What if it isn’t Alzheimer’s or Parkinson’s? Understanding Normal Pressure Hydrocephalus

Normal Pressure Hydrocephalus WebinarBy: Karima Roumila, MPH

Ever wondered if that memory loss, bladder incontinence or gait problem could be something other than Alzheimer’s or Parkinson’s? Did you know that about 375,000 older Americans have Normal Pressure Hydrocephalus (NPH) and it is one of the few causes of dementia that can be controlled or reversed with treatment?

During Hydrocephalus Awareness Month, we launched our webinar series. Our first webinar titled,  “What if it isn’t Alzheimer’s or Parkinson’s?” was held on Tuesday, September 10, 2013. Dr. Michael A Williams, Medical Director, Sandra and Malcolm Berman Brain & Spine Institute, LifeBridge Health at Sinai Hospital of Baltimore, discussed how the diagnosis of Normal Pressure Hydrocephalus can be missed and how it can be made.  The webinar included a question and answer session with Dr. Williams.

Listen to the full recording: What if it isn’t Alzheimer’s or Parkinson’s?

The Webinar Series is made possible through the generosity of our loyal partners. We would like to thank Medtronic, Aesculap and Sophysa for supporting this meaningful program for the hydrocephalus community.

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13 Responses to “What if it isn’t Alzheimer’s or Parkinson’s? Understanding Normal Pressure Hydrocephalus”
  1. Lisa Scott says:

    Hi im a 43 yr old British female and have just had a shunt fitted three weeks ago after being diagnosed with normal pressure hydrocephalus. I have still got brain damage from this. I cannot work and have list my short term memory. I have balance problems and need 24 hour supervision. I was leading a normal life till july then just started getting headaches. Im in a wheelchair now. After the operation I was really ill with low pressure headaches and sickness its week three now and they are improving and I have decreased my pain meds. Im struggling to find anyone my age with normal pressure hydrocephalus as its usually an older persons illness. Im feeling really lonely. They are writing a medical paper on me but thats not helping me now! Would love to hear from anyone else who is suffering from this at a similar age.

  2. Angela Lacey says:

    Hi Lisa,

    Take heart, hun,you are not alone! Everyone’s Hydro is different, so this may not apply for everyone.
    I live in America, on the East coast, in a small state called Delaware. I am a 47 yr old divorced female who was perfectly healthy, working a full time job and raising my son, up until April of 2011, when I started getting “symptoms”. I did not know what was wrong with me, but I did know that SOMETHING definitely was. Memory issues, urinary incontinence, balance issues, headaches, falling, inability to run or walk quickly, inability to lift my feet up while standing on one leg even long enough to put the lifted leg in my pants, mild depression, anxiety, and so much more. None of which was ever an issue before then, but suddenly they all came on.

    (Before I tell you my story, let me warn you that I sometimes ramble now, the newest symptom received as a gift from our pal Hydro.)

    I went online to WebMD, after entering my symptoms, it suggested MS, which it said could not be diagnosed without an MRI. So, although it didn’t diagnose Hydro, it did lead me to believe I should have an MRI.

    I went to my regular doctor to see what was wrong with me, he of course was clueless. I had all my labs done and the blood tests etc…, but the only thing off was my iron, everything else was great. Doc said there was nothing wrong that would explain my symptoms. It wasn’t a brain tumor, or the blood work would have indicated something about levels…blah, blah, blah, doctor speak, it wasn’t Diabetes or my blood sugar levels…blah, blah, blah, finally he did agree to send me for an MRI, he called me back into his office that same day. Which is certainly unusual for a doctor’s office, so I thought I was dying. I will now tell you what he said to a very scared woman, single mom, poor, newly divorced, scared and alone, concerned over the wealth of symptoms I now had woman. The doctor said:
    ” You have Normal Pressure Hydrocephalus, this is a brain condition. Back in college they taught us the way to remember the symptoms for it was Wacky, Wet, and Wobbly. So you are gonna be having those symptoms. You will need to have brain surgery. I am referring you to a Neuro surgeon.”
    Now, I of course, didn’t hear most of that, something about the words BRAIN SURGERY made everything else sound like blah, blah, blah.
    Thankfully, I had had my older sister come with me, she is my rock. After picking my chin up off the floor, I cried, prayed, and generally felt sorry for myself for several months. Then, I began to read up on Hydrocephalus and to become my own best advocate for the condition.
    So, one day, all cried out, I decided to take myself in hand and to see what my options were.
    What I have learned since then is this; not everyone with Hydro gets a shunt or ETV surgery. Most of course do, but, unless you are born with it, you may or may not need. As my low Iron turned out to be anemia, they would not operate on me unless I got my Iron back up, and I was not sold on the surgery anyway. They will push it on you though.

