As a retired healthcare worker, I'm not surprised so many other doctors missed this. The US does NOT have the best medical care. The US has doctors who are either too busy or too narcissistic to care to look past their own nose. For those with similar symptoms who tell their doctor they saw this, they will get the "google doesn't trump my education" speech.

@AFoodReview

Жыл бұрын

Yes. I'm suffering because of This.

@zs2001

Жыл бұрын

You say US does not have the best healthcare, and yet, most of the treatment centers specialized in treating CSF leaks are in the US. Take a look at some of the other countries and you'll see how US is still miles ahead of them. There's close to zero hope for people with similar ailments in so many other countries, and all they can do is keep suffering or, if they're rich, seek out treatment in the US.

@leonardorey7216

Жыл бұрын

My sister is suffering from this condition and doctors she's gone to see including neurologist seems to me like they really don't care, I'm tempted to take her to Mexico I know she'll get treated there

@mv8908

9 ай бұрын

@@leonardorey7216did You go to Mexico?

It must be nice just finding a dr who will look for a reason behind symptoms.

@mattscott6591

2 жыл бұрын

I totally agree with this 100%. My PCP just prescribes meds to treat the symptoms rather than looking into it. I was diagnosed with High blood pressure like 7 years ago and all my doc said was “you’re too young to have high blood pressure” turns out i had a brain tumor that i just discovered this past january. Also had blood clots back in august. It’s frustrating.

@stardusty

Жыл бұрын

I had headaches and fatigue and my doctor prescribed me ANTIDEPRESSANTS. US healthcare in a nutshell.

I’ve been going through this for two years. It took a year and a half to get a doctor to take me serious about a leak. I had horrific headaches, felt like I was floating when walking, tinnitus, sensitivity to sound and specifically bass frequencies, nerve like pain behind the ears, an extremely uncomfortable feeling at the base of the neck, symptoms far worse while standing and better while laying down, a period during each day where I’ll feel far worse for a few hours where my feet get cold, blood pressure raises by 15 points, and my body feels heavy, body feeling heavy anyway, extreme sleep disturbance, mood changes, depression, irritability, bouts of pain in my hips to the point that it’s difficult to go up stairs that for some reasons resolves after a few weeks, tired feeling eyes, and inability to concentrate. The first thing they did was put in a stent which did nothing, they then said both jugular arteries were block and did a styloidectomy which did nothing, I’ve had piles of imaging and the only thing found was an area in the back where the dura looks slightly narrower and there are signs of fat deposits (I think). All my symptoms compounded by hypothyroidism and diabetes. I’ve had two blood patches but no miracle feeling better the next day. I’ve gone from fully incapacitated to being able to walk places and get around a bit over two years, a world of difference from where I started but a long way to go. Currently they want to do the Mylegram where they inject nuclear material but I have low hopes at this point. I’ve seen teams of geniuses and I’m still in some form of sever discomfort and misery each day. This is hell compounded by many good doctors that simply do not have enough experience treating this and it’s extremely tough to find the leaks sometimes. All of us can’t give up but it’s so hard because it works on you every second if every say. Anyone out there going through this I send my love and sincere hope we all find relief. ❤️

I was diagnosed with a spinal fluid leak in September 2015 at the Mayo Clinic. The horrible headaches started earlier that same year in May. My headaches completely resolved when lying down and started pounding quickly in an upright position. I had two MRI's before my visit to the Mayo Clinic and both were normal. After researching online, I felt pretty confident I had a spontaneous spinal fluid leak. I had no idea why this happened. I discussed this with my neurologist but he dismissed me and said I must be suffering from migraines. At the time of my visit at the Mayo Clinic, my headaches were so bad, I literally felt like my brain was sinking into my spinal cord. After my third MRI there at Mayo,, they discovered I had a subacute subdural hematoma (bleeding in the brain) caused by the CFS leak which was confirmed from the CT myelogram. A blood patch resolved the leak and it saved my life due to the bleeding. I'm for ever grateful for the empathy and care I received at the Mayo Clinic in Rochester. I've been blessed to feel vibrant, headache free since then. One more thing... the term "headache" for CFS leaks is so underwhelming. It's like no other headaches I've ever experience in my life. It's so bad, it feels like an out of body experience.

@nathanporter4697

3 жыл бұрын

Kathy, I have a positional headache that gets worse as the day goes on. I am being seen at Mayo in Phoenix and they couldn’t find anything, so they just say it is migraines. How do you get a doctor to listen?

@puny5417

Жыл бұрын

Hello Kathy!! First off. You are able to type a message and breathe so one positive. But I’m your twin basically. Mine started in 2020. It’s been a battle. And I am in misery too I am reaching out to Cedar Sinai and Dr CARROL too. I’m in Texas and I have no ONE that specializes in this I was diagnose first with CSF AND THEN that changed it to IIH Because my neurosurgeon can’t find a leak on the MRI. I AM A MOTHER a teacher and a wife and a Christian and I know the Lord will send some relief to us soon. Please reach out to me if you need someone to talk to. I am having depression thoughts a lot but fighting the urges.

