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Wednesday, April 25, 2012

To Decompress, or Not to Decompress?

When you live with a Chiari Malformation, there isn't a whole lot, medically, that can be done for treatment. The most common form of treatment for a Chiari is, decompression surgery. It is an in-depth surgery that, like any other surgery, is not without risks. As a matter-of-fact, there are quite a few risks involved with a decompression surgery.

Because the tonsils of the brain are herniating into the spine, below the base of the skull, they must be made to be kept within the skull so that they no longer "dangle" below the skull. It is when they get too low, or fall beneath the skull line that you can have horrific symptoms. It does not matter whether they have herniated just a couple of millimeters, or several, each individual will experience different degrees of symptoms.

Symptoms that are common amongst those with a Chiari are:
  • Pain
  • Headaches
  • Numbness
  • Balance issues
  • Problems swallowing
  • Nausea/Vomiting
  • Muscle weakness/Tingling
I experience and/or, have experienced all of these symptoms at one time or another, and more. Some symptoms are regular, nearly daily symptoms, while others bother me sporadically.

Other problems I deal with are:

  • Vision disturbances
  • Audio disturbances
  • Sleep disturbances
  • Restless leg syndrome
  • Sleepiness at odd times
  • Muscle twitching
If I just had the Chiari to deal with, I think I would have already had my decompression surgery. But.....because I also have a significant sagging to my brain, this makes my Chiari different than many cases. It makes it "tricky" and with many more risks. It has been thought, and explained to me by my neurosurgeon who follows my case now, that although he does perform the Chiari surgery, he does not want to attempt to repair mine, for fear that he will make my sagging worse. He has recommended that I travel to New York, to the Chiari Institute, to see if they could help me. He says that they see and have seen just about every type of Chiari case, and if anyone could help me.....they could. But I've yet to go. After all I have been through with my past two brain surgeries, complications from my shunt, and the symptoms I currently live with, I am afraid to rock the boat. I'm afraid to go through a major surgery, only to come out at the other end with more problems and complications.

Maybe one day I will decide I've grown tired enough of living the way I do, to where I want to have the surgery. Maybe one day I won't have a choice, but to have the surgery. I do not know what my future holds, but whatever it holds, I just hope that I will at least be able to live life with some sort of quality. I hope that I live well enough that I am able to enjoy my two boys, watch them finish growing up, and am well enough to be able to be an active part of their lives.

So, until then, it is a question of, "To Decompress, or Not to Decompress?" Everyone has to make the best decision for themself at the time, and as of yet, I have no decision. I do not know what is best for me, and until there are substantial guarantees that I would walk away from such a major surgery feeling better and doing better than before I went in....I will probably stay just as I am.

1 comment:

  1. Hello I just joined your blog because it pertains to me.
    I did not see your name on this site nor on your profile. So I don't know who to address you as.
    I am hoping you can answer some questions I have for you in private rather than on an open blog since my questions regard myself, my life, and personal issues.

    So in wanting to ask some questions hoping you can help me I joined your blog and in the options I allowed to be contacted by email.

    So I am sorry to hijack this thread but it was the newest post so it gives me the greatest chance it will be seen by you.
    and I saw no other way to contact you.