Share this:

NHP Lady
@nhplady

Posts: 11
Joined: Aug 16, 2011

Normal Pressure Hydrocephalus

Posted by @nhplady, Aug 16, 2011

Would like to communicate with others who are either facing shunt implant surgery or have had this surgery. What was your outcome and what about recovery?

Reply


pattygray
@pattygray

Posts: 4
Joined: Sep 10, 2011
Posted by @pattygray, Dec 6, 2011

My husband had a shunt implant seven months ago following a diagnosis of Normal Pressure Hydrocephalus…what an awful disease!
He is 68 and it has really altered his lifestyle. We have no idea why he developed this – as most people – it’s an idiopathic disease.
I’m not saying you will have the same result, but the shunt did not help his symptoms much.He’s had it checked to see if it’s working right, and it is – just doesn’t relieve his symptoms or reduce the extra fluid as it’s supposed to do.
Sometimes a shunt can get clogged up or you might develop an infection from it, so it may have to be checked periodically.
He suffers with the three “B’s” of NPH – Balance problems, Bladder problems, and Brain problems.
He has a difficult time sitting up on the edge of the bed, for instance, without falling backward or to the side and uses a cane when walking in case he loses his balance(has had many falls before and right after the shunt procedure).
His bladder incontinence requires his wearing undergarments during the day and a condom catheter at night so he can get a full night’s sleep.
He has some memory problems which have resulted in my suggesting the neurologist give him Aricept and Namenda to hopefully keep it from getting worse.
Last week we went to University of AL Birmingham Medical School for a second opinion, but the neurologist basically did what our neurologist in Mobile has done and ended the appt by saying it’s a mysterious disease that can be corrected by the shunt in some cases but not in all .
We may go to Mayo Clinic in FL at some point to get yet another opinion.
The UAB doctor did suggest Parkinson drugs might help with his balance problems; we’ll see.
Good luck to you; the shunt might just be what you need to correct your NPH.
Prayer is the only other thing I know to do at this point.
.


NHP Lady
@nhplady

Posts: 11
Joined: Aug 16, 2011
Posted by @nhplady, Dec 6, 2011

Hello Patty,
I’m sorry to hear that your husband has not had much success with the shunt. I had mine inserted at Mayo Sept.28, 2011. I have had great results with all of the symptoms.
Another friend’s husband had Parkinsons and was treated late into it with the shunt. He did not get much relief either.
Mayo was absolutely fantastic with both the diagnosis and surgery. Dr. Van Gerpen and Dr. Wharren both did extensive testing before they recommended the shunt.
I wish you well and if I could be of any help, please reply.


pattygray
@pattygray

Posts: 4
Joined: Sep 10, 2011
Posted by @pattygray, Dec 10, 2011

Are these the two doctors who have experience with NPH at Mayo?
Is this the FL Mayo or Rochester?
Glad to know you responded well.


NHP Lady
@nhplady

Posts: 11
Joined: Aug 16, 2011
Posted by @nhplady, Dec 12, 2011

Patty, these 2 Drs are at the Jacksonville, FL campus. I have been to Rochester many years ago with my father, but Jacksonville is so convenient since I live in FL now.


Dottie Bru
@dottiebru

Posts: 6
Joined: Dec 15, 2011
Posted by @dottiebru, Dec 16, 2011

I’m a newbie here—about 8 wks ago my husband–age 68–began having episodes of extreme weakness, balance problems, frequent urinations, severe short term memory loss—he has been on aricept for 10 yrs for ‘dementia’. Now MDS are saying hydrocephalus, alzheimers, bradycardia—due to eval in NYC hydroceph clinic Jan 13–also pacemaker Jan 25. From what I understand, the hydroceph. clinic will do a spinal tap & watch him for 3 days to see if it makes adifference. if it does, they will then shunt


NHP Lady
@nhplady

Posts: 11
Joined: Aug 16, 2011
Posted by @nhplady, Dec 16, 2011

Hello Dottie! I know the feelings that you must be having right now. So many opinions and little “for sures”. I am a Mayo patient in Jkvl Fl. In Sept 11, I had the programable shunt put in by Dr. Wharen. I live in central FL and my regular GP is a good listener and sent me for an MRI when I complained of balance, incontinence and memory problems. I am 64 and had just retired because I was getting so tired all the time. The MRI showed enlarged ventricals (too much cerebral spinal fluid.) Dr. J. VanGerpen did several mobility tests and then in June they did the spinal tap. They took out 30cc of fluid and I showed immediate improvement. I could even skip down the hallway the next day. They had video taped me before the spinal and then I had to do the exact same tasks the day after the tap. It was a remarkable improvement and they knew that a shunt would probably be my answer. The Drs at Mayo acknowledged that I was the earliest diagnosed case of NPH they had treated. I feel very fortuniate to have had it caught so early. NPH is often mis-diagnosed as dementia, parkensons and alzheimers. This is not a well known adult malady. But some good Drs. recognize it. 1 day in the hospital at Mayo and home in 2 days. Recovery has been very good. I pray for your husband and I hope that you realize that you have to be your own advocate and learn as much as possible about the problem and the treatment. Please chat with me if questions come up that an experienced patient could answer for you. God Bless


NHP Lady
@nhplady

Posts: 11
Joined: Aug 16, 2011
Posted by @nhplady, Jan 9, 2012

Dottie, what has happened with your husband? I hope all is going well.


Dottie Bru
@dottiebru

Posts: 6
Joined: Dec 15, 2011
Posted by @dottiebru, Jan 9, 2012

Harry’s appointment at the hydrocephalus clinic in NYC was pushed up from Jan 13 to Dec 29. All of my adult children were here so it was GREAT that they could go with us. After 3 hrs of testing & interviews, the doctor did not feel Harry’s symptoms were conclusive that hydrocephelas was causing the problems—-altho the MRI & PET scans showed he definately had enlarged ventricles etc. Next step is to get the records from 10 yrs ago & then make an appointment for a spinal tap. We are having problems getting the records—-not that they can’t find them–but be/c of the ‘privacy laws’. they are refusing to release them. Maybe we will have to show up at Medical records—but NYC hospitals are so overwhelming to us!!! Keep us in your prayers!


Merrilyn
@merrilyn

Posts: 7
Joined: Dec 30, 2011
Posted by @merrilyn, Jan 8, 2012

I had MRI and my Doctor findings were enlarged ventricals. He wants me to get this spinal test. Would it be ok to skip this test and go right into the Surgery? My spinal ta is in three weeks. Thats as soon as they could see me. I feel worse every day. I am so dizzy, forgetful & my balance is way off. Let me know what you think? Thank You, Merrilyn


NHP Lady
@nhplady

Posts: 11
Joined: Aug 16, 2011
Posted by @nhplady, Jan 9, 2012

I had the spinal test also. They withdrew 30cc of spinal fluid. It made a significant improvement that lasted for a couple of weeks, then it was back to pretest condition. I recommend you do what your Dr’s say. We are all so different in the progress of this condition. The Mayo Team, cannot be beat!


Dottie Bru
@dottiebru

Posts: 6
Joined: Dec 15, 2011
Posted by @dottiebru, Jan 9, 2012

unless your doctor is ABSOLUTELY positive that the shunt will be effective, doctors recommend a spinal tap first. In some cases, the shunt does NOT help so doctors want to be sure

Please login or register to post a reply.