Imagine if you had an older loved one- a father, sister, mother, aunt, or grandfather, who suddenly began to deteriorate almost overnight physically and mentally. Imagine if your doctor referred you to a neurology specialist and that doctor could find no definitive answer. Imagine you ended up self-referring your loved one to SEVEN different neurologists before you had a clear diagnosis and solution!
This is what happened to my friend, we'll call her LM and her mother BM. What follows, below the fold, is the story of a very close friend of mine and her attempt to obtain a proper diagnosis and treatment for her mother's condition.
It's a rather timely story given the release of Michael Moore's documentary on the healthcare crisis we have in the USA. My friend's mom has excellent health insurance, but even so, my friend's father has always feared hitting the lifetime maximum in payout.
So, what is NPH, and why should you care about the experiences of my friend and her mom? Because it highlights how on-our-own we our in getting proper treatment even when we have solid insurance. An abbreviated chronicle follows below.
Approximately two years ago, BM was involved in a care accident as a front-seat passenger. Air bags deployed and all. BM, being around 70 years of age, fortunately suffered no obvious injuries.
However, within the first two weeks following the accident, BM exhibit problems with motor skills and coordination. A visit to her doctor revealed nothing out of the ordinary, although it was suggested she take on a physical activity regime to improve her strength and health.
With this advice, LM started BM on a 3 day per week fitness program at the new local and state of the art WMYC club. While this new health regime proved beneficial, over the months, BM continued to deteriorate after a short few months. By early this year, she could not longer walk by herself, and her cognitive abilities had been reduced to one word answers. Yes/No. Started 'fixating' on some event or idea and would not shut up about it.
More tests, more doctors, but none had an answer. The most common was that BM was suffering from a form of Parkinson's ('Parkinson's Plus').
Through researching on the internet, LM offered up to the many neurologists to consider NPH (Normal Pressure Hydrocephalus). Her thoughts fell on deaf ears until they arrived at the Cleveland Clinic.
Fortunate for them, they live in a Cleveland suburb, so a visit to to the Cleveland Clinic is pretty easy and normally covered by insurance, if you have it.
They were seen by Dr. Mark Luciano, an expert in NPH. Following an patient exam and consultation, he scheduled BM for the NPH 'test'. The 'test' is a three day inpatient procedure. BM had a needle inserted in her spine and the nurses removed one cc of spinal fluid each hour of her stay.
What happened? As LM and her family have said, a 'miracle'. I'm not a god fearing believer so I chalk it up to competent medical care. Almost immediately from the first few hours having the spinal fluid drip test, BM was her old self carrying on indept conversation and actually understanding . LM and other family members were crying with joy. "Mom" was back! Obviously not 100% yet, BM was definitely reversing from the onset of her symptoms. Her mind returned first, while her motor skills, while improved, were coming later-- just the reverse of how she had been afflicted.
In August, Dr. Luciano will implant a permanent 'shunt' into BM's head. If the results of the drip test are any indication, BM will be back to her full self in mere days. That would be a good thing too because she's been upset that her meticulous maintained gardens are not up to her standards. :)
So, consider NPH if you have a loved one suffering. NPH used to be though of as a young persons disease (water on the brain). It's now just recently being acknowledged as afflicting older people.
But the big nasty here is this. It took going through seven neurologists until my friend and her family found the doctor who could identify and treat BM's problem. How many patients have ended up in nursing homes because the patient lacked family or lacked family who would not give up?
NPH:
http://www.clevelandclinic.org/...
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BTW, I am not a medical care professional, nor do I play one on the 'internets'. Please take this diary as just a way to educate yourself that doctors do not know everything and sometimes you can help by doing your own research and finding the right doctor.