Cerebral Spinal Fluid Disorders: Frequently Asked Questions

[@alexajessop5590]

I had 3 lumbar punctures when I was four moths old now I know where the headaches have come from. I have had them all of my life. My mother was never told of these side effects. They were so CRUEL back then. Thank you for your explanation. I am 66 and forever grateful.

[@nicholasbryant1753]

Dr Luciano installed a shunt in my head last November. I never recovered vision in my right eye but I'm still alive.

[@alicelong9092]

I suppose the eye had too much pressure on the optic nerve too long. I wish they could fix it. I got my shunt in time to save my eyes. My son says it saved my hearing, too.

[@nicholasbryant1753]

@@alicelong9092 it caused optic nerve atrophy. For a year I had complained about the basic symptoms and doctors ignored me. I went to John's Hopkins and they saw it instantly. I wish I'd have just gone there first.

[@iadorenewyork1]

You should sue.

[@nicholasbryant1753]

@@iadorenewyork1 I have optic nerve damage from my pseudo tumor. It was another hospital that missed it and let it get as bad as it did.

[@JessieMassoudi]

I just got diagnosed with IIH and my doctor never even mentioned weight loss. He just went straight to telling me I need a shunt. I’m so glad I saw this video, I’m going to ask him for other options because I heard that shunts can be really difficult

[@jah1807]

They say most persons with it are women of child bearing age who are obese. There are studies that both promote and deny that. I was diagnosed at 55 and weighed less than other times in my life. Dropped a few pounds to get to normal BMI and still have it so am living proof there’s not a one size fits all type of patient. I have noticed though that salt intake can make symptoms worse.

[@peachmelba9333]

Thank you JA H- I'm being told I may have IIH at 76, weighing less due to gastric bypass than I ever did before- literally 1/2 my pre-surgery weight so why would THIS manifest 😀 now? Mayhap I am a medical curiosity!

[@KristinaMarie463]

2018 after my second lumbar fusion and laminectomy I had a large csf tear where I was taken back to surgery the next morning and a skin graft taken from my left thigh was used to patch that tear. A year later I was informed by one physician after an MRI of my lumbar back detected a considerable amount of fluid within L4-L5 area and the surgeon who performed my spine surgery said it was okay and nothing ever done about it shortly after this finding I began having multiple spontaneous nose drainage and other symptoms from headaches to vertigo and loss of feeling in my arms and hands. These episodes occurred every two weeks all occurred in the same way upon waking up in the mornings as soon as I stood up from bed the symptoms started and I was confused could not walk or talk I would have to lay down and every episode lasted for 24 hours not fully subsiding until the next morning. This lasted for 8-9 months. I had to have a third lumbar fusion in September 2020 after that surgery which was a 360 degree surgery I ironically had my last suspicious episode in November 2020. All of the physicians in my hometown did not know what I had or why these episodes were occurring I had numerous testing done and everything I had came back normal the mri’s and ct scans of the brain showed mild issues but according to these doctors nothing to warrant any problems. Will these symptoms return? I had an abdominal mri a week ago and was told there is mild fluid retention again?

[@ajcarter4177]

Best Doctor ...Had my surgery with him , no issues after that

[@dareks8000]

Thank you so much for this straight-talking video.

[@Sunjustsun]

My daughter is 10 and underweight she is very active. She was just diagnosed last month her pressure was 29. It has already effected her eyesight

[@kristis897]

doctors like to blame everything on weight. I don't believe this is cause by weight. there have been many with pseudo tumor cerebri that have lost weight and have not gotten better and have sometimes gotten worse. they always reach for the weight angle when they don't know what the real cause is or how to cure it.

[@leeannehicks9125]

Crush injury as a kid has left my spine deformed. Every single time they have tried to put a needle in my back they hit my spine snd leave me with a leak. I have had 6 blood patches and 5 incidences. The last dr assured me it wasn't possible for that to happen with today's technology. That time it took 2 blood patches to work and I was a jellyfish for a week afterwards. No needles in my back ever again, thank you!

