Had mine put in since day before my 13th b-day an had a replacement at 15 do too fighting an getting in head lock.. ever since I been just living never a check up yet. I'm 41 now.. living with everything been a humble and beautiful experience... For those who struggle alone, keep your head up stay strong, keep fighting... What is normal...
I had a new CT scan this past Monday and have a follow up with my Neurosurgeon is on Wednesday the 26th of April at 830.. hoping for an end to this severe dizziness, nausea, occasional vomiting that's been going on for close to 3 years!!
I just had a programable shunt put in, in July. I hate it! I went to my Neurosurgeon on this past Wednesday (Aug, 23)to ask him and hoping to end the severe dizziness too and all he said was to come back in a month if it continues because they didn't want to say either way if it was overdraining or under draining at this point. All he would say is that, "your body is just getting used to the new normal." That doesn't help much, I have had a shunts since 11 days old in 1968, even back then they were better than these programable ones. I have NEVER had a worse recovery from a shunt surgery in my 55 year old history, I never experienced dizziness in the past with a shunt surgery recovery !!!
The fact that I/we have to deal with this at all is frustrating to me... I've never had any problems with my previous shunt... I had the same shunt for 22+ years; but then in June 2021 I had it taken out and completely replaced. Since then; I've had issues. From the jump; I have had one issue after another... Now I have an appointment with my neurosurgeon to get a programmable shunt to see if that makes a difference. I can't tolerate standing or even sitting upright for too long without getting a headache that feels like my brain is being pulled inward and it's affecting my balance, coordination and vision also. Being put on bedrest has only helped a little bit. I'm 29 years old and want to get back to the active lifestyle I had before.
I was diagnosed at 15 with aqua ductal stenosis which gave me hydrocephalus. I had my first brain surgery months after my 21st birthday and another just months after. My shunt malfunctioned at 23 and I went into emergency brain surgery. I had no idea what happened 3 days prior to waking up from my brain surgery. I don’t know much about living with delayed aqua ductal stenosis and hydrocephalus. Even my neurologist and neuro surgeon have told me they aren’t even sure what is normal and not normal pressure for me. I don’t know anyone else with my condition and I just go day to day living with how I am in the moment. If anyone else lives with this and knows symptoms or just how they normally feel that would be amazing. Since I feel alone in this as many are born with it or I’ve known are elderly.
Sometimes the headaches result from a shunt that is defective. I was diagnosed with a form of communicating hydrocephalus in my early 50's. The shunt worked fine for 2 years, after which it started flowing too fast. Constantly lying flat was the only thing that would stop it. The initial solution was to implant a stop valve near my collar bone. That got clogged after another 2 years. I had another shunt implanted about 2 years ago, and so far so good. I only get an occasional headache when the barometric pressure changes drastically.
My shunt is at 4 which is overdraining. Mine was also good for a year until I began to have seazures. Since almost 2 years I haven't had a good day. I am in my 5th adjustment and still haven't seen any improvement on my health. Great your case is a successful one.
This helps a lot! Just to know why and what symptoms of over drainage are as a patient. I recognize the time line description of over drainage. It’s been almost 6 years with a shunt and sudden pain and laying down is a daily routine. Most of the time I can rest flat and reset but sometimes it doesn’t reset my body’s awareness. I have a differential diagnosis with pituitary/adrenal disease.
I'm watching this as I'm.laying down on a Saturday when I'm off work after groceries are up..I have a strong feeling that my most recent CT scan will show overdraining...but I can't lay down during the day because of my work in a call center. But I guess I need to yalk to HR this week and see if we can do something to ease these headaches..
Nobody is listening to me..i have slit ventriculars and I have all the symptoms to the point I'm bed ridden with pain.. they're not listening to my complains saying my case is too complicated and I should just accept what I have I'm going nuts 😢
Hi, does someone knows the symptoms of over draining i have headaches in the back of my head and neck, dizziness, pain in my shoulder and arm, feel my eyes tired i cant concentrate when i watch tv does someone relate
Hi, I've had Hydrocephalus since birth, I've had 4 brain operation for the passed 37 years of my life. It's been fourteen years since I've had my last brain operation, I get loads of headaches, do you think it's a sign that the shunt might be blocked?
