My Story: Living with Hydrocephalus?!
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- čas přidán 23. 08. 2024
- Join me at the very beginning of this exciting and, I hope, inspiring story, of a girl living with a brain tumour and Hydrocephalus for the past 13 years... Learn how she has overcome cognitive issues, short-term memory impairment and physical limitations to become successful in the career she is currently pursuing, travel the world and become an ultrarunner! You guessed it! That girl is me, and this is the very first time that I will be sharing the story, even with regards to those closest to me, so, jump in! We’ll have a brief intro chat, and I will be revealing what’s more to come on my channel :) Welcome, and I’m happy to be having you around!
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DISCLAIMER: All views and topics, described or discussed in this video, are the experiences and opinions of the author. They are NOT intended for medical, legal and/or health advice. Please consult with a licensed doctor, if you have any of the conditions, described in this video, or if you have any other illness or condition.
I’m an 19 year old male and I was diagnosed with hydrocephalus when I was 9 months old and I’ve had 18 brain surgeries . I have a shunt that was originally on the back right side of my head and then in ‘05 I had a surgery and they moved it to the left side . I have a tube that runs from the shunt down my neck and goes all the way to my bladder . I’ve always played sports and I’ve played tackle football for probably 5-6 years before I hit puberty and my body outgrew the tube in my body and it broke off and I had back to back surgeries after being fine for probably a decade . My symptoms when I’m having a malfunction consist of really bad migraines and excessive pressure on the eyes until I can’t look up anymore without them pulling apart . The last surgery I had , I had so much fluid built up that it formed a cist in my stomach and they had to cut me open and they had gotten 2 1 liter bottles full of fluid . That was a rare time where I wasn’t throwing up leading up to , but it got to the point where I was in a crazy amount of pain and crying over the migraine I had . I haven’t had any problems since for going on another 2 years and I wake up everyday and feel normal andI forget it’s there . I love getting to hear your story and knowing I’m not alone and I just thought I’d share mine too 🖤
Thank you so much for sharing! This is exactly why I am doing this, to hear from people like you and form a community, because it can get really lonely, when you are dealing with the pain and all the complications and noone really can relate! I am so happy you have been fine for the past 2 years, and I wish you to stay like that for a long, long time!
@@danielavladinova5213 thank you sm! If I never would’ve found you I would’ve never told my story . We got this
Thank you both so much, I am a 25 year old male who has been living with hydrocephalus since I was born. Mine was due to having another condition called spina bifida I have had multiple surgeries but I was too young to really remember much, I had one vp shunt malfunction but again I was really young and don't remember much, but anyway recently my tubing has been hurting from my neck to my chest, it's mild and not too concerning but I wanted to ask if you have had this issue?
@@AnthonyMartinez-js1pw hi is your brain function as normal
wow, great share. Brain stuff is hard, huh? I really think I have ptsd. nph really rocked me to the foundation of my soul. I am still stuggling with the mental side.
I am a 71, going on 72, year old very active female and very healthy; however, 😞 I was diagnosed with NPH last week, and am scheduled to see a neurologist,, to either conform or contradict it; hopefully, the latter. Thank you for sharing your story! I look forward to watching your entire story! 🥰
Did u get it was it worth it ???
I never leave comments, but just wanted to say thank you so much for sharing your experience with us. My 4 month old daughter was diagnosed in vitro and just got the VP shunt surgery. I’ve been looking for every information I can find, but like you said, there’s very little out there. This gives me hope that my daughter will be just fine and live a normal life. New subbie. 💕
I am so glad I could help! This is what I am doing it for! The journey might not be easy all the time, but it’ll be all fine and your daughter will grow up to have a wonderful, fulfilling life, and a beautiful family of her own, if that is what she wishes for :) she will be able to do amazing things! It may seem ironic, but I think this is one of the best things that has happened to me, as it made me so strong. Thank you for subscribing!
....my 4 month baby boy suffering with same problem ......4 july 2022 operate vp shunt....please pray for my son
I am a 56 yr old male born with Hydro, I know all cases are different but I graduated high school drive a car and work in a factory. if i could make one suggestion, dont put your daughter in a "plastic bubble" keep an eye on her but allow her to be a kid i was and now regret not having a childhood
@@ernestgoodman5514How are you and what you did for this? Any surgery or shunt.. Kindly help.
