Life with Normal Pressure Hydrocephalus
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- Опубликовано: 20 окт 2024
- Maureen McIntyre is a Canadian author who has spent much of her career working at Toronto hospitals. She is the author of two books about her life and struggles with NPH. “Perseverence”, a work of fiction and “Life Over 60.” Maureen was diagnosed with Normal Pressure Hydrocephalus in 2007.
I have NPH and the symptoms are quite severe. Trouble walking, falling, loss of manual dexterity, changes in behavior, etc. I saw a neurologist in 2013 and another in 2017 and both failed to recognize the problem, even though my enlarged ventricle were quite obvious on the MRI. After doing my own online research, I realized I must have NPH. Like Maureen, all my doctors were quite dismissive. "Come back in a year and we'll see how you're doing." I finally told my neurologist that I knew I had NPH, and he made an appointment with a specialist. I had to diagnose myself to get an appointment with the Hydrocephalus Clinic! I had to fight against incompetence and indifference for 7 years until I finally got the possibility of having a spinal tap and a shunt!
God bless 🙏 you,this problem should be brought to the medical front,nph .
Can so relate. Took me 10 years and I too diagnosed myself. But I had to completely lose my mind, my independence, and subjected to all sorts of scams. I was 56 when I finally got to see a specialist and I was immediately scheduled for surgery. Have to admit this video has triggered me 11 years later.
There must be a lot of us able to function near-normal because I believe the doctors are reluctant to-do the shunt, etc., unless the progression is severe. Wet, Wobbly, and Wacky is apt. Have had all 3. Migraines for 10 years in middle age. Walk everywhere, avoid sugar, take herbals, brain injury when about 4. Keep house and bank account in spite of higher math deficiency.
I had a revision shunt put in this past May. My first shunt was blocked. They only figured what was wrong with me was my symptoms started again all the same as Maureen except I had bad headaches. So far I am feeling well and walking - no headaches my life is good.
The frustration with NP H is the Dr’s simply want to put you in the it must be old age (i’m 71) category or Parkinson’s or one of the others. I am feeling really good and living my best life right now.
@@farbarb
My story is similar. My GP diagnosed after my first MRI. Followed up with 2 neuroligist over a period of 3 years. Final diagnosis from neuroligist was I had ALS (cruel before Christmas hollidays). I had to travel from Little Rock AR to Austin TX for diagnosis. Glad I listened to my GP. Don't always believe all specilist. NPH is not hard to spot, don't give up!!
Thank you everyone for telling your stories and sharing your experiences here. Now I know I am not alone.
Thank you so much I to have NPH, i am 69 and never had any problems our stories are almost identical.
Initially neurology dr’s said i had Parkinson’s however after several tests my diagnosis wad finally confirmed NPH. I had a shunt pit in and when I woke up from surgery i was able to walk to bathroom on my own with nurse beside me. When I listened to your talk i was so taken aback it was exactly how i felt and what i felt like. So thank you.
Appreciate your bringing this subject to light.
My mother have NPH after brain hemorrhage, doctor recommend shunt, she has sugar and blood pressure patient. Does we go for vp shunt? Does Vp shunt is painfull? Does she recover memory?
@@zahoorentertainment.6414updates ?
I am 28 I have hydrocephalus since birth. I am experiencing a decline in memory, speech, vision, hearing and balance issues and what not. I know it's my shunt malfunctioning but they don't know that and so I wait until someone listens like you. The 2 CT show little increase in ventricle size but not much. The x ray looked good I was told. Idk why I don't get a copy of the scans I want to see my body. Anyway God is good he's bringing me to him through this and I'm so glad he gave me this. I'm sad and anxious and depressed due to the pressure in my head causing mood swings and this vision issues but with God honestly Its all good! I get a peace from God that's so calming. Your so inspiring Marureen, thank you for sharing your story. God bless you and I pray you good health and happiness.
