My VP Shunt Journey

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  • Опубліковано 23 гру 2024

КОМЕНТАРІ • 181

  • @nicholasvanbeveren2029
    @nicholasvanbeveren2029 7 років тому +12

    I'm 38 and have had 29 brain surgeries due to Hydrocephalus so I applaud you for this and know how you feel sometimes

    • @valeriehughey7993
      @valeriehughey7993 6 років тому

      Thank goodness I'm not alone, I also was diagnosed with hydrocephalus, my body was producing to much CSF, caused me to have a Seizure, when I was about 10 years old,

  • @christyerhardt5906
    @christyerhardt5906 3 роки тому +2

    Thank you so much for speaking out and helping others it means alot i have the same thing and am getting ready for vp shunt surgery!!!

    • @baileyjorlando3623
      @baileyjorlando3623 3 роки тому +2

      Of course! I can possibly record an updated one? I am married now and a lot has changed! But you will have to keep us updated on your journey!

    • @christyerhardt5906
      @christyerhardt5906 3 роки тому

      Will do i will let you know how my vp shunt surgery went and i will tell you all about it.

  • @Jon-sy3hq
    @Jon-sy3hq 9 років тому

    I'm so happy that you have such a good understanding of your hydrocephalus diagnoses as well as the functionality of your shunt. I have been living with a shunt due to hydrocephalus for about 34 years. Your knowledge of yourself and your situation will empower you to be a extraordinary individual. Be brave, be strong and always be knowledgeable. Good luck to yourself. :-)

  • @zacharyzetts7395
    @zacharyzetts7395 2 роки тому

    This was/is a very informative video! Thankyou! I'm 36yo, I was born with hydrocephalus. At 35yo I was diagnosed with brain cancer and they found hydrocephalus. They put a shunt in.
    I really appreciate this information. The drs can only tell me what they're taught, but it's good to hear it from someone 1sr hand. God bless you, and I hope you are OK!

  • @dominguez729
    @dominguez729 7 років тому

    You are a brave woman ...i hope you get better and have a clear health throughout your life ..

  • @bej006
    @bej006  11 років тому +1

    Jose, this is the sweetest thing anyone has EVER said to me! You're kind words have truly touched me. I am YOUR biggest fan, I can not imagine being in a wheelchair....but if having a shunt has taught me one thing, it's to always count your blessing because someone has it way worse. I am just blessed to be alive and to be able to do all the great things in life. I hope all is well and wish you the best of luck in your journey with a VP shunt, it will never be easy, but it will always be worth it

  • @acemoloney4765
    @acemoloney4765 2 роки тому

    Hi Little Jo! Thanks for sharing your story. My daughter has hydrocephalus. She has a VP Shunt. We are in Australia and there isn’t a-lot of information for us to learn from. This is a great video, thank you again!

    • @baileyjorlando3623
      @baileyjorlando3623 2 роки тому +1

      Let me know if you have any other questions! I could probably do an updated video as well, since this video, i graduated, and got married!

  • @makkam999
    @makkam999 9 років тому +1

    thank you for sharing.. my wife and I really needed this

  • @emilyleigh5410
    @emilyleigh5410 5 років тому +1

    Hi sweet girl! I know this video is a few years old and not sure if you read the comments anymore but I, like many other commenters, too have hydrocephalus and a VP shunt. I’ve had mine since about 6 months old and I’m 32 now. I didn’t have my first revision until shortly after my 30th birthday which was quite the miracle, but have had I think 5-7 revisions in the past 2 years. So, as you can see, I went from a very stable hydrocephalus patient to rather unstable quite quickly, which has made for an incredibly challenging few years. I actually just had my last revision 4 days ago and am thinking of starting a blog to chronicle my journey through my various surgeries the past two years and more than likely in the future. I’d love to hear an update on how you’re doing and potentially chat about our hydro lives if you get a sec! You are such a brave young girl and I would love to share our strength! :) - Emily

    • @baileyjorlando3623
      @baileyjorlando3623 5 років тому

      Emily Leigh Hi Emily! I always read the comments 😍 wow that’s a long time to go without a revision! That’s a lot of surgeries in a short amount of time. How are you feeling? What were some of your symptoms of your shunt failing?

  • @bej006
    @bej006  11 років тому +3

    I will be praying for you son! Life with a shunt is no easy journey! My dad always use to tell me that there was an extra special reason I was suppose to be alive because God gave me a life changing challenge! My parents always treated me like any other child and im thankful that I didn't get special treatment! I wish you the best of luck with your journey, its not an easy one! Keep me updated I would love to know how he is doing!

  • @meshalalanezi
    @meshalalanezi 9 років тому +1

    Love the spirit and the positivity.. wish you all the best.

  • @AnupamRahangdale
    @AnupamRahangdale 3 роки тому

    Thank you sharing it. You are really a brave person. I yet to gain that courage to start sharing hydro condition of my 40 day old son.