I know this is an old video but thank you. My husband is almost 2 weeks post op and he’s not feeling as good as I had hoped. He does seem to get a headache like this. So maybe it is over draining. I was thinking not enough was draining. He isn’t walking as well as he did after the LP he had a few months ago. I just don’t know. I don’t know if we should go ahead and call his NS or not. He doesn’t even has his stitches out yet. Anyone have advice?
Hi Ma'am / Sir good day . watching from the Philippines. can I ask for help regarding my son's condition . he has a congenital hydrocephalus, 20days after he was born he undergo VP Shunt and now he is 7months old and still don't react using his eyes and the valve on his shunt don't push back quickly when press the doctor said that its normal when there is not enough water pressure on his head . . for his eyes he is now wearing a glasses with 100 grades under observation for 1 month . is there any possibility that my son can see? is the slow push back normal when there is no pressure on the brain? or this is a symptoms of over drain? . thank you and more power
I have constant headaches yet my shunt is working like it should..could I be overdraining? I'm calling my drs office on Monday about my CT scan that they are supposed to be setting up but that I haven't had yet
My 12 year old daughter has been having a constant headache over the past month. She’s had a couple cat scans and they look normal. Tomorrow she is having a nuclear medicine shunt study performed to see if her shunt is moving fluid properly. Have you had your CT yet?
I am in the same case. I had a vp shunt in December 2018 and everything was well until I had my first seizure in December 2019. Since then I have been in the ER 10 times and everytime they say is that the vp shunt is working correctly. I had it adjusted 5 times with no success. I have all the symptoms of overdrainage. I will go to my neurosurgeon in a week. Hope this works so my nightmare can end once and for all. Please let me know if your vp shunt was overdraining. It would help a lot. Thank you
@@NurseInfinity I also had a repeat one today 6/16/2021 bc the symptoms are still there..my nuclear medicine study from 2019 was normal..I wonder could I be under draining?
@@edithdlp8045 Idk anything yet..like I just stated..I had a nuclear med study 12/6/19, CT 11/7/19 and another non contrast ct today to see if I'm over/under draining..I've had both before..this shunt will be 11 years old on 7/1..longest time between surgeries for me to date has been 16 years
Can anyone tell how many times we need to replace VP shunt.. If it is placed 1 month old baby?.. What all other things going to happen with the baby.. As she grows?
I think I am over draining again..it's aggrevating..I feel like I'm going to vomit all of the time, can't take the pressure anymore..I'm waiting for my Neurosurgeon to issue a CT scan order to see if my sh7br needs to be adjusted..
I don't know if I am overdraining or underdraining. I had my shunt set a 4,then 5, then 6, then 5, now I have it at 4. Allegedly the higher the number the less it drains. I feel horrible, I am shaky, dizzy and with a horrible non stop headache. I have had advil every day since September 2020 and I worry about my kidney or liver.
Heyy please help me🙏🙏 My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed. Please help me Is it normal while sleeping the CSF get stored??please help me🙏🙏
Heyy please help me🙏🙏 My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed. Please help me Is it normal while sleeping the CSF get stored??please help me🙏🙏
My mom undergone Craniotomy surgery (left side) and done VP shunt after one month of surgery. Due to membrane adherent complications we hadn't gone further for her cranioplasty surgery. But now we are facing her head is squeezing day by day at the no bone portion. Is it due to excess drainage if CSF by VP shunt??? Do the VP shunt have to be tighten up or to be removed???
Heyy please help me🙏🙏 My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed. Please help me Is it normal while sleeping the CSF get stored??please help me🙏🙏
Can I add an issue like this? I started over draining so my neurosurgeon tried to adjust the setting on my shunt from 120 to 150 but the valve would not respond to the magnet. Yes my shunt is supposed to be programmable.
