Wednesday, May 6, 2009

A Big Day in the Chiari World

Well, I'd like to ignore this topic, but it has come to be such an important part of the Chiari world today, so I will mention the events of the day, give my thoughts, and move on.

An article was written in a New York newspaper about my two main neurosurgeons from The Chiari Institute. Clearly, this article only gave part of the story. But the main point is that both Dr. Milhorat and Dr. Bolognese were suspended after Dr. B was not present to perform surgery, when the patient had already been anesthetized. The surgery in question took place on April 10. There are several missing facts in this article. Dr. Bolognese had a family emergency during the month of April, which resulted in many surgeries being postponed for several weeks. I know that I have some friends that were waiting for surgery, and they had to reschedule. One family of which I am aware was even reimbursed for their travel expenses. It only makes sense that the surgery in question was the first surgery scheduled after Dr. Bolognese's emergency. And I am disposed to believe that a miscommunication took place, allowing the surgery not to be cancelled. However, this does not explain why the entire surgical team prepared the patient for surgery without having any contact with the lead surgeon. I feel that this may be a case of misplaced blame, or of the hospital trying to protect itself by blaming the missing doctor, not the lack of coordination within the hospital.

I would ask anyone reading this to withhold judgement on these two remarkable doctors, who are the pioneers in the treatment of Chiari-related conditions. Due to confidentiality restrictions, it is quite possible that we may never know the full story. However, many in the Chiari world owe our lives to these two doctors, and we hate to see this kind of slander against them. To have The Chiari Institute discredited in any way is a serious blow to the thousands of patients that have found validation for their disease in the face of local ignorance.

The Chiari Institute is on the cutting edge of neuro-medicine. This means that they are constantly scrutinized for their work. Without them, new treatments would not be found. And yes, this does sometimes involve performing surgeries that are "unproven". How else would they ever become "proven"?

I will not say that I have had constant, unwavering support of The Chiari Institute, myself. But I've always felt that they are the best option available. That doesn't mean that I cannot seek outside opinions. In fact, if my fusion revision is postponed, I am considering seeing another fusion specialist, Dr. Arnold Menezes. The option to seek outside opinions is available to every patient at The Chiari Institute.

I'm sure I had other things to say today, but my mind has been distracted by the constant debate that has taken over the Chiari world. I'll try to list the other issues on my mind today, if nothing else, so I can stop thinking and get some sleep.

*I'm concerned that my body is already building up a tolerance to the Provigil. My dose has been largely ineffective so far this week. I have had difficulty concentrating and staying awake, even taking twice my usual dose. One of my biggest fears has always been having the medicines that actually help me stop working. This includes Provigil and pain medications. This is why I take strong pain medication so sparingly; I fear requiring more and more medicine to achieve the same level of pain relief. To have this become a concern so soon for my Provigil is very worrisome. It's become clear that my body really works better on this medication. I will have to experiment with skipping days to see if I can find a dose where the medication helps when I need it. This may just be my body's way of complaining that I need more rest.

*I don't expect to hear back from The Chiari Institute in the next few days, due to the media harassment. However, I am anxious to hear if June received my test results and Dr. Camacho's recommendations. I am still holding on to the small possibility that Dr. Bolognese would approve surgery for me based on my improving blood counts. Of course, I understand that Dr. Bolognese's schedule will be backed up for quite some time now. I can't expect a prompt response. I will just have to be patient to hear back on this issue.

*This does lead me to wonder if Dr. Menezes would be willing to see me in the meantime. Dr. Arnold Menezes practices in Iowa, and specializes in skull-base deformities with chiari, like retroflexed odontoid. His experience focuses on transoral odontoidectomies combined with cranio-cervical fixation. I've heard that he is a very picky doctor, when it comes to choosing his patients. He turns away many that are referred to see him. However, a friend told me that he actually has an interest in revising cranio-cervical fusions. So maybe I would be just the type of patient he would be interested in seeing. I would certainly like to hear his opinion on the state of my skull and spine. However, I would need to see my general practitioner and ask for another referall, as Dr. Menezes only sees referred patients. I would also need to get together any recent imaging I've had done. That might involve requesting a copy from the imaging place in New York. Clearly, this would take some time to work out. The to-do list never ends.

*The American Syringomyelia and Chiari Awareness Project holds a national conference every year. This year's conference is taking place in Madison, WI. If I am not recovering from surgery at that time, I am hoping to attend some or all of the conference. It would be a great opportunity to meet many people with Chiari and learn a lot from leading Chiari doctors.

*Symptoms this week: brain fog, exploding brain-type headache, fatigue, aching pain throughout the body, dizziness, choking, hiccups, falling into things

That's all for today, but I'm sure I'll have more to say, once I can think straight again.