  • @meetthemunchlingers5093
    @meetthemunchlingers5093 11 років тому

    Kudos to you for posting this video! I have a VP-shunt to. Not from birth, my hydrocephalus was diagnosed later in life. I know what it means to live a life with a VP-Shunt. I am glad to have found you here. Hope you are doing well! Best wishes!

  • @nikkitameshasookdeo7999
    @nikkitameshasookdeo7999 6 років тому

    God bless you! thank you for sharing your story.

  • @MrChevy7
    @MrChevy7 11 років тому +1

    Keep up your good optimism, God hAs a plan for your life. And he cares for you dearly...God bless you :)

  • @joshuastevens1614
    @joshuastevens1614 6 років тому +1

    I'm 26 and I have a shunt in the back of my head I've had 22 major operations on it and I was premature when I was born I weighed 1 pounds and 12 ounces and I can relate to you I've been in Special Ed my whole entire years of being in school I couldn't really play any sports and when I did play sports I had to be really careful not to get hit in the head I've played soccer I played basketball baseball and on top of that I was also in weight training and I'm still looking into that about the weight training because I was always told that I could never work out on my abs and that it would tear up the cord or something I'm still looking into it trying to figure it out my last surgery I had on it was 2001 on new year's Eve and it's been working ever since and tbh I don't know when itll expire it scares the hell out of me when I go to to operating room

  • @RyanKearns1985
    @RyanKearns1985 11 років тому

    Thank you for posting this! My 9 mo son has hydrocephalus and he is having a vp shunt placed this monday. I really enjoy seeing adults with hydro who are happy! :) Thanks again!

  • @briansalzman6375
    @briansalzman6375 6 років тому +1

    Congratulations..I had my first revision after 15 years two months ago. However, my valve may have failed.

  • @MrChevy7
    @MrChevy7 11 років тому

    Hi there!, I'm your biggest fan now, my name is Jose, I'm in Louisiana, I was born with a birth defect called Spina Bifida. I'm in a wheelchair I'm 38 years old now, and I do have a VP shunt too, I got this shunt recently because my last shunt failed. But I got my new shunt is doing well now, but watching your testimony made me so happy, you are very brave. May God bless you so much. I've had a total of 4 shunt revisions and probably will have more, but I just want to tell you that God loves you

  • @thebohemian.8126
    @thebohemian.8126 6 років тому +3

    Can we start to discuss on this and get permanent solution of this.

  • @Dave998100
    @Dave998100 7 років тому

    Like you, I learn at a slower pace than other folks. Because of the shunt, I have Cerebral Palsy, seizures, & I'm blind in my left eye. But somehow, I can live a somewhat "normal" life. I can't drive a car, but I get around using public transportation, (bus, taxi). I do my own grocery shopping using a motorized grocery cart that I sit in. I use crutches to help me walk. But all-in-all, my life is good.

  • @Benton3650
    @Benton3650 4 роки тому

    You are not alone. 50 yr old female born with Myelomeningocele Spina Bifida/Hydrocephalus/Arnold Chiari Type II. Had my first shunt put in at 2wks old(1970). First shunt failed, so revision was done, also in 1970. 46 years later(2016) my shunt failed and the hydro in my head started building up and a brand new shiny programmable shunt was placed into my head. That one failed in 2017 and another shunt revision was done. 2018 I had a decompression surgery done on my skull because of my Arnold Chiari.

  • @kevinkrash1498
    @kevinkrash1498 8 років тому

    I've always been alone. never had anybody yo talk to about this. I've told few women what my scars are from... they always ask. Today's the first time I thought to put it into UA-cam. I'm so happy you did this... I also was born with hydrocephalus.. also had my first shunt when I was about a week old. I was also premature. I was always really hyper and dare-devilish. My shunt is located at the back right of my head. I had my first replacement at 3 then when I was like 7, then again at 12 and I don't remember the first two times it was replaced... but I remember at 12 I prayed that God would let this new one last until I was done with highschool, because even though I always had friends, I was always embarrassed by this. maybe because without it I'd be completely normal... so I've always lived as if I didn't have a shunt. I always liked extreme sports, skateboarding and bmxing, snowboarding, etc.. now I only skateboard. And the kind of skateboarding I've done and do... is big stair gaps, high jumps off ledges and such... bombing hills, lots of street skating. when I was young the drs said I absolutely must wear a helmet... and I admit, my parents tried... but I've never worn helmets... I've sprained fingers, hit my head, a million bruises and scratches.. but I'VE NEVER HIT THE BACK RIGHT OF MY HEAD! JESUS IS REAL, GOD IS REAL. He's blessed me more than I can ever know. I've been in fist fights, I've done a lot of dumb things, and never hit the back right of my head. I've been punched in the back left of my head hard enough where I got a knot that swelled up a bit. but not the back right. God answered that prayer... my shunt lasted past Highschool... in fact, I still have it. the same one since I was 12.. through all the skateboarding, all the wrestling and rough housing with friends and my brothers, the real fights I've been in... God has always been there... Yes indeed you were meant for something very very important. YOU'RE SO VERY VERY BLESSED. You have a really beautiful smile btw (: oh so... every revision I had... they told me there was a chance I couldn't walk again... and God never let that happen! one of my favorite things to do is skate, and he let me have that. You're right, things could always be worse... the kid next to me had like 23 replacement shunts and couldn't walk. whenever I think of how goof God has been to me I cry. There's a reason for everything, and the reason I survived and you survived is for and because of... Jesus.

