ASK THE EXPERT Episode 2 Shunt Revisions

[@lindseysanders3656]

My last shunt was implanted in 1990 at age 8. I’ll be 40 this year. Ive been very blessed. My neurosurgeon from Riley Children’s Hospital was considered one of the best in the country at the time. If I ever need a replacement, I think I’d be scared of these new programmable shunts. New technology isn’t always better.

[@martintipper5800]

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.

[@nikkithompson2647]

Dr. Walker was my neurosurgeon starting when I was about 6 months old, and I’m 38, now. He is definitely missed at the hospital!

[@lelandsmith4809]

I just had my shunt replaced last week I'm 39 it just quit working and the pressure build up almost killed me all I can say is get your shunt checked yearly

[@jfalsdkfds]

I'm in th UK. First shunt aged about 10 weeks, 2nd at 6 years in 1981. Dr's here stopped checking around 1990 as I was able to communicate if I was having problems. I had largely forgotten about it when I started getting headaches in 2017. It was checked and fine. Headaches went. Then came back this year 2022 and I had an emergency operation in May which appears to have worked. May this one work 41 years as well! 🤞🏻

[@adelagoguetyquiengco9601]

Why so many? My baby girls only 16 and had it since she was 14 when she had cancer i don’t understand it it’s scared me I don’t want to lose her

[@remedyke1]

I haven't had a shunt revision since I was 14 and am 41 now...talked to my family doc about it as not needed to see a neurosurgeon and he says either my shunt expired and my body can function without one or I might need a revision one day...I have a medic alert bracelet and hope I don't need to have any more surgeries....Thanks for this!!! I can't imagine over 100 surgeries!!!

[@Yash46597]

Plz contact my baby is suffering from hydrocephalus 9716943777

[@KavitasKitchenCorner]

@@Yash46597 aap kaha se ho ....mera baby ko bhi hydrocephalus h

[@LeoGarcia-ys8oq]

My son has had 4 revisions. he's only one year old this breaks my heart because I know it's not going to be the last one. Currently he's having mild symptoms of shunt failure.

[@elliewilson2888]

I'm currently in a Seattle Hospital for either a shunt revision or replacment they will not know until they get in there but probably replacement due to my shunt was originally placed in May 1989 which was 32 years ago never a problem..I'm getting nervous but I just keep telling myself alot of good things have happened for improvements in 32 yrs. Wish me luck :)

[@amandaallen9460]

My last shunt was implanted as of July 1, 😊2010 as of today (April 21, 2023) but the headaches, nausea, dizziness and memory issues are increasing.. I had an updated scan on Monday and have a follow up on April 26th at 830. I hope it's just seriously over draining, but the fear that it's potentially surgery is always in my mind especially because my last surgeon said I would never make 16 years again and that is this is the 13th year and 13 is usually unlucky... I'm hoping for the best, while also in my mind thinking the worst case scenario

[@GTPRINCESS09]

My last shunt revision was 17 years ago and now I'm starting to feel pressure builded up here and there

[@ramzyziyadeh9259]

Whatever happened? My last revision was 17 years ago too and I’m just starting to feel pressure build up. What did you do? Please let me know!!

[@jontylist1736]

My surgeon was proffesor mendelow a brilliant man who saved my life

[@Benton3650]

I had my shunt installed when I was two weeks old. That one failed and it was replaced. Forty-six years later my shunt, that I had installed when I was born in 1970, finally failed. I had a shunt revision in 2016. I got a lung infection and the tube from my shunt that was placed on the outside of my lung got infected and so I had another revision in 2017.

[@adrianacinapri7224]

Firstly, I belong to the Hydrocephalus Canada Association. I have had my current shunt for just about 28 years. I am 30, was diagnosed & shunted at birth with one of the very first programmable shunts made. I am having quite severe headaches!!! Neurosurgeons gave me 2 options, a complete shunt revision OR they can tie off the line from the shunt to the tube to OBSERVE if there is even a chance I can survive without my shunt

[@Reyna_Aleese]

Hi there, what did you end up doing?

[@adelagoguetyquiengco9601]

My daughter has a ventricular shunt on her left side of her head, she had ALL LEUKEMIA AND IDK WE LIVEBIN GUAM THERES NO DOCTORS FOR HER HERE IM SO CONFUSED MY BABY GIRL😔

[@kimisorensen4974]

That was me. I went 14 years no problems and between the ages of 15-26 I needed close to 40 surgeries.

[@juliewebb3127]

He was very blessed. My granddaughter will be 5 next month and have had 5 revisions. It’s been hell

[@martintipper5800]

I’m so sorry. I know the feeling and desperation wanting your love one to feel better, and live a happy, healthy life. I’ve been dealing with my nightmare for two years, and final gotten an appointment with the Mayo Clinic, with help from one of my health care providers. I will be Praying for all of us who deal with Hydrocephalus.

