Tuesday, May 12, 2009

Chiari news / bad day / symptom watch

As I learned from my friend, Kristen, Dr. Milhorat, the director and founder of The Chiari Institute, is stepping down from his position as Chief of Neurosurgery at the Northshore University Hospital. I don't know if this is related to the suspension last month. I hear that he will continue helping with research. But of course, it is sad for me, because he and Dr. Bolognese have been my surgical team for both my first fusion and my detethering. I will still trust Dr. Bolognese with my life, but I prefer the team I've come to rely on.

I know Dr. Milhorat has come under some scrutiny recently, but I believe that he is an amazing man. He is responsible for spearheading so much of the research that has been done on Chiari in the last two decades. He brought Chiari into the light. He continues to work so hard to more fully understand the many problems associated with this wretched malformation. Many people owe their lives to this man, directly and indirectly.

Personally, today was a long and frustrating day. I was very irritable. I'm sorry to my family that had to deal with this crabbiness. Nonetheless, the work is done. I'm looking forward to the next two weekends, when my students will be playing in recitals. It's a lot of work, but worth it. As always, I just hope for my body to be up for the challenge. During an ideal weekend, I rest essentially the whole time, to help me recover from the week. That won't be possible for the next two weekends, due to two recitals and a wedding. It's a lot to expect from my body. I hope I make it through. That is why I gave myself and my students the following week off. I know I'll be counting down the days in my head until April 25th.

My choking has continued. Each time I have a choking spell, I get a massive headache, due to not breathing for so long, and coughing so hard. The bronchospasms continue for the rest of the day. I've had 4 days in a row with choking spells now. Clarification: I swallow the wrong way often. Usually, just a few coughs will correct that problem. But in a major choking spell, I cough and cough, but then I am unable to inhale air for a prolonged period of time. There is nothing to do for it (like the Heimlich maneuver), because I tend to choke on water. It takes time, but I eventually catch my breath each time. Unfortunately, I manage to scare myself and the people around me, as each time it seems that I may not catch my breath. However, I have never had a choking spell lead to loss of consciousness, so I hope my family can try not to worry. It is scary in the moment, though.

My headache is pretty high right now, definitely time for bed. The shortness of breath came back for the first half of the day (from 12 to 4). Once I'd had 4 salt pills and 2 doses of Midodrine, I finally seemed to be able to catch my breath. This seems to mean that the more fluid I can retain, the less hard my heart has to work. At least something helps, some of the time. My neck and shoulder muscles are so tight. My shoulders seem to hunch a lot of the time. When I try to bring my shoulders back to a normal position, I feel pulling of very tight scalene muscles. This would take some major massage therapy to work out. Especially since it comes back so easily.

I've also had many episodes of abdominal pain, lately. I don't believe that it is related to my removed gallbladder in any way. I sometimes tolerate food just fine, but other times, I get very sick from the same foods. I know I could go back on the IBS diet, but I'm just not ready to do that without trying a few other things, first.

*See Dr. Aziz, gastroenterologist
*Contact Dr. Shah re: referal to Dr. Menezes
*Contact imaging center in New York to get an extra copy of last year's scans