I also have a VP shunt and not many people know of people who have VP shunts but you inspire me because I don't know anyone who have VP shunts so keep fighting
I'm 38 and have a vp shunt and spinal bifida. After my last revision last year I have been getting those headaches everyday which I don't remember ever experiencing as a kid
Bless your heart, I'm 56 years old and got my first shunt back in 2005 . At this point I've had 40 revisions . It sucks but it keeps me going. Take care of yourself . My hope for you is you have a good support systems. This does get old really quick.seems no one understands what we go through.
thanks for sharing your story - i have had 1 shunt for 20yrs so i count myself lucky but deal with similar side effects - still glad to be alive and appreciate your positivity
Hi - My name is Kimi and I'm 27. And I've had over 40 revisions and over 35 of them have been in the past 13 years. I've also had an endoscopic third ventriculostomy and I had a stroke during that surgery. I now have chronic pain in my head because of how many times I've had meningitis and my brain tissue is just really irritated and every surgery I have it's just going to keep getting worse. So yes you said it count your blessings! Thanks! Bye!
Hi Kimi!! wow!! you know its funny...you always think you have it bad until you hear someone elses story! You are a true survivor!! Thank you so much for sharing your story! Its always so amazing to connect with other hydroheads.
My daughter is having this vp shunt since she was 5 months old got infected after 2 months when she was 8...ang now she is 5 and suffering sometimes for headache..and vommitting..still have regular check up with her neurologist thanks for this vid....but hoping thers a way not to suffer this I hope my little girl will survive...bec..shes a very charm and smart girl....like you....Godbless to all survivor of hydrocephalus. ...
no! I have ridden roller coasters with no issue! Im guessing it could be because of the pressure on your head or something?? I don't ride wood roller coasters because they jostle my neck around so much and it makes me nervous that it could do something to my tubing...but im sure thats just me being paranoid! @C Carr
Hi I can relate to what you are saying I had to have a shunt put in at 3 months old I have a VP shunt my self so I understand exactly what its like all tho back in 2008 I had to have another surgery because my shunt stopped working that I had for 13 years& I could have passed away. But thankfully its almost been 7 year's since I had a New shunt put in come January 23 2015 I was very honored to have my surgeon that I did if you would like to ask any questions feel free thanks
Ashley Marie Kelly I am facing a VP shunt surgery in 10 days. Of course I am scared. Would love to learn more about your experiences w the surgery. Andrea35244@gmail.com
Hi Jo. You did a really great job in your video explaining hydrocephalus, its nuances and life with a shunt. Thank you for your post and for linking to the Hydrocephalus Walk to promote research.
I got my first shunt at age 16 (1978), and after several revisions, my last one was installed in December 1998. No ADA accommodation, and working full time. I thankfully have a very supportive (or tolerant) wife.
I really appreciate you sharing your experiences with the shunt since that is what I'll probably end up with too. I'm 62 years old and recently diagnosed with Hydrocephalus. I thought I might have Alzheimer's disease until receiving a brain MRI which revealed what it actually was. Hydrocephalus though not the news I was hoping for is a lot better than having Alzheimer's disease. I didn't have headaches, blurred vision, difficulty walking, or incontinence which I understand are common Hydrocephalus symptoms, just gradually worsening short term memory which I already had to some degree for most of my life due to my struggles with A.D.D. My Doctor suggested I wait to do a spinal puncture until after I start having some of the annoying symptoms mentioned above. I had read various comments about driving a car with the shunt with varying opinions and was glad to hear that you are able to drive with your shunt. Can you also take airline flights? Can you go snorkeling in the ocean or swimming in a pool? I'm trying to prepare myself for life following my future shunt surgery.
Thanks for this. I actually have pseudo tumor cerebri and just got a shunt 9/26/22. I go tomorrow because my stomach incision is super swollen kind of looks like a hernia.
I have a shut also my kind of hydrocephalus is acquired meaning I wasn’t born with it it developed at three months mines came from a blockage fatty limfoma over the left eye I had eye correction back in 2003 as a child I’m blessed insha Allah I haven’t had a problem since I’m 28 but I’m up on it I know all about it and I’m plan on finding A cure for it my head isn’t that big I just have a big for head which adds on to it as big for heads run in my family but I’m going to go for my next appointment soon
did you get those documents back? I'm legit so proud of you!!!! wow... great job (: wow I have no clue where u live. but my Dr was in Detroit too haha.... I live in macomb township now.
Hi Sam! I am great! I have been married for 4 years and my neurosurgeon said there is a likelihood that I outgrew my hydrocephalus. How are you doing!?
