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I have many neurological problems that were never diagnosed until now. Three years ago I had an MRI with contrast of my brain. The results were horrific. I was 43 and had severe atrophy of my brain. I read on the internet that I'd lose my sight, ability to walk, talk and even use the restroom. So after experiencing major anxiety, I locked up Pandora's Box and basically tried my best to forget the MRI results. Fast forward to 3 years later, I decided to open up Pandora's Box. So I went to my family doctor and was referred to a neurologist. She looked at my images, the report and my head and said "I think you have Hydrocephalus". I said I did not, because my mom had me tested when I was born, because my head grew a lot and real quickly and I was told I did not have water on my brain. Well that was in early 1969 and I doubt the test was too high tech. Plus my oldest sister, who is 7 years older than me, said she remembered them talking about putting a shunt in my brain. So I looked through my baby album, found nothing. I then went to my school records, because my mom kept all my report cards . . . sure enough my doctor wrote on a form that I may have motor skill delayment, because of Hydrocephalus. Wow!!! So I went to a super good Neurologist (he is from University of Kansas Medical Center and my appointment was scheduled for 9 months after I received the referral, he is that busy). So I brought in my MRI scan and test results, plus I copied all of my head sizes that were recorded from birth to 2.5 years. Yes I was born with Hydrocephalus and have the same symptoms (short term memory loss, headaches, etc . . . ) that I've had since I was young, so nothing will be done. No shunt.
My ventricles are super large, as is my head. I have never fit into hats. I could not even stay in a bicycling class in college, because a helmet was required and none fit.
I've always lost things, including my car in any parking lot! I would rather give up my cell phone than my GPS. I also have Face Blindness.
BUT my long term memory is awesome!!! I remember lot's of details from as far back as 7 years old! Plus some things from even before.
I am not a Hydrocephalus expert, but from what I have read, short term memory loss is pretty common. I can live with that and have for 47 years!! Same with the headaches. I rarely take anything. When I do, it is Aspirin, Goody's (the powder) and this efferdescent that is called hangover I think. But, I know taking Aspirin regularly is not good, bedcause it thins your blood, so I just overcome . . . I am an overcomer! Thank you, Jesus God is good!
Not sure if anyone read all that, I tend to go on and on, but in light of September being Hydrocephalus month and the month I discovered I have it, I am gonna end with pasting interesting facts below:
In recognition of Hydrocephalus Awareness Month during the month of September, here are seven things you may not know about hydrocephalus:
1. For every 1,000 babies born in the United States, one to two will have hydrocephalus.
There are several causes of hydrocephalus that can lead to someone developing the condition. Today, it is the most common reason for brain surgery in children.
2. More than 1 million Americans are currently living with hydrocephalus.
Hydrocephalus affects the cognitive, behavioral, social and physical development of people in different ways. Despite some difficulties, with proper treatment and care, many are able to live full lives.
3. More than 700,000 American seniors are believed to have Normal Pressure Hydrocephalus (NPH), yet they are not aware because they have been misdiagnosed with Alzheimer’s or another related dementia, or are underdiagnosed.
4. Normal Pressure Hydrocephalus is referred to as ‘treatable dementia,’ because the symptoms mimic those of Alzheimer’s, Parkinson’s or symptoms associated with aging. If left untreated, NPH can result in dementia, but it is one of the very few forms of dementia that can be reversed with proper treatment.
5. Every 15 minutes, someone has brain surgery treat hydrocephalus. Annually, doctors perform 40,000 shunt surgeries.
Though it is far from perfect, the shunt system is currently the most effective way of removing the excess cerebrospinal fluid. Unfortunately, 50 percent of stunts placed in children fail within the first two years, requiring repeated brain surgery.
6. Hydrocephalus is as common as Down syndrome, but receives only 1/30th of the public research funding.
7. Despite how many people it affects, and how many families have a loved one with the condition, hydrocephalus gets relatively little attention from either the media or from public funding. To put this in perspective, though it’s also 30 times more common than cystic fibrosis, hydrocephalus only receives about 1/13 of their amount in public funding for research.
With help from her family, a caring community, dedicated doctors and her strong spirit, Olivia has thrived despite her hydrocephalus. Though she has spent a good portion of her life in and out of hospitals, Olivia has continually showed how she refuses to let hydrocephalus define her life.
Now I just want to write to all my schools that I did excessively study for tests and the reason for my low grades is bc of my Hydrocephalus. Now since what I learned has turned into Long Term Memory, I do great on Trivia competitions!