    • @baileyjorlando3623
      @baileyjorlando3623 8 років тому

      Kevin Krash you are never alone! I created this video to get my story out and to explain to people what it is like. I've met so many people with hydro it's incredible and every single one of us know what each other feels! I embrace my shiny and am happy to answer any questions from anyone about my scars or the weird little bump/why I have a little bald spot on my head. It's part of me! I actually went to my neurosurgeon and he said there is a large possibility that I don't even have it anymore. I didn't know you could outgrow it, obviously they will never take it out...but it's pretty cool!

    • @kevinkrash1498
      @kevinkrash1498 8 років тому

      Thanks (: and your neurosurgeon said you could outgrow it? Like not need a shunt anymore?

    • @baileyjorlando3623
      @baileyjorlando3623 8 років тому

      Kevin Krash as in my body CAN properly drain the cerebral fluid. I have a mild case of hydro. My body was able to drain a very small amount of fluid but not enough to survive so they put in a shunt. Obviously they will never take it out...but he says there is a high possibility I don't have it anymore because I've had my current shunt for 16 years so he said he had a strong idea that my body just continues to work because it has no reason not to....if that makes sense

  • @curtyowellmedicaladventures
    @curtyowellmedicaladventures 3 роки тому

    I was shunted at 21 days, I have had 45 major operations to my credit, landed in the ICU twice, and the list goes on.

  • @sadet854
    @sadet854 7 років тому

    I also have a vp shunt from my head to my stumic and I know exactly how you feel I also was in special education classes it's just crazy listening to your video And I feel your Paine and I seen ur pain when you said you wasn't able to play soccer it's just crazy because I also wanted to do sports I always wanted to be a boxer and was never able to so I under stand how want ur going threw I had a vp shunt since I was 3months old do to a high fever I had my shunt changed when I was 11 do to head aces and passing out a lot of pain on my shunt and they also shaved my hole head as well and I had 32 stitches in my head in counting and 8 on my stumic that surgery is a world or paine God bless you and your family I love the video and I enjoyed listening to you speak about your life story my names Eddie I'm 23 years old with a wife 2 kids a 2 year old boy and a 7 year old step daughter I'll be praying for you you still have a long life ahead of you don't you worry your said things on this video that I didn't even know about my self thank you

    • @baileyjorlando3623
      @baileyjorlando3623 7 років тому

      Hi Eddie, thanks for the comment and kind words! I posted this video to get my story out and didn't realize how many people with hydrocephalus I would be able to connect with! I wish you all the best in this hydro journey!

  • @chelsean7261
    @chelsean7261 9 років тому +2

    thank you for posting this, sweetie!!! That is awesome that you are in college and pursuing your dreams ☺i have a VP shunt too and also had mine replaced in 3rd grade, ironic huh? We are troopers and shunts just make us more awesome 👍

    • @baileyjorlando3623
      @baileyjorlando3623 9 років тому +1

      How crazy!!! And yes we are troopers!! Hydro heads forever

    • @chelsean7261
      @chelsean7261 9 років тому

      Hydro heads!!! Omg that's awesome! What were you studying then, I know the video is a few years old

    • @baileyjorlando3623
      @baileyjorlando3623 9 років тому +1

      +chelsea n I was an Anima Science major and a criminal justice minor. I work full time at petsmart as a senior animal care specialist!!

  • @eryknowicki9621
    @eryknowicki9621 6 років тому

    hi littleJo, its very nice to see someone with the same condition as i have. yes i have hydrocephalus aswell during my lifetime and im 16 i had 2 VP shunts so far. first one when i was born and that one failed in 2017 and they inserted a new one. you are very brave! i would never have the courage to tell my story

    • @baileyjorlando3623
      @baileyjorlando3623 6 років тому

      PolishMinecraft Bros you kind of just did! Don’t be scared to share your story! That’s why I created mine. I wasn’t sure if this would reach anyone and I’ve had so many people comment and share their stories. Wow you had one not long ago!? Are you fully recovered? How did the surgery go?

  • @sunildua
    @sunildua 7 років тому

    you are such a inspiration! go you !!

  • @bej006
    @bej006  11 років тому +4

    I know:) I have finally come to terms with the fact that my shunt is not a punishment, when I was in HS I got made fun of a lot b/c I was in special ed. and it was so easy to be like "why me?" But now it's not that at all. My dad always told me that God has something great planned for me because why else would he go through so much trouble to keep you alive? And that ALWAYS gets me through...its true...if my life wasn't meant something God wouldn't have given me this roadblock to overcome.