I had a vp shunt put in when i was 3 days old @@navodiita
I was 29 when it was discovered that I have hydrocephalus, they found it last October, when I went in for a ct scan. The scan was on a friday afternoon and after 3 calls from the doctor who looked over my scan i was told to come in to the emergency room immediately (the doctor on the phone said it was so severe that i could die, it was terrifying, i was at the park with my family getting my youngest ready for trick or treating) it is now july and im pretty sure I'm having problems but the first time through for me was so scary that I keep putting off calling the doctors office. I've been breaking out in tears everytime i think of having another surgery. (I dont want my kids to grow up without their mom)😔 Reading comments and listening to your story helps me atleast understand my memory problem currently going on among other things so thank you💛
Thank you so much for sharing your story! I feel like I can relate, mine was pretty bad before I had my surgeries also, and I was rushed for an emergency operation. I know it is scary, but that’s what saved my life, so, if you are experiencing any issues now, it might be worth to get it checked, despite the fear, because it can be truly lifesaving.
Before i watch your whole video ,i just wanted to let u know that you are not alone. I'm myself a patient of hydrocephalus from 19 years and i was diagnosed at 6 months had my first ever surgery at 8 months and in between 8 months till 19 years I've 5/6 surgeries vp shunt revision I'm happy to know that I'm not alone who is dealing this but in the other end sad too that it doesn't have any permanent cure
Thank you so much for sharing your story! You are incredibly brave, and, even though there is no cure yet, I hope you find something on my channel to help you find inspiration to live your life in the most enjoyable way possible, despite the diagnosis!
Thanks so much. I may have this . Getting diagnosed in the next few weeks. 69 years old and just had cataract surgery in both eyes
So vision no problem yet. Just problems with balance and movement . They first thought it could be Parkinson’s but symptoms haven’t progressed. This site will be great. ❤️🙏🏻
I hope everything is alright! Keep me posted about your diagnosis! If you have ANY questions, I am happy to help :)
Thank you Daniela. Today is my MRI day😉😀
Very encouraging speech.
I also have nph. I was diagnosed and had surgery one year ago. I am having serious mental repercussions, like short term memory loss. I had the surgery and was basically just left to make my own way. It was not pleasant, I have struggled with no information also. I joined a group on fb and they were great at first, then the admins got cocky and I left the group. I am now on a journey trying to restore my mental health. Which is also a hard road. I really believe I have some brain damage. But on the other hand, I have never been able to see clearer and understand my life. It is like I am living a whole new life. I have serious memory loss due to nph. That and my atrophied body I am starting fresh. At 70 years old. I can not wait to join u in your journey. Thank you.
Welcome! I am trying my best to keep this a safe space. And I get you. Short-term memory loss and mental health issues were a part of my recovery, too. It does get better with time, though, and it is, indeed, a whole new perspective on life. Being able to look back and be bold and start over! All the best and I hope you find the information here useful!
Thank you for sharing your story 😊
I hope it helped you in any way :)
It did. I felt encouraged and comforted when I heard it. It was just what I needed to hear. I'm glad you've been able to cross so many milestones. I'd like to run a marathon one day 🙂 I'll definitely come back for tips 😊
I was born with congenital hydrocephalus in September of 1988. I have had 6 shunt revisions in that time. My last surgery was July 1st 2010 10 days after my grandfather died from cancer.
You have already helped me a great deal just by posting this video - thank you so very much 👍 ❤
Author Roald Dahl developed the shunt that keeps myself and others in my position going along with him a medical student
Really? I did not know that! This is very interesting, how did they do this!?
I’m not entirely sure how but a family member who has this condition he took it upon himself to get permission to make this happen and would not be here with out this and it’s mad to think years before I knew massive fan of his books and films
I also have that shunt!
I have hydrocephalus as well five shunt surgeries
I feel for you and am so sorry for what you have been through... I have been there, as well, but it’s made me so much stronger and more resilient! Therefore, I choose to look at it as my superpower :)
You have exactly the same shunt as me due to being born with hydrocephalus my relatives also work for the nhs so they would know instantly what to look out for and luckily I have had my shunt revised twice and touch wood i won’t need another revision or replacement stay strong and keep fighting lovely 🙏🏻💪🤗
You, too! :)
@@danielavladinova5213 thank you very much appreciated I’m so grateful 😀🙏🏻
Your story is like mine 🙂 Just had a surgery 3 weeks ago and saw my doctor today for a review and I have slit ventricle syndrome now. There's not much information on it on the internet :(
Yes, indeed, I have spent soooo much time researching that... Thankfully, I keep on being symptom-free, even with regards to the slit ventricles...
