Thursday, August 21, 2008
Google Earth Pictures!
The pictures I took of Chelmsford Center back in June and uploaded to Panaramio have finally hit Google Earth! I take quite a bit of nerdy pleasure in this for some reason...
New Blog
I'm going to shift gears in this blog away from talk about Chiari. I decided to create a separate blog to record my progress there, so that I can get back to normal updates here. The new blog (which so far only has copied text from previous entries here) is Dan's Chiari Log.
Wednesday, August 20, 2008
Why I think that doctor is wrong.
I thought I'd lay out the details, for my own benefit, of how I disagree with the surgeon's assessment that Chiari isn't my problem:
1) The two main determinants he used for his conclusion were the fact that my cerebellar tonsils are only herniated 6 mm, and that to him it looked as though my CSF (Cerebrospinal fluid) wasn't being impeded by the herniation.
a) Herniation on its own has been shown in recent years to be a poor determining factor for the diagnosis of Chiari. It is a symptom rather than the cause. Many people have severe symptoms occurring with a much smaller herniation that 6 mm (the radiologist who analyzed my MRI actually reported 6-8 mm for me), and some have much larger herniation with no symptoms at all.
b) Specialized tests, such as Doppler ultrasound and Cine MRI are used to determine impedance of CSF, and even these tests are not conclusive. This doctor spent perhaps 3 minutes (or less) reviewing the still images of my standard MRI when coming to the conclusion that CSF wasn't blocked.
2) My symptoms. There are many diseases and disorders that cause the symptoms I have, but it seems that holistically, they are a near perfect confluence of Chiari evidence. These telltale symptoms include:
-daily (sometimes constant as today) pain in the back of my head
-frequent headaches in my entire head, at one point occurring nearly 24 hours a day for 3 weeks (this was the initial impetus for my CT scan that revealed the malformation)
-a host of eye problems that have not subsided for many months, such as frequent reduced and blurred vision, and disturbing flashes or slow moving streaks of light
-ringing in my ears
-moderate insomnia over a prolonged period
-profound fatigue and pain in the muscles and joints
-numbing in my fingers (and tongue! That happened for the first time yesterday.)
-stiffness in my throat and obstruction of my airways at that point--this was my first symptom and it remains a constant problem, every moment of every day. Recently I've noticed that when I try to run, once I get up to an aerobic breathing pattern, I believe I have what is called a "stridor," which is sort of like wheezing, but is a single high-pitched tone that occurs in turbulent airflow as I inhale.
The list goes on and on. The important thing is that imaging concluded that I have Chiari I Malformation and before I ever knew what Chiari was I had daily pain in the back of my head. It's basically a slam dunk diagnosis. Now all I need is a doctor who agrees.
1) The two main determinants he used for his conclusion were the fact that my cerebellar tonsils are only herniated 6 mm, and that to him it looked as though my CSF (Cerebrospinal fluid) wasn't being impeded by the herniation.
a) Herniation on its own has been shown in recent years to be a poor determining factor for the diagnosis of Chiari. It is a symptom rather than the cause. Many people have severe symptoms occurring with a much smaller herniation that 6 mm (the radiologist who analyzed my MRI actually reported 6-8 mm for me), and some have much larger herniation with no symptoms at all.
b) Specialized tests, such as Doppler ultrasound and Cine MRI are used to determine impedance of CSF, and even these tests are not conclusive. This doctor spent perhaps 3 minutes (or less) reviewing the still images of my standard MRI when coming to the conclusion that CSF wasn't blocked.
2) My symptoms. There are many diseases and disorders that cause the symptoms I have, but it seems that holistically, they are a near perfect confluence of Chiari evidence. These telltale symptoms include:
-daily (sometimes constant as today) pain in the back of my head
-frequent headaches in my entire head, at one point occurring nearly 24 hours a day for 3 weeks (this was the initial impetus for my CT scan that revealed the malformation)
-a host of eye problems that have not subsided for many months, such as frequent reduced and blurred vision, and disturbing flashes or slow moving streaks of light
-ringing in my ears
-moderate insomnia over a prolonged period
-profound fatigue and pain in the muscles and joints
-numbing in my fingers (and tongue! That happened for the first time yesterday.)
-stiffness in my throat and obstruction of my airways at that point--this was my first symptom and it remains a constant problem, every moment of every day. Recently I've noticed that when I try to run, once I get up to an aerobic breathing pattern, I believe I have what is called a "stridor," which is sort of like wheezing, but is a single high-pitched tone that occurs in turbulent airflow as I inhale.