  • @Dave998100
    @Dave998100 7 років тому

    I had the SAME thing happen to me in 2002. I had my shunt replaced, I woke up from surgery, & told my surgeon that I'm STILL experiencing symptoms. HE DIDN'T BELIEVE ME, & SENT ME HOME!!! Two weeks later, I was puking, & had to be rushed into surgery. I woke up in the ICU still hooked up to the breathing machine. I still remember it to this day.

  • @thegirlsclub64
    @thegirlsclub64 8 років тому

    I have hydrocephalus too! It's pretty tough. I've had 11 surgeries. you are so brave.

  • @jaylove7125
    @jaylove7125 5 років тому

    Love seeing Hydro videos...reminds me how I'm not alone. I was born with hydro and I'm 45. My last surgery was in 2002

  • @HisWorshipperDeanna
    @HisWorshipperDeanna 10 років тому +7

    I know all to well what Hydrocephalus is all about,I had my last surgery last year because my shunt malfunctioned! I got huge headaches and I got so sick that if I almost passed out and also could've died! But thank u Jesus,I not only got quick medical attention,but the surgery went smoothly and I was in the hospital for only about one week! I gladly tell my testimony of God's healing power wherever I go,Yes,I thank God for an awsome doctor and the wisdom and knowledge that God has given him,But what the doctors can't do,the great physician Jesus Christ did,and I give Him all the glory,because By His stripes,I am healed!!!!! =D

    • @bej006
      @bej006  10 років тому +1

      I'm glad your surgery went well! I use to be shy about telling my story but now I embrace it! I mean it's the reason I'm still here today! My father always told me that "You're meant to do something extraordinary in this world! Why else would God go through so much trouble to ensure your safety?!"

    • @HisWorshipperDeanna
      @HisWorshipperDeanna 10 років тому

      Amen and Amen,That is soo true! But even though we do go through so much.One thing we can count on is that Jesus is always there for us,He loves us and will heal us,You and I are solid proof of that! =)

    • @bej006
      @bej006  10 років тому

      absolutely! You can just message me on here!

    • @luciadesantis1307
      @luciadesantis1307 10 років тому

      Hi Jo, yes I would like to ask you a thing: you said in the Video that doctors adviced your parents you could have a bad issue because of your hydro, but they were wrong 'cause you are really a smart and nice girl. Did you do some particular therapy or did you reach milestones without any extra help?

    • @bej006
      @bej006  10 років тому +1

      I reached them all by myself!! My parents treated me just like any other child! I also think having two older sisters to show me the ropes helped a lot! Still to this day I learn much slower than peers but I have an IEP plan which allows me extra time on exams and I have them read...those seem to help a lot. But, as far as growing up I didn't go to therapy or have an extra help....my parents just kinda let me do things at my own pace and I always seemed to catch on!

  • @brittenywaters9239
    @brittenywaters9239 10 років тому +5

    You are so brave😌 my shunt failed last year and I was in a coma for 8 weeks I have a Vp shunt. You are amazing for telling your story ps my name is Bretnee

    • @angelsalcedo1173
      @angelsalcedo1173 7 років тому +2

      I'm glad to know I'm not the only person in the world with this

    • @eryknowicki9621
      @eryknowicki9621 6 років тому

      your not the only one angel. i got it aswell

    • @michaelangelo5122
      @michaelangelo5122 6 років тому

      God bless you all and give you the courage. Even my brother met with an accident. It vp shunt and been inserted. We need your prayers

  • @JamesBriggsJbriggs1313
    @JamesBriggsJbriggs1313 11 років тому

    im so proud of you for posting this :)

  • @marleywalbert3069
    @marleywalbert3069 8 років тому

    I have hydrocephalus too, i've had too many shunts to count, too many surgeries to count. The longest I have ever had one shunt was about 8 years and the one I have now is 4 years old. I understand the fear of gym as I assume a lot of the people who have commented on this video do. I'm happy that your shunt has lasted you that long. and I understand that living with this condition is a constant waiting game, just waiting for the next time the shunt is going to give out. It's not fun but all we can do it wait. I plan on going to college to be a neurosurgeon and hopefully there will be a cure before I get there but if not i hope to find one, since right now all we have is a temporary solution...

    • @baileyjorlando3623
      @baileyjorlando3623 8 років тому

      Good for you!! I've been really lucky with my hydro journey! I can't imagine :( I know you feel like your just waiting for the next time for it to fail but you have to be grateful! I went to a hydro walk and saw some people who couldn't walk or talk. Just have to be thankful for everyday!

    • @marleywalbert3069
      @marleywalbert3069 8 років тому +1

      yea. i plan on going to one in september. im very excited

  • @suhagbappi8960
    @suhagbappi8960 5 років тому

    How would you understand your shunt was failed? Pleass answer me.

  • @SmokyMountainStarlight
    @SmokyMountainStarlight 7 років тому

    Thank you for sharing sweet girl!! This is so helpful to us right now. Hope you are well. ❤

    • @baileyjorlando3623
      @baileyjorlando3623 7 років тому +1

      Smoky Mountain Starlight thank you!! Yes I am very well! Just got married in June graduated with my bachelors and have had no shunt issues!!! I’m here for you if you ever need someone to talk to! I know it can be hard to relate to people sometimes which is why I created this video! I LOVE hearing everyone’s stories!