HEAVENLY FATHER I ASK FOR YOUR HEALING HANDS OVER GIBO BODY & MIND IN JESUS MIGHTY NAME AMEN
My husband was diagnosed with Alz and was told there was nothing to be done. Then neurologist saw him and ordered an MRI which showed enlarged ventricles. He is to have a lumbar puncture and PT evaluation. I loved hearing your story. It has given me hope. Thank you
Thank you so much, I was diagnosed in my early 40s, I used to bend over and walk and always walk to the left and hit walls and door ways, I was covered in bruises. I lost my short term memory and after a while
My long term memory. I woke with a head ache every day.
I had anxiety and depression and was always told I was just mentally ill.
I was a doctors every week for help
And it took years before I got diagnosed.
6 months later I was unwell again and a spinal dural AVF was found and I had spinal surgery another serious illness that effected my poor brain.
I just had an Endoscopic Third Ventriculosomy done to treat mine. Seems to be working great. I am really glad I was able to have an ETV over a shunt.
Thank you Maureen. I have NPH and a shunt for a year thanks to wonderful medical care. Your presentation is faboulous and I find so reassuring. I know it will help many many people. Thank you and God bless you.
Thank you Maureen. I am fighting this problem for over a year. I’m also fighting the Drs. I finally found. Dr that would dig in and after two MRI said I have enlarged ventricles. I am having a lumbar puncture next week and hope to finally figure this out. Thank you for Your video It gives me hope
Thank you so much for this story!
Thank you for the clear and friendly presentation ! Your work for making people aware of the possibility of having a hydrocephalus is precious and important . There can be different reasons , like the c - vac. It makes me happy , that you don't give up . Greetings and love from Shanghai ! 👍🌻🌍
Your story taught those medical practitioners to be aware and reevaluate patients for the probability of nph, great
My mom is having the same symptoms, thanks for sharing the video at least we have an answer now 🙏💯🙌
I lost my mother due to NORMAL PRESSURE HYDROCEPHALUS doctors misdiagnosed parkinson's long live your mother
Thank you for sharing your story. I can't say enough how little faith I have in most doctors. They seem to put you in a slot of what MOST people have. Forget about thinking outside the box. I have a skull base CSF leak. They are all for surgery when they can't even see where the problem is. Their thoughts well if that doesn't work we will do another surgery. Thank God you are doing good now. God Bless!
Hi, I would just like to say story on - Life with Normal Hydrocephalus was great. I have had Communicating Hydrocephalus since I was born and I am 55 now. Since I was born i have had to get it replaced because of growing up the tube isn't long enough. Then there was a few cases along the way where it would block and I would have to get the tubing replaced. I haven't had to get the tubing replaced since 2003. Once again, thanks for telling your story.
At what age you got your first shunt and after how many years the 1st one get replaced?
You're amazing, thank you, my friend was just diagnosed and he's so depressed. I'm not sure what to do. I was looking to educate myself on RUclips. Thank you.
Your friend might be interested in our virtual support group. Email info@hydrocephalus.ca if she would like to participate in a support group meeting. We also have facebook support groups. Find them on our Hydrocephalus Canada facebook page. facebook.com/HydrocephalusCanada
Thank you, its a wake up up call for the medics. Its easy to say Alzheimers, stroke, parkinsons, and overlook something less common. Lucky are the people who who have heard your story and followed it up for their spouses etc. which led them to revaluate their diagnosis. Its given them the gift of a new life.
Thank you so much for sharing, I’m having a shunt inserted next week your story has cleared so much up for me and made it all clearer
Thanks so much for your sharing with us. I felt couple yrs ago, I did have an MRI, came NPH, and I saw a neurosurgeon, and he told me that my symptoms are not severe and he will not place the shunt yet.I do have bad spinal stenosis too, my walking is pretty bad, not "Gait" walking, but from my Spine. After swimming I'm feeling better. I'm praying and I believe in Power of Prayer.I don't know what I supposed to do now?
get a second opinion just to be sure👍
LORD I ASK FOR YOUR HEALING HANDS OVER HER BODY & MIND IN JESUS MIGHTY NAME AMEN
Thank you so much for your sharing with us .!
