#cerebral spinal fluid leak

[thesebright-lights]

Different from what I usually post, but this needs attention.

Lili Johansen (who was a model for Resident Evil Village), is suffering from a Cerebral Spinal Fluid Leak and Adheasive Arachnoiditis due to a Lumbar puncture performed by irresponsible doctors. I highly encourage reading about these conditions- it is truly worse than anything I had ever even heard of.

She has an opportunity to get a potentially life-saving surgery, but needs to raise 46k USD (~42k EUR) in order to get it. Please please PLEASE donate if you can, and spread her story around as much as possible. You can find her @/ninjacatgirl on Insatgram and @/ninjacatgir1 on Twitter. Donate to her GoFundMe here.

[electronsoup]

Laying down flat and doing nothing for days is so hard. Figured out I have another CSF leak (cerebral spinal fluid), had been feeling EXTRA gnarly since New Years. I’ve done almost two days of bed rest, need to do a couple more. I was both sad and happy to see they have updated in “reasons you may get a CSF leak” to include just having EDS 💖 https://www.instagram.com/p/CnIi1RfP7D3/?igshid=NGJjMDIxMWI=

[definitely-not-a-wasp]

Long Term Nuclear Waste Warning Messages update except it’s just out of context lines from my outlining document

Note: Please add proper escalation

This is, of course, Roland Ter Borch, who you need to foreshadow better

Max HATES this

Ari, newly released from prison, is having a bad time

Figure out a smart thing for the flock to do that isn’t repetitive

Max is down an arm and a leg but she has a crowbar and she ain’t done partying yet

Note: is a week long enough to recover from a [REDACTED] to the leg?

Note: figure out a cool name for this project

They retreat because reasonable people are afraid of the vaguely unkillable arsonist covered in the scars of people who failed to kill them

Fang starts leaking cerebral spinal fluid out of their nose because it’s my story and I choose the medical inaccuracies

[cogbreath]

my nose is so so runny when active tht sometimes i wonder if i have a cerebral spinal fluid leak

[rebelwheelsnycpoetry]

The Doctors

by Michele Sommerstein

There I was, 2018 Cerebral spinal fluid leaking, brain cyst number two's fantastical debut, so sudden (so cerebral!) massive pains and good times ensuing as I hear them saying, they said, repeating “there's nothing wrong with you, physically that is” Spoken with such bold conviction (condescension) after only, two, tests so quick to declare that it's all in my head (oh, the irony) “we'd like you to see a psychiatrist” (and here we go again.)

One said, I think you're just doing it for attention as if I had nothing better to do with my life? I do as if he was that fucking charming? he was not (why is actual help so rarely an option? why did he go into this profession?)

And it's true, at the time, I was barely sleeping and thus a mess my spine could no longer rest on my flat bed mattress, muscles spasm-ing (relentless) keeping me awake at night, but I didn't know that yet. Wondering what is wrong with me?!

And they were of no help. None. These doctors Despite the awards on their walls, voted top doctors by top doctor magazine and to his peers? he was greatly revered. golden. infallible. so they dared not contemplate a second theory nor opinion (dared not think independently and thus remained fairly useless at best) and this was the reason I became depressed a reaction, valid to these changes & this ableism that was up to my chest & rising

years later and I am no longer plagued weighed down, burdened with the doubt, the shame, though the memories remain of the ignorance and medical ableism like a stain that does not fade, this default mistrust of doctors but I find strength in knowing I am not the only one (as well as sadness in knowing for I am not the only one) how many patients are gaslit and dismissed when it's the failure of the doctors, to do the right tests

[techninja]

Patient-Centric Care: The Role of Intrathecal Pumps in Neurological Disorders

Introduction

The intrathecal pumps market is experiencing substantial growth, driven by advancements in medical technology and an increasing awareness of its benefits in pain management and the treatment of various neurological and chronic conditions. Intrathecal pumps, also known as spinal drug delivery systems, are implantable devices that deliver medications directly into the intrathecal space surrounding the spinal cord. This targeted drug delivery method provides effective pain relief and management of various medical conditions, making it an attractive alternative to conventional oral or systemic drug administration.

Factors Driving Market Growth

1. Effective Pain Management:

Intrathecal pumps offer a highly effective approach to managing pain, especially in patients with chronic pain conditions like cancer-related pain, failed back surgery syndrome, and complex regional pain syndrome. The precise drug delivery directly to the spinal cord ensures that patients receive the required medication dose without the side effects associated with high-dose systemic administration.

2. Expanding Indications:

Over the years, the number of medical conditions treated using intrathecal pumps has expanded. These devices are now commonly used to manage spasticity in patients with conditions such as multiple sclerosis and cerebral palsy. The growing list of indications is a significant driver of the intrathecal pumps market's expansion.

