Video

I get pressure headaches and dizziness. I learned the hard way that it's weather related. I try really hard to think before contacting my NS now.

I have had hydrocephalus since birth in 1994 I was diagnosed with Arrested hydrocephalus and I would like to know what I need to be looking for because it was just found through a ct scan and because the chambers in my head are enlarged and I was told that there’s nothing to be done about it,by the way I am now 53 yrs old.thank you

MRS I STUBBS CODEINE DIAZEPAM STRONGBOW MILTONWIPES BODYSHOP TEATREE COVENTRYTELEGRAPH11TH APRIL

Oh my goodness that is so true i wonder all the time why I am hearing a ringing noise and no body else is that makes more sense

I have hydrocephalus was born with it and I have it the rest of my life. I am 33 years old.

I have hydrocephalus from baby to Adult

My baby has been diagnosed with hydrocephalus & has been delivered prematured (25 days before delivery date). Is being treated using Omaya with daily taping requirement. Since last 16 days there is no requirement of taping. ..no bulging in anterior fontenell...What can we conclude... require your suggestion Regards

Diana I would like to thank you and the Hydrocephalus Association for your untiring work for Hydrocephalus patients and families. As a 71 year old who acquired Hydrocephalus (SHYMA) at the age of 19 in the Air Force, where the Government does not recognize Hydrocephalus, I was a homeless veteran. Today I have yet to meet a neurologist who knows of SHYMA even though Mayo Clinic list it as a type. Veterans and civilians suffer with Hydrocephalus without doctors knowledge of the ramifications of the condition. I hope this coming year the government and Hydrocephalus Associations will further educate pain doctors of SHYMA and maybe advocate for veterans like me for disability and treatment. Again I thank the Hydrocephalus Association for their diligence in this matter.

This sounds like Joe Biden.

I need my sign in info again, looking forward to checking out the new app !

I can’t do it but I kinda think I prefer that

I no longer use that app because all of my saved data was deleted by the stupid app, and i wasn't able to recover it so i deleted the app , it was so useful for me since i have hydrocephalus and have two VP shunts now and had all my stuff in the app.

I know this is an old video but thank you. My husband is almost 2 weeks post op and he’s not feeling as good as I had hoped. He does seem to get a headache like this. So maybe it is over draining. I was thinking not enough was draining. He isn’t walking as well as he did after the LP he had a few months ago. I just don’t know. I don’t know if we should go ahead and call his NS or not. He doesn’t even has his stitches out yet. Anyone have advice?

Thank you. We found out Dec 2023 that my husband had enlarged ventricles suspecting NPH. He did see a neurologist who wanted a LP. In early March 2024 he had that done and 2.5hrs after the LP his walk was back to normal. A few days later he told me he did feel lighter on his feet. I was thankful he even noticed a difference. He had a shunt placed on June 12, 2024. He did have a horrible head pain but no bleed was found. About 14hrs later they got that pain under control and after 2 nights was released to go home. He did tell the neurosurgeons assistant that he already felt lighter on his feet. It’s just over a week after his surgery and things seem to be going fairly well. I assume he will need time. Time to recover. I did notice his symptoms did get a little worse from March when he had his LP to June when he had his shunt placed. We’re not positive how long he had had NPH. I suspected from 2020. A head injury that was never treated. But the neurosurgeon also mentioned burn pits overseas. And he was exposed to those on multiple different deployment while in the military. Either way, this is our new life and I appreciate the doctors who have been involved in our journey.