I have the same problem , recently I discovered that I have hydrocephalus, I'm so afraid about the future if I do the surgery.
Please tell me what the complications...!
I found out I have NSF. I kept falling and one time I fell on my head. They did a c scan saw fluid leakage from my brain. My PC doctor sent me to Semmes Murphree in Memphis and I was referred to Dr Wright. He was going to do the shunt I his office but had a hard time with the needle going through my spine to do the shunt. Next visit I am going to the hospital so they can use the X-ray to guide the needle through the scar tissue from my back surgeries.
I was recently diagnosed with NPH my doc don’t seem to be very concerned at the MRI report but he referred me to a neurologist which am waiting to see by the end of this year.
Find a neurosurgeon that specializes in hydrocephalus. They’ll likely test your walking, balance, cognition. Give you a lumbar puncture, drain CSF, then retest you. You’ll be at the hospital for 4 hours or so. If they see improvement, you’re likely a good candidate for shunt surgery. Be strong, fight for yourself, you’re worth it.
Thank you for sharing your story ❤️
The memory and mood swings are also part of NPH, incontinence, depression
Thanks so much for this, all the way from the Caribbean
You are most welcome Keironne. If you are looking for treatment options or support the International Federation for Spina Bifida and Hydrocephalus may be able to assist you at www.ifglobal.org
Mine was discovered very recently when I was admitted to hospital for a recurrent condition called Cellulitis. I am 66. It was then I was introduced to a nice bloke who I call my Baby Brain Doctor. He was wonderful he certainly answered many questions I had. He took the time to explain things to me and my entire family. He reassured all of them that I wasn't just a crazy lady. That I have brain damage from Hydrocephalus. I asked him if he had known me all those years ago would he have put a Shunt into my brain. His answer was a flat out NO. He told me it would have literally killed me. I thought my Mum just didn't want me to have it done. Turned out Mum did know best.
very well done!
I'm so happy I seen this I had NPH since I was a baby. In everyday is a blessing but not knowing what will happen when I get elder that what worries me. Im 30
U will get older by God's grace don't worry. Minimum years to live is 75 and u will get there
Thank you for this story.
I begged my husband neurologist to give my husband a referral for MRI of brain. He did. My husband has floid of brain.
We are so happy to hear our video helped!
My husband is having the shunt tomorrow morning. He had all the symptoms,and started having headaches,was already in a wheelchair trying to move around the house.
Best wishes for success and a speedy recovery.
HI Maureen,
We love your RUclips video and have watched it a few times. My wife age 70 has NPH and has had a shunt operation procedure for almost six months now. But today, she seems to still improve very little. We wonder how long it will take for her to feel much better or do you think she might have the blockage tube. Please shed some light. She will have her second appointment on June end and hope doctor will have some answers too. Thx, I hope you can share some ideas.
thanks for your story I have nph also
I have had all these re symptoms for to years and my Dr said I'm old. I'm 72 years.after 2years I finally found a doctor who new exactljy what I had. I was clueless so I did research and w as surprised that adults could get but i was wrong. Your story in a predictable m Dr to write to you. I t was hopefull.j hope I have a good doctor Dr Bailey Elliott. Paoli hospital.. but I have to wait until October we 5 . Is that too long? I have an autistic so. And I'm a widow. It scares me. I always to outlive my son. If you know a Dr in the states, please let me know. Thank you for tho courage I u gave me to write. Sincerely, Madeline
Brave lady!
Great viideo. Lovely lady.