3. Technological Advancements:

The medical device industry continues to innovate, leading to the development of more advanced intrathecal pumps. These newer devices are smaller, more durable, and offer enhanced programming options, improving patient outcomes and reducing the need for frequent refills.

4. Increasing Awareness:

Healthcare professionals and patients are becoming more aware of the benefits of intrathecal pumps in pain management and other treatments. As a result, the demand for these devices is rising. Patients are seeking alternative solutions to manage their conditions, and intrathecal pumps are increasingly becoming a preferred choice.

Challenges and Regulatory Hurdles

While the intrathecal pumps market is experiencing growth, it also faces certain challenges. Regulatory approvals, patient selection, and the potential for complications are issues that must be addressed:

1. Regulatory Approval:

The development and commercialization of intrathecal pumps require rigorous regulatory approvals, as they are implantable medical devices. Companies must navigate complex regulatory pathways, which can be time-consuming and costly.

2. Patient Selection:

Selecting the right candidates for intrathecal pump therapy is crucial. Not all patients are suitable for this treatment, and careful patient evaluation is essential to ensure the best outcomes. Furthermore, physicians must be adequately trained to manage these devices.

3. Complications:

While intrathecal pumps offer numerous benefits, they are not without risks. Complications such as infection, pump malfunction, or cerebrospinal fluid leaks can occur. Patients and healthcare providers need to be aware of these potential issues and how to manage them effectively.

Conclusion

The intrathecal pumps market is on the rise, with a growing demand for innovative, effective solutions in pain management and the treatment of various medical conditions. As technological advancements continue to improve the safety and efficacy of these devices, more patients are expected to benefit from intrathecal pump therapy. To ensure the sustained growth of this market, addressing regulatory challenges, promoting patient education, and maintaining high standards of medical practice are essential. As the market expands, healthcare professionals and medical device manufacturers must work together to ensure that intrathecal pumps continue to provide relief and improved quality of life for patients.

[oughlay-sabhece]

Man i love googling something totally innocuous like nose running and getting results for things like cerebral spinal fluid leak but not as much as i love actually matching most of the symptoms for it.

[neurosurg101]

Intelligence Quotient (IQ) in myelomeningocele

A family of a 20 day old patient with a repaired Myelomeningocele visited my clinic and they asked me about the expected prognosis for the intelligence for the child.

(1) A simple answer is that :

- patients with myelomeningiocele, with or without complications, have lower IQ than those without the lesion.

- Hydrocephalous decreases the IQ further in patients with MMC. Early correction of MMC can return the IQ to the MMC without hydrocephalous baseline.

- Shunt complications and revisions and CNS infections decrease the IQ even further.

- Higher lesion in spinal cord associated with lower IQ.

(2) An interesting article in the JNS discussed the neurobehavioral outcome in patients with myelomeningocele:

- MMC affects multiple anatomic levels which will affect neurobehavioral outcome:

. Spinal cord: deleterious effects of amniotic fluid on the neural placode. sensory and motor deficit. greater impact with higher lesions in spinal cord. deficits include weakness, sensory loss, incontinence, musculoskeletal anomalies. thoracic lesion associated with more severe brain anomalies and worse neurobehavioral outcome. motor impairment limits environmental exploration and learning experience.

. Chiari II malformation: in 96% in MMC at T12 and higher, 90% in MMC below T12. pathophysiology: leak of CSF through spinal defect > prevents normal distension of embryonic ventricular system and limits growth of posterior fossa > cerebellum develops in a smaller posterior fossa > downward displacement of the cerebellar tonsils, vermis and brainstem > cerebral abnormalities include corpus callosum hypoplasia, tectal beaking, polymicrogyria, cortical heterotopia > worse neurobehavioral outcome.

. Cerebellum: reduced cerebellar volume in MMC, more reduction in higher lesions. reorganization as anterior portion is larger and posterior-inferior portion is smaller. has a rule in cognition particularly executive functions. deficit in timing and precision of truncal, upper-limb, and eye movement and cognition.

. Brainstem and midbrain: due overcrowding of small posterior fossa and chiari. 65% of MMC have distorted midbrain, e.g, tectal beaking, which is colliculi fusion into a single beak. 70% have elongated and kinked medulla at the spinomedullary junction. deficit in eye movement and attention.

. corpus callosum: abnormality in 70%-90% of CM-II. hypoplasia or hypogenesis (partial formation). abnormalities primarily in posterior part (splenium), anterior part tend to be intact. variable abnormalities, include congenital and acquired (from complications like HCP). deficit severity correlates with abnormality of CC. deficit in cognition.

