#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=

[frozenoj]

There are a lot of reasons people can say Biden would be better than a second Trump presidency, but their Covid record is NOT one of them. "They didn't think masks were worth the inconvenience"?? The call is coming from inside the house! BIDEN made it so it is unsafe for me to seek healthcare. Today. Now. Because of Biden's administration I haven't even brought up that my doctor SIL thinks I have a cerebral spinal fluid leak because I'd rather live with it than risk surgery/a hospital stay. Biden getting rid of masks has killed and disabled more people than Trump's vaccine crap. Especially since the vaccine has never stopped transmission and should have never been seen as the front line defense.

Vote for him if you want to. But don't dare act like he is anything but a eugenicist who dgaf about disabled people.

People are talking about not voting for Biden.

Again.

I'm just so tired of this argument.

I just can't do Trump again.

I can't.

His incompetence killed so many people. A panel estimated 40% of COVID deaths could have been averted.

One of those deaths was my mother.

She was killed because people didn't trust the vaccines and they didn't think masks were worth the inconvenience. That man could have gone on TV and said "This is the Trump vaccine and it is great." He could have sold fucking MAGA masks on his website. He had 100% influence over his dipshit followers and could have used that for the greater good. But he was too vain to wear a mask in public and bungled the vaccine rollout.

And now I worry some of my trans loved ones may not make it through another far right administration. They have this giant target on their back right now and conservatives seem determined to eradicate as many trans lives as possible.

I wrote a whole ass post about how I didn't care for Biden. I still don't. But when I try to imagine what a right wing administration would be doing right now... that seems like it would be a nightmare orders of magnitude worse than the current nightmare.

As someone with an untreatable chronic illness, I know the feeling of being presented with choices where all of them suck. And I have had to survive by choosing the least sucky option over and over.

It feels bad every single time.

I hate it.

And I still fucking choose.

It should be different. There should be better choices. I shouldn't have to choose the least bad thing among all bad things.

But there are people and things in this world I feel are worth sticking around for, so I continue to choose the least sucky thing.

[alachii]

screaming crying throwing up cerebral spinal fluid leaking out my nose frothing at the asshole

[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.

[arctic-hands]

When I see you, the cerebral spinal fluid being controlled by my brain implant isn't the only fluid leaking from my okay I cannot finish this sentence

I was gonna send you a horny cyborg ask but chickened out

oh come on, do it.

The anon check is right there if you're feeling extra shy

[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!!!!

[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

[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.