Macey’s Story: Neurosurgery to Treat Hydrocephalus
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- Опубликовано: 28 авг 2024
- Diagnosed with hydrocephalus before she was born, Macey lived a relatively normal life. However, at age 14, she began experiencing blurry vision, blackouts and headaches and doctors told her that her hydrocephalus had worsened. She would need surgery immediately to alleviate the pressure in her brain. Macey’s parents chose Texas Children’s Hospital for their daughter’s care and the surgery was a great success. She has returned to her daily activities, including her love of singing, and has a bright future ahead of her. To learn more about treatment for hydrocephalus, visit texaschildrens.org/neurosurgery.
It took 14 years to correct it? Wow! I was diagnosed with hydrocephalus at birth, and a shunt was put in at two weeks old. I had two replacement surgeries after that, with the final replacement being done at 8 years old. I’m 39 now.
I just got diagnosed at 30 😔
I was diagnosed before birth and had my first surgery two days later and then when i was 7 had a shunt malfunction so had to get a new one. I have a 2 yr old nephew that has hydrocephalus
Me too and I’m now 32
Mam how are u now?
Me too um 48 yrs old and have 5 kids and 5 grandkids God is good
I had an ETV procedure done in 2013, after having 13 brain surgeries for shunt revisions due to Hydrocephalus. My surgeon only gave the procedure about a 30% success rate, but it's worked since then and I've had no issues!! Thank you Dr. Willie! Emory in Atlanta, GA is the best!!!!
I am so glad that everything is going fine and that they were able to help her without complications.
I got my 1st VP shunt when I was 6 months old. In my case, it was unfortunately not smooth sailing. By the time I was 1 year old, I already had a shunt replacement. When I was 3 years old, my brain started bleeding as a result from complications during a shunt revision. It caused a lot of damage and they had to swap the shunt to the other side of my head. Because of some brain damage, I had some difficulty with muscle development etc. I had to go to a Cerebral Palsy school with special therapists that could assist with my early muscle development.
I had many shunt replacements in primary school, some with complications and some without. Through a miracle, I went past early issues, attended a normal high school, and were able to do most things that a normal person my age could do. I had shunt replacements during high school. The 1st one did not go well and kept me away from school for 76 days which made the pressure of catching up with school work intense.
I have parents that did not give up and always helped me to achieve what other people might find impossible. I had many shunt revisions thereafter. After school, I started competing in marathons and ultra-marathons, the longest of which was the Comrades (90km).
I am now 37 years old. I am a happily married man. My last shunt revision was last year.
The point of this long thing that I have just written is just to say that hydrocephalus does not necessarily have to limit your life in any way. I know that more operations, pain and lumbar punctures will come, but we will worry about that when it happens.
Glad to hear you doing really good.. i pray may God keep you healthy..
My son just had ETV month before his year bd.. everything went well i just hope he will recover and bless like you in life.
@@sheikhrauf9812 May you son recover. I wish you all the best. Much of my recovery was due to the never-ending support of my parents.
Your story has encouraged me to just keep going with my son ! I’m so happy to read this !!
Wow... my daughter is 14 year old and had her shut since she was 16 months and never had any problems... my God be with you.
@@shirleanbaker3534 Thank you. May God be with you and your daughter. I have had my current shunt for 8 years now, which is a record for me. I hope that it is a good sign of things to come. I had trouble with the bottom part last year but that was a minor operation in comparison to replacing the entire shunt.
I went through a semi similar experience lately with my hydrocephalus in the sense that, I had a shunt put in at a very young age, and had no issues for 14 years as well, and noticed problems that grew over the span of 2 weeks until we finally figured out I needed a shunt revision. It's crazy how you can put it on the back burner for so long and then it comes back and hits you, cuz just as was said, no matter how well and unnoticeable it can be, it is a life long condition. Opening up about it can be so freeing. So glad she's doing better❤❤
My heart goes out to you mamma!❤️
Love for you
I’ve had a VP shunt since I was 3 months old, and I’m now 17. I know what you’re going through, but I’m pretty sure that I’ll need a new one in a year or two. Hope you’re doing well, Macey. C:
Plz mam can you explain me what do you mean by "you R pretty sure that U will need a new one in a year or two".did you mean a new shunt?????
@@Mr.SRITAM007 Yes.
I am on my 4th shunt since birth the first one was put in only lasted a year I had a new one fitted in 1989 which then lasted 19 years had to have it replaced in 2008 and will have had current one in 13 years in November this year !
Shunts do eventrually have to be changed just don’t know the exact time they need to be
Your not on your own Macey your strong
I found out the same way.... but when she was 16 months, she had her shunt put in and she is now 14 years old and tell working great 😊 thank you God....
hello. My son is 20 had 3rd ventriculostomy last Sept. hydrocephalus is gone and spinal tap says fluid is normal but can’t relieve the pressure headaches. Did you experience that as well..if so how did you find relief from it? Appreciate any feedback and thank you for sharing your story.
@@charleens.7668 no she don’t have headaches…. She’s doing good. She never had any problems
@@shirleanbaker3534 amen.
