I should have called my neurologist sooner

My surgeon suggested I call him. I never thought that there was a drug that could increase my CSF. But believe it or not there is. I was told by no means this would fix my problem but it would help me get through to surgery. I can't believe it! I'm not bouncing off the walls but I do feel some better.

August 16th

The Date has been set. I'm already doing post op stuff to get it out of the way. Then the day of surgery I will have a load more to do. I already got some of the paper work in the mail today...

So this is what the shunt gram told Dr. M I do have over draining. Which means my shunt is working too well. In the past CT scans in Asheville the doctors said my vents looked slit. Dr. M does not think they are completely slit or clasped but an anti syphon device would help to correct the problem and slow down the over drainage.

Rose colored sun glasses

I have been so down in the dumps laying around the house trying to keep this headache calmed down. Yesterday I broke down and decided I wanted to go out for a little while and I'm really glad I did.

As I have blogged before anyone that has headaches fron hydro or brain injury rose or pink sun glasses will help your headache. They really help in stores with really bright lights.

I found 3 pairs of sun glasses. 2 rose colores and one nearly red pink. It was a good think I went out.

I stock pile my glasses to have them in different places. I will have a pair in my car. A pair in my moms car around on my mule.

Everybody keep me in mind if you don't have headaches. If you see some drop me a line I am always worried about breaking my favorite pair.

It's Friday!!!

Cross your fingers for me!!! I know Dr. M is seeing Penitents today. So I am hoping between patients he will look at some paper work and maybe make some call backs.

Yesterday I got a nice scare. I started with the head rushes of pain when I get up. This usually sends me to the ER. I got lucky and got enough of my own medicine to calm it down enough to keep from going nuts.

I know it has something to do with the over draining but what I don't know? That is what I am hoping the shunt o gram will tell.

So I'm hoping today will be the day. It has been 2 weeks now since my test. I was hoping to have had surgery by now. I even had my hair cut down real short so it would be easier to deal with after surgery. I may need it cut again before then.

WOW!! I'm missing out

It has been a beautiful hot summer. I had plans to go to the pool with friends. I have not got to do that. I had plans to work in my gardens I have not got to even see my flowers bloom.

I don't want to blog poor little me. But I have missed out on 7 weeks of my life waiting and I'm not mad at my Dr. He can't help there was an isotope shortage for over 4 weeks. I finally had my shunt gram and I thought I would be in surgery with in a week but two weeks later I have not heard from my doctor.

Something is wrong it has never been this long. I know they recently merged with the hospital system and he was on call for over a week. But I don't know what to do. I don't want to be a bad patient. But I'm really confused. I have no life. I have had to lay flat in bed since March. I know others are hurting and worring with me with their own hydro problems. But what do I do?

Update on my fatigue and headache

I have been having terrible luck with the shortage of isotope for my shunt o gram. I just found out my surgeon has been on call for a week or more now. Friday was 7 working days since my test. I'm hoping to hear something at the beginning of the week.

I went to the drug store the other day (I'm not driving) I thought I was not going to make it through there because the lights made my headache worse and just trying to stand in line was exhausting.

I am getting so depressed with not feeling like doing anything. I know things could not be helped but more than 6 weeks of holding a bed down is driving me nuts.

Articale I found by Jimmy Nowells on NPH

What are the Signs of Normal Pressure Hydrocephalus (NPH)Posted Jul 08 2009 9:55am


Previously, I wrote an article about Jimmy Nowells. Jimmy was diagnosed with Parkinson's and then Alzheimer's. After ten long years of misdiagnosis-- and thanks to his daughter--Jimmy was correctly diagnosed with Normal Pressure Hydrocephalus (NPH).

If you would like to read about Jimmy's incredible story go here-- When Alzheimer's isn't Alzheimer's -- It's a Miracle.

Here are the signs and symptoms of Normal Pressure Hydrocephalus

Subscribe to The Alzheimer's Reading Room

What Are the Symptoms?
Normal pressure hydrocephalus is usually characterized by a three symptoms:complaints of gait disturbance (difficulty walking)
mild dementia
and impaired bladdercontrol.
These symptoms may not occur all at the same time. Sometimes only one or two of the symptoms are present.

Gait disturbances range in severity from mild imbalance to the inability to stand or walk at all. Gait is often wide based, short-stepped, slow and shuffling.

People with NPH may have trouble picking up their feet, climbing stairs, getting up a curb, and experience frequent falls.

They may have difficulty turning around, and turn very slowly with multiple little steps.

Gait disturbance is often the most pronounced symptom and the first to become apparent.

In other words, if you notice a love on is having problems walking, or the sound of their feet on the ground changes, you should be concerned.

Most of the above symptoms occurred with my mother. Just about everyone said the same thing--she is getting old.