Your neurosurgeon doesn’t know what he’s doing please find another neurosurgeon who WILL adjust it properly. My neurosurgeon adjusted mine wrong a year ago and didn’t catch it. Had to go to a different neurosurgeon.
Heyy please help me🙏🙏 My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed. Please help me Is it normal while sleeping the CSF get stored??please help me🙏🙏
@@Fcycfvyvvyvtfutg Heyy please help me🙏🙏 My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed. Please help me Is it normal while sleeping the CSF get stored??please help me🙏🙏
I have an adjustable valve. I started getting server headaches, dizziness n I'm sleeping for longer periods of time(i feel like the symptoms are progressing). Spoke to my doctor about this, he said that they aren't seeing patients becoz of quarantine. I would just like to know what are the harm of prolong periods of overdrainage? N should I seek immediate attention or can I wait a couple of months?
@@dmensah6631 I had it adjusted lower, been feeling better ever since. Hope you can get help soon as well. One helpful remedy that helped deal with the headaches during that period was a teaspoon of cinnamon power in a cup of coffee.
@@dmensah6631 I went about 3 mouths or so before I got help, didn't experience any harms from waiting so long الحمد لله. But mine was not a major overdrainage, the long period just intensified it. Your case might be different, best to check it out with a CT scan and see a Dr.
My mother VP shunt overdrained to the point where she needed emergency surgery to stop the bleeding. It wasn’t even a month that she barely got the shunt and she got a brain hemorrhage. I still don’t get why it overdrains...
@@Dr-789 I have had a non programmable shunt for 30 years. The last few days I’ve been having dizziness and nausea upon standing. It resolves when I lay down. Thoughts?
Heyy please help me🙏🙏 My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed. Please help me Is it normal while sleeping the CSF get stored??please help me🙏🙏
@@deepakjeswani800 .....if he started symptoms like vomiting ,visual obsecuration , ataxia Then shunt can be blocked or malfunctioning ....otherwise its ok
Kevin Howard can I ask you a question? I pray that you won’t help me. Into thousand 16, in July, I started getting headaches really really really bad. I have had hydrocephalus my whole life. I also have Arnold Chiari malformation. When I started getting headaches my doctors pay no attention to me. They did a CAT scan and told me that my shunt was coming apart but when I went to my neurosurgeon, they wouldn’t do anything. I waited seven months in pain before they finally did surgery. Now I’m having symptoms again. My shunt is killing me and the back of my neck and head hurt constantly. What is going on? I don’t want to go back to the same neurosurgeon, because I’m afraid they won’t do anything. But I have headaches constantly whether I’m sitting up or laying down. By the way, I am also blind. Are you Siri and I’m dictating. I said I pray that you will help me. Actually, if I give you my phone number could you call me? It’s 208-516-7440. I really need help. Thank you
Had mine put in since day before my 13th b-day an had a replacement at 15 do too fighting an getting in head lock.. ever since I been just living never a check up yet. I'm 41 now.. living with everything been a humble and beautiful experience...
For those who struggle alone, keep your head up stay strong, keep fighting...
What is normal...
I had a new CT scan this past Monday and have a follow up with my Neurosurgeon is on Wednesday the 26th of April at 830.. hoping for an end to this severe dizziness, nausea, occasional vomiting that's been going on for close to 3 years!!
I just had a programable shunt put in, in July. I hate it! I went to my Neurosurgeon on this past Wednesday (Aug, 23)to ask him and hoping to end the severe dizziness too and all he said was to come back in a month if it continues because they didn't want to say either way if it was overdraining or under draining at this point. All he would say is that, "your body is just getting used to the new normal." That doesn't help much, I have had a shunts since 11 days old in 1968, even back then they were better than these programable ones. I have NEVER had a worse recovery from a shunt surgery in my 55 year old history, I never experienced dizziness in the past with a shunt surgery recovery !!!