    • @SmokyMountainStarlight
      @SmokyMountainStarlight 7 років тому

      So happy for you that your lifes going well! My 23 yr old son is getting one tomorrow morning.

    • @baileyjorlando3623
      @baileyjorlando3623 7 років тому

      Smoky Mountain Starlight how old is your son?

    • @SmokyMountainStarlight
      @SmokyMountainStarlight 7 років тому

      He is 23

  • @nourasawiei9869
    @nourasawiei9869 2 роки тому

    Hello, I have hydrocephalus, I saw the video, your story is similar to mine, and I wish you recovery while you are strong 💙💪🏻

  • @geraldpenalba4014
    @geraldpenalba4014 6 років тому

    I was born 6 months when I was diagnosed with hydrocephalus and VP shunt was performed on me. I had the same experience like you. Thanks for sharing your story 😊 My name is Gerald & I'm from the Philippines.

  • @autumngiannette5338
    @autumngiannette5338 6 років тому

    Hi, I have a VP shunt and I was actually born with it. I was also born with hydrocephalus so I can definitely relate to you and your story. I'm now a 20 year old who is living with this and doesn't know of anyone who has a VP Shunt. I've had 5 shunt revisions and for my last revisions/shunt malfunction in 2012 I had to stay in the hospital for a total of 16 days. So I can relate to your story your not alone I also was like I said BORN with this myself well I've had it since I was born pretty much. But I can relate to your story so thank you

  • @marieboullemier9071
    @marieboullemier9071 5 років тому

    Marie Boullemier - I had normal pressure hydrocephalus for over 3 years until I was operated on by this wonderful neurosurgeon matthew garnett who fitted a shunt - and suddenly I got my life back big time.

  • @chefsam1978
    @chefsam1978 5 років тому

    I Had surgery for shunt placement at age 2 and a half. I had 4 shunt revisions over the years

  • @hartantoaguswidodo5982
    @hartantoaguswidodo5982 9 років тому +1

    I have hydrocephalus too, but scarried for surgery

  • @Nahhhhhhhhhhh328
    @Nahhhhhhhhhhh328 9 років тому

    when i was Born i had a really bad shunt. but maybye one week or longer i was getting a new one! since The year i was Born, i fel like a normal person. I love The doctors who helped me!

  • @TheHydrobrain
    @TheHydrobrain 7 років тому

    I've been on the hydro road now 32yrs. I am 44yrs old it I discovered that I had hydro at 12yrs old. Bad Headaches came on and I was very sensitive to noise and light.... The doctors at first tried to use Potocin to no avail. Hydrocephalus is like a roller coaster full of ups and downs and it will spin you around and around. If you are new on this journey, let me encourage you. It's the scariest thing you have probably encountered so far in life but you'll make it. It will cause you to get down on your knees and look for help, it will cause you to stare at a computer screen researching for hours. You will be worried if there will be a tomorrow and what it might look like if it does show up. And if you spend to much time looking down the road, just remember to keep your chin up and that there are many of us who are Hydro Survivors and have made it onto adulthood. They first tied Potocin to see if they could regulate the amount of CSF in my ventricles. This didn't work. I was dealing with Stenosis where my vents narrowed so the fluid had no way of escaping unless they shunted me.

  • @washedwithblood1
    @washedwithblood1 9 років тому

    Hey I just wanted to say that it is hard I hear ya . I am 29 years old and had my 1st shunt put in at 8 I also have hydrosufalis. It's so hard to differentiate between a shunt headache and Shunt failure this may sound crazy but since 8 to now which is 29 I have had over 50 brain surgeries stay strong sister in the struggle

  • @bej006
    @bej006  10 років тому

    Brielynn Waters You are so brave!! Thats crazy that you were in a coma for that long! That must have been so hard for your family and friends. You are so brave! Thank you for commenting and sharing a little of your story. I love to hear about others!

  • @angelsalcedo1173
    @angelsalcedo1173 7 років тому +5

    IM GLAD TO KNOW IM NOT THE ONLY One

    • @baileyjorlando3623
      @baileyjorlando3623 7 років тому

      Angel Bertin you are never alone!

    • @Zxouf873
      @Zxouf873 5 років тому

      Me too..i think im not the only one scanning people's necks?

  • @melodywei7684
    @melodywei7684 5 років тому

    Good luck!

  • @bej006
    @bej006  11 років тому

    I had/still have depression...i was never suicidal....but I have been a Christian and God has been the one who has given me enough strength to push through. I remember when my shunt failed...I was in the 3rd grade and I remember sleeping for days...and not realizing that I was asleep...my parents rushed me to the hospital and they found out my shunt was failing. I also remember the crazy headaches....this was nothing I have ever felt before....no amount of tylenol would have cured that.