I’m 75 and 6months ago too fall while walking, broke nose, concussion, etc. had to give up golf since I’m unstable, finally my Dr ordered MRI and they diagnosed me with normal hydrocephalus, Neurological Dr ordered a lumbar function this week, then saw a shrink, appt with neurological Dr again end of month, hopefully Will schedule a shunt, then maybe back to normal
My gait improved after lumbar function, memory little better, worried about shunt surgery, need some words of encouragement
Thanks-John Falcone
Don't worry. It shall be well with you my sister has done it and it was revised many times. Trust God and u shall be fine
Hi Maureen, We would like to contact with you about your experience with the shunt. My wife had her shunt procedure about a year ago but still doesn’t see the improvement. So hope we can talk to you if you allow. Thank you !
Even after 5 yrs of being diagnosed as patient of NPH,none of the neurologist have recommended VP SHUNT SURGERY as such including big hospital like INK KOLKATA & NIMHANS BENGALURU
My gait has been disturbed for ten years. I began having muscle spasms body wide 6+ years ago and the worst was losing consciousness multiple times throughout the day. It looked like I was just falling asleep a lot. I saw the last MRI that discussed sylvian fissure and Prominent subarachnoid spaces bilaterally, and encephalomalacia involving the RIGHT subinsular cortex. My studies show it is normal pressure hydrocephalus.
I have extreme difficulty now having verbal conversation.
What do ya’ll think?
Just diagnosed. I am a 80 years old, whose son describes me as "fit as a fiddle". I assume the symptoms were due to aging. I exercise, walk every day. I am waiting to see a neurosurgeon.. Not sure how long my wait will be. I depend on my son to tell me what the doctors say.what the doctors say.
walking, gait, forget fullness, and some confusion.From Vancouver.
@@betterversionn Yes, and I have to wait until mid February. He felt my symptoms did not justify an invasive procedure at this time. Balance is worse I believe. Cognitive skills still good.. doing Tai Chi has helped with mental clarity and flexibility.
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Thanks mam for sharing your experience , My wife going trhough the same since 1 yrs , neurosergeon tryied his level best , two time shunt replaced , but still she not recover and still she on bed , can you share your book and giude mw somthing on it
What, if any, were the side effects of having the shunt?
I am finally been seen by a doctor who listens to me. I have a brain tumor that’s causing my backup flow in the brain. This dec I am getting a spinal tap and I am scared of getting this shunt
Hi Maureen, thanks for telling the story. Can you please tell me what’s wrong with the tube before it’s changed? Do you know why? Thanks in advance.
If you have this lady's information please send me it,
Thanks joscot7@aol.com.
Hi Kelvin, the shunt tubing is very tiny in circumference and can often become blocked by blood and cells in your body. In rare cases the tubing can also become separated from the valve.
@@sbeaudoinbeaudoin6329 thanks for your explanation. I had vp shunt fitted 2 years ago. The way I sleep often press the valve against my pillow. Will it be ok? Thanks in advance
@@MrKkelvin Hi Kelvin, lying your head on a pillow on the side where the shunt resides should not cause an issue. However, if you have concerns we would suggest speaking to your neurosurgeon.
Can NPH be hereditary?
My only symptom was headaches daily
How bad were they ??? What did you end up doing for them ??
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If you have trouble with balance & brain fog, I encourage you to get a neurologist to do some testing and DO NOT ACCEPT that this is normal aging.
I’m 73 years old. 14 months ago I fell and hit my head and laid in a coma for 7 days before being found. After about a month in hospital and rehab I was sent home. For the next year I kept telling doctors and friends that there was something wrong with my brain. I had all the NPH symptoms but nobody put it together. I finally insisted on seeing a neurologist. Fortunately, after a big battery of tests he diagnosed NPH. I’m optimistic now awaiting surgery for a VP shunt.
Aapko baby huaa ya nhi
I have hydrocephalus NPH my name is Norma kindly pls contact me its my pleasure for ur testimony
How are you doing with shunt implant ?