Originally posted by opsite3:
quote:
Originally posted by hippiechick64:
Chiari Malformation, also known as Arnold Chiari Malformation, is a rare condition that is caused by an "event" which occurs sometime in the womb
I am so sorry for nit picking here, but I guess there's not a way to look like I'm not , in saying anything.
I agree in
most cases it is thought that the skull begins taking on the proportions which it does to cause chiari from existing. But... there are still several cases in which even some of the most knowledgable Drs. still feel that a baby being in too tight of a birth canal, as well as certain forcep births, can be the cause of certain cases of chiari. It is thought that some displacement of the undeveloped bones of the skull can make it grow with an abnormally small posterior fossa, which leads to chiari malformation.
I'm having a hard time dealing with the show's expalnation of chiari being a case of the brain stem going down through the foramen magnum. From everything we have ever been told , the small posterior fossa in the skull , being too overcrowded for the cerebellum, leads to it being pushed, "squished", migrating down into the foramen magnum. This is whre the direct pressure upon the brain stem originates.
This used to be the only way chiari was ever diagnosed, and still is in very many if not most cases , as it is the most obvious. It's severity used to be thought to be in relationship with the extent that the cerebellum had tonsillated down past the foramen magnum, in millimeters. As in just a couple of mm was not so bad but if you had say 12 millimeters of tonsilller herniation , you had it bad.
This is not the case any more, as chiari has been determined now in patients who have little or no cerebellar tonsils at all, but still have chiari symptoms and the measurments and properties in the skull that define an overcrowded situation , which can instead of driving the cerebellum to herniate downwards, can drive it in towards to brain, crushed upon itself more or less.
This took alot of convincing for alot of NSGs, and I am certain some still don't belive it even with the medical documentations, going on what we have run into over the years.
quote:
Originally posted by hippiechick64:
there is relief to be had through a procedure called a "Decompression" in which they remove parts of the skull surrounding the brain stem and also parts of the top vertebrae in order to make more "room" for the brain stem to protrude without being "squished" as much.
I certainly don't know about all decompression surgerys, but I do know that most chiari decompressions are normally enlarging of the posterior fossa, hence it being called posterior fossa decompression surgery.
Lamenectomy (removal of the back half of a vertabra, usually C1 sometimes C2 as well) is not always performed , as it depends upon the severety of the cerebeller herniation, and how much or how little flow of the CSF (cerebral spinal fluid) there is or is not between the brain and the spinal canal.
quote:
Originally posted by hippiechick64:
This procedure can and does cause other complications
I was only trying to clarify the previous statements, but this one is disturbing, as always. We have seen a few patients oover the years who make these claims, and it is very discouraging to hear, as it is not technically true.
The fact is that through the surgery you may develope an infection of CSF / brain called Menengitis. But the surgery does not "cause" this, it creates the oppertunity for it to happen. Just as with any surgery you are at risk of other types of infection, you are at risk of contracting menengitis with a brain surgery, but it is really rare and can have to do with the steril conditions of the surgical staff, surgery room, etc.
To hear another person state that their surgery caused them hydrocephalous is even more discouraging.
This seems to be the belief of more than a few people who have had chiri decompression surgery. The thing they don't understand or have not had explained to them properly, is that when you remove the source or cause of pressure from the brain and everythin g inside of the skull, things are going to change. You certainly would not be getting the brain surgery if things were not going downhill with chiari, and it's usually the last and only option you have with chiari. (well basically it is).
When you have had something like the gland that produces CSF (cerebral spinal fluid) that has been literally being squeezed, or crushed for many years, and that gland suddenly due to your decompression surgery, is relieved of all of that pressure, can almost as suddenly and with no warning, begin to produce way more CSF than it ever did before.
The tissue around your brain and spinal cord that absorbs your CSF
(the meninges) developes the rate that it absorbs fluid as your system developes over the years of your body's growth, to absorb the amount of fluid that your brain produces, in order not to have too high of pressure and not to have too low(just as bad in many ways)
And if it has grown to absorb only a certain amount of that fluid, and you relieve this pressure , you may very well have a new flood stage of CSF on your hands. This happens with a few people who get decompression surgery.