  • @riddhiverma5179
    @riddhiverma5179 7 років тому

    my brother is 1.5 year old and he is born with fluid in his head and his head was very big ..... now he doesnt move his head ..... doesnt look to anyone .... doesnt sit or walk..... my parents are so worried that some time they verbally abuse him in anger ....... plz help.... how to handle the situation

  • @Lime89606
    @Lime89606 5 років тому

    Hello, I have had Hydrocephalus since i was 3. I am now 30 years old and its been 8 years since my last revision. I've never met anyone who has the same condition, but would love to talk to others around my age who have gone through the same or similar journey as me. I live in Toronto, Canada.

    • @destineyygreen2901
      @destineyygreen2901 4 роки тому

      I’m 27 ... I’ve had it since I was 10 years old .... no revisions until now .... I’ve been having horrible symptoms....

  • @Dave998100
    @Dave998100 7 років тому

    My name is David. I'm 47 years old, & I woke up a few days ago with a splitting headache. I knew that wasn't normal for me, so I called Kaiser, & told them that my VP shunt was about to fail. So I was taken in, & a surgeon took a needle, & drained the fluid off with a needle while I was still awake. That felt very weird, but at least the pain went away.

  • @bej006
    @bej006  11 років тому

    The last thing I remembered before going into surgery was holding my dads hand and we were both crying....one of the surgical techs said "Ready to paint?" I remember hysterically crying and then I was out.. I woke up being wheeled back to my room and saw my parents bawling their eyes out. I came back to a room filled of presents and balloons.

  • @froggiefrog5964
    @froggiefrog5964 11 років тому

    Everyone is unique, but I am glad my parents were adamant I should not be shielded from anything, despite having a VP shunt for hydrocaephalus since 6 weeks with 5 revisions. I have had a fantastic life and seen much of the world, I successfully completed a university degree and have had a 'live life to the full attitude' since childhood. My life is full, active and centred around my wonderful fiancee. At 47, I have probably had more excitement in my life than many who'll live to be twice my age

  • @medicalinthusiest2180
    @medicalinthusiest2180 9 років тому

    How can u ware a headband right on top of ur shunt?

  • @muhammadazlanshah291
    @muhammadazlanshah291 3 роки тому

    Hye.my son is also suffering from this disease . a VP shunt has placed when he was two months only now he is 8 months old but he is facing difficulties in sitting and he can't hold his head properly .can a shunt remove permanently

  • @disappointedguy
    @disappointedguy 7 років тому

    I have hydrocephalus too and never started to search for people with the same condition until now. And honestly it surpises me how many people I found in this same road :o

    • @baileyjorlando3623
      @baileyjorlando3623 7 років тому +1

      d-__-b it's not common but it's not uncommon! That's why I made this video to meet fellow hydros!

  • @rafaelquintero8819
    @rafaelquintero8819 5 років тому

    I read all these stories about people born With hydrocephalous, has anyone acquired hydro in their adulthood? I had my first shunt places at 25 years old. I had a revision in 2012 and now scheduled for another revision in 3 weeks.

  • @krystalwesley7043
    @krystalwesley7043 2 роки тому

    I was in special classes too.

  • @izabellamonroe7579
    @izabellamonroe7579 9 років тому

    hey i have something similar i have pseudo tumor cerebri which is a false tumor and i have high csf pressure i have had three vp shunts then they all got infected ive had menegitis 8 times since just gettng over another menegitis waiting for that shunt again which this one drains into my lung area not my stomach but good luck with this i have a very close idea

  • @MrChevy7
    @MrChevy7 11 років тому

    On March 19th of this year, I began getting outrageous headaches, I thought it was some kind of migraine I was having, but it was just so painful that I decided to call the ambulance..the last thing I remember on that day was being wheeled into the ambulance, I remember the doors closing on the ambulance...then..nothing...nada..zip...the next thing I remember was seeing a big clock on a wall...

  • @khawajaatif7169
    @khawajaatif7169 6 років тому

    Little Jo God bless u

  • @jadebrilliant2898
    @jadebrilliant2898 2 роки тому

    hi i just want to ask what is your activity when you are pre school? with a shunt? thank u

  • @paulsgirl28r80
    @paulsgirl28r80 6 років тому

    I have a VP shunt I've had 5 rain surgery but I have neurofibromatosis and three inoperable brain tumours

  • @candacestonesports
    @candacestonesports 9 років тому

    hi, i was born with hydrocephalus as well. i had my shunt placed when i was 11 months old. i did not know that shunts only last 5-7 years. i am 35 and am now going to be having a possible revision or permanent removal of my shunt. i am a lil nervous about it. i need to see my neurosurgeon soon to find out when that will be. i am also in college. i am attending a community college. good luck in college. and i pray the best for your future career.

    • @mattasowjanya9798
      @mattasowjanya9798 3 роки тому

      Is your shunt removed completely
      May I know please

  • @MrChevy7
    @MrChevy7 11 років тому

    ....I saw my mom and my brother at my side, I then saw a nurse that began examining me, I realized then that I was just operated on, but I don't remember what happened to me from the time I was put into the ambulance, to the time I woke up in the recovery room...very strange...:/

  • @esafam
    @esafam 4 роки тому

    I have a VP shunt too.