Yep I had surgery oct 29 last yr cuz it was blocked n now I have SVS
Hi Daniela. How's everything going? I've just been diagnosed with hydrocephalus and I was looking for information and I came across your history. Very good to hear that at this moment. Thanks, ma'am.
Glad to know my channel helps, that’s why I am here for! Is there anything in particular you’d like to know?
@@danielavladinova5213 did you have any secondary condition? In my case I have been losing my vision cause the liquor damaged my both optical nerve.
@@danielavladinova5213 did you have any secondary condition? In my case I have been losing my vision cause the liquor damaged my both optical nerve.
Thank u for sharing ur story :) im from philippines and im 35 years old i had surgery last 2018 of january vp shunt just like u i also have hydocepalus
Thank you for sharing! I hope you are fine! :)
Hi, Athena gamers roblox. Can you DM me? Because my boyfriend will undergo VP shunt today and I need some information for those who have VP shunt. 😢
I am also from the Philippines. Pls send me a DM 😢
Yaaaay subed and liked! Thanks for sharing 🌹❤️ stay well and safe
Thanks! You too! 🙃
@@danielavladinova5213 I'm having a hydrocephalus scare these past weeks as I'm having all the malfunction symptoms..so i think I've watched and read all the articles because they are so little!
ruba zuheir be strong! My ultimate advice is go see your doctor, of course, but I really do feel for you, I have a slit ventricles syndrome and the information is just sooo insufficient... my symptoms video is going live soon, let’s spark a much needed discussion!
@@danielavladinova5213 yea i should go to the hospital but it's craaaaazy because of the the epidemic so I'm trying to hang on..my head hurts so much i don't wish that to my worst enemy..
I agree, and such bad times are so much more dramatic for people, who have any types of underlying conditions or chronic disease, like us! Please be safe and share your progress! When do you think you’d be able to see a Doctor?
I'm 22 years old and i was diagnosed with hydrocephalus when I was 10 years old and I've had 3 brain surgeries so far.
Thanks for sharing! How have you been doing?
I have Hydrocephalus I was diagnosed when I was 7 months old after having meningitis & I have a Shunt myself & I've had 6 operations altogether & I'm no 49 Yrs of age
Thanks for sharing! When was your last surgery?
@@danielavladinova5213 My last surgery was In September 2014 because I had an Infection In my Shunt & I had to have It drained but I've had 2 other operations since then 2015 & 2017 due to other complications with the Shunt
I'm a Hydrocephalus patients glad to ear your story it's just as mind but my question can a hydrocephalus patients gets pregnant
Yes, they can, I am currently 6 months pregnant :)
@@danielavladinova5213i pray i can
My brother has hydrocephalus .he did the surgery and he is 13 years old now .
I was wondering if a vp shunt malfunction happened ,how much time do we have to rescue him??
Thank you for your question! I hope your brother is fine. What symptoms did he have to cause him to get a VP shunt? If there is a malfunction, you’d know. His symptoms will worsen, and he might experience a severe headache, that does not go away from medication. You should definitely reach out to a Dr, if you notice anything weird, but, usually, you’d know in time, in order to be able to react. I hope this answers your question.
I was asking about the time ...
How much time do we have before the pressure kills him ?
PLASHET WARD LONDON
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I also have hydrocephalus! I am leaning towards having ETV surgery. I am so scared more so for my kids because I am all they have. I don’t know what to do. My scans say everything is stable but I can feel a difference. I have a hard time remembering words and events. My vision is worse and to even touch my head it’s painful. I get migraine so bad they make me vomit. I would like to know if anyone has had the etv aurgeey
Me mam I have many question mam I'm from cebu city my son was hydrocephalus and he is shunt and he is now for trequestomy is it have a chance to walk,talk and can see?
I'm 65 yrs old. Just been diagnosed with hydrocephalus
Waiting to see a neurosurgeon. My balance is terrible and I walk like a very old man. I was a vibrant fit guy up until now. This sucks !!
It does, believe me, I know, but life after treatment life goes on and it is a great feeling, just to be alive. You are strong and I hope you feel better after surgery!!! Keep me updated!
@@danielavladinova5213 thank you. I will!!