. Hydrocephalous: secondary to CM-II. pathophysiology: aqueductal occlusion, obstruction of 4th ventricle, eradication of subarachnoid space by overcrowded posterior fossa. HCP in 85%-90% of individuals with MMC without fetal surgery. expansion is posterior-to-anterior direction and cause stretching of parietal and occipital lobe axons around lateral ventricles. MMC with HCP +/- shunt exhibit worse neurobehavioral outcome compared to MMC without HCP. shunt revisions and infections add to cerebral damage.

. cerebrum: less common. gray matter heterotopia in 19% of MMC. seizure in 15%-25% of MMC, related to heterotopia and polymicrogyria. worse neurobehavioral outcome.

- Neurobehavioral profile of MMC

. cognitive deficit in MMC is significantly impacted by environment.

. assembled processing (integration of information) is affected by pathophysiology of MMC. associative processing less affected by MMC pathophysiology and more vulnerable to environmental factors.

. MMC patients have difficulties with

1- intelligence

2- attention

3- executive function

4- language

5- memory

6- visuospatial function

7- motor function

8- academic functions

9- psychosocial and adaptive concerns

References:

(1) Intelligence Quotient in Patients with Myelomeningocele: A Review: 10.7759/cureus.3137

(2) Neurobehavioral outcomes in patients with myelomeningocele: https://doi.org/10.3171/2019.7.FOCUS19445

[bottleddaydream]

I may have lifted something too heavy trying to help move furniture and sprung another cerebral spinal fluid leak and I am absolutely terrified. No experience in my life is worse, or more scary. I haven’t seen anything on this cite about csf leaks and I know its rare so no one likely knows what I’m on about but needed to share,,

[endurraesa]

so last night I was up most of the night being sick and fighting the worst migraine ever and today’s apartment search uh didn’t go well so I’m not feeling so good but I’m gonna do what I can on here both to get my mind off things and to cheer myself up some

[goldkirk]

I’VE GOT A DIAGNOSIS and also a bad headache after the tests but I know for sure now! I also have to get two MRIs and an MRV and start doing like four or five different treatments but I’m pumped!!!!

[dogcasino]

health update

so as some of you might know, a bit over a week ago at this point i had surgery to potentially fix the on-going health issues i've been having. the surgery had about a 50/50 chance of working, since while my symptoms were very similar to what you would see with a CSF leak, we couldn't actually find a leak on any imaging.

HOWEVER! it appears to have worked. several aspects of my health have improved drastically, meaning that i actually WAS leaking cerebral spinal fluid for over TWO YEARS!!! this is, kinda huge for me. the surgery hit me incredibly hard with some ~complications~ leading to my first ever ambulance ride but i'm already feeling so much better in a bunch of ways! warning for gross but the leak caused the pressure in my head to lower, which meant my brain was literally sagging in my skull.... for over two years. Which made it very, very hard! to function! i actually have a train of thought now and there's color in my face instead of me looking Dead all the time.

its kind of amazing. its very amazing, and i'm very excited to see what comes next in my journey. probably lots and lots of physical therapy because i am very weak and muscularly/nerve-wise fucked up from being in this state for so long! but i'm looking forward to it! i can't wait to see what i'm capable of after having this massive nerf to my Everything.

tldr; patchnotes are that cosmo has been buffed to no longer be leaking their own cerebral spinal fluid. this means nothing but good things for them.

[slowlymadeart]

https://www.healthrising.org/blog/2019/05/21/jennifer-brea-chronic-fatigue-mecfs-recovering-story/

"There’s no doubt this is not the easy way out for ME/CFS. If I could choose a way to recover – which I obviously can’t – neurosurgery would be one of the last options on my list. I think I would rather swallow a toxic chemotherapy drug than have a neurosurgeon fuse my head to the top of my spinal column. That procedure sounds about as spine-tinglingly scary as anything I can imagine. (Brain surgery would probably be worse.) The fact that only four neurosurgeons in the world can be trusted to do this procedure doesn’t help.

Among the first thoughts I had upon learning of Jen’s recovery was that if this is what it takes – a rare diagnosis and neurosurgery – if that’s what it really takes to recover, I don’t know that that’s ever going to happen.

After some reflection, I don’t think it’s as bad as that. Jeff and Jen and two other people have found a way and a remarkable 20 people on Phoenix RIsing have gotten a diagnosis. While getting a diagnosis isn’t a piece of cake, it can and is being done."

"Jeff and Jen’s stories do bring a new focus to the spine and brainstem.  Hip, on the Phoenix Rising Forums, pointed to five structural conditions which can cause brain stem or spinal cord compression – and ME/CFS-like symptoms:

cervical spinal stenosis — spinal canal becomes too narrow, which can put pressure on the nerves

syringomyelia — fluid-filled cyst in the spinal cord which compresses the spinal nerves

Chiari malformation — where brain tissue is pushed into the spinal canal due to a skull which is too small

tethered cord — where spinal cord is “stuck” to a structure within the spine such as scar tissue

craniocervical instability — instability of head & neck bones compressing the brain stem or upper spinal cord.

