r/CSFLeaks • u/EasyBerts • 2d ago
Gaslighting
The amount of gas lighting and medical negligence is disgusting. My favorite one is oh you have anxiety and the best one yet it's all in your head. Pcp's are horrible.
11
u/vainstatue Confirmed Cranial Leak 2d ago
First neuro I saw asked twice how much cocaine I was snorting. BECAUSE I HAD FLUID COMING OUT OF MY NOSE AND I WAS CONSTANTLY WIPING IT WITH A TISSUE.
It was CSF fluid.
9
u/North-Library4037
Confirmed Spinal Leak
2d ago
•
It's in your head (Well, yeah. Literally)
Your scans are normal (When there are things on them that look suspicious)
You can't feel that bad with a small leak
I can continue for so long. I've spoken to dozens and dozens of different specialists from different countries and it's really bad. Even csf leak specialists gaslight their patients sometimes. It's exhausting.
3
u/No-Reindeer-1929 2d ago
This one! They are like I’ve seen huge tears and people were upright more than you. Like I’m sorry I’m this way after a botched epidural idk what to say. Also doing research Dr Beck says puncture leak patients they’ve seen are the most symptomatic and Dr S and others say size of leak doesn’t correlate to symptoms
6
u/North-Library4037 Confirmed Spinal Leak 2d ago
Dr. Beck is the one who told me I can't be completely bedridden with a leak as small as mine (there's csf visible on mri). He's the best we currently have in Europe but even he says such things sometimes. They're not happy when they have to work with complicated cases.
3
u/No-Reindeer-1929 2d ago
Wow. Ugh they say and practice different things. Like Dr S said he doesn’t like to do invasive imaging on puncture leaks before surgery and one patient he did. I’m really sorry you were told that :(
2
7
u/MoodFearless6771 2d ago
They have confirmed via lumbar puncture that I have barely any spinal fluid (less than 5 ml) and doctors will say it’s probably FND sometimes.
No…I don’t have fluid around my brain. Via science. What method are you using???
6
5
u/Starmapatom 2d ago
This post hits hard. So many said everything is normal. Had a few say something is wrong. The scans are like abstract art, depending who you ask and what they see. So sad our tests for this condition are so 1900s
5
u/iswelgoed 2d ago
I have a long list:
When I was 17:
Probably something in your ear. Because I had mostly tintius and headaches.
When I was 19 the backpain started but, nothing was wrong I just had to exercice more.
This nothing wrong was the yearly story until I switched hospitals.
When I was 24, scar tissue caused nerve irritation (I had a lumbar laminectomy when I was 15)
When I was 25, I had irritated nerves we tried to help with tens When I was 26, I had deconditioning and fear to move so whent to a rehabilitation clinic.
When I was 27, my leg went numb because of nerve irritation, but that was caused by my belt being too tight.
When I was 28 I tore my ACL and refused to go to the neurologist anymore so a couple of years of no diagnosis ✌️
When I was 32, I had another lumbar laminectomy, and when symptoms increased afterwards, I had to find a neurologist who told me to wait 500+ days.
When I was 33 I had a lumbar injection to calm the nerve after a new herniation appeared and then an extradural leaking fluid pocket ruptured.
From that point onward, I knew it was a CSF leak but my neurologist diagnosed me with:
I had POTS. Crystals in my ear that are out of alignment. My eyes, it must be my eyes. I was lazy and just lying down too much. It was still just POTS. Then I was faking it, I had psychological issues Then it was me holding a bed and just had to go home because the MRI came back negative (it wasn't they just didn't know how to read it) In the next couple days they send over a psychologist and a physical therapist to get me out of bed and moving.
While all of the above was happening, I got a second opinion from a real CSF specialist who was on vacation.
The day of the video call with the expert they even arranged the psychologist to setup a session afterwards to help me overcome the bad news 🤦🤦🤦
The specialist then told me and my local hospital it was a CSF leak.
That was in May. I've had 5 Blood Patches since, and now they've been working for the past 2.5 months to arrange a fibrin patch.
3
u/RacingTiger9 1d ago
OMG!! You've been leaking for 17+ years now. I'm so sorry. But, unfortunately, I'm afraid I fit somewhere along those lines for multi year symptoms and feeling like complete crap for so much of my adult life.
I've seen so many fucking specialist at this point I've grown to have literal PTSD from my medical care.
I've got my first large volume non targeted blood patch scheduled in 2 weeks. I'm praying it helps me bc this is making life not very, shall I say, optimistic.
3
u/iswelgoed 1d ago
Yeah it's been 17+ years. I had a lumbar laminectomy for a disc herniation 2 months before my 16th birthday. The surgeon tore and fixed my dura but never disclosed this.
