I foolishly tried coming off of naproxen, which has for the past couple of months had a miraculous effect on my fatigue. I tried skipping one of my two daily pills on Friday and Saturday, but Sunday afternoon it was just like old times. I was incredibly fatigued and dizzy. I felt like a zombie. I also experienced an increase in roaming, burning joint pain, as well as chest pain. The pain to the back of my head is always bad, even on the meds, but other pain has subsided quite a bit since I started taking naproxen.
I took both pills yesterday and took my morning one today, and I'm already feeling a little better. The problem is that it seems it will probably be quite some time before I have any hope of real treatment, and the naproxen has started to irritate my stomach. Something has to give.
If I need to take some time off the meds and slip back into zombiehood, it'll have to be some other time soon, since I'm in the midst of a ton of work in my office and a ton of other work for the office I'm transferring to. I need enough energy to make it through!
Monday, August 25, 2008
Thursday, August 21, 2008
Why I think that doctor is wrong.
Originally published in Dan's Life on August 20, 2008
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.
Comments from the original post:
Chiari Mama said...
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.
Comments from the original post:
Chiari Mama said...
you need to go to a Chiari specialist to find out for sure . They are all over the US
Christine from WI said...
Dear Dan,
I commend you for taking responsibility for your own health and not just blindly trusting the first surgeon you saw! I was happy to read you are contacting the experts at the Chiari Institute. I wish I would have seen an expert instead of trusting a general neurosurgeon for my decompression surgery! I ended up permanently disabled when it was all said and done. Hang in there and stay strong! Christine from WI
P.S. My blog has my personal story on it (in just one entry) but is more of a reference library of good information about Chiari. I think you would find it helpful. Here's the address if you would like to check it out! http://christineschiariblog.blogspot.com/
Quick Update
Originally published in Dan's Life on August 19, 2008
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.
Comment from the original post:
lace1070 said...
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.
Comment from the original post:
lace1070 said...
Dan ~ I found your blog from a google update when people blog about chiari. I was diagnosed in 2006 and have a blog with a lot of info and links about chiari ~ http://livelovelaugh-lace1013.blogspot.com/
Getting in to see the docs at TCI is worth the wait. I put total faith in them and will have my decompression in December. Hang in there and keep learning more about Chiari ~ knowledge is your biggest weapon against Chiari! Hugs ~ Lace
Confirmation!
Originally published in Dan's Life on August 5, 2008
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.
Comments from the original post:
Danielle A. said...
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.
Comments from the original post:
Danielle A. said...
I'm psyched that you finally have an answer! Keep us posted on any pending surgeries and anything we can do to help if needed. :)
lace1070 said...
What a great goal to have ~ check out this chiarian's blog who seems to have the same goal ~ and she's well on her way to running her marathon post decompression ~
http://kimhocutt.blogspot.com/
A Chiari Log
I have a personal blog at Dan's Life, but I decided to create this separate blog to record my progress in seeking treatment for my Chiari I Malformation. The next three entries are ported over from Dan's Life.
Subscribe to:
Posts (Atom)