The fact that I/we have to deal with this at all is frustrating to me... I've never had any problems with my previous shunt... I had the same shunt for 22+ years; but then in June 2021 I had it taken out and completely replaced. Since then; I've had issues. From the jump; I have had one issue after another... Now I have an appointment with my neurosurgeon to get a programmable shunt to see if that makes a difference. I can't tolerate standing or even sitting upright for too long without getting a headache that feels like my brain is being pulled inward and it's affecting my balance, coordination and vision also. Being put on bedrest has only helped a little bit. I'm 29 years old and want to get back to the active lifestyle I had before.
I was diagnosed at 15 with aqua ductal stenosis which gave me hydrocephalus. I had my first brain surgery months after my 21st birthday and another just months after. My shunt malfunctioned at 23 and I went into emergency brain surgery. I had no idea what happened 3 days prior to waking up from my brain surgery. I don’t know much about living with delayed aqua ductal stenosis and hydrocephalus. Even my neurologist and neuro surgeon have told me they aren’t even sure what is normal and not normal pressure for me. I don’t know anyone else with my condition and I just go day to day living with how I am in the moment. If anyone else lives with this and knows symptoms or just how they normally feel that would be amazing. Since I feel alone in this as many are born with it or I’ve known are elderly.
I miss Dr Walker. One of the greatest Dr.’ s to operate on my son!
Sometimes the headaches result from a shunt that is defective. I was diagnosed with a form of communicating hydrocephalus in my early 50's. The shunt worked fine for 2 years, after which it started flowing too fast. Constantly lying flat was the only thing that would stop it. The initial solution was to implant a stop valve near my collar bone. That got clogged after another 2 years. I had another shunt implanted about 2 years ago, and so far so good. I only get an occasional headache when the barometric pressure changes drastically.
My shunt is at 4 which is overdraining. Mine was also good for a year until I began to have seazures. Since almost 2 years I haven't had a good day. I am in my 5th adjustment and still haven't seen any improvement on my health. Great your case is a successful one.
This helps a lot! Just to know why and what symptoms of over drainage are as a patient. I recognize the time line description of over drainage. It’s been almost 6 years with a shunt and sudden pain and laying down is a daily routine. Most of the time I can rest flat and reset but sometimes it doesn’t reset my body’s awareness. I have a differential diagnosis with pituitary/adrenal disease.
I'm watching this as I'm.laying down on a Saturday when I'm off work after groceries are up..I have a strong feeling that my most recent CT scan will show overdraining...but I can't lay down during the day because of my work in a call center. But I guess I need to yalk to HR this week and see if we can do something to ease these headaches..
What a perfect sad answer 2:36 very depressing..my nerusrosrgen won't listen to me I'm im so much pain because it affects my DYSTONIA..
I had my updated scan on Monday this week and my follow-up appointment with my doctor is Wednesday at 830am...
Nobody is listening to me..i have slit ventriculars and I have all the symptoms to the point I'm bed ridden with pain.. they're not listening to my complains saying my case is too complicated and I should just accept what I have I'm going nuts 😢
Hi, does someone knows the symptoms of over draining i have headaches in the back of my head and neck, dizziness, pain in my shoulder and arm, feel my eyes tired i cant concentrate when i watch tv does someone relate
Hi, I've had Hydrocephalus since birth, I've had 4 brain operation for the passed 37 years of my life. It's been fourteen years since I've had my last brain operation, I get loads of headaches, do you think it's a sign that the shunt might be blocked?
Prayers sent
If postural or occur on bending then over drainage called saphoning....
Contact me on face book
I know this is an old video but thank you. My husband is almost 2 weeks post op and he’s not feeling as good as I had hoped. He does seem to get a headache like this. So maybe it is over draining. I was thinking not enough was draining. He isn’t walking as well as he did after the LP he had a few months ago. I just don’t know. I don’t know if we should go ahead and call his NS or not. He doesn’t even has his stitches out yet. Anyone have advice?