    Although my primary care doctor had called it NPH, the MRI reviewer was more accurate, he said In his report that I had Primary Aqueductal Stenosis Hydrocephalus, non-communicating. My new Neuro-Surgeon agrees, and feels I was likely born with it, despite the lack of an enlarged head, or that it came on in my early years, but that my body just adapted for it, until I went on some prescribed medicines to control light bladder leakage and for depression, I was hypersensitive to the meds and they let the Hydro come out in me full force once I started taking them.
    This was like an eye opener to me, it was as if I had just discovered my true identity or something. It just felt right, it rang so true.

    So, I am anemic, hypersensitive to medications, and have Hydro, but I know that my hope is in a higher source than the doctors of today for one, my son is grown, 21 and out on his own now. I still live alone, but my mom (retired) and my older sister still stop by to do some chores for me that I cannot do for myself, such as lifting while walking, I did manage to get an apartment near a grocery store that has electric wheel chair grocery carts, which I do use regularly, despite the evil looks that the little old ladies give me, they just KNOW I don’t need to use them on account of I “look fine to them.” NEWS FLASH; not all illnesses can be detected on the outside, as we know too well.
    I am trying to learn from this. I have had to learn patience, both with myself,( since it takes a million times longer to do anything as it used to take.) As well, with others, yes even those little old ladies at the grocery store who prejudged me. It is SO not an easy thing to do. What helps me most I think is my grandma, she’s 86, still going strong, she doesn’t have Hydro, but she has always had a never stop, never surrender attitude. (She broke her wrist raking the yard, after putting the cast on the doctor asked her if she had any questions for him, she said, “yes, when will I be able to mow the lawn again?” Ok grandma, ok. I had to laugh.

    So, right now, I am on long-term disability from my job and SSDI, its barely enough to pay my bills and yet, if I make a penny more, I will be out of all medical benefits. I have had to get so many migraines just to fight the insurance companies to get this far, but I am determined that as long as I am able to get up in the mornings, I am gonna try to laugh both at myself and others, and I am gonna be patient/tolerant with others. I have good days and bad days, some symptoms are more prominent one day, while others are the next. Don’t take the doctors or the insurance companies for the final authority on any subject. Lots of folks will open their mouths about your condition who have neither a knowledge of nor a degree of understanding on how to speak to someone who has this condition.
    Case in point, my Ophthalmologist said about 10 things to me while I had my eyes examined, all of which were based on two Hydro patients he had seen in the past, and none of which were true.
    Well Lisa, you may have bit off more than you had hoped for in getting me as a friend, but here I am. Hope even a piece of this has helped you Lisa, as I said, I would love to keep in touch with you. Feel free to write back, I don’ t know everything, and I have lost much of what I was in college to learn, but I do blog on occasion for the Hydro Assoc, and I do love helping people.
    Keep on keeping on,
    Angela

  3. Walter Hackett says:

    Lisa, very sorry to hear about the severity of your symptoms. My gait and incontinence issues almost completely resolved after the shunt was implanted. I’m a bit older, was diagnosed at 55 but still on the relatively young side of things. I do get headaches still but they were one of the last symptoms that developed along with cognitive problems. My short term memory has improved somewhat but my ability to “think” remains significantly impaired. I suspect the damage to the brain is somewhat unique to each person. I have not had to deal with a lot of emotions because, frankly, I just don’t experience them the same way I did a couple of years ago. I believe that whatever part of the brain that produces emotions has been damaged in my case along with the areas that control my ability to think in the abstract, 3 dimensionally and engage in complex analysis, all required for every job I’ve held over the last 20+ years so while I don’t get “emotional” I still get frustrated at a real level since I simply can’t do what I used to do. I’d suggest you consider joining one of the Facebook groups that exists for caregivers and those who suffer from hydrocephalus as I’m sure you’ll find folks your age and younger. I attended a meeting of a local support group in July and met many people younger than myself as well as some who were in the same profession as I. Best of luck to you..

  4. Jan Leonard says:

    Angela, I am 71 and was diagnosed last March. I had the shunt and programmable unit put in and have resumed my normal activities. I don’t understand why you don’t increase your iron level and have the surgery. You are too young to just give up and accept continuing to get worse. Have the surgery, many of your symptoms will disappear and you can have a normal quality of life.

  5. Angela Lacey says:

    This is my new email address, please update.

  6. amandagarzon says:

    Thanks, Angela!