@puny5417

Жыл бұрын

Hello. I’m having the same symptoms. Do you have a Facebook or insta to communicate? I’m glad you found help. My migraines take me out and I can’t walk or talk. I can only lay down to find relief

@derkarhu5079

Жыл бұрын

Try the csf leak foundation ...they might be able to point you to a specialist doctor or clinic, somewhere as close as possible...this stuff is a real bear to deal with, and a 'standard' neurologist will often be 5+ years out of date! Even my 'local' neurological specialist hospital was really out of date, and had less than zero interest in hearing my input about more recent research and studies....strangely-enough, it seems that the orthostatic headache, itself, is one of the most valid indicators for a leak, more accurate by a factor of 3, than baseline MRI and some others. BTW, i rejected a proposal for a lumbar puncture and opening pressure procedure at my 'local' clinic, told them that it was statistically a very poor indicator, and they basically kicked me out of the clinic, leaving me with all the symptoms that i came in with!

How do you cope with the unbearable head pain when the earliest appointment they can see you is two months out?

No ER doc could diagnose me for over 10 years when I had all those symptoms, they sent me home from hospital with ibuprofen and OTC codeine I could not sit ups for 5 weeks🤦🏻‍♀️ . I begged them to do a scan on my abdomen where they found a football sized spinal fluid filled cyst that no Neurologist knows what to do with. HELP

My son has this, and is suffering greatly and neurologists are dismissing him with migraine, it is a very distressing time for him and us all and we need to find him some help.

Thankyou so much for this video, i have spoken to two doctors and they simply refuse to give me an MRI referral because they dont think ive had any spinal damage to have a spinal leak, but i am constantly feeling dizzy, like im on a boat, like vestibular migraines which are brought on ten fold in humidity, all the doctors give me are betahistimines to stop the dizziness but they dont assist me with the root cause! Your video may have done it.

I absolutely need Dr. Carrolls help. I live in Tennessee and have everything she has and have for 5 years. Ive failed the meds, the shots, the gcrps, the therapies, the migraine decompression surgery,..all of it. Headache worse standing or sitting, neurological deficits, hypermobility, POTS, even MCAS.

Your story is my story. POTS, hypermobile, migraines, nausea, me/cfs....have the Tarlic cyst on sacral roots, had spinal fusion etc. stuck in bed but am in Adelaide in South Australia and Drs would laugh at me if I said I think I have a csf leak but to me it’s so obvious. Great work Dr! Kp spreading your word!

@cib3098

3 жыл бұрын

There is an Australian help group for CSF leaks that can help you to find someone that might help you, here the link facebook.com/groups/1694939884169162. Try prof Marcus Stoodley in Australia he and his team I believe treat CSF Leaks and have trained in the USA.

@bp9414

3 жыл бұрын

@@cib3098 thank you✌🏻

@towlettepetatucci6067

3 жыл бұрын

Same here! The POTS and EDS (so hypermobile) stuff and the intractable headache. Even on aimovig. Just finished a steroid pack and the fucking thing is still there. I am wondering this the more I learn, and the more I see correlation to things I am dxed with. The worse end of day, better lying down, neck pain. I wonder about a leak from my facial surgery, I get the clear liquid out my nose and down my throat. No evidence of allergy whatsoever. I want to ask my dr about this but Im scared of a lumbar puncture and scared of being wrong

Please add cluster headache to this list. That is what I had 8 years ago and I received a blood patch for an unrelated issue and it worked. I am thankful that you are talking about this. The only other doctor I have heard speak about blood patches is a doctor from Cedar Sinai hospital in Los Angeles, Wouter I Schievink MD