Newborn with shunt doing good in all his normal life or we feel some change
I had a VP shunt fitted when I was 6 years old. I have recently turned 62 and still have the original shunt, with very minimal side effects which have been able to been controlled with medication
Did you have any revisions sir so far may I know please
Have the same and just had a VP shunt inserted. Age 31 and living in London. Thanks Dr Hill from Queen Square!
Is there some issue comes after having surgery?
Love you Macey! I know this has been such a battle for you, but as you know the war is already won by Our Savior, Jesus Christ. He's got His Healing Hand on you and your situation. I want everyone to know that this all around beautiful girl was my Jr. Bridesmaid at our wedding on June 22nd of this year (Macey is my cousin) and she surprised my husband and I by singing the MOST GORGEOUS version of You Say by Lauren Daigle. Our whole reception was in tears, including the Groom and myself. Macey, you are more than amazing and I have always been so proud of all of your accomplishments! Love always, Lulu & Todd (Nunu & Todd ;))
Lauren Wilson thank you so much Nunu! I am so happy I got to sing for y’all 💙
Thanks
I have hydrocephalus and diagnosed last year at 48. I have had it for my whole life but it’s kicked off now. It’s a blockage. I had an ETV which made me so ill I was dying. I had salt wasting syndrome. Then told it had failed. So within the 6 mths I have had a failed ETV and now a VP shunt. I also have autism
she is so strong girl
I can't believe anyone gives stories like this a thumbs down. But, i guess if you haven't lived it, you can't understand it. I have had hydrocephalus from birth. I have had 2 operations. One when I was born and a revision of my shunt in my teens. Thank God they got it taken care of when they did. I have had no lasting effects. I thank God and my parents for caring for me.
Wow that’s amazing! My son is 20 had 3rd ventriculostomy last Sept. hydrocephalus is gone and spinal tap says fluid is normal but can’t relieve the pressure headaches. Did you experience that as well..if so how did you find relief from it? Appreciate any feedback and thank you for sharing your story.
I have a shunt too. It’s nice to hear other people’s stories.
God bless you young lady 🙂👏👏👏
She is beautiful!😍
Me too I have a shunt and I can sing too u have a long life ahead of u um 48 telling u this
Thank you for sharing your experience. A loved family member just had a vp shunt end of March and I’m hoping all will go well for his future.
My son had Shunt when he was 4months old, he is already 4 years old now and his development is so delayed he can't even walk, talk and he has seizure but his pediatrician told us that there is no problem with his shunt.
How is he doing now? My son is 20 had 3rd ventriculostomy last Sept due to brain tumor that’s to dangerous to remove. hydrocephalus is gone and spinal tap says fluid is normal but can’t relieve the pressure headaches. I just keep praying. thank you for sharing your story.
Wow its amazing to see others with the same thing I have i had a vp shunt when I was a couple months old and had to get a new put in a year ago im 21 now
I had hydrocephalus before it was back in August in 2018 when the doctor told me I had it cause back at home my head been hurting and i have fainted to times and the other reason i caint say but on Wednesday when i woke up from surgery i felt great and i was in middle that time and now im in highschool and watching this vid in 2020 make me realize man the years really have changed
I’ve had it and was diagnosed when I was 13 back in 2017, I didn’t get a shunt but some other form of surgery. I think it was called a ETV. But I then had a second surgery in 2022. I’d say the worst part about it isn’t the surgery but in my case the MRI, I developed claustrophobia because of it and the constant fear and stress of having another surgery, the never ending stress whenever you get a headache or don’t feel completely normal. It just wares down on you and caused me to start smoking. But at the end of the day I have respect for the surgeons who do it. Feels like a curse to me but they do their jobs every day.
Thanks for sharing, I had an ETV.
I hope she is doing well now
"Can I sing?"
"Of course!"
I love that.
I have a VP shunt to your not alone in this
Do you get pressure headaches? My son is 20 had 3rd ventriculostomy last Sept. hydrocephalus is gone and spinal tap says fluid is normal but can’t relieve the pressure headaches. Did you experience that as well..if so how did you find relief from it? Appreciate any feedback and thank you for sharing your story.
I hope my baby will be ok like your daughter 😇🙏🙏
He also have hydrocephalus😥😥
Hey Macey I had my VP shunt repaired and was only in the hospital 4 days and the day I came home I picked up my guitar and played on it my mom had some friends come over and we celbrated me recovering from brain surgery and there was this girl at our house and her exact words was "3 days ago he just had brain surgery and he's playing guitar IS THIS NORMAL?" my mom said for Scotty it is
I live with Hydrocephalus, I m Blessed and Doing all I can do to Enjoying Life Stay Blessed
I was born with hydrocephalus due to an arachnoid cyst and my mom was told that I likely wouldn’t be able to walk talk and that I would be mentally retarded and 17 years later I’m doing everything they said I wouldn’t be able to do and more #nomorebs
I love this video, not alot of kids with hydrocephalus are eligible for ETV surgery. My son is 4 and he was diagnosed and had ETV surgery at nine months.
Hasn't he had any problems since then..
