When shunts "die of old age"

[LIZARD]

Hey, all. :)

Kathi's comment re shunts and ETVs made me think of this. Those of us from the first generation of hydro survivors are middle-aged now, and a fair number have had at least one shunt last 25 years or longer, which is way beyond what most nsgs have seen in the majority of patients. I suspect most of them are unaware that this is a growing phenomenon as we age and am thinkng that we need to bring it to the attention of HA and NHF (as well as smaller groups) that they need to assist us in making nsgs out there realize this is an important enough issue for them to educate themselves about it. One thing I'm hearing about patients with older shunts who experience failure is that calcification occurs, bringing on gradual symptoms of failure which can take weeks or months to complete, and because there is no blockage, they can CT and MRI us to death but will never find anything until we're (literally! :eek: ) opened up and dealt with. Perhaps "first-generation hydrocephalus" needs to be a nsg subspecialty? What do we need to do to open the nsg community's eyes to this?

It has never been shown to be possible to live from infancy to normal life expectancy with a single shunt, partly because the oldest of us are only in our 50s, with rare exceptions, but also because the shunt's material isn't durable enough. Our doctors need to get this.


Thoughts??

LIZARD :)

[CoolAngel28]

Hmmm..actually,I never really thought of that,Liz..

Things that make you go hmmm,about the mystery of shunts.;)

[Braindrain]

A couple of things about shunt surgery need to change, though. For one
thing, in addition to the usual CTs and MRIs, I think a shunt study should
be done when a patient is having problems. If nothing shows on CTs and
MRIs, but the patient is having symptoms that indicate shunt failure/blockage,
a shunt tap should be done to determine if the shunt is actually blocked.
This shouldn't be a "follow-up" test, it should be done in conjunction with
the other scans.

Also (and I know we talked about this before, Liz:) ) I think that we should
be seeing our neurosurgeons annually, just like we see our regular doctors.
If we wait until we're "having problems", it may be too late. We may not
need to have scans done every time we visit, but at least the NS will know
how we're doing and if we're having any problems that mean we need some
further testing done.

Truthfully, I didn't start seeing an NS until my surgery in '94. Prior to that,
I hadn't seen an NS since I was 2 or 3 years old. If I'd had a regular NS
while I was growing up, s/he might have recognized the symptoms and
performed a shunt revision earlier. JMO

[KathiDG]

It has never been shown to be possible to live from infancy to normal life expectancy with a single shunt, partly because the oldest of us are only in our 50s, with rare exceptions, but also because he shunt's material isn't durable enough. Our doctors need to get this.


Thoughts??

LIZARD :)

Exactly my point...even my NSG's PA said that basically, not much is known about hydro that wasn't known 30-40 yrs ago....to think that, had I been born 1 or 2 generations before 1977, I may have been sent home to die is just crazy....I *just* turned 30 a few weeks ago...had I not basically YELLED at and bugged my neurosurgeon to death, I probably wouldn't have a new shunt right now and been stuck with that old thing until God knows when...

I finally got the full story -- doc was trying to pull the shunt out during the revision in Aug, but over the years, my brain kind of integrated the shunt and grew around it, so I started bleeding....he stopped tugging and just left it. I don't know how calcified or IF it was calcified, all I know is he was afraid he wouldn't be able to stop the bleeding and STROKE was a big risk for me because the shunt was that old...it was basically going *putt putt* every now and then, but shutting down...

We gotta make the NSG's aware that just because a patient might not have had a shunt problem in 20 or dare I say 30 something years, it doesn't mean that a patient has Arrested Hydrocephalus or anything like that.

I absolutely HATE to hear that term being brought up (in most cases), ESPECIALLY with an adult...Arrested Hydro in itself is rare, but in an Adult, I think it's actually next to impossible IF they've been shunted all their life.

They can do all this studying on NPH -- several years ago, you never even heard anything like that, right?? So, why can't they take the focus/study techniques they did on that subject and apply it to the CONGENITAL hydro patients? 18 yrs old is NOT the end of congenital hydro. For a lot of us, it's only the beginning. How do we get them to figure this out?

I don't want to have a son/daughter with hydro 10 yrs down the line and have the doctors say "He's not going to make it. It's hopeless...", just because he/she might be the worst case the've ever seen....I would rather the MD's get this down pat BEFORE that happens. Not saying that I'll have a child with hydro, but you really never know....

They need to get the congenital hydro to adult WITH congenital hydro figured out otherwise...I am NOT looking forward to being a geriatric with congenital hydro...lol I don't know if I'll have the energy to fight for a new shunt if I have an idiot for a NSG when I'm 90! :D

[CoolAngel28]

When you posted this,Liz..it kind of surprised me,because,this looked like something I would have posted.But,when it comes to the hydro,I've kind of learned not to play the what-if game,in some regards.

