Lemme tell you my story of having a shunt... I've had the shunt place in my head back in 1992.. at the age 9 months... My mom told me my head was the size of a basketball. Supposedly I was the second patience who had this happen. The first was some famous baseball player for what I know. So it was like 1 million dollar surgery yet it wasn't very known so it was like "lets try this and see if it works", (Kinda like 50/50) so it was another test run so no medical bill was made. Lucky for me the doctor who has done the surgery before was in the hospital educating new doctors/nurses. I'm now age 31 (so yes i've had the shunt for 31 years and still have it.) They told me by the age 11. I would no longer need it, but I decided to keep it in for safe purpose and not have to open my head again to take it out cause it doesn't bother me (sometimes I totally forget its even there). They doctor have said there was going to be one or the other of two side effects, it'll effect your "speech"> meaning having problems pronouncing words or 2> having trouble with "movement"> and as growing up through grade school(Ele/mid/high school) I was doing track, dancing, street hockey. so my movement wasnt the problem, It effect my speech. I do have a hard time pronouncing words. but the more I practice It got better. I cant swim deep underwater cause the pressure on the head it feels like its being squish: cause dont forget your skull isnt whole >theres a crack. that had to be open to place the shunt. You cant do any heavy sports that can injure the head like football, boxing, or wrestling. that's all I know from my experience growing up with having a shunt.
Thank you very much for sharing! I’m glad to hear that you are doing OK after having the shunt for 31 years. The 16 anniversary of my shunt is this year and I cannot lie, I’m feeling anxious sometimes, that I might need a revision, so, thank you for letting me know! And wow, your journey as a baby has been an amazing one! I can only imagine what your parents went through! I wish you all the best and hope that you find the information here useful! :)
I had 2 lp shunts for 40 years. They both lasted 20 years each. The last one broke open near the spine while the other side tore a hole in my intestines. When they were repairing the hole, they took out both old shunts. The first one was left in place when the second one was inserted. I was 19yrs old when I got my first one. 39 yrs old for the second one. When the second failed, I had an external shunt placed in my head to see how much fluid I would produce. In 46 hours, I produced 2 liters of extra fluid. I was 60 at that time. The first two shunts were both free flow. The new one, is programmable. Out of 5 levels, I am on 3. This one flows from my brain to the right ventricle heart chamber. I had 3 kids during the first one and did go scuba diving as well. I still have pressure problems but not as bad. During the second shunt, at one point it did drain too much and ended up with surgery to prevent my brain from herniating down my spine. A donor heart sack was put under my brain to lift it back into place.
The VP shunt is the only thing keeping me alive on a daily basis..I was diagnosed with congenital hydrocephalus in September 1988..I have had 6 surgeries in my nearly 36 years of life. My last surgery was July 1st 2010.
I am 48. Diagnosed last year with LOVA HYDROCEPHALUS. I had a failed ETV last April. I had serious complications too. I was in hospital 2 weeks including hdu for salt wasting syndrome. In sept I had a VP shunt fitted
I have one got it when i was 18. Your pretty spot on with your answers. Your pretty lucky but. I had 3 revisions in 18 months but since then haven't had one for 17 yrs
My husband was diagnosed with communicating hydrocephalus and he is 48years of he had his vp shunt surgery march 16th 2024 and he has been doing well but somtimes he feelings headache and fever treat him of malaria and he is fine
Thanks for the video. You are truly inspiration. Which shunt you had fixed or Programmable. My sister has just undergone this shunt surgery, we had no idea about it, I am motivating her by showing your videos,she is just 25 years old. Infact we are not able to accept whatever happened, everything happened very suddenly. We need some prayers & courage to face all this. Pls God give Good health & happiness to my Sister. Well thank you so much for your videos. It gives us a ray of hope & lots of motivation. ❤❤
Hello, and thanks for reaching out! I got a fixed shunt, and it’s been just fine for the past 16 years! I wish your sister a fast recovery and a happy, wholesome life! It is, indeed, possible, and she will soon be able to carry on with all the activities she enjoys! :)
@@shivikaa__how's ur sister now can u please share some information about her vp shunt life bcuz i'm also going for vp shunt surgery very soon.. I m nervous and fear about this.. Could please talk to me😢😢
Hello, first time seeing your video. And it helps along. not sure when this video of released, not sure that my question will be answered, I have a VP shunt got it placed in 92 at the ago of 2. Now 33. I was told that I could not get tattoos. And if I were to get them I’d need to be on antibiotics for 12 months. First 6 months get the tat and the next 6 months after. I know it’s a lot to read. But I’d like to find out.