Fun fact: vision problems aren’t the only issues
Other issues include: sore heads, and feeling sick
i have hydrocephalus and i have had 3 brain surgeries to have vp shunts placed
I have had 6 shunt revisions for my own hydrocephalus. I was born weighing only 1 lb 8 oz.
I have hydrocephalus.I have had surgery recently. I got my shunt at 2 or 3 months.i know how difficult life is for you.
I had surgery at two weeks that was 50 years ago
did you get a shunt too? if yes, how often did you change it? (how many surgeries did you have?)
It’s okay guys ! We can live normal lives
Get your vp shunt checked regularly I had mine for 39 years and just had it replaced a week ago I wish I would have had it checked out regularly they can get clogged up or just quit working out of the blue
im happy to see this I also know someone who had a vp shunt for 40 plus years so im only 23 and I only had it for about 6 months and other than my shunt im completely healthy so I hope I get this amount of luck thank you for sharing
How do you feel now? My son is 20 had 3rd ventriculostomy last Sept. hydrocephalus is gone and spinal tap says fluid is normal but can’t relieve the pressure headaches. Did you experience that as well..if so how did you find relief from it? Appreciate any feedback and thank you for sharing your story.
I have Hydrocephalus
How did she survive without a shunt or ab ETV for 14 years?? I was shunted from birth.
My baby is 2 years old hydrocephalus,but not neck control and vision
i have Hydrocephalus i have a Shunt i live a normal live i was diagnosed with Hydrocephalus at 2months
I have hydrocephalus but it’s different because it’s congenital hydrocephalus and I have a Vp shunt
Same here there is not a thing they can do for me or anyone with VP shunts
Christopher Kelly actually I have an update on my shunt my doctors have confirmed that since my Vp Shunt isn’t draining as much water in my brain anymore that at some point in my life when it’s safe it may be removed but it’s a maybe😊
So can you have the shunt removed ?
Ciearra Fuller I’m not a doctor so I’m not exactly sure but from the 16 years that I’ve been alive I’ve gone to enough appointments to know that at some point in my life I’ll most likely grow out of it and won’t need it but I’m not exactly sure if they could remove it again I’m not a doctor so I’m not 100% sure and also this only based on what my doctors have told me based on my case so it could be different for others!
@@ciearrafuller5605 I wouldn't risk it. I know mine is still needed but if it wasn't I would leave it there if it does not do harm. To completely remove it is a dangerous procedure. In my 37 years with shunts they only removed it when replacing another shunt and then it was still only done when safe. If you have had many replacements its one thing but if a shunt has been there for many years its likely that its has been entangled into the tissue around the brain. I still have an extra piece from an old shunt that broke off in my head. To remove it was to dangerous so they left the extra piece there and it has done no harm in the last 30 years. Its only visible on MRI or CT Scan. I am no doctor but that is according to my experience.
Can I ask you a question? Hopefully you guys can answer. Why are doctors not doing this before worsening hemorrhage? Or should they do this before an Ommaya or after?
My Great Grandaughter has this since she was bought 2 yrs old. She’s bout 5 now. But after several surgeries and many brain scans she is doing very good. Her name is Parker. Pray for her continued success! Thanks! I Love ❤her sooo much!
@@cindybarrett4507 i will pray for prker!!
I know what this girl is going through because I to have hydrocephalus. My parents had a shunt installed in my head which is constantly draining fluid. Without a shunt I would have probably died.
❤️
Does hydrocephalus give you the sensation of having water or liquid in your head?
I have heard that hydrocephalus cant be cured and patient uses epilepsy medication whole life. Is it true?
Hydrocephalus can only be "cured" with surgery.
I had hydrocephalus
Only HALF of this is true. I am 15 years old with Hydrocephalus. Yes, it is not curable, as in some cases it is a birth defect (for me it was, since I am 26 weeks premature), but in patient’s like Macey’s case, it doesn’t have to be a birth defect like it was for me.
If you have Hydrocephalus, it is likely that you will need a shunt revision (surgery) to fix your shunt if something isn’t working right. You do not need medications for hydrocephalus on a daily basis.
No that’s not true.... my daughter has it and she’s 14 year old and lived a normal life.
Sadly and unfortunately hydrocephalus can't be cured, but managed by surgery. As far as epilepsy medication. Usually you will be on it for the rest of your life, but everyone is different. I have been on my epilepsy medication ever since I got my shunt placement. I had several seizures six months after surgery and had to be put on medication.
I have it and I am 5 year older i can't believe that
That sucks.. life can be horrible
@@yourallbrainwashed Hihi I was born in 1983 with hydrocephalus in 38 years I had 43 operations but from 2010 if been blessed to have no operations so far and in 38 years I had a normal live with a son of 10years old.Blessings to you.
I am about 80% blind from high CSF. Mine came on fast in about three months when I was 11, in 2009. I have a shunt now, and am wondering if my pressure is going up again. :/
I also live in TX, and would love to connect!
Hi
MAID MARION NOTTINGHAM
Hydrocephalus is supposed to give you seizures I've had hydrocephalus my whole life and have never had a seizure once
miracles happen
Who came here bc they have the same thing
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Macey be mine .... you are sooo beautiful !!! 😘😘😘