  7. Angela Lacey says:

    Jan,

    I do not have the surgery for several reasons. First, I am NOT a candidate for shunt surgery, even if my iron level were up, in other words, it is not expected to correct my issues if I have a shunt put in, and then you have to go to the doctors constantly to have corrections, etc…from the shunt done.
    The only other option then would be to have the ETV surgery, and even it is problematic. As I also am prone to infections, I prefer to just deal with the symptoms. My body knew how to correct for them before, it will learn to do so again. I am not anti surgery, I just don’t feel it is right for me at this time.
    Have a nice day,
    Angela

  8. Angela Lacey says:

    Update: I just fell, went to the hospital for 2-3 days, there, they discovered a “Brain Anomaly” in the frontal left lobe of my brain that we never knew I had, I looked it up, It is typically found at birth in those born with Hydrocephalus. As I did not have an enlarged head at birth, nor most of the typical symptoms that one would expect to see at birth, and I am 46 now, I count myself VERY LUCKY AND GRATEFUL to have gotten to live 46 years without symptoms. It has not been and will not be time squandered!
    Angela

  9. I’m a 70 yr. old male with NPH; I had the shunt put in May of 2011 and it has helped keep the CSF from damaging my brain tissue badly. I’ve had it checked several times and it’s never been inoperable or clogged up in any way. This being said, the shunt was not the miracle I hoped it would be, but it has kept things from getting worse, I think.
    The last MRI did not show any atrophy of the brain tissue.
    I had a severe head injury as a 16 year old during a motorcycle accident and still believe that could have been the beginning of this which took years to fully develop; only one doctor considers that a possibility. The rest say that was too long ago, but I don’t agree.
    My biggest problem is the urinary incontinence; I have to wear an external catheter every night even though I take several pills for overactive bladder. I still have accidents during the day even though I wear maximum protection. This is depressing since it keeps me from traveling overseas to London to see my granddaughter.
    My gait is very unstable which has led to occasional falls from loss of balance.
    My mind is still pretty good, but that frontal lobe syndrome has taken away my “filter” to some extent in social situations. I take 2 pills twice a day to help with some memory problems.
    Lisa, I am also from London which I miss greatly; I have lived in the USA since 1979 to be with my wife of 33 years. She is my caregiver. I love my life here, but used to be able to go “home” at least once a year or take tour groups over to show them my homeland – can’t now due to the NPH – can’t drive anymore either since I have that heavy foot that caused me to have two collisions right before I was diagnosed in 2011.
    70 is too young to have these disabilities, so I certainly feel for you who have been diagnosed as early as your 40′s; good luck as you deal with your own special needs with this frustrating and debilitating illness.

  10. Holly says:

    I am interested in how you get diagnosed with normal pressure hydrocephalus…what kind of MRI do I need and does anyone know how much it costs?

  11. amandagarzon says:

    Angela, we are thinking about you. We hope the surgery went well. Please Facebook Inbox us and let us know.

  12. Audrey says:

    I am now 72yrs. and have NPH. I have had the surgery at Johns Hopkins Hospital and thank God I did, I feel as though I have been reborn, I am free to live my life thanks to Dr. Rigamonti and his staff at Johns Hopkins Hospital. Yes it has been a journey but well worth it! I do whatever I want to now without fear, I say go for it…..

  13. Rosemary says:

    I have been reading all the above comments and want to add my husband’s experience with NPH. It started in 2007 with one leg dragging, forgetfulness and out GP sent us to a neurologist where an MRI was ordered. She diagnosed NPH and sent us to a neurosurgeon who specialises in NPH. He ordered a lumbar puncture to drain some brain (CSF) fluid – before doing this my husband had to walk the length of the hospital he had to walk the length of the hospital corridor as fast as he could and the doc timing with a stopwatch. Next day after the lumbar puncture he had to walk fast again and there was a big improvement. He was sent home to see how long the improvements both mental and physical would last – about 2 weeks before the symptoms came back. He then had a shunt fitted in his brain and this lasted 2 years before blocking and symptoms coming back. Since then he has had two more shunts fitted because of blockage but the last one is programmable so providing there is no blockage it can be adjusted. He is no longer driving and walking and cognitive functions have slowed down but at 74 I think he has done very well. We go camping regularly and also overseas and on cruises and he copes very well.

    So if anyone wants my opinion on all this I think the brain shunt is amazing and can give a person back quality of life whereas without it a person would deteriorate. I often tell people who have been told they have alzheimers to have an MRI and make sure as the symptoms are so similar.

    My comment to Angela is don’t be afraid of a shunt and also don’t leave it too long as you might get more brain damage in the interim. Much better to get your life and independence back.

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