Hello, thanks for sharing! I have a lot of tattoos (like, A LOT) and I’ve never had any issues with them, I’ve never been told that I need to take antibiotics before or after getting one. I can’t see how it’s related to my VP shunt. Did the doctors explain why?
I was born 1998 VP shunt same as me is love to video call someone who can relate ive been preg i can relate to that too ive had mine in 25yrs this year signs a problems but doctors dont take me seriously.
I got my shunt three weeks ago at the age of 64. I still get nauseated, headaches, and sharp pain in the stomach. I have seen my neurologist and primary doctor and I have also been in the emergency room because I was vomiting profusely. Nobody can see why this is happening. I have had x-rays and CAT scans. Sometimes it is debilitating and other times I don’t feel the problem at all. I hope I don’t have to live with this for a long time. I’m a very active person and this has slowed me way down.
Hy can you plz help me.. My sister is having this.. She have hydrocephalus when she was born after four surgeries she is living her normal life.. She is 18years now.. From one week we are noticing her eyes are going like at the corner.. Not all the time.. Some time when she focus.. Is that something to worried.. Plz guide me.. She is having shun in her brain to... It's been almost 18year. It's everything okay.. Shun is working properly..? I am bit confused does it means VP shun is not working properly... ?
Hi, thanks for reaching out! Different eye position can sometimes happen in Hydrocephalus, I have another whole video on that, you can find it in the description below. Sometimes, this might be an indication of increased cranial pressure, so I would advise you seek medical advise asap. You can also reach out and DM me on Instagram, where I can provide more info. Please, keep me updated and let me know if all is good :) I wish your sister health and for this symptom to be nothing to worry about :)
Can I have your number.. My sister is going to have her surgery after two hours. I live in Pakistan.. She was having severe pain in her head yesterday we take her to the hospital doctor said for CT scan. The report were not good ... She is in worst head pain..
Can I have your number.. My sister is going to have her surgery after two hours. I live in Pakistan.. She was having severe pain in her head yesterday we take her to the hospital doctor said for CT scan. The report were not good ... She is in worst head pain..
Hello I’m sorry i cant help but ask if your mother a social worker? & Resides in ohio ? Your story is exactly the same please forgive me if not… my daughter was a baby and is 4 now and i love that you made this video …can you please make one on when u hit the shunt and sign of malfunctions
Hi :) Thanks for reaching out! No, not really, she is here, in Bulgaria. Wow, there is a person in Ohio with the same story? I would be so trilled to meet them! I will definitely make a video about shunts and malfunctions. I hope you and your daughter are fine :)
Mam ...VP shunt always fix with the patient their hole life......Or it can put out after sometime or years........how can she survive with vpshunt in normal life....plz reply
Lemme tell you my story of having a shunt... I've had the shunt place in my head back in 1992.. at the age 9 months... My mom told me my head was the size of a basketball. Supposedly I was the second patience who had this happen. The first was some famous baseball player for what I know. So it was like 1 million dollar surgery yet it wasn't very known so it was like "lets try this and see if it works", (Kinda like 50/50) so it was another test run so no medical bill was made.
Lucky for me the doctor who has done the surgery before was in the hospital educating new doctors/nurses. I'm now age 31 (so yes i've had the shunt for 31 years and still have it.) They told me by the age 11. I would no longer need it, but I decided to keep it in for safe purpose and not have to open my head again to take it out cause it doesn't bother me (sometimes I totally forget its even there). They doctor have said there was going to be one or the other of two side effects, it'll effect your "speech"> meaning having problems pronouncing words or 2> having trouble with "movement"> and as growing up through grade school(Ele/mid/high school) I was doing track, dancing, street hockey. so my movement wasnt the problem, It effect my speech. I do have a hard time pronouncing words. but the more I practice It got better.