The list goes on and on. The important thing is that imaging concluded that I have Chiari I Malformation and before I ever knew what Chiari was I had daily pain in the back of my head. It's basically a slam dunk diagnosis. Now all I need is a doctor who agrees.
Tuesday, August 19, 2008
Quick Update
No posts in a while. I've been (and continue to be) quite busy at work, finishing up all of the outstanding projects here in MA and concurrently planning for the move to CA.
I went to see a surgeon on Monday. It seems that the guy was not up on the latest research into Chiari Malformations. He deemed (after looking at my MRI results for much less than 5 minutes) my case "borderline" and gave his opinion that I should not operate. I personally disagree with his assessment for several reasons and I remain very convinced that Chiari is the source of my medical problems, which still persist after 8 long months. Every symptom I've suffered is readily explained by Chiari, and both radiologists who have seen my imaging (one for the CT scan, the other for the MRI) concluded that I had the malformation. There was no reporting about a "borderline" case. I've read plenty of sad stories online of people in a similar situation, with persistent symptoms and misinformed doctors. Fortunately these stories usually end in the person finding a qualified physician and getting the help they need.
My next step is to get my imaging forwarded to The Chiari Institute on Long Island, who agreed to give me a preliminary diagnosis. The frustrating thing about these latest developments is that I had some hope of surgery and resolution before the move out west, but given the lead time on finding a new doctor, meeting with him or her, and scheduling a surgery date, a pre-move procedure seems completely implausible.
I'm managing the problem okay. I've been running almost every day lately, though the shortness of breath severely limits my former capacity for distance. I attempted a 4.6 mile run yesterday and simply could not make the last quarter mile. I ended up walking the rest of the way. All I can do is continue fighting to stay healthy and continue searching for the right doctor.
I went to see a surgeon on Monday. It seems that the guy was not up on the latest research into Chiari Malformations. He deemed (after looking at my MRI results for much less than 5 minutes) my case "borderline" and gave his opinion that I should not operate. I personally disagree with his assessment for several reasons and I remain very convinced that Chiari is the source of my medical problems, which still persist after 8 long months. Every symptom I've suffered is readily explained by Chiari, and both radiologists who have seen my imaging (one for the CT scan, the other for the MRI) concluded that I had the malformation. There was no reporting about a "borderline" case. I've read plenty of sad stories online of people in a similar situation, with persistent symptoms and misinformed doctors. Fortunately these stories usually end in the person finding a qualified physician and getting the help they need.
My next step is to get my imaging forwarded to The Chiari Institute on Long Island, who agreed to give me a preliminary diagnosis. The frustrating thing about these latest developments is that I had some hope of surgery and resolution before the move out west, but given the lead time on finding a new doctor, meeting with him or her, and scheduling a surgery date, a pre-move procedure seems completely implausible.
I'm managing the problem okay. I've been running almost every day lately, though the shortness of breath severely limits my former capacity for distance. I attempted a 4.6 mile run yesterday and simply could not make the last quarter mile. I ended up walking the rest of the way. All I can do is continue fighting to stay healthy and continue searching for the right doctor.
Tuesday, August 5, 2008
Confirmation!
I just spoke with my doctor and the MRI I had last week confirmed that I have a Chiari I Malformation:
Wikipedia
Helpful FAQ
Basically, my cerebellum extends beyond my skull very slightly, pressing against my spinal cord, disrupting the flow of spinal fluid and causing pressure in the area. It easily and completely explains my wide range of symptoms (that haven't gone away for 8 months and counting).
I should expect to hear from a neurosurgeon soon to discuss my options, but there is a very good chance that I'll be having surgery to correct the problem.
I'm feeling overwhelming relief that there is a definite explanation for my symptoms, that it's not life-threatening, and that there is a good possibility of correcting the problem and going back to 100% normal life. I've already decided that if I have major surgery this fall, my goal will be to run my first marathon within a year after the start of my recovery. Exciting times.
Wikipedia
Helpful FAQ
Basically, my cerebellum extends beyond my skull very slightly, pressing against my spinal cord, disrupting the flow of spinal fluid and causing pressure in the area. It easily and completely explains my wide range of symptoms (that haven't gone away for 8 months and counting).
I should expect to hear from a neurosurgeon soon to discuss my options, but there is a very good chance that I'll be having surgery to correct the problem.
I'm feeling overwhelming relief that there is a definite explanation for my symptoms, that it's not life-threatening, and that there is a good possibility of correcting the problem and going back to 100% normal life. I've already decided that if I have major surgery this fall, my goal will be to run my first marathon within a year after the start of my recovery. Exciting times.
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