There is a person who was in our group who is a nurse for one of the best chiari neurosurgeons around , (who has even been invloved in the creation of the chiari clinic in NY, and practices there also)
She explained that we should picture a garden hose with a car's tire parked on it for a great length of time. This is like parts of your brain which has been under this pressure for a great deal of time, until you could endure the problems from this grea pressure no longer. Once this car's tire is removed from the garden hose, things may start to unkink for a very long time to come.
Many people's functons do not settle for almost a year or even longer. And when and if that garden hose, or the part of your brain which produces CSF, finally becomes unkinked, there is a chance that you will be creating more CSF than you ever have in your life, and your body just can not absorb it as fast as you produce it.
This is know as PTC or pseudotumor cerebri, an absorbtion problem that usually happens without a brain surgey as it can happen to people on it's own . But since it is basically due to your being unable to absorb the fluid you create , they call it PTC. The hydrocephalous is te term given for the state you are in while the brain is over pressuired with this fluid.
This can usually be for the most part remedied with a shunt.
And all shunts do not have to go into the brain. Some people are good candidates for a lumbar peritineal shunt (LP) versus a ventricular peritineal shunt (VP) .
This is what my wife has. She got her decomp surgery almost 9 ? years ago now, and she was perfect until things became "unkinked " after a few months, and she got worse and worse, and was almost worse than prior to the surgery due to the hydro problem. But after the shunt she was right back to normal again.
Now if we could find a NSG that would maintain the shunt, so she could get off of the dauretcs it'd be great. But it's being handled as well as possible for us. We have the dosages dialed in really well with diamox and lasix.
We knew a fellow who swore for years that his neurosurgeon "gave him hydrocephalous".And this is how he worded it repeatedy, and I think he may even have tried to sue the Dr over it!.
This was all in his being unable to comprehend everything I tried to explain above. This is just a fact involved with this surgery.
Things were going to become very bad for those who did not have the surgery to begin with.
You have a pressure situation of some type that must be corrected.
Most people do not end up getting the surgery until many years have gone by and they have had glands and parts of the brain crushed into an almost non existence.
Some people 's MRIs show to many Drs. that they are missing their pituitary gland, when in fact it is just crushed to almost gone.
My wife (and other people as well) had so much pressure on her carotid arteries that she was losing blood flow to her brain, and that means oxygen starvation as well. She has some brain damage from this, and had developed "vascular dementia" and if her shunt gets screwed up , kinked or clogged she can get it all over again too!
To imagine that some people have a choice in refusing this surgery is beyond me. Some people we know have made this choice. Sadly the last we heard from them they were not even capable of writing in way we could really understand. We don't know what ever became of them.
I can imagine though going by what I have seen in my wife. I will not go into detail here. It's pretty bad.
I guess you can say what you want, but I just wanted to make it clear for those who may be suffering or know someone who is from chiari, and is putting off surgery as so many, many people do to such a point that the drs. even ask why they waited so long after seeing so much damage in the patient.
I think some Drs are to blame too, as we have run into some real winners over the years too. One NSG from around here even explained that chiari can be conrolled with medicine! and surgery was not actually mandatory, though he did offer to do it. He looked so relieved when we said we did not want it , it was unreal. The man had never performed one yet and did not want to, but was the only one there who would have been stuck with it had we chosen not to find an experienced chiari NSG.
I guess since sometimes hydrocephalous comes after a surgery , I can see why you say what you did, but it's not really fair to say it, when you think of how biased it is , since you possible would either be no more if you had not had the surgory or so pysically, and other wise damaged you may not care to live that way very long.
I just hate to see it worded in such a way as to blame the surgery for it. You were having or would soon have had symptoms of hydrocephalous sooner or later had you not had the surgery, and worse. The way the brain reacts to being relieved of pressure (that is an abnormal pressure) is not the fault of having that surgery.
It's a comprimise, you have to deal with. It sounds like maybe your NSG did not explain this all to you, or did not know of it beforehand. And you really don't hear about meningitis very often from a decomp surgery. If things are steril it is not supposed to happen, and it is rare when it does.
You survived it all, and I am happy for you that you did. I am assuming you either take diamox or have had a shunt put in for it.
If not I'd look into a more chiari experienced NSG . I know they are great at Duke, but they are great elsewhere also without knowing what to do with follow up problems, even after providing one of the best decomp surgeries ever performed.
Good luck to you.