I would like to contact you directly I myself have hydrocephalus and it has been rough for me. O just need someone to reach out to who knows what I am going threw. Please message back
My brother has a vp shunt but he also had heart surgery due to some other complications which affected his ability to think, talk, walk and process everything like other normal people. So he can’t tell that well how it feels to have vp shunt. I want to ask anyone/everyone with vp shunt surgery to share with me any lifestyle related issues that occur due to vp shunt. For example, as you said you can hear it dripping. This type of information will be greatly appreciated. I just want to know what my brother is going through and help him.
Sorry if this is a late answer, I hope it can be of any help. I've had a vp shunt since birth so I can answer some of your questions. When you've had the shunt a couple of years the body has had enough time to adapt to it so you don't feel it as much as when it was first in place. Most of the issues are related to how the body reacts to the shunt. It may restrict some of your movements depending on how new the shunt is since the neck muscles tighten up easily because of it. I've started working out sitting down since this creates less stress on the neck muscles. It is easy to have muscle aches in the areas surrounding the shunt such as the upper back muscles, neck muscles or in some cases abdominal muscles. You can feel it dripping sometimes, similar to the feeling when you feel your blood going through your body, but I'm yet to notice any dripping sound. If the skin around the shunt is thin then some movements might be frightening for him since it is possible to feel the catheter move. Other than that, no huge lifestyle related issues. The psychological part of knowing that you have a shunt looks different for everyone. It can be scary for some and some do not think about it much in their every day life.
My son at birth got a meningitis and as result he needs a dvp, they change it 3 times and he is now 3 years old. I'm looking for people for advice, i really don't know about the subject. Every time he falls i'm so scar.
I get pain in my abdomen right below my chest and also behind my ear. I did se research and found that sometimes your tubing can get caught on scar tissue and it pulls on the tubing causing pain. I'm not sure of that's what your experiencing though. I'm sorry they took away your license! Such a shame!
I recently had a brain scan to check if the blood in my Dura has increased , it hasnt, ok. they X-Rayd my whole shunt and the doctor said it perfect and that the pain is from something else, so happy about my Shunt.
I can! It's a really high pitch beep and the pressure feels like when you dive underwater too deep. Lasts anywhere from a few seconds to a few minutes. It's not fun! Apparently it's pretty uncommon to be able to hear it
yea ive never heard of anyone who could hear it, thats kinda weird but eh at least you know its working. i had a bit of a scare the other day, thought i was having a malfunction cause i was having such a bad headache, i mistook it for a shunt headache( i call it that too), also had almost all of the symptoms but thankfully it wasnt a malfunction.. so yay!
No! The reason for throwing up is becuse your CF fluid doesnt have any place to go so you start throwing it up. Once the shunt is put it place and is working I wouldn't think you continue to throw up. At least I didn't.
Ilsa Hennecart I have no idea :/ Its been more than 10 years since ive had a surgery and don't remember....however, I would make sure your friend speaks to their doctor/neurosurgeon to make sure everything is okay.
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I've had a VP shunt since I was 17 and I'm now 52 yrs old !haven't had any problems! I'm so blessed that I've had no problems.
I just had a shunt put in at age 17 im now trying to figure out what i should exect
I also have a VP shunt and not many people know of people who have VP shunts but you inspire me because I don't know anyone who have VP shunts so keep fighting
I'm 38 and have a vp shunt and spinal bifida. After my last revision last year I have been getting those headaches everyday which I don't remember ever experiencing as a kid
Bless your heart, I'm 56 years old and got my first shunt back in 2005 . At this point I've had 40 revisions . It sucks but it keeps me going. Take care of yourself . My hope for you is you have a good support systems. This does get old really quick.seems no one understands what we go through.
thanks for sharing your story - i have had 1 shunt for 20yrs so i count myself lucky but deal with similar side effects - still glad to be alive and appreciate your positivity
Amen! Count our blessings! Absolutely!
I have a vp shunt I am living my life normally and am so happy for my life!
Hi -
My name is Kimi and I'm 27. And I've had over 40 revisions and over 35 of them have been in the past 13 years. I've also had an endoscopic third ventriculostomy and I had a stroke during that surgery. I now have chronic pain in my head because of how many times I've had meningitis and my brain tissue is just really irritated and every surgery I have it's just going to keep getting worse. So yes you said it count your blessings! Thanks! Bye!
Hi Kimi!! wow!! you know its funny...you always think you have it bad until you hear someone elses story! You are a true survivor!! Thank you so much for sharing your story! Its always so amazing to connect with other hydroheads.
