The Ask the Expert series on Hydrocephalus needs SO much improvement!! On every level. It is not engaging and not as informative as it should be. Amateur….when it should be Pro. You could do so much better!!

Excellent presentation!

I came very close to being diagnosed with dementia. I am 65 y/o male who had just retired when finally I came across a neurosurgeon that not only said I had hydrocephalus but also that he could make me better. I couldn’t walk very well and possessed most of the classic symptoms which were greatly reduced after my shunt surgery. It was a weight off my shoulders just to be diagnosed correctly. I now walk normally and my cognitive skills have improved. I have had one revision so far but I’m so glad that I received a new lease on life. So I know what you’ve been through and I wish you all the best life has to give. Keep spreading the word Danny!

I’ve had my current shunt since 1988 and if it was conclusively shown that it is no longer needed I think I would rather it was left in place because I don’t want another surgery if it’s not really needed

I am 64 and never experienced a "transition". I now rely on my sister, an RN, for my care. I was fortunate as a juvenile, to have only 3 NSGs up to the age of 28. This is when the real complications began. Every malfunction since had resulted in multiple surgeries. My last hospitalization resulted in 9 shunt surgeries in a 4 month period. It seems the technology is still in its infancy.

My son had an ICP monitor for 24 hours at UCLA years ago. His surgeon was amazed at how "normal" his pressures were for all positions. He wouldn't sleep though, they brought him a video game to play while he was there and he was not going to miss a second of video game time!

I showed off my scars after a brain hemorrhage and stent inserted for hydrocephalus.

Dr. Luciano is a great doctor. I saw him in Cleveland Ohio.

This post is so important. I'm in tears. My sis was born w/this condition. Unfortunately it has gone unchecked for 50 years. She is dying slowly & we are all watching. In NYC. HELP me help her.

31 full years of it went all those years only having three surgeries total and two revisions complications came due to a concussion a year ago in turn my shunt got displaced and since it been so long since my revisions they took the catheter from the first and routed it with a second shunt. Which I’ve also got to see in 31 years how far the technology of the shunt came deeming its flow features magnetically adjustable versus the opening of the head again to make an adjustment for fluid flow. Amazing isn’t it.

Blood brain barrier - is there an increase in brain infections with a shunt in the belly?

I am a patient with known communicating hydrocephalus and I also face a challenge of eye pain, can it be that they are connected

What if you have hydrocephalis but have not been treated yet and are very reluctant to get the tap, etc. what can happen? 32:26 32:34 32:34 32:37 29:59 ot

I have screeching in my ears

Can a shunt be removed because i was wrongly diagnose with hydrocephalus .I have CIDP.

Great step may the LORD keep everyone safe with love from Namibia Africa🙏

Would constant ringing in ear on shunt side have a solution? Only happened since last revision and hearing aids made it worse. Neurosurgeon said there’s no solution, I have a second opinion in December.

Thank you ! I am in the process of Hydrocephalus evaluation and you info helps me when I next meet my neurologist!

❤️❤️❤️❤️😍😍😍

I was recently fitted with ann vp shunt . After yeaaaaasrs of dinilitating headaches , I am now free of headaches . Thanks for your great work .

❤️❤️❤️❤️❤️❤️❤️❤️❤️ love her

I believe it is possible to be born with it and not have symptoms severe enough to diagnose until later in life

I still have my original shunt from the early 1970's. it was a different experimental shunt procedure, that they did at that time. 50 some years later, no other surgeries or setbacks with this shunt.

My son has had 15 shunt surgeries due to the tubing getting clogged. :( Weird how scientist can find a drug like Viagara over a better shunt so people can live. Thank you for bringing awareness

I've had 31 shunt revisions and 2 intestinal bypasses due to a shunt infection.

G00d Morning

I have had the three major symptoms of NPH for almost 3 years and was finally diagnosed by a second neurosurgeon I had a shunt implanted and it was adjusted about 6 weeks later. I am still having headaches and think the doctor will adjust it again next week. I am 77 and it was not easy for me but I have a good doctor in Naples FL and slowly getting better. Just happy I was diagnosed.