[@frankrizzo7750]

is it possible that someone who goes 10/20 years without a revision may have been misdiagnosed? possibly living life with no need for this shut, meaning they can go decades without need for a revision.

[@Reyna_Aleese]

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.

[@curtyowellmedicaladventures]

For Dr. Walker... I am a young man with a bright future being clouded by the ever-present danger of my shunt malfunctioning. I have had 35 shunt revisions, with 2/3 of those revisions being actual malfunctions caused by going in too early. With COVID, I know my immunosuppressive state leaves me me vulnerable, but at times I feel like a bomb has gone of in my head. Any input is welcome, but from medical professionals only.

[@dottieb5776]

It’s all about luck I’ve been told ( by my neurosurgeon )though I feel it’s a combination of different factors which can change as we go though life .

[@adriennebruce1673]

I’ve had my shunt for forty years without revisions. Started having headaches last spring but have largely disappeared.

[@tysontroup9504]

Consider yourself very blessed

[@tbalsillie]

40 Years on, I am still living with Hydrocephalus with a revision and for those waiting for the shoe to drop, don't live that way.....you might as well have a heart problem first. Current age: 49

[@lindseysanders3656]

Yes, you can’t live waiting for the shoe to drop. I was born with Spina Bifida & Hydrocephalus. My parents always butted heads on what I would be allowed to do growing up. My Dad said “absolutely not” to most things that would cause a shunt breakage. And my mother said “ Let her live life”. I did fall off of a horse and split a shunt in half once, but that was my last revision. You definitely can’t live in fear.

[@BuchsdrN]

I had a shunt malfunction 3 weeks ago, after 25 years and only my 4th shunt revision.

[@hennieschoeman4425]

Hi had my first vp chunt in 1983 and until 2021 I had 43 operations but all my trouble stopped in 2010 so for the last 11years I had no operations so I wondered if it's normal your video helped me thanx.

[@pandorajones9690]

n 2014 was diagnosed with early onset NPH and have a 2nd vp shunt, but the best part is Social Security took so long to determined that I was disabled due to it that i lost out that monies and they missed 3 bills and now the doctors will not even let me have an office visit just for check up and care of this current vp shunt which has failed back in 2016 and that time woke up with hose out the forehead because I did not and still dont have the monies for the operations for this and almost burned the house down again walked away from stove while making hot dogs, scared that may have memory loss again and get lost and forget who I am and where I live ( has happened before) I forget what I am doing a lot now lost over 150lbs from being off the meds they all had me on..... my husband is scared of the day when he comes home and I scream "who are you " what should I do or any advice??? I am only 56 yrs and scared of the forgetfulness...

[@ALaughaday1]

I think it boils down to the skill of the surgeon. I've had 6 shunt revisions in a 2 year period and he still can't get it right. Every single one of them has had issues with the catheter placed wrong or with it migrating into a bad position. After 6 tries, don't you think he should have gotten one right? I've had 2 revisions within the past 2 months and I'm all ready having symptoms of the catheter being randomly blocked. What the heck am I supposed to do? I live in the boonies and don't have availability to go searching for shunt surgeons. I'm stuck and so damn frustrated. All because of the removal of an Acoustic Neuroma. I don't have hydrocephalus---just high pressure. help

[@cichymichele]

15 years, now I am scared....

[@jontylist1736]

After a life threatning brain injury back in 2006 It required 2 shunts and a metal plate fitted. I have been left with epilepsy,wich is well controlled i am now 56,what are my chances

[@navinandhu7647]

Is the shunt life long necessary

[@ramzyziyadeh9259]

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

[@giannataliercio3642]

I had a shunt put in at 3 weeks old and I’m 14 without any revision and no problems but I’m starting to have problems now I’m kinda scared

[@janjellesteinfurth5169]

I had a 20yr run with my 3rd shunt (1998 -2019)

[@funandgames362]

1997-2019 me to 3rd replacement

[@sanjaykumarmadkami7547]

Do VP shunt can be removed or tighten up to control the drainage of hydrocephalus fluid from brain

[@standupstandout9636]

My so has had multiple shunt revisions.

[@wallbanger772]

Name some of the places they put them

[@wallbanger772]

I've had a shunt since i was a baby. I had a revision in 2009 and i think it's time for another one. The doctor that did the surgery has retired but he still has a practice. Do you think i should go back and get information from him . Can you give me information on what i should do?

[@tysontroup9504]

That's some bullshit! I stopped counting the number of revisions after I hit 200!

[@juliewebb3127]

I’m so sorry

[@scottmcdonnell6975]

I had my first shunt in the late 1970,s. It was probably very new then. Fixed pressure shunt. Worked well till damaged. New adjustable shunt revision. It’s failing. Have all the symptoms. Scared a little. But what is the alternative.