I understand what you are going through. I also have a vp shunt and have had since birth. My last revsion was 7/1/2010.
My daughter is having this vp shunt since she was 5 months old got infected after 2 months when she was 8...ang now she is 5 and suffering sometimes for headache..and vommitting..still have regular check up with her neurologist thanks for this vid....but hoping thers a way not to suffer this I hope my little girl will survive...bec..shes a very charm and smart girl....like you....Godbless to all survivor of hydrocephalus. ...
no! I have ridden roller coasters with no issue! Im guessing it could be because of the pressure on your head or something?? I don't ride wood roller coasters because they jostle my neck around so much and it makes me nervous that it could do something to my tubing...but im sure thats just me being paranoid! @C Carr
Hi I can relate to what you are saying I had to have a shunt put in at 3 months old I have a VP shunt my self so I understand exactly what its like all tho back in 2008 I had to have another surgery because my shunt stopped working that I had for 13 years& I could have passed away. But thankfully its almost been 7 year's since I had a New shunt put in come January 23 2015 I was very honored to have my surgeon that I did if you would like to ask any questions feel free thanks
Ashley Marie Kelly
I am facing a VP shunt surgery in 10 days. Of course I am scared. Would love to learn more about your experiences w the surgery.
Andrea35244@gmail.com
Hi Jo. You did a really great job in your video explaining hydrocephalus, its nuances and life with a shunt. Thank you for your post and for linking to the Hydrocephalus Walk to promote research.
David Micetic hi David! Thank you so much for the comment!
I got my first shunt at age 16 (1978), and after several revisions, my last one was installed in December 1998. No ADA accommodation, and working full time. I thankfully have a very supportive (or tolerant) wife.
I really appreciate you sharing your experiences with the shunt since that is what I'll probably end up with too. I'm 62 years old and recently diagnosed with Hydrocephalus. I thought I might have Alzheimer's disease until receiving a brain MRI which revealed what it actually was. Hydrocephalus though not the news I was hoping for is a lot better than having Alzheimer's disease.
I didn't have headaches, blurred vision, difficulty walking, or incontinence which I understand are common Hydrocephalus symptoms, just gradually worsening short term memory which I already had to some degree for most of my life due to my struggles with A.D.D. My Doctor suggested I wait to do a spinal puncture until after I start having some of the annoying symptoms mentioned above.
I had read various comments about driving a car with the shunt with varying opinions and was glad to hear that you are able to drive with your shunt. Can you also take airline flights? Can you go snorkeling in the ocean or swimming in a pool? I'm trying to prepare myself for life following my future shunt surgery.
Thanks for this. I actually have pseudo tumor cerebri and just got a shunt 9/26/22. I go tomorrow because my stomach incision is super swollen kind of looks like a hernia.
I have a shut also my kind of hydrocephalus is acquired meaning I wasn’t born with it it developed at three months mines came from a blockage fatty limfoma over the left eye I had eye correction back in 2003 as a child I’m blessed insha Allah I haven’t had a problem since I’m 28 but I’m up on it I know all about it and I’m plan on finding A cure for it my head isn’t that big I just have a big for head which adds on to it as big for heads run in my family but I’m going to go for my next appointment soon
I have one to.
i have a vp shunt as well
I have a vp shunt too
hi my wife has a vp shunt in place and she has very bad headaches shes 57 now
did you get those documents back? I'm legit so proud of you!!!! wow... great job (: wow I have no clue where u live. but my Dr was in Detroit too haha.... I live in macomb township now.
Kevin Krash thank you! I'm so sorry I just saw your comment :(. I use to live in NW ohio
Kevin Krash Who is your doctor? I'm from Detroit!
I have a wheelchair too
I have a vp shunt I just had 3 brain surgeries in the span of 2 months
I love my shunt and he is called shuntamabob
lol thats good! I don't have a name for mine, I just refer to myself as a hydrohead!
i have iih so its the same but not. wish i had a cool name xx
hii JO how are you now?? hope you doin' great 💖💖💖
Hi Sam! I am great! I have been married for 4 years and my neurosurgeon said there is a likelihood that I outgrew my hydrocephalus. How are you doing!?
I will be your friend
I would like to contact you directly I myself have hydrocephalus and it has been rough for me. O just need someone to reach out to who knows what I am going threw. Please message back
My brother has a vp shunt but he also had heart surgery due to some other complications which affected his ability to think, talk, walk and process everything like other normal people. So he can’t tell that well how it feels to have vp shunt. I want to ask anyone/everyone with vp shunt surgery to share with me any lifestyle related issues that occur due to vp shunt. For example, as you said you can hear it dripping. This type of information will be greatly appreciated. I just want to know what my brother is going through and help him.