Waiting to find out if this is what I have I saw neurologist will get an EEG next if I need this surgery I am 100%getting it

Stay strong my friends

Thanks to you and the patient🙏🏻

Thank you for this. You have no idea what this video means to me. I've only met one other person with a shunt, and she had only 1 operation and was pain free. I couldn't believe it! I thought that I was an odd case. Until now. Almost nobody in my life can understand or comprehend a headache 24 hours a day (or even going through multiple surgeries for that matter), and it can be frustrating! I can say that my mother-in-law is the one who noticed a connection with my headache and the weather/season changes. I hadn't paid any attention until she pointed it out one day. Then I was like, yeah! I'm basically a human barometer! Also, I do indeed know what it feels like to live without a headache, and I'll never forget it! It was back in 2006. I woke up after my latest revision and was shocked that I didn't have a headache! Every day that I woke up, I acknowledged that I was pain free and I didn't take a single moment of it for granted! So, you can imagine my disappointment when it came back with a vengeance by the next year. For a bit of context... My condition stems from a car wreck with a drunk driver when I was 10 months old (way back in February of 1979). The collision was so violent that I was thrown from my car seat (which was basically just a booster seat with a bar across my lap) and in to the dash at 80 miles an hour. It damaged my skull, making it smaller than it should be. A VP shunt was placed, but they thought it would be temporary and I was never considered for revisions as I got older. As the years went on, I started getting really bad headaches. By the time I was 12, I couldn't stand the light and was constantly vomiting. My CAT scans and X-rays looked normal, so the doctors thought that I was faking (even though I was dry heaving in their sink). It wasn't until a neurosurgeon decided to tap my shunt that he saw just how bad it was. The spinal fluid shot out like water from a squirt gun the moment he punctured it, and I was scheduled for an emergency surgery (as I also had my very first existential crisis) at that very second! Turns out that I still needed a shunt after all. Since everything looked normal, but my brain was actually under so much pressure, I was diagnosed with Slit Ventrical Syndrome. After that, I needed surgeries multiple times a year; sometimes a month. Being a boy with an obvious medical condition was like blood in the water for bullies. So a lot of my revisions were because my shunt was damaged in fights. Not only that, but when I was 15, I got a serious infection during an operation and spent the entire Summer in the hospital and going through multiple surgeries as they tried to place the shunt in other spots that weren't infected. I had so many throughout my teenage years that a doctor joked that I'd had "trillions and trillions". I never even made it through High School, and I really tried! (I was still taking Pre-Algebra in 11th grade since I kept falling behind because of the revisions every Fall and Spring. I gave up when I couldn't get through that year either.) Surgeries finally slowed down to every 6 months in my early twenties. At 25 I found a neurosurgeon who diagnosed me with Intra-cranial Hypertension and he installed a programmable shunt. Now, I get adjustments every 6 months with surgeries happening every 4 years when things get clogged. Although, my last one was in February 2017. So I've finally been able to grow my hair out (even if I don't have as much as I used to)! I still have a constant headache, but at least a programmable shunt keeps me from going under the knife when things get really bad during the transitional seasons.

I don’t have scars on my head but if I did I would likely hide them because I’m very self conscious of my appearance

Thank you for sharing. My husband is 48. Diagnosed with NPH. He had great results after LP. Shunt surgery in June. I am hopeful that this could be helpful for him.

I’ve never had a regular headache

What meds u take?

I'm sorry my name is Gloria Castro I live in Corpus Christi it hurts the tightness in my head I don't know what to do anymore someone please help me

So guy im in highschool i had brain surgery in 2021 and someone tried to fight me but i was scared because i don't want to get hit in my head but now everyone think im scared and the guy always provoking my to fight him and im not a snich so im not gonna tell my teacher but i want to learn how to defend myself because one day i might end up haveing to fight someone

I had my shunt surgery twelve years ago. By all accounts, it was wildly successful. I did not wish to return to my career as a college. professor. I continued to experience some level of the major symptoms. Months and even years later, I can say that for most of that time I have experienced positive resolution of these symptoms and a return to the characteristics of my personality and abilities. For example, my sense of humor "clicked". on after three year's Cogniotive function is slow and steady as I am increasingly able to design my own strategies. My personal involvement in my own recovery is a source of personal pride. I have even found strengths in executive functions that were not prominent before surgery. Recently, I've decided to become very involved in service in an international organization. I believe that careful analysis of my involvement will reveal continued improvement in cognitive function. Improvement these days is subtle but recognized by loved ones and others who know me well. I have asked my neurosurgeon to continue monitoring me to identify any issues with my condition or shunt apparatus. Asm I unusually fortunate? :Probably - but I'm convinced that my motivation to grow as an individual , is largely connected to my own very focused attention.