Thank you so much for your video. I was diagnosed with hydrocephalus secondary to aqua ductal stenosis. I am still wondering how it is decided between the Shunt and ETV op so dear Daniela, you will help me a great deal if you let me know if possible
My daughter have been diagnosed with hydrocephalus since birth and she is 5 months now and am struggling with the finances to do the surgery am from Ghana
I send my heart to your daughter 🙏
@@danielavladinova5213 Amen
Hi Daniela, thank you so much for sharing your story. You are inspiring! I was curious to know whether you have a programmable or fixed VP shunt (is it for example a Strata or Codman Hakim VP shunt)?
No need to answer this comment if you would prefer not to share this!
Hi, sorry for answering so late! That’s alright, my shunt is a fixed one, Hakim Cordis. I hope this helps!
I had a colloid cyst so they put a shunt in but last year they removed I dont need the shunt what are the dangers of having a shunt not needed?
I don’t think there are any issues if you do not need it. If you want to, you can reach out on Insta, as well, and dm me, so we can have a chat? If the shunt has served it’s purpose, it should be fine, though :) I am so happy you are OK and do not need it anymore!
Hi Daniela. My name is Zachary and I am from Canada. I am almost 33 years old and I was diagnosed with Hydrocephalus when I was 3 weeks old. I had to see a Neuro Surgeon to have Neuro Surgery when i was 1 month old. I had another surgery at a week old but it was Hernia Surgery. I had to have another Hernia Surgery when I was 11 months old.
For my first 11 years from 1990-2001 I was very sick. Dizzy and couldn't focus in school. In 2001 I got very sick and I was throwing up and couldn't walk properly so I had to have my 2nd Neuro Surgery due to the Shunt on the right side of my head not doing its job. I ended up back in the hospital not long after the surgery because my Shunt became blocked and my brain filled up with water and blood again. I had my last neuro Surgery then. But since 2018 I have been having seizures and the only way to control them is with medication. Since 2022 we have have been unsure about my Shunt still doing its job. I hope you are doing well now.
Thank you so much for sharing your journey! So, do you think you might need another revision? How does that work in Canada, do you have to be referred to a Neurosurgeon again? I hope that you get better! I know that in some cases, patients with Hydrocephalus can develop epilepsy-like symptoms (like seizures), is that your case? I hope you feel better and that you find the information over here useful :)
I have a baby 2 with it but its hard
I WAS BORN WITH CONGENITAL HYDROCEPHALUS I HAD ONLY 1 SURGERY WHEN I WAS AN INFANT NOW AT 54YRS OLD THE CSF IS MASSIVE & & MY DR. SUGGESTED THAT I DON'T GET THE SURGERY ITMY HEADACHE MIGHT GET WORSE & SHUNT MAY CAUSE OTHER ISSUES BUT SUFFERING WITH BAD HEADACHES & BLURRE VISION
Hello, thanks for reaching out! I am so sorry you are suffering and have symptoms right now, what is the reasoning behind not getting a shunt? When you were a kid and you had the surgery, didn’t they put in any type of shunt device? When did you start getting symptoms? Can you not try and get a second opinion? I hope you feel better soon!
@@danielavladinova5213 I only had one surgery when I was a infant. I didn't have any other surgery after that. Years later I started to have these headaches and I totally forgot about hydrocephalus that I had so they did a MRI that shows I have massive fluid as I mentioned the first time the doctor does not want to perform any surgery because he is afraid that the headache can get worse and having a shunt may cause infections and other issues today I went to go see a neurologist and she told me was that the neurosurgeon told her the same thing. The neurologist gave me a shot to release the inflammation in the vertical in the brain that is causing pressure if that makes sense then the neurologist wants me to go back to the neurosurgeon but it's a waste of time for me to go because he's going to say the same thing so she said that she will send me to another specialist if nothing is going to be done. Thank you for responding to my comment 🥺
@@MSD.4543 Thank you so much! I will be keeping my fingers crossed that all goes well and you get relief for your headaches! Keep me posted if any progress :)
B
I also have hydrocephalus along with Brain & spine tb. I didn't had surgery my doctor is giving me tablets. But i have heard that shunt is required. Is it possible to cure hydrocephalus without surgery?
