed, and when it failed it introduced a brand new, horrible set of signs. Since late January 2024, she skilled extreme stabbing ache from three to over twenty occasions each day, at what she categorized as a stage 10 ache. To be in ache all day, after which layer upon {that a} new and chronic, paralyzing ache… I can’t think about.

By mid-Could, she was gone.

Studying between the traces of the message her husband posted, she hit a wall the place the excruciating ache she skilled second to second couldn’t be managed.

Some days, I’ve been given 10-Quarter-hour of my valuable baseline ache, and for that. I’m grateful. However through the remaining 23 hours and 45 minutes, I used to be all the time crying, preventing, and, at occasions, in a lot ache that I might do something however curl in a fetal place in darkness,” she wrote.

Her household and husband have been loving and sort, she had plenty of help, and he or she had a group who rallied round her. I perceive that these wonderful issues will not be sufficient when you’re trapped in a physique that tortures you.

Research present that in a persistent state, ache can disrupt the communications between mind cells, resulting in a discount within the skill to course of feelings — particularly adverse feelings. Ache modifications your mind. I skilled a model of this myself not lengthy after my leak started: already in persistent ache for years  however not but conscious of mast cell ailments, I ate a very excessive histamine meal of spaghetti and shared a glass of wine with my household. It was this meal throughout these preliminary leak days, earlier than I went to Duke for remedy, that tipped my physique its new, unruly state. After that meal, I had full-body burning and nerve ache 24/7. And it didn’t go away. It felt like I used to be being dipped in acid, with no respite from the torture.

It was a fellow affected person who urged me to consider MCAS, given my signs. I hadn’t heard of mast cell activation syndrome earlier than. With no docs to help me, I scrambled to get my mast cells beneath management and attempt to make it cease. Throughout these weeks of absolute hell, till I discovered over-the-counter drugs that labored for me, I begged a detailed buddy to assist me discover a manner out endlessly. (They declined, have been compassionate all through, and as an alternative tried to search out me a grief therapist regionally. What helped on this case wasn’t remedy, it was discovering respite from the fire-burn throughout my physique because of antihistamines and a low-histamine weight loss plan.)

And that was how I felt with just a few weeks of torture.

Connie lived with that ache that for a few years. As she mentioned in her writing, “The ache determines my feelings, NOT the opposite manner round (as some folks consider).”

Her passing hit the leak world very laborious. Even those that didn’t know Connie personally typically watched her movies on TikTok or Fb, or interacted along with her on the teams. In my case, I used to be digital buddies along with her for years and we exchanged audio messages about methods, advised jokes, tried to maintain ourselves sane on this Groundhog Day world we lived in when staying sealed felt like a pipe dream.

And but, regardless of the ache and the exhaustion and the procedures, Connie remained joyful the place she might, she appreciated what love she had in her life, particularly her deep and delightful love for her husband, and noticed humour the place she was in a position. She had tons of help. The ache decided her feelings, as she mentioned. She was a prisoner of her fixed agony.

I really feel offended for her and her household, and for all of us. In taking a look at that lengthy procedures record, it appears like she was failed so many occasions alongside the best way. Whilst not too long ago as this yr, she introduced to the ER and later shared a video explaining that the on name physician mentioned her signs have been psychosomatic. How will you take a look at that blisteringly lengthy record of remedies and assume it’s psychosomatic?! The continuing nerve injury and tissue injury, and scar tissue that may entrap her nerves, all of it is smart trying on the lengthy record of what her physique had been by way of.

However no, she was advised it was all in her head.

That’s a part of what leaves me rattled, for anybody with this situation or different invisible situations the place metrics for prognosis and remedy should not minimize and dry. I’m engaged on the slides with the US and different spinal CSF leak foundations for the annual consciousness week for this situation, known as leakweek (which begins June third). In it, we share the various kinds of diagnostics and be aware that regular imaging doesn’t rule out a spinal CSF leak. Regular opening stress doesn’t rule out a spinal CSF leak. Regular something doesn’t rule it out; we’re trapped on this countless loop of being unable to ‘show’ quantitatively what we now have apart from signs, but typically we’re advised we aren’t dependable narrators when sharing our signs.

And so we attempt, we attempt so laborious.

We current ourselves firmly however with out panic, however not TOO jokingly else we appear ‘not sick sufficient.’ We preserve spreadsheets, we share information, we come armed with supporting research however not TOO many, else it looks as if we expect we all know an excessive amount of. Exterior the few leak consultants on the market, who’re fortunately coaching docs typically, this dance continues. It’s exhausting to dwell in ache and to lose your mobility and a lot extra, however add the suspicion and disbelief to the combination and it drags your soul all the way down to the bottom.

As a result of regardless of the advocacy, regardless of the schooling, the myths persist.

Exterior the leak consultants, sufferers report that docs nonetheless assume a lumbar puncture leak is “self-limiting” (i.e., that it goes away by itself — I want!). Many nonetheless doubt the existence of spontaneous intracranial hypotension (SIH), the place a leak can happen immediately; this may be resulting from a bone spur or calcified disc gnawing into the dura til it tears, or a coughing match, or lifting heavy weights, or one thing else being the final straw for a weak spot within the dura mater the affected person wasn’t conscious of. And a extra recently-discovered kind of leak, a CSF-venous fistula, might be elusive on current imaging varieties, although a more moderen photon counting CT machine is recognizing them extra incessantly. Canada doesn’t have one, and the US solely has a number of.