Mild dementia (mild cognitive impairment) can be described as a loss of interest in daily activities, forgetfulness, difficulty dealing with routine tasks, and short-term memory loss.

The cognitive symptoms associated with NPH are usually less severe than full-blown
dementia, and are often overlooked for years or accepted as an inevitable consequence of aging. People with NPH do not usually lose language skills, but they may be less
aware of their deficits than those around them, and may even deny that there are any problems.

Not all individuals have an obvious cognitive impairment. In mildly affected
cases, conversational skills may be preserved and thinking abilities may be relatively unchanged. In some cases, cognitive changes may only be detectable with formal neuropsychological testing.

Impairment in bladder control is usually characterized by urinary frequency and urgency in mild cases, whereas a complete loss of bladder control (urinary incontinence) can occur in more severe cases.

Urinary frequency is the need to urinate more often than usual, sometimes as often as every one to two hours. Urinary urgency is a strong, immediate sensation of the need to urinate. This urge is sometimes so strong that it cannot be held back, resulting in incontinence. In very rare cases, fecal incontinence may occur. Some people
never display signs of bladder problems.

Symptoms of NPH can also resemble those of other conditions affecting the elderly.

For example, t he cognitive deficits of NPH can resemble those associated with early Alzheimer’s or dementia. The gait disturbances of NPH can look similar to those of Parkinson’s and Alzheimer's.


Bob DeMarco is an Alzheimer's caregiver and editor of the Alzheimer's Reading Room. The Alzheimer's Reading Room is the number one website on the Internet for advice and insight into Alzheimer's disease. Bob taught at the University of Georgia, was an executive at Bear Stearns, the CEO of IP Group, and is a mentor. He has written more than 700 articles with more than 18,000 links on the Internet. Bob resides in Delray Beach, FL.


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Ref: Hydrocephalus Assocation

You are here: Home » Education & Support » Learning About Hydrocephalus » Life-Threatening Complications

Life-Threatening Complications
Hydrocephalus is almost always treated successfully with surgical placement of a shunt or an ETV; but rarely does either treatment last a lifetime without complications. A critical aspect of managing hydrocephalus is being well informed and staying vigilant about potential life-threatening complications. Most problems associated with shunting or ETV occur weeks or even years after the surgery. When things are going well, it is easy to forget about hydrocephalus and having a shunt or an ETV. We encourage you to stay alert and informed. Feel free to call or email the Hydrocephalus Association for more information about any of the complications listed here.

Knowing what symptoms to watch for will help you become more at ease. Although the early symptoms of shunt malfunction or infection in children—fever, vomiting and irritability—are similar to many childhood illnesses, you will learn to determine the symptoms associated with shunt failure in a particular individual. Adults tend to exhibit the symptoms they experienced before treatment when there is a problem. If you have any doubt about symptoms, don’t hesitate to contact a doctor. If you suspect there is a problem with the shunt, you are wise to have it checked by the neurosurgeon rather than ignore it. It is better to have a false alarm checked than to leave it unattended. Remember, although shunt complications can be very serious and become life threatening, they can almost always be treated successfully when they are discovered early.

An estimated 50% of shunts fail within two years and 20-50% of ETVs close up within five years. Either treatment can fail at any time. Infections are less common, but still not infrequent. Be informed and vigilant. Be prepared to act quickly. Mere hours can mean the difference between a resolvable complication and brain damage or even death, especially in children.

■Shunt Malfunction
■Shunt Infection
■Other Shunt Complications
■Important Related Conditions
■Signs & Symptoms of Shunt Malfunction or Sudden Closure of ETV
■Signs & Symptoms of Shunt Infection


Shunt malfunction is usually a problem with a partial or complete blockage of the shunt. The fluid backs up from the site of the obstruction and, if the blockage is not corrected, almost always results in recurrent symptoms of hydrocephalus. Shunt obstruction can occur in any part of the shunt. Most commonly in children, the ventricular catheter (the one in the brain) becomes obstructed by tissue from the choroid plexus or ventricles. In adults it is more often the distal catheter (the one that drains the fluid to another part of the body) that becomes blocked. The catheters or the valve may become blocked with blood cells or bacteria. Shunts are very durable, but the components of the shunt can become disengaged or fractured as a result of wear or as a child grows, and occasionally they move from where they originally were placed. More rarely, a valve will fail because of mechanical malfunction.

