Normal Pressure Hydrocephalus

[bevandmilt]

My mom had surgery to implant a programmable shunt to control her NPH on July 2. The surgeon told us all went well. Three days later she is in the NICU with a severe infection. The end of the shunt penetrated her small intestines and for 3 days infection worked its way up the shunt into her brain. She had a tremendous amount of body tissue removed and 4 open wounds to drain the infection. She has been in a coma since July 5. Has anyone else ever heard of situations like this one? I am at my wits end. The doctors will not tell me anything. They always say "her wounds are healing and look good". The hell with the wounds. I am worried about the damage to her brain.

[kts]

Wow, it certainly does sound like a disaster. I would ask the doctors directly what the status is of your mom's brain function. Sounds like she had a brain infection which will hopefully respond to antibiotics. I would imagine the younger she is the better off she will do. I wish you and your Mom strength and good luck.

[jan]

MY MOTHER WAS JUST DIAGNOSED WITH THIS THIS WEEK FOR 10 YEARS WE THOUGHT SHE HAD ALZHIMERS, NOW THEY DO THIS TEST ON THIS AND TELL US SHE HAS THIS, THIS IS ALL NEW TO US WE JUST FOUND OUT TODAY. SHE HAS VERY SHORT TERM MEMORY AND CANT DO VERY MUCH AND ALL THIS TIME WE THOUGHT IT WAS ALZ. BUT NOW I READ YOUR STORY AND IT SCARES ME SHE IS HAVING SERGERY IN 2 WEEKS WE WERE SO HAPPY THINKING SHE WOULD GET HER MEMORY BACK AND FUNCTION BETTER . IT JUST SOUNDS ALL TO GOOD TO BE TRUE! I AM SO SORRY ABOUT YOUR MOM I HOPE SHE IS GOING TO COME OUT OF THIS OKAY. IM JUST TRYING TO GET INFORMATION ON THIS AND AM WONDERING IF SHE IS GONA BE BETTER AFTER GOING THROUGH THIS. IF ANYONE HAS A SIMILAR STORY ID LIKE TO KNOW WHAT THE OUTCOME WAS AFTER SURGERY. THANKS

[Ajeh]

It as taken us over 2 years to finally get a definative diagnosis of NPH. We asked doctors for the past year and a half if mom had NPH, only to be told no.

Mom is having surgery in 48 hours. Her drain testing was very positive as were the life stories of dozens of NPH patients that we have talked to over the last few months.

While infect can occure, this is not a common occurance. There can be many causes.

The value of life with NPH and not obtaining the shunt is not really life. Anything can go wrong in a surgery ... but how much can go wrong without the surgery?

Yes, it's scary ... it's mom ... but then I have to pause to think ... Is it mom without the surgery? Is this the life she wants to live? Or, would she want the chance?

Too many have been ALZHIMERS or PARKINSONS or PAKINSONISM diagnosises or told Never come back, there is not cure ... there is no hope ...

Thank God that we never gave up on seeking the cure, despite being told we had no idea what we were talking about.

So yes, I am scared ... as I would be of any surgery, including dental surgery, but I want my mom to have a chance to return back to a quality of life she once had ... and she wants that too.

Good luck with your mom. My thoughts are with you.

[esabine]

Our mom had a similar background with many misdiagnosed conditions of early Alzheimer's, but then on formal testing this was ruled out, as was Parkinson's -- though she sure looked like a Parkinson's shuffled walk.

We insisted on a brain scan, got it, and had her admitted for the spinal testing procedure .. that was worse than the surgery, but did produce immediate results with her speech, walking, color, alertness with a matter of 6 hours!

That was enough for us to vote 'YES' full steam ahead to a possibility of a pleasant life after having a Codman programmable shunt implanted. That surgery was done at Duke in late July. Shortly after surgery, she went through about 72 hours of regression to her former Alz-like state, but then within 3 weeks (yesterday) she improved amazingly!

Her inbound self was depressed, wheelchair bound, exhausted, confused and foggy. Her first followup visit with her surgeons office yesterday after the implantation reflected a walking, no falling, smiling, sharp, bright and beautiful looking woman again! We are proponents, and believe that there are MANY more than just 5% of Alz patients that are simply suffering from NPH.

God bless the researchers the surgeons certified to do this procedure and the nurses that understand what's going on within the family during the pre-surgical period, then the post-surgical temporary disappointments. Believe! Believe! A month after surgery, we have our mom back and she has her life back. This is truly a medical miracle with God's hand in it.

[Suzannexs]

That is a fascinating story, Esabine. I work with the Hydrocephalus Association in San Francisco and one concern we are trying to address is the number of misdiagnosed and undiagnosed NPH patients. I would love to write a short story about your mother to put on our Web site, or possibly to include in a press release. If you are interested, please e-mail me at: Suzanne@Hydroassoc.org. Thanks.


quote="esabine"]Our mom had a similar background with many misdiagnosed conditions of early Alzheimer's, but then on formal testing this was ruled out, as was Parkinson's -- though she sure looked like a Parkinson's shuffled walk.

We insisted on a brain scan, got it, and had her admitted for the spinal testing procedure .. that was worse than the surgery, but did produce immediate results with her speech, walking, color, alertness with a matter of 6 hours!

That was enough for us to vote 'YES' full steam ahead to a possibility of a pleasant life after having a Codman programmable shunt implanted. That surgery was done at Duke in late July. Shortly after surgery, she went through about 72 hours of regression to her former Alz-like state, but then within 3 weeks (yesterday) she improved amazingly!

Her inbound self was depressed, wheelchair bound, exhausted, confused and foggy. Her first followup visit with her surgeons office yesterday after the implantation reflected a walking, no falling, smiling, sharp, bright and beautiful looking woman again! We are proponents, and believe that there are MANY more than just 5% of Alz patients that are simply suffering from NPH.

God bless the researchers the surgeons certified to do this procedure and the nurses that understand what's going on within the family during the pre-surgical period, then the post-surgical temporary disappointments. Believe! Believe! A month after surgery, we have our mom back and she has her life back. This is truly a medical miracle with God's hand in it.[/quote]