Current mood:
I finished a book last night that has taken me a bit of time to get through. Only because I have 5 books going right now...
The book I just finished is called Another Day in the Frontal Lobe: A Brain Surgeon Exposes Life on the Inside by Katrina Firlik. The book is about her time as a resident. The very last chapter and very nearly the very last page she talks about surgeries that can be very satisfying for a brain surgeon, and one of those is the treatment of NPH. As I read those last few pages my heart was pounding and I could feel the blood rushing through my head. NPH stands for Normal Pressure Hydrocephalus which is a fancy term about the body not absorbing brain fluid as quickly as it's produced. It occurs mainly in older people and is often mistaken for dementia, parkinson's disease, alzheimer's or cretzfeldt-jakob disease. My mother has been said to have each of these at one time or another (except the last one which I never heard of before).
There are three simple things to look for that can indicate the person has NPH....
1. Memory problems
2. Walking or gait problems
3. Incontience
ALL THREE OF THESE APPLY TO MY MOTHER!
What is the cure (or possible help)? Shunt surgery. A shunt is placed in the head to allow the excess brain fluid to flow to the abdomen and be absorbed by the body. The results of this can be amazing.
So now I am excited but confused. If this procedure did nothing more than allow my mother to actually enjoy reading a book again, I think it would be worth it. I hate that there is absolutely nothing that can entertain her anymore and yet she does know where she is and who I am and wants to very very badly to come home. I just wish we were still someplace that she had a regular doctor. At least then I would have a place to start. Not to be rude, but I just don't think the nursing home doctor is going to be much help.
Betsy,
I hope you were able to see the great piece that Good Morning America did this morning, 11/6/08, on NPH.
They actually interviewed a doctor from the Cleveland Clinic that works with NPH patients.
While he was talking he described your mom to a "T".
I hope you will consider having your mom checked out for this very CURABLE disease.
Good Luck and I will continue to keep you and your family in my prayers.
Hugs,
Jeannie
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2 years agoBetsey,
I have seen many people who have been diagnosed with NPH. The surgery is amazing.
I would definetly talk to mom's doctors and at the very least ask them to consider this as a possible diagnosis rather than dementia, parkinson's disease, alzheimer's.
Creutzfeldt-Jakob Disease (CJD) is a rare, fatal brain disorder. The statistical incidence of CJD cases in the United States has been revised to reflect that there is one case per 9000 in adults age 55 and older. Eighty-five percent of the cases are sporadic, meaning there is no known cause at present.
"In the early stages of the disease, CJD patients may exhibit failing memory, behavior changes, impaired coordination and/or visual disturbances. As the illness progresses, mental deterioration becomes more pronounced, and involuntary movements, blindness, weakness of extremities, and, ultimately, coma may occur. sCJD usually occurs later in life, and typically leads to death within a few weeks or months to one year following the onset of symptoms - in the United States, the mean age of death from sCJD is 67 years."
There are three types of CJD:
Sporadic (sCJD)
Familial (fCJD) - Genetic
Acquired:
Latrogenic Contaminated Surgical Instruments
Contaminated Dura mater transplant
Contaminated Corneal transplant
Contaminated Human Growth Hormone
Contaminated beef (vCJD)
The sporadic form (meaning from unknown cause) is the prevalent form in the US-85% of cases. More information can be found in the CJD pamphlet. As of August 2005 there are no known cases of endemic vCJD (ingestion of contaminated beef) in the U.S.
Diagnosis of CJD is very difficult and often happens through a process of elimination of other diseases. The diagnosis of CJD can only be confirmed through a brain biopsy or autopsy. Cerebral spinal fluid testing positive for the 14-3-3 protein is often used to confirm a possible diagnosis, this test, however, can be inconclusive.
There is a wonderful foundation for CJD.
As for the NPH the is a wonderful program in Wisconsin. Froedtert & The Medical College of Wisconsin you can contact them at 414-805-3666 or 800-272-3666 and they can answer all of your questions.
What is the worst thing you can be told when speaking to her physician. There are other options you can look in too. She is your mom and you have every right as her daughter to check everything out there can could possible allow her to live a much better quaility of life. I hope the information I am giving you will at the very least give you a few options.
Mom is a very lucky lady to have such a wonderful daughter that is always looking out for her and always there to provide the very best for her.
Please feel free to let me know what you find out.
Lots of love and hugs to you.
~ Jeannie~
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2 years agoVery interesting write about NPH Betsy....I've never heard of it but you might want to pursue the treatment thru the Mayo Clinic (www.mayoclinic.com) I agree with you that a nursing home dr. even tho with the best of intentions...is just not going to be able to help much.
Mayo Clinic may be able to direct you to a list of doctors and their locations so you could consult with them on your mom. It used to be you had to travel to Rochester, MN to get treatment at Mayo, but now they have so many branches in major cities that it's amazing. It'd be worth a shot to email them about it...I'm sure they'd respond. WHO KNOWS, there are two or three right here in Phx and you could stay with me whilest your mom has the surgery. Put that book info to work for you. I believe that God gives subtle 'nudges' in answer to prayers, and this might just be a slam-dunk.
Fondly,
Dorothy
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2 years agoScience is an amazing thing and new discoveries are made daily. Too bad things like this are not widely known. Do some more research online and see if you can find a doctor in your area that knows about this NPH... hell it is worth a shot!
Know you are loved dear.
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2 years agoThank you Kari, I'll be doing that!