I have many neurological problems that were never diagnosed until now. Three years ago I had an MRI with contrast of my brain. The results were horrific. I was 43 and had severe atrophy of my brain. I read on the internet that I'd lose my sight, ability to walk, talk and even use the restroom. So after experiencing major anxiety, I locked up Pandora's Box and basically tried my best to forget the MRI results. Fast forward to 3 years later, I decided to open up Pandora's Box. So I went to my family doctor and was referred to a neurologist. She looked at my images, the report and my head and said "I think you have Hydrocephalus". I said I did not, because my mom had me tested when I was born, because my head grew a lot and real quickly and I was told I did not have water on my brain. Well that was in early 1969 and I doubt the test was too high tech. Plus my oldest sister, who is 7 years older than me, said she remembered them talking about putting a shunt in my brain. So I looked through my baby album, found nothing. I then went to my school records, because my mom kept all my report cards . . . sure enough my doctor wrote on a form that I may have motor skill delayment, because of Hydrocephalus. Wow!!! So I went to a super good Neurologist (he is from University of Kansas Medical Center and my appointment was scheduled for 9 months after I received the referral, he is that busy). So I brought in my MRI scan and test results, plus I copied all of my head sizes that were recorded from birth to 2.5 years. Yes I was born with Hydrocephalus and have the same symptoms (short term memory loss, headaches, etc . . . ) that I've had since I was young, so nothing will be done. No shunt.
My ventricles are super large, as is my head. I have never fit into hats. I could not even stay in a bicycling class in college, because a helmet was required and none fit.
I've always lost things, including my car in any parking lot! I would rather give up my cell phone than my GPS. I also have Face Blindness.
BUT my long term memory is awesome!!! I remember lot's of details from as far back as 7 years old! Plus some things from even before.
I am not a Hydrocephalus expert, but from what I have read, short term memory loss is pretty common. I can live with that and have for 47 years!! Same with the headaches. I rarely take anything. When I do, it is Aspirin, Goody's (the powder) and this efferdescent that is called hangover I think. But, I know taking Aspirin regularly is not good, bedcause it thins your blood, so I just overcome . . . I am an overcomer! Thank you, Jesus God is good!
Not sure if anyone read all that, I tend to go on and on, but in light of September being Hydrocephalus month and the month I discovered I have it, I am gonna end with pasting interesting facts below:
In recognition of Hydrocephalus Awareness Month during the month of September, here are seven things you may not know about hydrocephalus:
1. For every 1,000 babies born in the United States, one to two will have hydrocephalus.
There are several causes of hydrocephalus that can lead to someone developing the condition. Today, it is the most common reason for brain surgery in children.
2. More than 1 million Americans are currently living with hydrocephalus.
Hydrocephalus affects the cognitive, behavioral, social and physical development of people in different ways. Despite some difficulties, with proper treatment and care, many are able to live full lives.
3. More than 700,000 American seniors are believed to have Normal Pressure Hydrocephalus (NPH), yet they are not aware because they have been misdiagnosed with Alzheimer’s or another related dementia, or are underdiagnosed.
4. Normal Pressure Hydrocephalus is referred to as ‘treatable dementia,’ because the symptoms mimic those of Alzheimer’s, Parkinson’s or symptoms associated with aging. If left untreated, NPH can result in dementia, but it is one of the very few forms of dementia that can be reversed with proper treatment.
5. Every 15 minutes, someone has brain surgery treat hydrocephalus. Annually, doctors perform 40,000 shunt surgeries.
Though it is far from perfect, the shunt system is currently the most effective way of removing the excess cerebrospinal fluid. Unfortunately, 50 percent of stunts placed in children fail within the first two years, requiring repeated brain surgery.
6. Hydrocephalus is as common as Down syndrome, but receives only 1/30th of the public research funding.
7. Despite how many people it affects, and how many families have a loved one with the condition, hydrocephalus gets relatively little attention from either the media or from public funding. To put this in perspective, though it’s also 30 times more common than cystic fibrosis, hydrocephalus only receives about 1/13 of their amount in public funding for research.
With help from her family, a caring community, dedicated doctors and her strong spirit, Olivia has thrived despite her hydrocephalus. Though she has spent a good portion of her life in and out of hospitals, Olivia has continually showed how she refuses to let hydrocephalus define her life.
Now I just want to write to all my schools that I did excessively study for tests and the reason for my low grades is bc of my Hydrocephalus. Now since what I learned has turned into Long Term Memory, I do great on Trivia competitions!
Happy Hydrocephalus Month!!!!!
Thank you for sharing this information. My 75 year old father was just diagnosed with this disease and I'm now researching to learn as much as I can. The condition can also occur in the elderly, usually those over 60, my dads case
Thank you for sharing this information. My 75 year old father was just diagnosed with this disease and I'm now researching to learn as much as I can. The condition can also occur in the elderly, usually those over 60, my dads case
I was diagnosed with Hydrocephalus at the age of 47 after having the discs in my neck give out causing an explosion in my head. I have been shunted and it is not a cure all and have had rare problems after the shunt surgery. My headaches and dizziness are still with me. The problems I have had due to the surgery is loss of hearing where I am in need of a hearing aid and an incisional hernia where the tube from the shunt is inserted into my abdominal cavity. Also once the shunt surgery is done it seems that the Neurosurgeons are not too helpful, at least in my case. I hate to be a "Debbie Downer" or in my case Dougie Downer but please research NPH and choose your Doctor with care. I wish your father and everyone in your family the best of luck.