[CoolAngel28]

What is arrested hydro anyway??Anyone know??

[KathiDG]

Arrested hydro = hydrocephalus that has "resolved" itself (according to doctors) because the patient may not have had any shunt issues in several years. Like, prior to 2006, I hadn't had any shunt surgery since 1982. So, my doctor thought all the symptoms I was having were due to me not needing the shunt anymore. "Outgrowing the hydrocephalus" he said....

It is very RARE that someone would develop arrested hydro at my age with congenital. I would think it possible with a child maybe a few years old, shunted since birth, but not an adult (age 30) shunted at 2 days old.

[LIZARD]

There is such a thing as arrested hydro:

http://www.emedicine.com/med/topic2884.htm

"Arrested hydrocephalus is defined as a rare condition in which the neurologic status of the patient is stable in the presence of stable ventriculomegaly. The diagnosis must be made extremely carefully because children can present with very subtle neurological deterioration (eg, slipping school performance) that is difficult to document."

What concerns me is that, as Kathi said, it seems to be easy for many nsgs to think arrest has occurred just because the shunt has done its job for 20+ years. :rolleyes:


LIZARD :)

[mister]

Some the earliest shunts were being placed back in the year 1955. That is when I had my first one placed. They waited three months to place my first because at that time they rarely did shunts on young children.

As some of you may know from a previous posting of mine location and direction ment the difference between life and death in the 1950's. If I had gone west 15 miles I would have been sent home to die. As you can tell my parents were sent east and the shunt was done and I am still here today.

Always question when you think it is needed. A second or third opinion is never out of the question when you are dealing with the potential life and death decisions that some are in this forum and in other areas aswell.

There is still a great deal of education that needs to be done in the way of some of the Doctors who hear of hydro but rarely deal with it.

When possible always try to get your treatment at "teaching hospitals" Those are the ones who ge the best information and do the trial tests on devices. They see a greaat deal more than the general hospital.

Just an example or two: A local hospital told me back in 2003 that my shunt had disappeared. They couldn't see it on xray or catscan. When they went for a spinal tap they were unable to get any fluid to test. After being transferred to the teaching hospital the tap was done and the scans were done and the repairs were made.

Wish you all well and hope that things get better for you all

[darren]

I had no problems with hydro or shunts etc at all for 26 years (Lizard I think you bet me on the longer than that if I remember correctly).

I had many ct scans, x-rays, icp monitoring, shunt taps - all were showing 'normal' Even although the headaches continued and got really bad.

I was only operated on when I large collection of fluid built up over the shunt, like a big bag. After the op, I was advised that the original shunt had broken up and that my body had kind of got used to the pressure for a while then then couldn't cope anymore hence the headaches.

Apparently there was a big piece of the shunt near my heart that they couldn't get out as it was totally surrounded by tissue, but I was advised it should never bother me and so far it hasn't!

I wish I could go back to a VA shunt as the VP in my abdomen is a nightmare due to scar tissue, but apparently the VA shunts are seen as more risky and the hospital I go to won't do them.

Mister - the only thing I had about the teaching hospitals (I always go to one), is the fact that you end up seeing different people all the time, and they all like to throw in their opinion and sometimes they have different opinions which can be confusing. I agree though in that they have more staff available and probably are more willing to try 'new' things etc.

Darren

[KathiDG]

The hospital I go to in Milwaukee for the hydro, Froedtert, is a teaching hospital. It's affiliated with the Medical College of WI...the neurosurgeon that I got put with after my pediatric neurosurgeon retired just happens to be Professor of Neurosurgery at MCW...

He, admittedly, still doesn't know much about congenital hydro...I think I might be one of his only congenital patients...I've only heard of him treating other hydro patients who have NPH. So I guess I'm kind of "educating" him as I go too.....i.e., when my gut is telling me 'the shunt's messed up', it IS...he pretty much trusts me on it now....

My only hope is that when the time comes for him to retire, he's got enough info on me/my hydro that the next NSG can just pick up where he leaves off. My ped neuro didn't give him much to go on...he needs to put a HUGE note in my records at that time...."IF SHE SAYS HER SHUNT IS NOT RIGHT...GO WITH IT!"

I'm so sensitive to the CSF that I think I can tell something's off even BEFORE it gets too obvious...I would NEVER go to a general hospital with a hydro problem by choice...unless emergency (accident, etc..) and THEN I'd demand that if any damage to head was done, I go to the nearest teaching hospital...in my case...as long as I'm in this area...Milwaukee/Racine, etc...it's gonna be Froedtert...