Health Rising’s Recovery/Recovering Stories series continues with yet another novel recovery/recovering story. Melissa’s story is the first spinal story in this series, and her recovery was unusual in its rapidity and its one-off nature. One simple, non-surgical procedure was all it took to return her ability to think, to walk, to have her energy back, and to live pain-free. While she’s not completely well, she appears to be on the road to the full health.
- Adam’s BCG Vaccination Chronic Fatigue Syndrome (ME/CFS) Recovery Story
- Can the Japanese Encephalitis Vaccine Reduce Symptoms of Long COVID?
- Lucie’s Surprisingly Simple Chronic Fatigue Syndrome (ME/CFS) Recovery Story
- Up from the Ashes: James’s Severe ME/CFS Recovery/Recovering Story – CIRS-based treatment approach
- A Rapamycin Resurgence: An MD Moves the Needle on his ME/CFS – Rapamycin
- Jason’s Eclectic Mix of Treatments Returns Him to Near Normal Health After 16 Years with ME/CFS
Her story was not unique, however, in how it unraveled. Except for Rachel’s lucky break with long COVID, persistence has been a key factor for everyone who’s recovered in this series. It took Melissa years of searching to finally find a doctor who would do the tests that ultimately led to her diagnosis – a cerebral spinal fluid leak. After that, it was all so easy…
She explains how it all happened below…
A Cerebrospinal Fluid Primer (from a still-recovering-cognitively non-medical professional)
Cerebrospinal fluid (CSF) surrounds the brain and spinal cord, providing protection, nourishment, and waste removal.
The CSF system is set up so that if cranial pressure gets too high, a leak can open to act as a relief valve. But when something goes wrong (for instance, illness, epidural, or whiplash injury), a problematic valve can be created and the dura becomes unable to seal naturally.
When the brain does not have sufficient fluid, the body compensates by making more—potentially creating a system cycling between high and low pressure. Intracranial hypertension and hypotension each have a variety of possible symptoms. In addition, connective tissue may become damaged by a leak, creating its own issues, including blood flow changes in the brain.
While cerebral spinal fluid leaks at the bottom of the spine in the lumbar region are associated with intracranial hypotension (low cerebral spinal fluid pressure), cerebral spinal fluid leaks at the base of the skull can be associated with intracranial hypertension (high cerebral spinal fluid pressure). Some studies have found high rates of intracranial hypertension in both chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM).
Over time, the brain can sag from lack of fluid holding it in the proper place, affecting nerves, and putting weight/pressure on places it should not be. With the brain suddenly not supported, temperature controlled, or able to send signals properly, multisystem chaos can result – affecting the autonomic system (heart rate, breathing, etc.) and ultimately others. The worsening conditions in each system make functioning more complicated in other systems. (I suspect this may be how we get the same symptom set regardless of a post-illness or mechanical initial onset.)
Cracking Under Pressure
Even as a child, I was always busy. Unable to sit idle, constantly thinking or doing or making, then crashing into bed at the end of a long day. No matter the pain or fatigue, I pushed through.
In my 20s, after several months of intermittent flu-like symptoms were followed by bone and muscle pain, I was diagnosed with rheumatic fever. Episodes of debilitating neck and back pain, fatigue, and brain fog continued over the years, all of which worsened with anything but gentle activity.
Still, I was active. I pushed through. I had no idea those symptoms were just pressure. I trusted the doctor’s advice of keeping moving, working harder, toughing it out. In 2019, just before turning 43, I jumped down from the bed of my truck after loading folding chairs for an event. A strange jarring sensation went through my spine, but it was nothing that felt serious.
By the next afternoon, I couldn’t remember what I did for a living. When asked, the information and even the ability to communicate my own confusion about it vanished as I stood staring at a new acquaintance. It was just a blip, minutes long, but that evening, my physical symptoms began to reappear.
As I write this, the connection to a spinal injury from the jump seems obvious. But what followed was a torturous succession of doctors and specialists, tests and misdiagnoses, prescriptions for medications that never had a chance to work. Tickborne illness. Narcolepsy. Postural Orthostatic Tachycardia Syndrome. The list went on. The last doctor I saw before finding my cure, said grimly, “this looks like (ME)CFS, we don’t want to see you back.” I asked about who might help me and was told there was no one. I was on my own.
I was only mildly aware of cranial pressure (IIH and CFS leaks), connective tissue disorders (EDS), and the entire world of radiology at that point, but I had been following the blog for a while. It was with a brutal preciseness that I understood what his statement meant.