[@lohikarhu734]

I apparently have two kinds of leaks, an older SIH, that seems very small, and caused occasional symptoms, but, just after an examination where my neck was hyper-extended, I began to have serious, and multiple, CSF leak symptoms, but, trying to get it recognized, and solid diagnostics performed, two months of pain, balance problems, in bed almost all day... Getting an initial diagnosis, for something quite rare, like SIH, is *hard*.

[@sandihooyman4694]

I would love to show my brain MRI. All the doctors here in my small college town are perplexed. I was told that I may have had a massive stroke before birth. I was born in 1962 before MRIs. I was told my brain did not develop much but thanks to plasticity, my brain rewired itself and I graduated HS about a B- student. I do not drive because of low vision. A Neurosurgeon advised me not to be shunted this year when I saw a Neurosurgeon for the first time ever. I also have severe incontinence where I don’t leak, I gush using huge diapers every day. I was also diagnosed with Ankylosing Spondylitis about the same time my Incontinence developed along with IBD. I also have slight CP but never acknowledged by my Pediatrician or parents back in the day. Now I am scooter bound and peeing and in pain 24/7. My Urologist only wants to consider OAB as the reason why I am incontinent. I truly believe it is a spine/brain thing. I guess I’m stuck with this. My MRI of my brain is interesting if you’d like a picture of it

[@TheEDNC]

Sandi Hooyman Sure, post it up using the Jumpshare app and link it from here. How are you doing now?

[@sonyaedgerton4824]

this was very well stated and easy to understand. I was diagnosed with IIH a few months ago. lots of questions and sad there are not more answers towards a cure

[@j3licat]

Good luck without diagnosis! I've been diagnosed for about four years now. I've been in and out of remission. Don't lose hope!

[@raisinggunieapig8753]

Sonya Edgerton did your eyes ever feel sore like pressure​ filling behind them I been losing my vision 2 or 3 time a day.

[@irispiraino1802]

he is wrong about iih

[@Divadimondsify]

Does IIH cause balance problems; disequilibrium; feeling like falling down with no dizziness and no vertigo?

[@irispiraino1802]

yes

[@victorialee3953]

Very interesting and accessible. Thank you!

[@kaitlynconyers4051]

No idea what my pressure was when i went into emergency surgery but after an ETV failure it spiked to 80, external shunt was turned back on. I developed chemical meningitus, white blood cell count was over 800. Couldn't do the shunt until it was under 30. Eye sight came back fully once the papilla edema went down. I got wonderful pictures of my wrinkly optic nerve. No answer to where the clog is in my ventricular system. I guess they said near the base of my neck. who knows, Onset: age 18.

[@humerarehman4596]

Are u alive...did u had Tuberculosis brain??

[@karenlasserre3172]

I want you to be my doctor. My doctor really didn’t say what I have and what I need to do all he said was it was NPH

[@MariaSantos-ph3oh]

I have NPH and Epilepsy for 15 yrs now it drives me nuts not being able to do much ( like going to pick up groceries , etc its effecting my walking , talking can't even think straight sometimes am 58 now and going downhill

[@Boyeaton1]

How are you now? Did you ever look into the keto diet? It was initially made for epilepsy.

[@theunpossiblefile]

In 2007 I experienced extreme sleep deprivation, hissing tinnitus & a possible CSF flush. My insides briefly lite up. It happened by itself, no drugs, no religious overtones except the image of a grasshopper in my minds eye right after. It might also have been a cockroach. After it happened I found an online animated illustration of the CSF ventricular system & the spinal chord. My brain was hitting reset to make up for what’s loosely referred to as insomnia.

[@euanlankybombamccombie6015]

It wasn't a praying mantis per chance??????

[@MisterTomcat]

You lost us at regilous overtones, grasshoppers, and cockroaches. Good luck.

[@MavisCEmory]

I have IIH diagnosed in early 2005. I was not over weight at that time of diagnoses though over the years I have gained weight I am however not in a morbid category. Treatments have included taps and diamox , am currently on diamox . At present the recommendation is VP shunting however I would like to avoid surgery and would like to know if I qualify for stenting?