The brutality of this situation is tough to precisely put into phrases. Not solely the ache itself however the uncertainty and uphill battle in getting care. It’s generally misdiagnosed and under-diagnosed. The psychological well being burden can be vital: a top quality of life examine in spinal CSF leak sufferers from 2023 discovered that over half of the respondents (64.2%) endorsed suicidality, and 22.4% had demonstrated suicidal behaviour. A 2024 examine about high quality of life in persistent put up puncture sufferers (like me) discovered substantial psychological well being challenges with melancholy, nervousness and stress skilled by 83%, 98%, and 88% of the respondents, respectively.

It’s like an enormous cosmic joke, “hey, there’s a situation that always doesn’t present on imaging, the place specialised imaging additionally entails making a brand new gap within the dura mater to search for the unique leak, the place the overwhelming majority of medical college students don’t study specifics of SIH or long-term puncture leaks in in present med college curricula, and the place we will’t but work out why persistent sufferers have a very laborious time getting sealed and typically find yourself with new leaks after remedy.”


August 2024 marks 7 years of leaking for me.

In these very tough intervening years, I’ve discovered plenty of issues about myself, and about my physique. In regards to the illusions of security I used to have. About how life simply isn’t truthful.

The half that hits hardest has all the time been that stability appears like an phantasm. It’s so tenuous. Moments the place I get respite from the ache are so few and much between, however with frequent anaphylaxis and extreme MCAS within the combine, it appears like the sting of that knife is so skinny. I typically joke that I’m in mattress now, however we’ll all be in mattress ultimately as we age. I simply bought there first. Beneath the humour is the data that Connie’s story is unfortunately not the exception. That there are different sufferers barely hanging on as they look forward to science to evolve and be capable to carry them lasting reduction.

Each day, my inbox is filled with sufferers who can’t get remedy for his or her spinal CSF leaks. Medical doctors who giggle at them for asking for atraumatic needles for a lumbar puncture, regardless of research displaying it makes a big distinction in decreasing the chance of a post-puncture spinal CSF leak. Households who say that their youngsters or siblings or spouses are faking it, that they’re “simply lazy”, that they only “don’t wish to be higher”.

Present me a chronically unwell individual, in fixed ache, who doesn’t wish to get higher?! In the event that they’re on the market, they’re a rarity. Each affected person I do know, and I do know many resulting from my public platforms, is like Connie: advocating fiercely, organizing effectively, holding hope as greatest they will, and desperately eager to get nicely.

I haven’t gone again for remedy as a result of repairs don’t maintain for me. I’ve complicating elements like MCAS and adhesive arachnoiditis that make outcomes extra dangerous and fewer healing than the common affected person. However that that doesn’t imply I’ve given up. I’ve mentioned it earlier than: acceptance doesn’t imply you’ve given up. Like Connie, I’ve a lot to be pleased about. However even acceptance, even discovering pleasure once more, isn’t sufficient to eclipse unrelenting ache. Fortunately, I’m not within the form of ache Connie was in, and by sharing all of this I’m not attempting to make her demise about me. It’s extra that her passing feels prefer it might have been any of us on this tight knit group. I respect her selection, and I’m additionally heartbroken that she was backed right into a nook by her ache and felt like she needed to make it.

This put up isn’t my traditional, I do know. I’m offended. I’m devastated. And it’s lit a fireplace beneath me to proceed my advocacy work as a lot as my physique permits. Folks typically ask why I’m so concerned with the Spinal CSF Leak Basis within the US, because it’s unpaid and I’ve my very own enterprise to run. (I’m now the Vice-President of the Board). Advocacy is why. Connie is why. Connie, and different sufferers like her. Different sufferers like me. For these of us who’re persistent, the place repairs don’t maintain, who’re additionally ready and hoping. For the sufferers who can’t get to care as a result of they don’t have docs who know leaks of their areas. For many who want sources to assist their households to know.

In supporting the Basis, and dealing with sister nonprofit organizations in Canada and the UK, I can hopefully result in extra change than I can do as one author with a leak.

I’ve been which means to share all of those ideas since I discovered of Connie’s passing earlier this month, but it surely truthfully messed me up an excessive amount of to place phrases to paper. Right now marks the start of duradash®, although, and I’m fundraising for spinal CSF leak analysis. So I assumed it was a great day to share, and to try to mud myself off and preserve persisting. What else can I do however try to transmute my rage and my grief about Connie’s demise and the unfairness of all of it into one thing that may transfer the needle on all of this mess?

In August 2017, I knew nothing about spinal CSF, nothing about leaks apart from those in water pipes, and nothing about needle varieties or gauge. I had by no means heard of the dura mater. Years later, there’s lots I want I knew then, however all I can do is preserve writing and sharing, elevating funds for the trigger, and hopefully assist another person get care ahead of I might.

I’ll all the time be grateful to Connie for her fierce willpower and need to teach others it doesn’t matter what she was going by way of.

Since I sustained my leak 7 years in the past, there was plenty of progress and analysis and advances within the subject.

Dropping Connie exhibits us how we now have a lot farther to go. 💔

Jodi ettenbergJodi ettenberg

For those who’d prefer to help me in elevating funds for spinal CSF leak analysis, please see my duradash® marketing campaign web page right here. I set a objective of $1000 however have already eclipsed it because of my Instagram group; I will likely be upping the objective to $2000 later this week. The two-week fundraiser will finish June eighth, 2024.