It turned out I was not on my own, because the resources at Health Rising and the many patients sharing their stories online, screaming to be heard, led me to eventually discover the underlying cause of my illness. And now, after three and a half years barely functioning and a year bedbound, I’m determined to share as widely as possible in the hopes of helping others.
My symptom list may feel very familiar:
- Cognitive issues (word finding, memory, attention, complicated thinking)
- Exercise intolerance/post-exertional malaise (even minor exertions like brushing teeth, sitting up without support, chewing food)
- Orthostatic intolerance/worsening of symptoms when upright
- Severe weakness/heaviness and fatigue in limbs, worsened by even minor activity
- Near constant dull pain in mid back over rib area
- Headaches when reading or with any physical activity, worse when lying on left side, whooshing heartbeat in ear when lying on right side
- Light and noise intolerance, worsening following exertion
- Severe pain in bones of face after overdoing physical activity
- Scent sensitivity, especially smoke or chemicals
- Blurry vision, less able to see at night, eyes are irritated and appear dull, vision changes
- Occasional face pallor
- Nausea in the morning and when standing, constipation/gut issues
- Low appetite in the morning food sensitivities, gag reflex
- Ringing ears with worsening periods during each day
- Minor swelling in the abdomen, blood pooling in abdomen and limbs
- Must rest several times per day with eye mask and sound blocking headphones. No tolerance for tv, music, audio—visual or conversation quickly difficult to be around
- No tolerance for car rides or movement
- Couldn’t walk at most severe or move around much, couldn’t do physical activity even lying flat
- Disturbed sleep (initially sleeping excessively, later couldn’t stay asleep)
- Severe heat intolerance (heart rate spikes even for attempted baths, crash afterward)
- Stinging pinprick bite-like pains randomly in legs, feet, and arms, and weird electrical jolts through body that cause physical jolt
- Handwriting/fine motor control issues
- Random spots and skin peeling on palms of hands and feet, random minor swelling
- Hiccup-like spasms when upright (rarer, as is cough)
- Inability to summon enough energy to communicate when very ill, sometimes slurred words
- Face tingling, especially when lying down
- Left side neck pain since 2005, worsening in 2019, and shoulder pain and left side muscle spasms since 2005, both (wrongly) attributed to a car accident or disc issues by previous doctors
- Numbness down outside of the left arm and pinky fingers, tingling in hand and elbow, left side pain and weakness dating years prior to 2019 illness onset
- Hearing issues (trouble processing what was said)
- Symptoms improve without movement for long periods
- Intermittent positional watery/runny nose and occasional irritated throat
- Burning pain top of head when sneezing; tender, bruised-feeling scalp
- Droopy eyes, saggy and stretchy skin in places
- Temperature issues (chills, low fevers)
- Mood changes (mine was more obsessive and focused on illness research, but many have anxiety, depression, anger, impending doom, etc.).
Many of these symptoms were misleading when searching for a diagnosis, due to outdated information on the effects of cranial pressure. More on that below, but know that everyone’s individual symptoms can vary despite the same underlying issues. When I first became ill, the list was only a few symptoms long. Others have additional symptoms including seizures, spasms, gait issues, and more, leading to potential misdiagnoses of epilepsy, dementia, and many neurological or nerve disorders.
CSF pressure issues can be aggravated by flow problems such as stenosis, bone spurs, cysts, or many things mechanical, and made worse by connective tissue disorders (like the EDS I was unaware was in my family) or medication (like the doxycycline I was given for a tickborne illness I never had). While the majority of spinal leak cases are brought about by epidurals gone bad (and made severe when not treated in a timely manner), leaks can have many causes.
Much of the difficulty getting treatment is due to the medical community being informed by outdated material that implies an immediate headache with epidural is the chief or only cause and diagnosable symptom, and that it will heal on its own with time. Some patients do not even have headaches as a symptom. (I would note it wise to verify providers are using the safest needle type and gauge for lumbar puncture.)
Within the CSF leak patient groups, you’ll find many functioning and severe patients whose symptom profile matches those of ME/CFS exactly. Physicians unfamiliar with the true scope of leak symptoms are at a loss, risking unnecessary or harmful medications and surgeries. Brain sag has been misdiagnosed as Chiari in some cases, many MRIs return normal (as was mine), opening pressures on lumbar punctures may appear normal (as was mine), and neurologists and neurosurgeons may not take the suggestion of a leak seriously because they’re considered rare (they are not—only under reported). It is essential to find a specialist experienced in leaks and armed with the most current information.