Shunt infection usually is caused by a person’s own bacterial organisms; it is not acquired from exposure to other children or adults who are ill. The most common organism to produce infection is Staphylococcus Epidermidis, which is normally found on the surface of the person’s skin and in the sweat glands and hair follicles deep within the skin. Infections of this type are most likely to occur one to three months after surgery but may occur up to six months after the placement of a shunt. People with ventriculo-peritoneal (VP) shunts are at risk of developing a shunt infection secondary to abdominal infection, whereas people with ventriculo-atrial (VA) shunts may develop generalized infection, which can quickly become serious. In either case, the shunt infection must be treated immediately to avoid life-threatening illness or possible brain damage.

Other Shunt Complications may include the shunt system draining fluid at the wrong rate. Overdrainage of the ventricles can cause the ventricle to decrease in size to the point where the brain and its meninges pull away from the skull or the ventricles become like slits. If blood from broken vessels in the meninges becomes trapped between the brain and skull, resulting in a subdural hematoma, further surgery is required. This is most common in older adults with normal pressure hydrocephalus (NPH). Slit-like ventricles, sometimes called slit-ventricle syndrome (SVS), are most commonly a problem in young adults who have been shunted since childhood. Underdrainage of the ventricles can fail to relieve the symptoms of hydrocephalus. To restore a balanced flow of CSF it may be necessary to place a new shunt containing a more appropriate pressure valve. For those who have externally adjustable or programmable valves, the balance of flow can often be restored by re-setting the opening pressure.

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Slit Ventricles:
When the ventricles get too small, usually due to too much fluid drainage over time, they become like slits. This only tends to happen in those shunted since early childhood and can manifest either in childhood or young adulthood. Symptoms include severe intermittent headaches, characteristically lasting 10-90 minutes that are often relieved when lying down, and smaller than normal ventricles on imaging studies. Some doctors refer to this as slit ventricle syndrome (SVS). Patients may be asymptomatic for prolonged periods. Most often the condition responds to intervention and most shunt manufacturers have shunt hardware designed to address the problem.

Multiloculated Hydrocephalus:
The term “multiloculated hydrocephalus” refers to the presence of an isolated CSF compartment or compartments within the ventricular system that may become enlarged despite a functioning shunt. It is most often caused by birth trauma, neonatal intraventricular hemorrhage, ventriculitis, shunt related infection or overdrainage. Because the condition is usually in infants and children who are already neurologically compromised, it can be difficult to recognize. Among several of the operative treatments are multiple shunt placement, multiperforated ventricular catheters, craniotomy and fenestration of intraventricular septations.

Seizures and Hydrocephalus:
Seizures are not an uncommon occurrence in people with hydrocephalus. However, no correlations have been found between the number of shunt revisions or the site of shunt placement and the risk of developing seizures. Past studies have shown:

■Children who have been shunted for hydrocephalus and who have significant cognitive delay or motor disability are more likely to develop seizures than those without cognitive or motor delays.
■Seizures are not likely to occur at the time of shunt malfunction.
■The most likely explanation for the development of seizure disorder is the presence of associated malformations of the cerebral cortex.
Abdominal Complications:
The peritoneum (belly area) is the most popular site for the distal catheter implantation. Although ventriculo- peritoneal (VP) shunts do not have fewer complications than ventriculo-atrial shunts, the complications are less severe and associated with a lower mortality rate. However the peritoneum is not immune to specific complications. Abdominal problems represent a good number of VP shunt complications including peritoneal pseudocysts, lost distal catheters, bowel perforations and hernias that require special attention.

So many don't know

I had hydrocephalus for 20 years before I ever heard the word. I did not know I had a condition until I started having complications in 2001. I still did not. Hear the word I saw it on diagnosis papers of mine. This was in 2003 and I had just had my second doctor tell me there was nothing wrong.

Last night I was talking to my niece telling her about my condition and how so many people don't know what it is. That is when I told her I had it and did not know what it was called. Honestly I was one that was told the shunt probably did not work any longer.

She told me about in school they were reading a book and hydrocephalus was named and the teacher instead of setting an example by looking the word up said "What the heck?" My niece. said she,11years old could not believe a teacher did not know what it was. My niece could even tell that Rev. Billy Graham has a type of hydrocephalus.

Talking to my niece I realize if no one else reads my blog she does and this is how we teach others about this condition one child at a time.

Waited half the day...

Then about noon I took Casey's advice and went to lunch with my mom to try to get my mine off the waiting to see if it would help any. It did make the evening go faster but still no phone call. Riding in the car once again caused more of a headache it must have to do with the over drainage.