Other spinal conditions that could cause or contribute to ME/CFS/FM/POTS include cerebral spinal fluid leaks and intracranial hypertension.

Even if you don’t have CCI/AAI, the search for it may help uncover other problems. One person on the Phoenix Rising forums reported that she didn’t have CCI but that the search for it turned up “severe stenosis, edema, compression fractures, and other issues causing my spinal cord to be affected” and that treatments for those conditions were helping."

"For me, the recovery stories provide hope and are a sign not to give up, to stay curious, to keep reading and asking questions. Medicine, as Jen Brea noted in her recent blog, is ever-evolving. What was cloudy yesterday may become clear today. It wasn’t that long ago that CCI/AAI surgery wasn’t even considered for Ehlers Danlos Syndrome – it was the province solely of whiplash and trauma patients.

We should also remember how vitally important sharing our stories – both our ME/CFS stories and our recovery stories is. Jeff’s publication of his story may have saved Jen’s life. It’s now enabled 20 people to be diagnosed with CCI/AAI and three are undergoing surgeries.  Please share your improvement or recovery story.

Our goal has to be to assist the medical system in its evolution, to keep the hope alive, to keep sharing, to have the courage to keep knocking on closed doors, and eventually getting the light to shine through."

Read the full article if you've got the spoons

[adventureswithmultiplesclerosis]

So I’m kind of freaking out.

I’ve had some head aches on and off since having baby. To be expected with less sleep and loud crying I thought.

I’ve also had a couple of nosebleeds, which is not common for me but hey it is winter and dry air might cause it.

The one that was getting to me was this post nasal drip but it only showed up in the right nostril and only when I dipped my head down. It’s happened before but has been happening ALOT lately. Getting my hair up in a towel after a shower, bending down to pick up baby, working out, etc. And it’s not like mucous, it’s like water. So I googled, thinking it might be symptoms of a sinus infection.

Apparently it’s symptoms of a CSF leak (cerebral spinal fluid). WTF.

I have a phone appointment with my doc in an hour and I just hope it’s not something serious or detrimental to do with my MS. I just want more information ASAP. I have not googled anymore because since being diagnosed I have learned that rabbit hole helps no one.

Crazy.

[theparadoxmachine]

Update - finally

As a lot of you know I had brain/spinal surgery back in March. In April I had recovered enough to go back to work. Then in late April I developed a cerebral spinal fluid leak. Basically the mesh they put in my skull to give my brain room started leaking and now I've got this swollen space in the back of my head about size of a golf ball.

I had a constant migraine and I couldn't keep anything down. I went to the emergency room twice. The first time they told me I had a bladder infection and the second time they admitted me and I was in the hospital a couple days. I had another MRI and another lumbar puncture to measure the pressure of the spinal fluid. Now I don't know much about it but according to the radiologist who did my LP the pressure of the spinal fluid should be 15-20 units max. Mine was at 47 units, so over twice what it should have been. He drained some fluid which helped the headaches quite a bit. My neurosurgeon visited me in the hospital and gave me two options. He could either operate and try to repair the leak or I could wait and see if my body would heal on its own. I decided against surgery, which my surgeon was pleased with because he was concerned that operating might just make the situation worse, plus there were already a bunch of covid patients at the hospital and I'm vulnerable. But this means it will likely take me 3-4 additional months to recover.

After they released me I spent about a week at my mom's house. I had an appointment with my neurologist and he cleared me to go back to work half days for a week. I'm back at full time now. I'm still having headaches and neck pain. Occasionally I get super nauseated. My dog is still at my mom's house. I can't exercise or lift much. I'm also temporarily immunocompromised/vulnerable to infections because of the surgery.

I've been ordered to avoid stress. When the headaches get bad they are very, very bad. I am constantly trying avoid anything that might trigger my nausea. Taking my pills is always difficult and I have to weigh the pros and cons whenever I take them because they have a tendency to make me sick. I am aware of the gravity of everything going on in the world and I care but I have to be careful because there is a legitimate possibility that I will end up back in the emergency room if I'm not very careful. The best I can do for anyone right now is to survive long enough to make it to the polls.

That said I am recovering. Slowly but surely I am getting better. Today I've managed so far without pain medicine. Yesterday work was brutal so it's amazing I'm not in more pain but it also means I probably will need something later. But the fact that I haven't needed anything so far is a good sign.

I am getting there. It's just going a little slower than I'd hoped.

[blackheartedangelsandbrokenwings]

Every time I think of my appointment next week, my anxiety makes me feel like I’m going to pass out.