- Please check the Spinal CSF Leak Foundation Physician Directory for doctors who have been verified to be using best practices for leak diagnosis and repair.
Pressure may be the cause of your illness, not just a symptom.
- Do you feel worse—either immediately or within days –after strenuous activity such as lifting, high-stress events, after sneezing/coughing, or bending or twisting? You may have a leak or high pressure.
- Have you had an unusual (good or bad) reaction to doxycycline, prednisone, or any medicine that affects cranial pressure? Does caffeine, salt/processed foods, or B1 affect the severity of your symptoms? (Google the medicine or food with cranial pressure to find connections.)
- Do you feel worse in the evenings or have vision or head or neck pain changes as the day progresses? Do you feel worse at different elevations or with barometric pressure swings?
- Do you find your mood shifts with your symptoms after these activities? Are your cognitive or neurological symptoms brought on by bending, lifting, twisting, jumping, straining, or Valsalva maneuver? Is some part of your pain positional?
- Do you have unusual scarring, stretchy skin, or have joint hypermobility in your family? You may have a connective tissue disorder, making leaks and pressure issues more likely.
- Do you ever feel anxious or restless when lying down? This may be high pressure urging you to get upright (to ease pressure in the skull). Do you ever find relief by lying flat? This may be low pressure returning needed fluid to your brain.
- Don’t let the incorrect notion that leaks are rare dissuade you from finding treatment. If you fit the profile and your physician dismisses the possibility, find a new one.
My cure was delivered by an interventional radiologist. Her team went over my illness progression, ordered a brain MRI and head CT, both of which were normal (here is where other doctors would have stopped), then moved forward with a CT myelogram which can diagnose abnormalities in the spinal cord.
The CT myelogram revealed several large leaks in the lumbar area, and I received 5 targeted fibrin and glue blood patches in a quick, non-surgical procedure. I had been severely ill and bedbound with extreme cognitive issues for a year.
While I was still on the procedure table, my ability to do math returned. As soon as the post-procedure restriction was up (within hours), I was walking under my own power. My pain disappeared, my energy returned, and I felt hope for the first time since I don’t know when.
Today, months later, I walked my dogs, cooked my own meals, washed my own laundry, and wrote this post. It feels unbelievable, and yet it should not—if I had broken a leg, medical care would have been available immediately. I will still need to overcome what my time bedbound wrought, the cognitive issues as my brain finds its place again, and the trauma of being so ill for so long, but I am not alone.
If you believe you have an orthostatic component to your illness, if you have any relief staying still and flat (or find you are unable to stay still and flat), please research the links below. I had no idea the restlessness of my youth was a symptom of IH, or that it would make me more susceptible to leaks.
So many of our shared symptoms can be explained by the process of CSF leaks: the post-exertional symptoms due to upright activity draining fluid from the brain, the rebound symptoms or worsening baseline due to leaks becoming worse with movement, the reading or eye movement issues due to cranial pressure and nerve involvement, and so much more. Whatever your cause, know that you are not alone. Those of us who have been through will be here, holding out a hand and screaming to be heard.
*There is a 48-hour flat test in the resource folder below from Dr. Ian Carroll. This test is helpful for discerning whether there is an orthostatic component to your symptoms, but please note longtime leakers may no longer have the expected orthostatic response—my own took about 2 weeks of flat time for symptoms to improve and they did so only slightly.
Do you feel better when you lay down and stay down? That’s a good place to start.
*A note on testing: advances in CFS leak testing and diagnosis are moving fast. While traditionally recommended imaging like upright MRIs may be useful for CCI or other conditions, they may not be clear enough to be helpful in diagnosing pressure conditions. Spinal leaks often do not show any signs in a brain MRI. Not only does the imaging required differ, but it is critical the images are read by an experienced leak specialist with a proven track record. Fortunately, several of the physicians listed in the directory below are willing to review imaging or consult with your local care provider.
Do you have an existing brain MRI? Check for SEEPS here.
- US Facebook Group—CSF LEAKS (Cerebrospinal Fluid Leak & IH)
- International Facebook group—CSF Leaks International: Cerebrospinal Leaks, SIH, Chiari, etc.
- Resource folder from Dr. Ian Carroll (Stanford)
- Directory of Imaging and CSF Leak Specialists—where to go for help
- Melissa’s new website on intracranial pressure and diseases like ME/CFS and FM.
Health Rising Cerebral Spinal Fluid Leak Blogs
Check out Melissa’s next blog which identifies why some people with ME/CFS may be more prone to getting cerebral spinal fluid leaks.
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