  • @candlekhan3427
    @candlekhan3427 2 роки тому

    I wanna know ..after vp shunt surgery what are the problems to face during first pregnancy??? I'm worried..when I thought about😥

  • @evankadyszewski6262
    @evankadyszewski6262 Рік тому

    24 years old and just had a revision earlier this month

  • @vanessawisely4190
    @vanessawisely4190 8 років тому

    I know what your going through I've had my VP shunt since birth and here I am 22-year-old. Im about to get my surgery on Wednesday to get it replace thank GOd! ! cause my tube broke about 10 years ago.. but I had a question on how long was you in the hospital after your surgery ??

  • @krystalwesley7043
    @krystalwesley7043 2 роки тому

    I was diagnosed with this in August 2022

  • @dieansia
    @dieansia 6 років тому

    Your story is very similar to mine I’ve had five vp shunt replacements and the and the last two I had was this year and after the first this year I had a stroke and it was really scary and my whole head is shaved and it was super scary but I stayed positive

    • @baileyjorlando3623
      @baileyjorlando3623 6 років тому

      Noah_da_ Goat Hi Noah! Positivity is the only way to get through!!! That is so scary. You’ve had two in the last 8 months? Wow! How has the recovery process been? Thank you for your story!!!

  • @Cristianandtupac
    @Cristianandtupac 6 років тому

    Thanks for sharing ❤️

  • @ashadmccloud9014
    @ashadmccloud9014 5 років тому

    I have hydrocephalus too I recently had a stroke

  • @MrChevy7
    @MrChevy7 11 років тому

    That made me lose function in several parts of my body. I got into depression for 2 years, and I was suicidal. 1 day before I was planning to kill myself, my aunt, who was a Christian lady, prayed for me and asked me to go with her to church, out of desperation, I went, and I gave myself to The Lord on that day, my suicidal thoughts left me, my depression was cured, and I now am a born again Christian, praising The Lord for all he has given me.

  • @denyagantenbein2992
    @denyagantenbein2992 7 років тому

    is the shunt visible from the outside?

    • @baileyjorlando3623
      @baileyjorlando3623 7 років тому

      Denya Gantenbein if I shaved all of my hair off yes. There is a large bump about 4 inches long and about to 2 wide.

  • @KimberlyWatson2023
    @KimberlyWatson2023 5 років тому

    I was born in 1980 I have a vp shunt and hydrocephalus and spinal bifida

  • @sumandhankhar7481
    @sumandhankhar7481 6 років тому

    Ii really appreciate u plz tell me precaution nd how to live with vp shunt life style routine all about

  • @shondapowellpowell3762
    @shondapowellpowell3762 6 років тому

    i have 2 one on the right and one on t he left i been trying to conceive for years

  • @Emily-ti4xk
    @Emily-ti4xk 7 років тому

    Hi! I have a VP shunt, and have had 8 surgeries. For you does the weather effect your shunt? I'm just wondering because it does for me.

    • @JamesBriggsJbriggs1313
      @JamesBriggsJbriggs1313 7 років тому

      Yes!! I live in Texas and there is a hurricane about to hit. I knew something bad like this was going to happen because my head hurt so bad for the past two weeks. I get really tired and have a head ache.... a lot of times when I feel like this I look out the window and it's either raining or looks like it is about to

  • @douglasknight4418
    @douglasknight4418 8 років тому

    i have water on the brain i have had it since i was born i was always bullied and made fun of but u know what i made it through it and i had a replacement two yrs ago and was in icu for two weeks

  • @Avonmakeuplady101
    @Avonmakeuplady101 11 років тому

    For what the Hydrocephalus is you're right that it has to do with water on the brain... but.. the thing that you may be trying to notify others of is that the other end of the shunt is placed within the bladder to excrete the access fluid from the brain-at least that's the way it is for me. I still have the same shunt that I've had since I was born which was almost 32 years ago. Yay Me!!

    • @muhammadazlanshah291
      @muhammadazlanshah291 3 роки тому

      Hy

    • @muhammadazlanshah291
      @muhammadazlanshah291 3 роки тому

      Can I talk to you in WhatsApp please

    • @muhammadazlanshah291
      @muhammadazlanshah291 3 роки тому

      My son has also a VP shunt I want to discuss his situation wd you

    • @Avonmakeuplady101
      @Avonmakeuplady101 3 роки тому

      @@muhammadazlanshah291 I don't do what's up app or any other app like that.

    • @muhammadazlanshah291
      @muhammadazlanshah291 3 роки тому +1

      @@Avonmakeuplady101 ohh ok so u told that ur VP shunt is working well u haven't any revisions of VP shunt is that true?