I was made to believe I was going crazy! I've suffered with migraines for as long as I can remember and chronic ear infections that never heal. Along with the pain Id feel fluid moving inside my middle ears. When shared with my doctor, he'd dismiss my complaints with a chuckle and gave meds for an infection. I've never been taken seriously by doctors or family. To their defense, I honestly sound like I'm crazy, so I learned stay quiet and keep it to myself. The past year has only gotten worse. The fluid has moved beyond my ears and spread throughout my body. From the back top of my scalp, draining from my ears, ozzing down my neck, making it hard to breathe. The sensation of the fluid moving through my spine area is not painful, its just terrifing. I hear crackling sounds when I move my upper body parts, especially in my neck and head. Most days it overwhelmes me. It usually starts with feelings of stiffness and tightness and then i get the urge to stretch.... ALL day, throughout the day in awkward positions. Once I start, I am not able to quit. If I dare stop the stretching, I become light headed, dizzy, nauseous and my head and ears fill with a warm fluid and I the horrible headaches and stomachaches begin. I listen to my intuition as to where and how I need to relieve the pressure. I have to constantly move my body in most awkward positions then hold for long intense stretches to make the swelling sensations subside. The relief is temporarily, but it does decrease the stiffness and swelling. I can't find any information to confirm or valadate my experience. Noone I know has ever heard of fluid traveling throughout the body, so they laugh and think I'm imagining it and tell me it's all in my head. What makes my claims sound even crazy is admitting that at times I feel as if I had slimy worms moving around inside my back and in my blood stream, making my veins boldge, burn and sting. and I also have the feeling of itching and tightness inside my arm bones, as if spiders or ants were crawling and digging their way out of my bones, mainly at night. Another weird sympthome is when I touch a part of my body I feel the fluid move around in a different part of my body. Id massage my neck and feel fluid moving down my back. and when I do kegals I feel the fluid move on the top of my skull. It's really Scarry, especially when nobody believe me. it's easer to dismiss me and lable me crazy than to listen and understand my concerns. I fear the worse as my condition is spreading and affecting my energy levels, my concentration, my moods, my mindset, my anxiety and my relationships. I have become isolated and withdrawn and simply stopped going to the doctor's. I can not longer cope with being dismissed, ignored and not being believed. It's overtaking my body and is now after my sanity. I just don't know if I can remain optimistic. The not knowing is the most hardest part!

@CiniMini69

5 жыл бұрын

Hi! How are you feeling now? A year has passed. Hope you got better. Cheers!

@pardeepsharma6574

4 жыл бұрын

Try to consult 3-4 docs .. maybe u can find a good one...when u r suffering from a rare disorder....on docs part, it is very easy to say that we are going nuts...but it's just beyond their knowledge and they just don't know the real stuff we are going through...but chances of getting a good physician is rely high if u consult multiple docs...it's my personal experience

@billdidit7790

3 жыл бұрын

Sounds like my wife’s syntoms , if you figure it out make sure you let us know.

@04ingoditrust04

3 ай бұрын

Don’t give up!!!❤🙏🏻

Amazing

I had literally ALL OF THESE SYMPTOMS and my doctor prescribed me antidepressants. I went to a new doctor recommended by a friend and was eventually diagnosed with EDS.

I want this doctor!!!!😢

i have this symptoms too.

I have the same .. I’m about to come get tested by dr carrol but I hope the Mri for full spine with contrast is gonna catch it up because I have back problems like a herniated disc so I’m scared to do the ct mylogram

@donaldviszneki8251

4 жыл бұрын

How has your story turned out? I am not a doctor but I don't believe that your herniated disc precludes a CT myelogram.

I believe I am missed Dx, I have chiari, eds, hydrocephalus, I am in a bad way. Would love to talk to this dr.

I wonder if ringing eventually goes away.

Where are you currently located?

Did the ringing (tinnitus) go away? I have a suspected leak but the ringing is so severe I can't function. If it doesn't go away, I have no future. It has been 15 months of severe debilitating ringing and other sounds.

If I'm hearing repetitive jazz in the background, should I be checked for a spinal fluid leak?

OMG - my twin has these symptoms- how can folk from UK get her from dr Carroll

I wish I had known

I feel this has changed my personality 😢

@abishek7286

2 жыл бұрын

Yeah.. Do exercise

I too have been diagnosed with Pots, and then a second opinion said no to pots, but orthostatic intolerance. I’m desperate for answers. Is this Dr at Duke?

Does the special ct scan with dye also show all the ear parts and sinus that could leak?

Help

What about most of the symptoms but NO Nausea At All? Not even a bit. I had POTS for a week and went away. I have terrible neck issues

@towlettepetatucci6067

3 жыл бұрын

Not a dr. But from the talks Ive watched by ppl who are, my understanding is that you dont need to have all symptoms. I dont have bad nausea either. I hope now that its been a year youve found some relief!

Does prednisone help or mask the headache? Because I start all the symptoms of a leak but because I have SLE Lupus they start prednisone. Symptoms lessen but never goes away. A week with out medicine and headache plus all other symptoms ramp right back up to 10+

@cib3098

3 жыл бұрын

Prednisone increase intracranial pressure, therefore you felt better but is just temporary

The music in the background…. Why

Is there any other treatment beside the blood patch because I have issues with my back 😔

@donaldviszneki8251

4 жыл бұрын

I am not a doctor, but as Dr. Carroll said, there are conservative treatment options that work for some, and that for many of those people recurrences are possible. However if conservative treatment does not work, I believe the blood patch treatment is probably not precluded by having a bad back.