Sorry if this is a late answer, I hope it can be of any help. I've had a vp shunt since birth so I can answer some of your questions. When you've had the shunt a couple of years the body has had enough time to adapt to it so you don't feel it as much as when it was first in place. Most of the issues are related to how the body reacts to the shunt. It may restrict some of your movements depending on how new the shunt is since the neck muscles tighten up easily because of it. I've started working out sitting down since this creates less stress on the neck muscles. It is easy to have muscle aches in the areas surrounding the shunt such as the upper back muscles, neck muscles or in some cases abdominal muscles. You can feel it dripping sometimes, similar to the feeling when you feel your blood going through your body, but I'm yet to notice any dripping sound. If the skin around the shunt is thin then some movements might be frightening for him since it is possible to feel the catheter move. Other than that, no huge lifestyle related issues. The psychological part of knowing that you have a shunt looks different for everyone. It can be scary for some and some do not think about it much in their every day life.
Thank you so much for replying to my comment and explaining so thoroughly how it feels to have vp shunt@@hektorwallstrom2062
How many people who have a great time to get a good time.
My son at birth got a meningitis and as result he needs a dvp, they change it 3 times and he is now 3 years old. I'm looking for people for advice, i really don't know about the subject. Every time he falls i'm so scar.
Hi Fabian, as far as not knowing much, the best thing you can do is research! You can never know too much about a condition that effects your son!
My life with a VP Shunt started in june 2014 so I`m always interested in info about the pain I get in my lower stomach and forearm (at the same time)
I get pain in my abdomen right below my chest and also behind my ear. I did se research and found that sometimes your tubing can get caught on scar tissue and it pulls on the tubing causing pain. I'm not sure of that's what your experiencing though. I'm sorry they took away your license! Such a shame!
had it xray`d they said my vp shunt is perfect and that the pain maybe due to something else, they are going to write to my doctor
thats great news that the shunt is good!! Always a good thing to hear! Im sorry to hear that you're still suffering :/.
I recently had a brain scan to check if the blood in my Dura has increased , it hasnt, ok. they X-Rayd my whole shunt and the doctor said it perfect and that the pain is from something else, so happy about my Shunt.
How is ur ete sight after shunt sugery i lost my vision field
I just got my vp shunt last week and I noticed I have been a little dizzy....any ideas what this could be??
I am in now way a doctor...but it could be your body just getting use to the shunt? If your dizzy you should call your neurosurgeon immediately.
How is ur eye sight after vp shunt surgery how is ur life style and what do you do.i have xision loss.optic attrophy which affects life
Rahmat Ullah my eye sight is okay. I had to get glasses about 4 years ago!
Hi I just heard u say that u can hear ur shunt working sometimes what is the sound like 🙂
Tristan Dennehy it is a really high pitched beep lasting the entire time my shunt drains!
When my Shunt was located behind my right ear as a child, and when pressed it sounded like the " Pillsbury Doughboy " when you poked his stomach.
u can hear it?
I can! It's a really high pitch beep and the pressure feels like when you dive underwater too deep. Lasts anywhere from a few seconds to a few minutes. It's not fun! Apparently it's pretty uncommon to be able to hear it
yea ive never heard of anyone who could hear it, thats kinda weird but eh at least you know its working. i had a bit of a scare the other day, thought i was having a malfunction cause i was having such a bad headache, i mistook it for a shunt headache( i call it that too), also had almost all of the symptoms but thankfully it wasnt a malfunction.. so yay!
+Alyx Wish yea I can scares like that :( it's hard not to be paranoid! I'm glad your okay though
Thanks, it nice to finally meet someone who understands, seeing as I've never met someone who has hydrocephalus
+Alyx Wish that's why I wanted to put this video up! It's pretty cool to connect with other hydro heads!!
oh then the DVLC UK took away my driving license!
Did you throw up alot after getting the shunt?
No! The reason for throwing up is becuse your CF fluid doesnt have any place to go so you start throwing it up. Once the shunt is put it place and is working I wouldn't think you continue to throw up. At least I didn't.
littleJo oh ok! So you experienced no nausea? It's someone whom I know who has 2 shunts but feels really nauseas after eating at times.
Ilsa Hennecart I have no idea :/ Its been more than 10 years since ive had a surgery and don't remember....however, I would make sure your friend speaks to their doctor/neurosurgeon to make sure everything is okay.
I have a vp shunt too