I do know from my friend having surgery Dr. M was on call this weekend so he may not be in the office for a few days. isn't wild how I can keep tabs on my doctor through my friends. She saw him Friday and mentioned my name. I wonder if he thinks we have our own personal schedule. Hey!?! That's not a half bad idea. I Wonder if he would go for it... Dr.M totally joking:)

Some hydrocephalus information

Shunt Operation Statistics■About 40,000 shunt-related operations are performed every year in the US for hydrocephalus—that averages out to one every 13 minutes and over 100 every day.
■Shunt operations for hydrocephalus cost over $1 billion a year in the US.
■50% of shunted individuals require a revising operation within two years.
A second treatment option is a surgical procedure called endoscopic third ventriculostomy (ETV). An endoscope is used to puncture a membrane in the floor of the third ventricle creating a pathway for CSF flow within the cavities in the brain. ETV is an important alternative to shunting for obstructive hydrocephalus and may be useful in other cases as well.

For more information on ETVs download a free pdf.


Unlike many other operations in which the risks are highest during the surgical procedure, most problems associated with shunting occur weeks or even years afterward. Shunt obstruction and malfunction occur in approximately one third of children in the first year after a shunt-related operation and studies have shown that ETVs can close up after time. We cannot overstate the importance of learning the signs and symptoms of treatment failure. Staying in close contact with neurosurgeons if you have a shunt or an ETV is critical. Please click here to read about serious complications that you should be informed about.

Links and support groups

I like adding support groups and new links to my blog. If you would like to be added let me know. I just updated the link to " Brain Talk" when I first started having complications I searched everywhere for help and answers that is the reason why I have them here to share now.

If I can help one person I feel good. I feel like I have done what I am suppose to.

Depressed

I worked so hard losing 33 pounds and still have more to loose. but in the past 6 weeks of not being able to exercise... I'm gaining back!!! I knew with not being able to exercise I would. The first few weeks I was not gaining then I suppose I got to feeling bad for myself and started eating some comfort food like pizza and Mexican. I've gained 6 pounds. I feel so bad. I worked so hard to get this weight off now I'm gaining it right back.

I hope to hear from my doctor by tomorrow. I want to get this surgery scheduled. I can't gain this weight back I worked too hard to loose it!!!

A little bit of everything

I know we have discussed this before but I'm going over it again. My parents have been trying to keep my house clean with doing their own house work. My mom is disabled and my dad is simi-retired and not in the best of health. But they are doing their best to help me. But the deep cleaning is really getting to me. I have had to lay in bad for 6 weeks now and my house is getting on my nerves.

I had somebody cleaning for a long time but you know how that goes. I told my BFF yesterday I had her cleaning bug. I made myself not bend over to clean. Because that knocks my shunt levels off real bad for some odd reason. I Started in the kitchen and did the counters. When my headache went up a notch I went and lade down and took some headache medicine.

This morning I'm paying for doing my cleaning yesterday. I'm having a nice headache day. I just got a call that my handyman will be here Monday to put up my ceiling fan in my bedroom. That means I got to clean headache or not. I have got to find a house cleaner that does not charge $75 a week!!!

I forgot to add I washed and dried 2 loads of clothes in my washer that is dying. I really need that replaced before I have surgery. It's churn is on slow mo... I would really like to find a price match where I could get about $100 or $150 knocked of plus 10%. As you see I shop for deals.

The past 6 weeks I have really been slacking on my coupons. I get really excited when I save allot.

Wonder if a cleaning lady would take coupons?

Pepper has a cat

As some of you know Ginger is loved as much as Pepper but she is allot Pepper's cat. She is his companion and mine too. Well to improve her litter box I got her a Cat Genie several months ago and just now getting it put in. It is going to make life so much nicer and cleaner. No more litter. So now let us convince Ginger...

Six year old kitty on strike!!! I'm having to potty train her all over again. There in no nasty litter so no nasty smell to hold her urine smell. So this morning she thought she would show me... so she quit eating. Every time I picked her up she would meow. ( laughing) So at dinner I gave her fresh food. She was so hungry.

She broke down and did go do "number 1" but I still have a constipated cat! I know it it is wrong to be laughing and telling about my baby. But I need a laugh and I'm sure my blog readers do too. She is getting there. If she could just understand how much cleaner it will be.

I always said when I got the chance I would upgrade to the better litter box. Well my self cleaner number 6 finally died so now I have it. Hope it was worth it. I know I will enjoy not carrying litter.

No call from Dr. M

I was just hoping since it was a long weekend and all that maybe... just maybe I would get a call about my test results. I have heard everyone cerebrate: Yea!!! It's Friday!!! Yea!!It's A long week end!!! Don't get me wrong I really am great ful for you all and been there with you many times before. But I am so stress my head is going to explode.

And the wait goes on...

Every time the phone rings I jump to see if it's my doctor. It has been 48 hours since the test. I know it is a bit soon to be expecting to hear from the office but it could happen. I tried yesterday looking up information on nuclear isotope study to take my mind off things plus it would be good for the blog. I kept getting heart shunts. Plus my penitents was worn thin. I will try again another day. I would really like to put up a good definition of shunt'o gram.