@notanotherfuckingnikki

4 жыл бұрын

The conservative technique is to lay flat in bed for 2 weeks without moving, no straining (no nose blowing, must take stool softeners so you don't strain using the restroom etc.) It's extremely difficult but that's the only conservative approach. Blood patches (up to 3 of them) are the next step and surgery is the 3rd. Check out the CSF leak association & Spinal CSF leak Foundation for lots of info and help.

I'm suffering I can't do what to do. I want to t

Did she ever have ESI therapy in her medical history?

So I’ve had pain in my neck for almost 4 years now. I’ve had it right after my thyroid surgery. I’ve had this issue non stop and I’m sick and tired of it. I believe it’s getting worst. My headaches are everyday... I need help. Who do I contact? What’s the name of the dr who will listen to me?

@lovelee_1990

3 жыл бұрын

I'll be going to see a neurologist tomorrow

@bhupendrasingharora6183

2 жыл бұрын

@@lovelee_1990 are you alright now

I need to be your patient

Hello can you please please HELP ME...I CAN'T GET A DR TO LISTEN.I HAVE THE SAME CYST & SYMPTOMS..MY LIFE IS JUST😷💔....HELP!!!

Could i have this? I'm bed bound and desperately trying to find out what's wrong. I have ehlers danlos syndrome (eds) and i have had severe back and head pain for years. I'm constantly having to turn over due to back pain. Also my neck got locked in one position and has been stiff ever since. Often i find that my back wants to lay one way and my neck wants me to lay the other. I also have had severe sickness and have had to be taking anti sickness ever since i got d&v. Ive hit my head several times and have had concussion. I have audit and visual hallucinations and eye sight issues. Dizziness. I have had stuff run down my throat causingvit to feel blocked for years. Sudden behavioral issues/ changes. I now can't even sit up or keep my neck up straight. Now i can't sit up without lower back pain and sickness. Agitation. Numbness in hands and legs. Can't feel pain. Sensitive to light. Memory issues. Panic attacks. Can't feel emotions, yet with a flick of a switch, I'm angry or crying. I have no idea why after. Aggression. Anorexia. Depression. Autism. Virtigo. Brain saps. Not responding to pain meds and i can't have morphine as that doesn't work and makes me sick. Nothing works. Normal mri and blood tests testing for antibodies. Frequent infections. Resistant to most antibiotics now. Also i have constant ringing in my ears. Also I've had a really bad ear infection, where i lost my taste buds and sense of smell. I've lost my taste buds now and sense of smell. My neurologist has diagnosed me with FND but i disagree! I'm aware that not all my symptoms are relivent, but i thought I'd add everything

@krisd5745

4 жыл бұрын

I have replica symptoms and a chiari malformation type 1 was discovered after complete deterioration after a fall on spine. I also do not respond to drugs and have been boxed in FND category by a condescending neurologist. I'm now due to see ENT to check nasal drip for CSF. Currently living a day to day nightmare. The aggression I can relate especially after pressure reaches a critical point. Are you in the UK by chance?

@krisd5745

4 жыл бұрын

The Symptoms could very well be relevant. I'm not aneroxic but after fall I lost 3 stone rapidly and struggle with appetite and swallowing. I lost muscle tone also. These are effects of brainstem dysfunction. It stands that pressure in the brain can knock of many systems. The vagus nerve for instance. I would ask to see ENT

@horselover7216

4 жыл бұрын

@@krisd5745 yeah I'm in the uk. it sucks :(

@cib3098

3 жыл бұрын

Here a Facebook CSF leak help from for people in the UK: facebook.com/groups/529862713757429

@horselover7216

3 жыл бұрын

@@cib3098 thanks

Interesting, i have a history of chronic fatigue syndrome and chronic sinusitis. Recently on ct scan siund half empty sella syndrome and researching this ive found the spinal leaks which sound familiar.

You could have gone without the weird background music. Lol.

Can I see this guy? I’ll drive anywhere.

@keturasumner1210

2 жыл бұрын

First, complete Dr. Carroll’s 48 hour flat test, he requires all of his patients to do them and then ask for a referral from your primary care doctor. He is a wonderful doctor and person!

Too much weight being put on the headache like no other, not to be dismissive BTW. But after few decades wringer, pills, concussions, pounding pavement, all or some other symptoms are more dominant. Also a mix of leaks all over the spine and scull with venous fistulas mixed in requires critical thinking in imaging and treatment choices. Then again, were all crazy with wrong treatments.

nice video sir mujhe bhi headahe ki problem ho gyi thi ... mera study mai man nhi lgta tha but fir Maine planet Ayurveda se BRAMHI CAPSULE lene start kiye isse meri health mai thoda farak hua and ab mai thik hu

Why is this black and white? Good video

@jessicaf6358

3 жыл бұрын

Perhaps to make it stand out from others. It worked for me!

The red command finallly increase because apartment coincidentally frighten up a good kale. friendly, ready pull