Hi Ma'am / Sir good day . watching from the Philippines. can I ask for help regarding my son's condition . he has a congenital hydrocephalus, 20days after he was born he undergo VP Shunt and now he is 7months old and still don't react using his eyes and the valve on his shunt don't push back quickly when press the doctor said that its normal when there is not enough water pressure on his head . . for his eyes he is now wearing a glasses with 100 grades under observation for 1 month . is there any possibility that my son can see? is the slow push back normal when there is no pressure on the brain? or this is a symptoms of over drain? . thank you and more power
Plz contact me 9716943777 my baby also in this condition
I have constant headaches yet my shunt is working like it should..could I be overdraining? I'm calling my drs office on Monday about my CT scan that they are supposed to be setting up but that I haven't had yet
My 12 year old daughter has been having a constant headache over the past month. She’s had a couple cat scans and they look normal. Tomorrow she is having a nuclear medicine shunt study performed to see if her shunt is moving fluid properly.
Have you had your CT yet?
@@NurseInfinity I had mine done in sec 2019 and its fine
I am in the same case. I had a vp shunt in December 2018 and everything was well until I had my first seizure in December 2019. Since then I have been in the ER 10 times and everytime they say is that the vp shunt is working correctly. I had it adjusted 5 times with no success. I have all the symptoms of overdrainage. I will go to my neurosurgeon in a week. Hope this works so my nightmare can end once and for all. Please let me know if your vp shunt was overdraining. It would help a lot. Thank you
@@NurseInfinity I also had a repeat one today 6/16/2021 bc the symptoms are still there..my nuclear medicine study from 2019 was normal..I wonder could I be under draining?
@@edithdlp8045 Idk anything yet..like I just stated..I had a nuclear med study 12/6/19, CT 11/7/19 and another non contrast ct today to see if I'm over/under draining..I've had both before..this shunt will be 11 years old on 7/1..longest time between surgeries for me to date has been 16 years
Can anyone tell how many times we need to replace VP shunt.. If it is placed 1 month old baby?.. What all other things going to happen with the baby.. As she grows?
Its a flexible tube it grows with the child I've had mine 27 years now no revisions
I think I am over draining again..it's aggrevating..I feel like I'm going to vomit all of the time, can't take the pressure anymore..I'm waiting for my Neurosurgeon to issue a CT scan order to see if my sh7br needs to be adjusted..
I don't know if I am overdraining or underdraining. I had my shunt set a 4,then 5, then 6, then 5, now I have it at 4. Allegedly the higher the number the less it drains. I feel horrible, I am shaky, dizzy and with a horrible non stop headache. I have had advil every day since September 2020 and I worry about my kidney or liver.
Heyy please help me🙏🙏
My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed.
Please help me
Is it normal while sleeping the CSF get stored??please help me🙏🙏
Heyy please help me🙏🙏
My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed.
Please help me
Is it normal while sleeping the CSF get stored??please help me🙏🙏
I have a vp shunt I was wanna knw if it can cause u to have chest tightness
I mean the shunt is in your Chest draining into your stomach
Why don’t all surgeons add siphoning devices to shunts.
I have 4 anti siphons
I have to see a nurosurgeon I had neck MRI and it showed fluid on my brain I only weighed 1 pound 14 oz.they need to do a MRI of my brain
My mom undergone Craniotomy surgery (left side) and done VP shunt after one month of surgery. Due to membrane adherent complications we hadn't gone further for her cranioplasty surgery. But now we are facing her head is squeezing day by day at the no bone portion.
Is it due to excess drainage if CSF by VP shunt???
Do the VP shunt have to be tighten up or to be removed???
Heyy please help me🙏🙏
My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed.