[@j3licat]

Join the support group on Facebook. They are super helpful with general questions like this. Do you have any autoimmunity problems?

[@Boyeaton1]

@@j3licat What is the facebook group?

[@j3licat]

@@Boyeaton1 If you search for "IIH- Idiopathic Intracranial Hypertension" on Facebook, it's the first closed group that shows up. The "IIH Warriors" is a good one too, but it's not as active.

[@MavisCEmory]

@@j3licat I'm no longer on FB

[@TheEDNC]

Mavis Carroll-emory No one is anymore, everyone has left, FB is dangerous!

[@samedge8854]

accessible and simple to understand.

[@joncolon5116]

I remember getting a shot as a kid in my spine. because I remember my vision zooming in, with details on the wall you couldn't see till you stood and stared directly in front of it and things around me going really slow as I never knew what was happening. Something I cant explain today but remember vividly. Always happened suddenly, no pain no bad symptons, just not knowing what was happening and startled. I always ask my mom about that, she says she didn't know why I got the shot and says they misdiagnosed or mistreated me with it, I always ask about that time and she brushes it off, because they weren't supposed to give me that shot because they never really knew what was wrong at that time. The weird thing is before all that I remember slowly controlling it Everytime that happened, I'm still trying to search around what was the cause or what it is and I never had any mental problems or anything wrong mentally. Its kind of like getting used to sleep paralysis where your half asleep can't move but aware and see and hear your surroundings. You get use to being calm and slowly wake up easier and calmer. I don't know but it's something I can't stop thinking about. And I'm not talking about sleep paralysis, it's just an example on how I was kind of slowly not getting startled by it. No irrelevant or over exaggerated comments just some helpful ideas or articles about anything like it. I know it sounds weird as I remember and as you probably are reading this.

[@joncolon5116]

I just don't know what kind of shot it was.

[@euanlankybombamccombie6015]

Where do you live?....how old are you?...I'd be very firm with mum,or surely everyone can demand to access their FILL medical record,speak to your DR if all fails either a solicitor or citizens advice bureau,let me know how u do....peace

[@TheEDNC]

Jon Colon No doubt it was an Epidural Steroid Injection or ESI, BTW, they were not FDA approved nor are they today.

[@TheLadyaec]

Will this fluid build up show on MRIs without contrast?

[@zaddyspexz1781]

I just wanna know if I can drink my spinal fluid to turn into a titan

[@abhinandantripathi3624]

I'm experiencing distorted vision due to increased intracranial pressure, going through the comment I was very serious.. thanks for making me laugh like mad

[@wakuwaku8815]

Lemme shout.... Ahem🗣️🗣️🗣️🗣️

[@DoorDashers791]

I have multiple sclerosis since 2003 I have ringing in both ears for 6 weeks now nothing has changed I told my neurologist and doctors numerous times and nothing was done. Unbelievable

[@ashiqurrafael]

How are you doing now?

[@Yeshua-AnaHuwa_I-AM-HE]

I’m 3 years late but did you get a burning sensation like a heater inside your head with a really bad headache

[@46gcc]

If there is a problem how do you convince a professional that they need to consider it? The patient is a young adult who has fluid imbalances constantly. How do you say he or she needs an MRI?

[@JohnsHopkinsMedicine]

If you are interested in a second opinion, please call 855-695-4872.

[@neerajbharati8002]

Sir My baby age 18month MRI report says evry thing normal except prominent ventrical system and sulcal spaces. What does it mean. Please help me Thank you🙏

[@JohnsHopkinsMedicine]

Thank you for reaching out to us. We’re very sorry to hear about what your baby is going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.

[@andrewlovato4785]

Hello, my name is Andrew. I'm a 19 year old college student. I have been battling daily headaches and muscle tension in my upper back/shoulders/traps/neck for over a year. I'm doing atlas orthogonal treatment right now. I have gotten maybe 4 adjustments and I haven't gotten any relief. Also I'm looking into the CSF Leak Treatment. If anyone has any ideas or input please let me know. Thank you so much.

