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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

To All –

Hope you don’t mind me jumping in. Was found to have Arnold Chiari w/Syrinx almost a year ago by accident. Had what doctors thought at the time was a TIA (Stroke) and during related testing (MRI), they discovered that I had Arnold Chiari w/syrinx in the spinal cord (13mm tonsil). Ironically, they ruled that the condition had nothing to do with the TIA, and that I was “A” symptomatic with the Arnold Chiari, and felt that I may never have problems with it. Of course this was not until after experiencing the shear panic you go through upon researching the condition on the web and reading all of the “doom and gloom” that is out there (mostly outdated stuff).

Unfortunately about 2 months ago, I started noticing subtle things like occasionally loosing my balance, bumping into things, blurry vision, pain in my ears, muscle or nerve spasms/twitches, weakness or loss of strength in my arms and legs, and unexplained pain in various parts of my body. Having just turned 45 yrs old, I pretty much rationalized it all as “just getting old”.

About 2 weeks ago, the symptoms really hit me. Was at work and all of a sudden it was as if there was a valve stem on the side of my head and someone pumped it full of air. The pressure was agonizing. I felt like someone was pushing my eyeballs out, from the inside out. Then came the headaches that never go away, the nausea, etc.

I went to my primary care physician and he treated it like it was nothing more than a sinus infection (Predesone & Antibiotics) even though he said that everything looked clear. To no surprise, the medications did not help at all, and in fact the symptoms have only worsened. They include: (Borrowed from another Posting – Hope you don’t mind)

The most noticeable/recurring.
~Headache(Anywhere from a pressure headache to a cluster)
~Anxiety (Nerves all acting up at once)
~Cracking/Popping in joints (including neck)
~Mild to Moderate sore neck
~Slight to moderate pressure/pain feeling in back of neck and shoulder blades
~Dizziness when getting up from sitting down
~Sore throat
~Blurred Vision
~Tingling and/or sharp pains in hands/feet
~Trouble getting thoughts together when head pressure is at its worst
~Pain in ears (Feels like an ear infection)
~Pressure behind eyes

What was very discouraging about the whole deal was that I was led to believe based on what I had read that I was one of the fortunate ones because at least I had been properly diagnosed a year or so ago with it which should/would aid in future treatment of problems if they occurred. I went back to my doctor today because the medications he gave me a week ago did not work and he acted as though I was making this all up. I was beginning to wonder myself until my wife stumbled upon this message board and realized that there were others experiencing the same exact symptoms/problems.

I did get the doctor to agree to have a new MRI done and he is referring me to an eye specialist to check the pressure on the optic nerve. He would not approve a spinal tap to check spinal/cranial pressure. I’m assuming he is going to refer me to a neurologist/neurosurgeon when the MRI results come back. All this will no doubt take weeks and in the interim, he said that there is nothing he can do or give me for the pressure and other symptoms.

I’ve discovered that the only time the pressure seems to fully go away is at some point when I am sleeping at night/laying down because it is gone in the morning (though not the sore throat or headache), however as I get up and start moving around, it quickly returns and remains all day, worse at times, more than others. This would suggest that my head/neck positioning has something to do with the disruption or flow of fluid causing the pressure build up.

Well….don’t want to belabor the points, you all have lived it, or are living it. Have any of you received treatment or medications prior to surgery that have helped the symptoms? Did any of your symptoms get worse than what I have described and/or cause permanent damage (ie, blindness, paralysis)? Probably the most difficult challenge I have found, is trying to find a list of Neurosurgeons who specialize in Arnold Chiari related surgeries (all the organizations I have contacted emphasize the importance of finding an experienced one but won’t provide names or recommendations). I am aware of the institutes but unfortunately I have an HMO who will limit where I can go. All of the local neurosurgeons I have contacted initially say they are experienced in this type of surgery but when pressed, admit they have only done a few in their career (if any), but down play it as not being that difficult. I am located in So. California. Needless to say, although I understand the condition, and where I am at with it, I am frustrated with not having any immediate solutions to the symptoms, or a clear path of where I am headed to resolution. I am 45 yrs old, have to work a minimal of 5 more years to retire, and am putting 3 kids through college. As such, laying in bed all day to minimize the pressure/symptoms is just not an option.

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