Please help me
Is it normal while sleeping the CSF get stored??please help me🙏🙏
Can I add an issue like this? I started over draining so my neurosurgeon tried to adjust the setting on my shunt from 120 to 150 but the valve would not respond to the magnet. Yes my shunt is supposed to be programmable.
Your neurosurgeon doesn’t know what he’s doing please find another neurosurgeon who WILL adjust it properly. My neurosurgeon adjusted mine wrong a year ago and didn’t catch it. Had to go to a different neurosurgeon.
Heyy please help me🙏🙏
My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed.
Please help me
Is it normal while sleeping the CSF get stored??please help me🙏🙏
@@Fcycfvyvvyvtfutg Heyy please help me🙏🙏
My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed.
Please help me
Is it normal while sleeping the CSF get stored??please help me🙏🙏
@@deepakjeswani800 no that is not normal at all! Anytime you have issues with csf fluid like that I would go to the ER.
@@deepakjeswani800 Same with my sister. I pray they found a solution for you.
I have an adjustable valve. I started getting server headaches, dizziness n I'm sleeping for longer periods of time(i feel like the symptoms are progressing). Spoke to my doctor about this, he said that they aren't seeing patients becoz of quarantine.
I would just like to know what are the harm of prolong periods of overdrainage? N should I seek immediate attention or can I wait a couple of months?
Adjust ur valve to medium pressure....
How did it go? I believe I have Overdrainage for the last month based on symptoms explained.
@@dmensah6631 I had it adjusted lower, been feeling better ever since.
Hope you can get help soon as well. One helpful remedy that helped deal with the headaches during that period was a teaspoon of cinnamon power in a cup of coffee.
@@dmensah6631 I went about 3 mouths or so before I got help, didn't experience any harms from waiting so long الحمد لله. But mine was not a major overdrainage, the long period just intensified it.
Your case might be different, best to check it out with a CT scan and see a Dr.
My mother VP shunt overdrained to the point where she needed emergency surgery to stop the bleeding. It wasn’t even a month that she barely got the shunt and she got a brain hemorrhage. I still don’t get why it overdrains...
Contact mr on face book
@@Dr-789 I have had a non programmable shunt for 30 years. The last few days I’ve been having dizziness and nausea upon standing. It resolves when I lay down. Thoughts?
@@Irishlass1 ....look saphoning effect...u need antisaphoning device to insert or programmble shunt
Heyy please help me🙏🙏
My father has had brain tumor surgery, it's been 3 months, VP shunt surgery, it's been 1 month but now he's swollen and hard surface when he's sleeping and when he's up After half an hour, the CSF drain is getting out but is not getting completed.
Please help me
Is it normal while sleeping the CSF get stored??please help me🙏🙏
@@deepakjeswani800 .....if he started symptoms like vomiting ,visual obsecuration , ataxia
Then shunt can be blocked or malfunctioning ....otherwise its ok
I'm 43 yrs old
I have a question about hydrocephalus
I have it, whats your question?
Kevin Howard can I ask you a question? I pray that you won’t help me. Into thousand 16, in July, I started getting headaches really really really bad. I have had hydrocephalus my whole life. I also have Arnold Chiari malformation. When I started getting headaches my doctors pay no attention to me. They did a CAT scan and told me that my shunt was coming apart but when I went to my neurosurgeon, they wouldn’t do anything. I waited seven months in pain before they finally did surgery. Now I’m having symptoms again. My shunt is killing me and the back of my neck and head hurt constantly. What is going on? I don’t want to go back to the same neurosurgeon, because I’m afraid they won’t do anything. But I have headaches constantly whether I’m sitting up or laying down. By the way, I am also blind. Are you Siri and I’m dictating. I said I pray that you will help me. Actually, if I give you my phone number could you call me? It’s 208-516-7440. I really need help. Thank you
You need a to go to a doctor that will listen to you.
whats surgery did you did kevin howard?and how many times?thanks i need info 4 my daughter
@@Otskieranger everyone is different some go years without having complications like myself had it 27 years no revisions