[@MisterTomcat]

Stay away from adjustments and chiropractors if you have a leak. That will not fix and could make it worse.

[@darrend2035]

True that ! And also Do you have positional headaches ??

[@Worldofchavo]

Hello can a person with CSF leak, travel from UK to INDIA for 6hours flight. Will aircraft pressure put bad effect on the person.

[@maggiezamarro2442]

I've hade spinal fluid leaks afterear surgery come out of my left nostril like water especially when I bend dwon

[@perlasamudio7349]

I’m 30 years old, I’m suffering badly 15 years headache 🤕 , I just done all examination and I got diagnosis that’s I have high fluid pressure , than I have to lose weight more than I has done already , it’s no a joke those headache 🤕 kill u in silence, it could destroy your day your plans your best moment everything, when I get it I even know where I can just throw out my head aNd run away , these moment I don’t want hears anything any noise around me , it make your blink red light all the time, have to deals with it for life now 🤦🏻‍♀️.

[@abhinandantripathi3624]

Hey @perla I'm is it getting any better with weight loss? Also, were you overweight when it started?

[@BeenaKaKitchen]

Hi, I am going through the same since 2010. Severe pressure in head.. I feel like I m dead.. it has badly affected the quality of my life.. I am helpless

[@as41496]

Dr. My new born baby suffering from hydrocephalus and there is a wound in the back where is sipnal cord from which a liquid substance released. Please tell How long will this baby live in this situation.

[@ahmednessim4429]

i had White matter and the last MRI they found two pontine foci of csf is it the same case?

[@dianepamula2765]

Question-I had 2 severe TBIs I had the back of my head was hit hard and liquid was clear and coming out of my nose. I was very upset because it felt like it was from my brain. Was that coming from my brain??

[@MisterTomcat]

Maybe

[@rajkamalrevathy3768]

My husband underwent endoscopic CSF leak repair along with Septoplasty on July 19, 2017 through his right nostril. As the exact location of the leak was not found, based on the presumptions, doctor sealed the soft areas from where the leak was most likely to occur. He found his right nostril wet and recently he got fluid discharge through his left nostril (nearly 8 drops). My question here is, would the leak sealed on the right side can recur in his left side? If so, should he go for another surgery or wait for it to heal by itself. He underwent a great pain in his previous surgery due to the lumbar drain and also find his head heavy as the exact place of leak was not sealed but had many layers of the tissues and muscles filled in the approximate place of leak. Please let us know what to do further.

[@abhinav4959]

As minoxidile dilates blood vessels so can it cause headache by increasing high pressure

[@bingisneha2054]

Why csf fluid decrease without leakage any one exaplain...Is csf fluid decrease is a serious issue

[@kavita5412]

Sir my father has accident before I year and has brain operation he is parallise his brain fluid flow vein blockage his heart is functioning 35% and his age is 72 years sir what can we do sir plz guide me plz plz

[@raghus4874]

Dear sir In any case the fluid in the head will try rotate dynamically or the layers under or over the skull will do so? If does it caused by any of the brain part? What would be the cure if anybody feels such? Regards

[@tinkerbell121701]

I have Chiari, had surgery 12 years ago, gets worse as you get older.

[@wonderlandalice943]

Connie Buchwald I have Chiari also. My headaches are terrible and gets worse over the years

[@yourdad5935]

So I had a sunburn and my nose peeled abit and it was dripping some clear liquid and I’m worried

[@animallover8779]

Did you fall or have whiplash or whag feels like whiplash that could have caused ir as well or even calficiifed disdks i am mot sure. I am not a doctor but this may lead to some abswerers for you. If you feel like you. Like it is a leak see a specialist about yours dont worry evenually gyou will find answers. I cant get help myself and dont wish this on anynone.

[@yourdad5935]

animal lover it was actually brain fluid turns out it got punctured after peeling the sunburn so it started leaking but now it’s okay

[@animallover8779]

@@yourdad5935 i am so happy for you i have been struggling for months.