I was diagnosed with Hydrocephalus at the age of 47 after having the discs in my neck give out causing an explosion in my head. I have been shunted and it is not a cure all and have had rare problems after the shunt surgery. My headaches and dizziness are still with me. The problems I have had due to the surgery is loss of hearing where I am in need of a hearing aid and an incisional hernia where the tube from the shunt is inserted into my abdominal cavity. Also once the shunt surgery is done it seems that the Neurosurgeons are not too helpful, at least in my case. I hate to be a "Debbie Downer" or in my case Dougie Downer but please research NPH and choose your Doctor with care. I wish your father and everyone in your family the best of luck.
I've been researching like crazy and will do even more research on my dads doctor thanks to you. I do hope that you find some way to relieve your discomfort and pain. I can't imagine my dad dealing with that at 75 years old. So, do you regret the decision of having the surgery? I've read so many alarming outcomes by not having the surgery i.e. risk of stroke, no longer being able to walk, dementia, etc, etc.
I've been researching like crazy and will do even more research on my dads doctor thanks to you. I do hope that you find some way to relieve your discomfort and pain. I can't imagine my dad dealing with that at 75 years old. So, do you regret the decision of having the surgery? I've read so many alarming outcomes by not having the surgery i.e. risk of stroke, no longer being able to walk, dementia, etc, etc.
Before the shunt I was sleeping so much, shuffled my feet while I walked and had very bad nausea in the morning. The headaches were worse than they are now. At my age I had to take a chance. I do not regret the surgery but I do regret the treatment I have received after have the surgery. I feel that the shunt is malfunctioning which they are known to do but the doctors are not helping my cause.
Many older people have NPH and live without the shunt. If your father can deal with his symptoms and has good support from friends and family I would try to hold out as long as possible. Glad to see you helping your father, I know that there is not much info on the internet but keep on plugging away.
Before the shunt I was sleeping so much, shuffled my feet while I walked and had very bad nausea in the morning. The headaches were worse than they are now. At my age I had to take a chance. I do not regret the surgery but I do regret the treatment I have received after have the surgery. I feel that the shunt is malfunctioning which they are known to do but the doctors are not helping my cause.
Many older people have NPH and live without the shunt. If your father can deal with his symptoms and has good support from friends and family I would try to hold out as long as possible. Glad to see you helping your father, I know that there is not much info on the internet but keep on plugging away.
I worry that is dementia type symptoms will get worse and when he takes drives around town he'll get lost or worse not react quickly when he gets into a situation where he'll need quick reaction time. Also, his mobility has been affected to a point where he is now falling and can't get up. Docs are saying it is because of the NPH. It's just so scary.
I worry that is dementia type symptoms will get worse and when he takes drives around town he'll get lost or worse not react quickly when he gets into a situation where he'll need quick reaction time. Also, his mobility has been affected to a point where he is now falling and can't get up. Docs are saying it is because of the NPH. It's just so scary.
I understand completely, you do not want rob him of his independence, but of course you do not want him to get hurt. He could try Acetazolamide first to see if that helps with the pressure and if he has not had a lumbar puncture (spinal tap) I would ask the doctors to try that before surgery for a shunt. Make sure the doctors do the all testing protocol before any surgery. I wish I could offer you and your father more than just words. Feel free to private message me if you have any questions, I would more than happy to try to help.
Thanks you so much for this information OP. I didn't know both that Hydrocephalus can be diagnosed very late and life and that there is such a thing called normal pressure Hydrocephalus. I have epilepsy and migraines myself, so I see the neurologist frequently, and sometimes get MRI and EEG scans so he can monitor the function of my brain as well. STM loss and loss of concentration occur with my conditions and as side effects of the medicines as well. Knowledge is power as they say, and knowing what's going on can help you manage your condition better.
I went into a Nurse Practitioner because my regular doctor could not see me. I didn't even mention the Hydrocephalus and I discussed my anxiety. She prescribed me Lexapro, 20 mg. Took a while to work, but does help. On my follow up appointment she asked how I was doing. I said better, but I have had insomnia since a child. I was on Ambien once and had awful addiction side effects. So she prescribed Amitriptylin, 10mg. She said to try 10 mgs for a few days, then increase until it works to get you to sleep. So I did exactly as she said. Looks like 30 mgs of Amitriptylin at night my number.
So within a week of taking 30 mgs of Amitriptylin at night, I notice my headaches are less severe, as is the pain in my left side of my neck. So I research it on line and go and behold, it is a med that helps us with Hydrocephalus! Amazed to say the least!!!
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God is good!
but please research NPH and choose your Doctor with care. I wish your father and everyone in your family the best of luck.