As an adult who was born with Hydrocephalus in 1968 (i'm 56 now) I have many, many headaches over my life. i know the differences between a regular headache and a "shunt headache"). A "normal" headache that everyone gets are a dull ache, take two Tylonol (not Advil or Ipprovin (sp") because the chemical in Advil is a blood thinner, and it goes away and doesn't come back. A bad "Shunt headache" goes away and comes back often very severe. I compare a shunt headache to a bad migraine headache that won't go away and it makes your muscles weak. My currant neaurosurgeon asked me recently "Do u know the difference between the two headaches?" I wanted to smack her, i mean like I said I've had hydrocephalus and shunts all my life of course i know the difference and I have diagnosed myself (successfully I may add) since I was 12 but people or should I say my family never listen to me until it is too late and I am found unconscious because of the pain when I already knew it was the shunt.

I've had hydrocephalus since birth. I have only remember having one revision 12 years ago. Why does the shunt have to be removed and placed somewhere else. because they placed one in five different places.

Am Caregiver of NPH family patient who had to their Strata magnetically-adjustable valve replaced ("revised") due to running out of adjustment (over-drainage) per Gary's question near the 52:00 mark. They got a 1.5 Strata II and all has been well (after a bout of meningitis caused by the 2nd revision and are now on their 3rd, so far so good). Their only complaint is if they bend over such as doing house work (scrubbing floor), or coughing hard (very painful), still have fear of flying but mainly due to expected nausea at elevation / air pressure changes. Thanks for this very informative session.

Why is there not a shunt that can provide a pressure reading via Bluetooth or other means? It could help to identify a blockage earlyi would think.

I've had hydrocephalus since birth. Double shunted VP shunt and currently have a VA strata valve. 31 total shunt revisions

Can you see that it is painful when looking at stomach from the inside? Need to know as I have had them look at it and no signs. But the pain that I have.

I never want mine removed. I feel safe with it.

But its about females what about males will they have babies if he have hydrocephalus

209 Kuphal Haven

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This has been me for the past 5 years. I’ve had all these pains my shoulder can be very painful to the point where I can’t even sleep. And stomach pains are just as bad. Stomach pains is a every day thing at the moment. And now I’m in Hospital and they’re still trying to diagnose it. It’s been three weeks of me being in here and my Doctor has just seen this video. I’m hoping that my neurosurgeon see this and helps me out. I’m sick of being in pain and missing my partner and children. And now I have a new grandchild at 7 weeks old and I’m not able to be there to spend these special moments with him. Coming from New Zealand Gisborne.

I lost my younger daughter last Sunday (29 Sept.). She had only one surgery when she was 15 days old.

Great commentary

I have had hydrocephalus for my whole life, (55 years) I can definitely tell the difference between nomal headache and shunt headache. A norma headache for me is a dull ache and it goes away and I work through it but a shunt headache, a bad shut headache to me, feels like if a person has a bad migraine headache and that it throbs for a long time and you are sensitive to light and sound.

464 Ayana Fort

My is trev Callow from AUstralia and i have Hydrocephalus at 14 month old now i have 2 shunts in menow i am 63 years young

My son is 20 months old he is hydrocephlyic he had 6 surgery before right nowhere is again hostipized form last 21 days and he not getting well I need help

I was born with Hydrocephalus since birth (55 years ago and countless shunt revisions later) last shunt being last August . i had the shunt put in when the procedure was in it's infancy .

Danny, you look great!!!! I've had hydrocephalus and my shunts for 55 years. There needs more funding for research new programs.

Thank you very much I learned a lot. Hosts: Please allow the speakers to have comfortable seating and water glasses

I feel seen. As I lay in bed from this pain in my shoulder. It hurts so bad and yes, I have the pain in my abdomen as well.

Thank you from India ❤