[@animallover8779]

Who did you see for your leak ?

[@jojoyyyyygogoy4119]

My father having fluid in his brain..we want him to stay more with us..but the problem we dont have enough money.. I hope there is a good heart to offer a free surgery who can help my father.. I am from Philippines

[@katinss9983]

I had brain surgery almost two years ago to remove a tumour. Since then I've had a build up of fluid in the brain around the site of surgery. Am waiting for quidance from my neuro surgeon. does anyone else know something about this?

[@JohnsHopkinsMedicine]

Hi Katins, if you are interested in a second opinion, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.

[@alicelong9092]

Probably getting a brain shunt like l did.

[@Sendit123]

Contamination during pregnancy or after birth. A healthy diet of miracle foods, earth vegetation and pure water. No meat or dairy should be considered for the sufferer. A whole food plant based diet not contaminated by chemicals is best for all of us.

[@raisinggunieapig8753]

i been having headaces not the long after i was on the depo shot my sysmopsts are getting worse

[@TheEDNC]

raising guniea pig Please visit my YT channel concerning Epidural Steroid Injections with DepoMedrol, which are not FDA approved BTW. Just click onto my icon.

[@sagarshrestha2358]

I was frequently sick in childhood and to see my problem the doctors took out water from my back and now every now and then I get back pain its soo painful 😢😢😭.What should i do I showed it to doctor he prescribed some medicines still I get the pain soo hard its soo painfull 😢😢😭😭.

[@JohnsHopkinsMedicine]

Hi Sagar,, thank you for reaching out to us. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication.If you would like to request an appointment at one of our hospitals, please call [phone].Our medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins Medicine International also provide language interpretation, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible

[@TheEDNC]

Sagar Shrestha Have yourself clinically evaluated for Arachnoiditis

[@gangireddyramanjulareddy2607]

Sir,now I'm fifth month pregnant. In tiffa scan water level in baby is 10.2 but in blood test low risk pregnancy .any problem is there sir. Please reply

[@JohnsHopkinsMedicine]

Please reach out to inquire about a new appointment by calling 443-251-3109. Please note, many of our offices are reaching out to patients to reschedule appointments as video visits; this will depend on visit type and currently, these are only available for existing patients. Please call the above number to learn more about what options may be available for your specific situation. You can see more on our patient and visitor guidelines at www.hopkinsmedicine.org/coronavirus/index.html#patient-visitor-alerts

[@evelisisdavis7242]

That’s me!!!

[@irispiraino1802]

wrong info about iih

[@irispiraino1802]

sorry mark, you need to read up on iih

[@ajcarter4177]

Another option is 3rd ventricular hole Talk to you doctor if you are a candidate

[@Cmeclear]

Is this the same as ETV?

[@brehanna.55]

Diamox and topiramate gave me kidney stones 😢

[@vardaspavarde8480]

is it realy problematick to do boxing with this thing

[@JohnsHopkinsMedicine]

Hi, Because each person’s medical situation is different, we recommend reaching out to your health care provider to see what they recommend.

[@unleashedfamilyvlogs5499]

I have pseudo tumor ceribri:(

[@JohnsHopkinsMedicine]

Hi Stacy, , thank you for reaching out to us. We’re very sorry to hear about what you’re going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.

[@Menzel12846]

@@JohnsHopkinsMedicine this man was my nurosurgeon i miss him ALOT

[@amzderdamn]

Me too

[@gerardinegranjean3489]

@@Menzel12846 what happened to him?

[@CarissaDearest]

Stacy Polk me too, you're not alone. I hope your treatment is going well.

[@kelleyrogers6013]

Try atlas orthogonal before shunts

[@honkeykong9592]

Caffeine?

[@eniggma9353]

fat pride has been real quiet since this video dropped.... 3:39

[@hecty599]

some guy yelled, I wonder why he-

[@woodz4270]

👏🏼👏🏼👏🏼

[@1973CMS]

In

[@nyimawoeser1125]

Its brain related to spinal