Hello, thank you for your comment! As far as I am aware, there is no way to actually cure Hydrocephalus. Even a shunt does not “cure” it, it sustains it, which means I am dependent on the shunt and I cannot function without it. I have not heard before of treating hydro with meds, can you please share what tablets you are taking? Maybe you have some other condition, which is very well treated with meds, but stops your doctors from performing surgery?
@@danielavladinova5213 can i have ur insta id? I really want ur suggestion
Yes, sure, it is @danirunsgreen
@@danielavladinova5213 I've sent msg. Pls reply when u will have it. It will be really helpful for me.
How are you now? Can I DM you?
My mother have hydrocephalus due to tumor and dr said removal of tumor at first time is risk and it may cause another stuff like stroke and now the solution to reduce headache is placing vp shunt, the surgery is not going and date is not planned now she is in nicu
After this surgery what shall we do for removing tumor
Hello, thanks for reaching out! I am sorry for your Mum, and I hope she gets better soon. Regarding the tumor, it really depends I guess… in my case, it is still there, and the doctors monitor it, but it hasn’t grown in 16 years, so they left it there, as it will be very risky to remove it, as with your Mum. If it isn’t growing, then maybe they will keep watching it, but not touch it? It is up to the Dr in the end, but I hope your Mum gets better after the shunt placement. You can reach out on IG and let me know how she’s doing. Good luck!
If anyone wants to remove a tumor . MAKE SURE THEY SPECIALIZE in that tumor .
I would seek alternative treatment, not surgery off the back … like steroids, radiation therapy etc
I am 34 year's old man from India. And I have shunt in my body from June 1997.
Thanks for sharing! How have you been?
@@danielavladinova5213 I am good & have Shunt in body from last 26 year's.
Aapne India me kaha par krayi thi apni surgery
In Nasik, Maharashtra tab 9 year's ka tha me.
@@harshaljoshi4864 okay konsa shunt h apka
My Father's Age is 42 He Got Hydrocephalus After a Minor Stroke 3-4 Years Before But He Didn't treated This Disease. Now Doctor told him He have to do a Emergency Surgery. I Want to Know Is It High Risk Surgery? And Is it Cause Death Risk? I have heard that there will be so many complications after Surgery. Will he able to get back his normal life? Because our hole family depending on him! And also we are living in 3rd world country our financial status not very good. How much that will cost?
Thank you for reaching out! The cost of the surgery really depends on where you are living and what king of health insurance you have. Where I come from, this type of surgery is typically covered by the health insurance, BUT, the shunt itself is not. In my particular case, 15 years ago, it cost about 3000 USD.
Now, with regards to complications, there is a probability that there will be some, but, generally, if the person is in hood general health, they should be able to go back to a relatively normal schedule after about a month of surgery. There will be some limitations, for example, they wouldn’t be able to do physical work, but anything else should be fine. Please, keep me posted and let me know if you have any other questions :)
Hey Mam My wife effect by Megnitis Brain TB.. more Sick so Suddenly EVD and VP Shunt Synergy Done.. Now Alright ..she is fine Thank God !!
Future after 2 year Baby Planning is good as per doctor advice...
Vp Shunt any problems
I'm Fear always... I need Words .. Mam Can you Reply Me
Hello, thanks for reaching out! You can reach out on Insta, as well, so we can chat if you want to, I will be more than happy to help! I am glad your wife is fine, I have been living with my shunt for 15 years now, and no problem, thank God!
ACDC
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Hi do you can run and jump. After shunt i cannot do either
Hello, yes, I can! I have been running marathons and even ultra-marathons for the past seven years and I have had no issue. I run every single day, it helps me destress and get my mind away from things, however, before engaging in any such activity, please, consult your doctor!
I am 25 years women with VP shunt can I get married.
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Hi your brain function fully as normal? please reply me
Hello, thanks for reaching out! Yea, my brain functions well, I am fully functional, have a great job, a family and a baby :) I sometimes feel extra tired, have headaches, my vision goes blurry for no reason, and have the occasional fall, a brain fog and difficult concentration, but I really consider those issues minor, compared to how blessed I am :) does this answer your question? :)
@@danielavladinova5213 thanks for reply.
@@danielavladinova5213 hydrocephalus can cause brain injury?
Yes, if untreated, it can.
@@danielavladinova5213 I had cyst caused hydrocephalus I had emergency brain surgery I had severe symptoms hospital misdiagnosed me. Its been 2.half years now my brain is not working as normal how was before. I have so many issues please advise me some things
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