I cant swim deep underwater cause the pressure on the head it feels like its being squish: cause dont forget your skull isnt whole >theres a crack. that had to be open to place the shunt.
You cant do any heavy sports that can injure the head like football, boxing, or wrestling.
that's all I know from my experience growing up with having a shunt.
You don't have any Shunt revision?
Thanks for sharing my 4 month old grandbaby has a shunt place next week. He was diagnosed with Spina Bifida.
Thank you very much for sharing! I’m glad to hear that you are doing OK after having the shunt for 31 years. The 16 anniversary of my shunt is this year and I cannot lie, I’m feeling anxious sometimes, that I might need a revision, so, thank you for letting me know! And wow, your journey as a baby has been an amazing one! I can only imagine what your parents went through! I wish you all the best and hope that you find the information here useful! :)
❤
I had 2 lp shunts for 40 years. They both lasted 20 years each. The last one broke open near the spine while the other side tore a hole in my intestines. When they were repairing the hole, they took out both old shunts. The first one was left in place when the second one was inserted. I was 19yrs old when I got my first one. 39 yrs old for the second one. When the second failed, I had an external shunt placed in my head to see how much fluid I would produce. In 46 hours, I produced 2 liters of extra fluid. I was 60 at that time. The first two shunts were both free flow. The new one, is programmable. Out of 5 levels, I am on 3. This one flows from my brain to the right ventricle heart chamber. I had 3 kids during the first one and did go scuba diving as well. I still have pressure problems but not as bad. During the second shunt, at one point it did drain too much and ended up with surgery to prevent my brain from herniating down my spine. A donor heart sack was put under my brain to lift it back into place.
Thank you for your story! So much information here! May I ask where are you from?
The VP shunt is the only thing keeping me alive on a daily basis..I was diagnosed with congenital hydrocephalus in September 1988..I have had 6 surgeries in my nearly 36 years of life. My last surgery was July 1st 2010.
What was your age when you were diagnosed with this
Thanks! My shunt is tomorrow,,,
Good luck 🙏🍀
i have had a VP SHUNT 40 years and counting, i have had both head and spinal shunt
Thanks for sharing! How have you been?
@@space.for.sharing I get shunt headache from time to time my last operation was 9/11
I am 48. Diagnosed last year with LOVA HYDROCEPHALUS. I had a failed ETV last April. I had serious complications too. I was in hospital 2 weeks including hdu for salt wasting syndrome. In sept I had a VP shunt fitted
Thank you very much Daniela.
You are welcome, dear!
I have one got it when i was 18. Your pretty spot on with your answers. Your pretty lucky but. I had 3 revisions in 18 months but since then haven't had one for 17 yrs
Thank you for sharing, and I am happy you found my answers useful! Yes, I consider myself lucky, and hope your revisions are in the past, for good!
@@space.for.sharing its always in the back of my mind but
Literally lol
My husband was diagnosed with communicating hydrocephalus and he is 48years of he had his vp shunt surgery march 16th 2024 and he has been doing well but somtimes he feelings headache and fever treat him of malaria and he is fine
Thanks for the video. You are truly inspiration. Which shunt you had fixed or Programmable. My sister has just undergone this shunt surgery, we had no idea about it,
I am motivating her by showing your videos,she is just 25 years old.
Infact we are not able to accept whatever happened, everything happened very suddenly. We need some prayers & courage to face all this. Pls God give Good health & happiness to my Sister. Well thank you so much for your videos. It gives us a ray of hope & lots of motivation. ❤❤
Hello, and thanks for reaching out! I got a fixed shunt, and it’s been just fine for the past 16 years! I wish your sister a fast recovery and a happy, wholesome life! It is, indeed, possible, and she will soon be able to carry on with all the activities she enjoys! :)
@@space.for.sharing Thank you dear for reply ♥️♥️ God bless you & your family 🙏
@@shivikaa__how's ur sister now can u please share some information about her vp shunt life bcuz i'm also going for vp shunt surgery very soon..
I m nervous and fear about this..
Could please talk to me😢😢
Hi I have dandy walker brain muformason I got my first shunt when I about 6 weeks old
Hi! How are you?