  • @rachellejones8011
    @rachellejones8011 5 років тому

    Hi my name is Rachelle I was born vp shunt cents I was a baby and my first surgery I ever had cents I was a baby was in 2010 cents thn I have the same shunt in cents thn and I'm 27 yrs old now and had a baby in 2015 and I have fluid on my brain and it drains 2 the lining of my stumach I always tht I would not be a normal kid and have a family of my own and I always thought with a vp shunt tht it would stop me from being a mom or getting pregnant I'm ever nervous about people knowing this cause I always thought they would make fun of me and i was even scared 2 tell my boyfriend about it even though we were dating cause I don't want a alot of people 2 knw

  • @bej006
    @bej006  11 років тому

    Thank you for the kind words!

  • @Dave998100
    @Dave998100 7 років тому

    Both you, & I essentially have a ticking time bomb inside our heads.

  • @ameliagonyou5019
    @ameliagonyou5019 6 років тому

    i have the exact same thing were so strong

  • @jamyangpelmo5214
    @jamyangpelmo5214 5 років тому

    Oh so having a large head after vp shunt is common

  • @thebohemian.8126
    @thebohemian.8126 6 років тому

    My shunt failed 3 times can anybody tell me how can I treatment permanently

    • @baileyjorlando3623
      @baileyjorlando3623 6 років тому

      laughing thriller I don’t believe there is a cure for hydrocephalus. Please consult your neurosurgeon!

    • @thebohemian.8126
      @thebohemian.8126 6 років тому

      @@baileyjorlando3623 can I contact us plz

    • @thebohemian.8126
      @thebohemian.8126 6 років тому +1

      I want the permanent solution

    • @baileyjorlando3623
      @baileyjorlando3623 6 років тому

      laughing thriller You should contact your doctor....I’m 99% sure there is no “permanent solution”

    • @thebohemian.8126
      @thebohemian.8126 6 років тому

      @@baileyjorlando3623 I don't want to go back to that person again. I can't do any thing just because of this sister can we make a discussion of althose person who's suffering from this.

  • @MrChevy7
    @MrChevy7 11 років тому

    (Puts "Bravest lady in the world" crown on your head) to give you a little more background on me, my 1st surgery was 30 min after I was born, I was diagnosed with Spina Bifida, and put a shunt on me to keep me from dying from the pressure building in my head, I had a total of 12 surgeries in my life.. At 15 years old, I had a unfortunate surgical accident t

  • @kaylene_gramps_medina_307
    @kaylene_gramps_medina_307 5 років тому

    I have the same thing you have

  • @adriannamarie01_
    @adriannamarie01_ 7 років тому

    This is what I have. I have a shunt

  • @jay-ceelandman96
    @jay-ceelandman96 6 років тому

    I just got my second shunt

  • @brittenywaters9239
    @brittenywaters9239 10 років тому

    I have hydrocephalus too

  • @3000nathaniel
    @3000nathaniel 9 років тому

    My thoughts are, you are so brave!!! I've always thought to myself, why I have to be the one with hydrocephalus out of my family! But I learnt to accept it and deal with it. I have 1 question if you can maybe answer it lol but I've always wondered how would I know if my shunt was failing? I was diagnosed with hydrocephalus at birth and got my first shunt placed at a few days old and never had a different shunt placed. I'm now 17 soon to be 18 years old and still with the same shunt since birth. So my question was how do you know if it's failing or not? Thanks for reading!

    • @bej006
      @bej006  9 років тому

      I'm sure it varies person to person but you would know!!! The headaches are excruciating and you sleep all the time. I also remember that I would vomit the cerebral fluid. But I've had my current shunt for 13 years!! If your worried about set an appointment with your neurosurgeon to make sure all is well! That's what I do

    • @candacestonesports
      @candacestonesports 9 років тому

      +littleJo i am going this tuesday to talk to the doctor about the surgery. i am excited about getting my shunt out, but nervous about it at the same time.

    • @bej006
      @bej006  9 років тому

      Yea that is exciting!!! I can understand why your nervous, I would be too! But you will be just fine, trust your doctors and the process.

    • @candacestonesports
      @candacestonesports 9 років тому

      Yes it is,thank you, I will.

    • @bej006
      @bej006  9 років тому +1

      +Nathaniel Pashe I had very obvious signs of something not being right. I would sleep for hours...just just 1 or 2 but 6 or 7. and when I would wake up I would feel exhausted. I also would vomit just clear fluid and I remember the headaches were way more severe than I had ever had before. Turns out, me sleeping so much was me actually losing consciousness and the fluid I was throwing up was the cerebral fluid, because at that point in time my body was doing anything to get it away from my brain. But, I am sure there are many other signs/symptoms and that they may be different from person to person.

  • @krystalsanford6768
    @krystalsanford6768 11 років тому

    My VP Shout Journal

  • @paulsgirl28r80
    @paulsgirl28r80 8 років тому

    I have a VP shunt

  • @mattasowjanya9798
    @mattasowjanya9798 3 роки тому

    Iam hydrocephalic but mine totally cleared it's a miracle in my lifs

    • @nawazahmad6195
      @nawazahmad6195 7 місяців тому

      Hello dear can u tell me about pleas
      How can posible its clear hydrosephalus..?

  • @lashundraharris2694
    @lashundraharris2694 6 років тому

    Am glad to know am not the only one I had mines since I was born in also have headache to