What a perfect sad answer 2:36 very depressing..my nerusrosrgen won't listen to me I'm im so much pain because it affects my DYSTONIA..

My shunt, 1991!!! Getting ready for my first revision. The headaches, blurred vision and all the other symptoms that come with shunt malfunction, needs to go away.

Thank god for this video! I’ve been in agony with my shoulder and just under my diaphragm since my last shunt insertion!

I was 29 years old in 1991, when I was first diagnosed with Hydrocephalus, with VP shunt surgery. I am now 62, ready for my first revision. I’m concerned that so many neurosurgeons won’t touch an over shunting valve. However, the second concern, is doctors who rely of equipment to diagnose shunt revisions, vs patient input. Headaches, difficulty walking, nausea and tiredness to start. Neurologist want mask the symptoms with headache medication, but that doesn’t correct anything to fix imbalance, vision problems and inability to focus.

Why in Spanish?

A also have 2 baby boys with hydrocephalus

Ever had a syncopal seizure? I’ve had many.

I started hearing mine very early in life. When it's silent, it sounds like the buzzing from a hearing test

KONICA MINOLTA KONICA MINOLTA KONICA MINOLTA004217 PLASHET WARD LONDON 18th JANUARY 19thFEB

KONICA MINOLTA KONICA MINOLTA KONICA MINOLTA004217 HYPROMELLOSE4217 HYPROMELLOSE4217 HYPROMELLOSE4217 HYPROMELLOSE4217 HYPROMELLOSE4217 HYPROMELLOSE4217 HYPROMELLOSE4217 HYPROMELLOSE4217 HYPROMELLOSE4217 HYPROMELLOSE4217

❤

Thank you very much

I have a VP shunt. I had it 6 months ago after a failed ETV that nearly killed me. Giving me cerebral salt wasting and acute kidney injury.

Excellent work by both doctors, very informative and helpful.

Is it always evident to see excess csf with an mri? Can positioning of the pts.head change csf flow pressure ?

Amanda looks like Diane lane

I really need you guys help!😢❤

I had a shunt placed at 6 months old, only one revision at 9 years old. I am now 26. So the shunt is 17 years old. I’ve been feeling pressure. Should I be worried

Hello, my daughter is now 20 yrs old also has Down’s syndrome. Her last revision was at 4. She gets yearly checks, but now I’m freaking out that it has been so long. I’m living in fear because I just don’t want her to have to go through multiple surgeries as I am reading some of you have. Last couple months she has been very bratty and urinates a lot at night. She denies any pain. But I feel as though I’m becoming more paranoid as she gets older. And may be afraid to communicate to me that she has headaches. She is scheduled to see her neurologist next week. I pray she continues to do well.

They need to fix this issue. It is disabling in some cases. I never had this issue as a kid, but as an adult, it's like a switch flipped. For about the last five years, I have NO tolerance for low-pressure weather systems. I'm down for the count for days. It's like I'm drunk and hung-over at the same time. The headache is incredible. I feel like someone hit me with a hammer. I get shaky; nauseous, physically ill; drowsy. For days. EVERY SINGLE TIME. How bad it gets depends on how bad the weather system is. How is THAT supposed to be considered normal?

Yes sometimes it’s like a high pitched noise so irritating 😅 my family think I’m crazy

Hypokinetic or Magnetic Gait?

❤ my son

Hi all, Thank you for these "ask the expert" videos.... very helpful. I just had a 3 day external lumbar drain test. I showed improvement on cog test, the gait test and my urinary urgency issues disappeared almost immediately. Overall I'm feeling SOOO much better. Unsure if it is enough for a shunt operation approval..... tbd Does anyone know how long these improvements will last once now that the test is over? Might I get a few more days of feeling somewhat normal? ty

Why is it called " Normal Pressure Hydrocephalus??