Hello, first time seeing your video. And it helps along. not sure when this video of released, not sure that my question will be answered, I have a VP shunt got it placed in 92 at the ago of 2. Now 33. I was told that I could not get tattoos. And if I were to get them I’d need to be on antibiotics for 12 months. First 6 months get the tat and the next 6 months after.
I know it’s a lot to read. But I’d like to find out.
Hello, thanks for sharing! I have a lot of tattoos (like, A LOT) and I’ve never had any issues with them, I’ve never been told that I need to take antibiotics before or after getting one. I can’t see how it’s related to my VP shunt. Did the doctors explain why?
I was born 1998 VP shunt same as me is love to video call someone who can relate ive been preg i can relate to that too ive had mine in 25yrs this year signs a problems but doctors dont take me seriously.
Sorry to hear you are experiencing issues! Have you asked for a second opinion?
I got my shunt three weeks ago at the age of 64. I still get nauseated, headaches, and sharp pain in the stomach. I have seen my neurologist and primary doctor and I have also been in the emergency room because I was vomiting profusely. Nobody can see why this is happening. I have had x-rays and CAT scans. Sometimes it is debilitating and other times I don’t feel the problem at all. I hope I don’t have to live with this for a long time. I’m a very active person and this has slowed me way down.
How do you feel now? My mom got a VP shunt 2 weeks ago and is experiencing the same. The doctor couldn't figure out what was going on..
I FEEL SEEN!!!
Can you please guide I will be really thank full to you stay happy and stay healthy... 🙂
Thanks for nicely informasion
Glad I could help :)
Can we remove the lp shunt ... And how long lp shunt with CSF Rhinorrhea leak repair surgery
Nice one
Hy can you plz help me.. My sister is having this.. She have hydrocephalus when she was born after four surgeries she is living her normal life.. She is 18years now.. From one week we are noticing her eyes are going like at the corner.. Not all the time.. Some time when she focus.. Is that something to worried.. Plz guide me.. She is having shun in her brain to... It's been almost 18year. It's everything okay.. Shun is working properly..? I am bit confused does it means VP shun is not working properly... ?
Hi, thanks for reaching out! Different eye position can sometimes happen in Hydrocephalus, I have another whole video on that, you can find it in the description below. Sometimes, this might be an indication of increased cranial pressure, so I would advise you seek medical advise asap. You can also reach out and DM me on Instagram, where I can provide more info. Please, keep me updated and let me know if all is good :) I wish your sister health and for this symptom to be nothing to worry about :)
Can I have your number.. My sister is going to have her surgery after two hours. I live in Pakistan.. She was having severe pain in her head yesterday we take her to the hospital doctor said for CT scan. The report were not good ... She is in worst head pain..
Can I have your number.. My sister is going to have her surgery after two hours. I live in Pakistan.. She was having severe pain in her head yesterday we take her to the hospital doctor said for CT scan. The report were not good ... She is in worst head pain..
Hello I’m sorry i cant help but ask if your mother a social worker? & Resides in ohio ? Your story is exactly the same please forgive me if not… my daughter was a baby and is 4 now and i love that you made this video …can you please make one on when u hit the shunt and sign of malfunctions
Hi :) Thanks for reaching out! No, not really, she is here, in Bulgaria. Wow, there is a person in Ohio with the same story? I would be so trilled to meet them! I will definitely make a video about shunts and malfunctions. I hope you and your daughter are fine :)
Mam ...VP shunt always fix with the patient their hole life......Or it can put out after sometime or years........how can she survive with vpshunt in normal life....plz reply
Is it normal for it? To longer in your neck
Yes, this is my type of shunt.
Is vp shunt removed?
No, it’s still very much present
Ok dear....i know very well because my new born baby suffering from hydrocephelus...after 6 surgery he is no more only 8 month😢😢😢
I am so sorry to hear this, and, as a new mum, I can only imagine what you’re going through! How are you doing! How’s your baby now?
@@space.for.sharing he is no more....
What für ein shunt do you have?
Thank you for the information. Can you please contact me. I am looking for some more information.
Hi, sorry for the delay. I would like to help, what kind of information do you need? You can reach me on IG.