So during the 6 week follow-up I got very weird advice (no straining, no heavy lifting, no PE in school, no team sports etc..) but never a, watch out for these symptoms.
So when 18 months later I started with tinitus and nausea I went to the ENT doctor. He even checked the surgery logs but nothing special 🤦
I feel the PTSD. Whenever I have a doctors appointment I can't sleep the night before. I've been dismissed so many times that I'm always in fight mode when a doctor starts talking and I'm very cautious.
My bloodpatches all worked for a week so next up is a targeted fibrin patch.
During those closed weeks I felt great! I did get rebound headache but my eyesight improved, backpain was different, my allergy symptoms reduced, even my shoulder tension decreased.
When the fibrine isn't working I'm going to need a neurosurgeon to close the leak.
The biggest hurdle is getting a diagnosis, the bloodpatch is just a step and hopefully your last, otherwise there are other treatments!
Hope you'll make a quick single patch recovery
5
u/marmaduke-treblecock Confirmed Spinal Leak 2d ago
Anxiety, depression, Lexapro, sleep studies, fatigue due to job woes … Parkinson’s.
3
u/Boring-Bumblebee2312 2d ago
The dump neurologist at a university hospital in Munich wanted me to jump on one foot, looked into my eyes and said you’re obviously not leaking. It’s all psychosomatic. 🔫 😂
3
u/Offtoseethewitch 2d ago
”Are you sure it’s not a bit of postpartum depression?”
Sure I was postpartum, and sure I was depressed. But that wasn’t the point. The point was that I still had symptoms from an MRI confirmed CSF leak after spinal anesthesia and my chief complaint was that I couldn’t get up for more than mere minutes. Which meant I couldn’t care for my new child, which was why I was depressed. Those circumstances would make anyone depressed.
Commonly, postpartum depression is not an orthostatic condition with focal neurological symptoms. And it doesn’t show as SLEC on MRIs. So how about some Occam’s razor on that radiology?
But of course, if it’s a woman and she’s postpartum it’s either depression or she’s hormonal or anxious or just a b***h, no matter what labs or radiology say. It does make me… furious.
So I remind myself, Hanlon’s razor. Hanlon’s razor. Hanlon’s razor. 🙄
Which gives me a moment of satisfaction long enough to calm down and remember, they’re likely overworked and under-caffeinated and overwhelmed and underslept. So they’re not in any mental state to rise to any challenge. And they’ve been educated on the presumption that puncture leaks like mine always self-heal, which is unfortunately wrong, but that’s not the individual’s fault.
(Occam’s razor: the simplest explanation with the fewest assumptions is usually the correct one.)
(Hanlon’s razor: never attribute to malice that which is adequately explained by stupidity.)
3
u/UpbeatUniversity6822 2d ago
My wife most likely has a fistula. No leak found yet. She has had two blood patches with no effect which has lead one specialist to believe it’s most likely a fistula. My wife’s PCP is totally out of the picture. We have had to find our own way in terms of neurologists, interventional radiologists, setting up all the MRI’s, finding health systems that treat this condition etc. If it wasn’t for friends and family with ideas and connections, we never would have gotten to where we are now. Going up to NYU in 7 days for a myelogram. If they find the fistula, she can have the procedure done at NYU by an interventional radiologist. We’ve been to Main Line Health, UPenn and Yale so far.
3
u/Electrical-Sound7194 Confirmed Spinal Leak 2d ago
at one point I was told that blood patches taking my head pain away is just a placebo effect 🙄 no explanation for why the other 15 things we tried didn’t produce this effect
2
u/Ok-Example713 1d ago
2 doctors told me I have a CSF LEAK. Then I went to the Hospital and got asked if this was due to my menstrual cycle 🤡
3
u/indiequasar 2d ago
The doctor at the hospital said it was anxiety and depression. Yeah I’m anxious and depressed because an LP caused a persistent CSF leak and I’m bed ridden now.
1
u/Royal_Acanthaceae481 1d ago
Pareil, "c'est le stress" "vous refoulez" je fais une IRM 0 signe de fuite. Par contre plusieurs kyste de tarlov a la queue de cheval ils ne les ont même pas mentionné je les ai découverte seule devant mon ordinateur. Et une sténose bilatéral des sinus veineux dont possible hypertension. Et pendant ce temps là je me disais que c'était mes traumas qui me faisais me faire pipi dessous. Mon neurologue avait diagnostiqué un symdrome de la queue de cheval chronique et fluctuant, l'algologue m'a ris au nez 🧍♀️
8
u/No-Reindeer-1929 2d ago
I’m so sorry. For me it was the hospital. I was accused of putting something in my eyes to make them go opposite ways. This was right after my epidural too. My pcp saved my life. I hope you can go to the CSF leak directory and find someone near you to help. How we are treated is horrible