All Roads Lead to Chiari
A long long time ago (2006), in a galaxy far, far away (Tampa), a doctor agreed with my assessment that I was a medical freak when giving me the clearance for a minor surgical procedure. (That resulted in a more major procedure 3 years later, but that's another story.)
In that conversation, he suggested visiting with a geneticist, because it was his opinion that all the freaky crap I deal with is probably linked to one root cause. Right track, wrong train. I needed to see a neurologist to clarify some issues and identify some of the chronic health issues under one umbrella. The diagnosis, Chiari I Malformation, brought together many issues under one cause, namely:
Extreme severe headaches that migraine meds didn't fix
neck pain
shoulder pain
bulging discs
coughing as soon as I laid down
headaches caused by coughing or sneezing
vertigo
balance issues
tingling in my arms
As I'd lived with the pain for a long time, and that of the myriad wrist issues for as long, and the vascular issues for slightly less time, I figured that my neurologist's wait and see approach was one I agreed with.
Thing is, the issues didn't stay the same, they got worse. Instead of seeking more aggressive treatments, I treated symptoms. I'm frankly scared of the notion that fixing my quite pronounced malformation and decided to live with the pain, but when the interventions don't work and the homeopathic assists don't really help, it's time to ask for the referral to the neurosurgeon when I go in for the annual MRI.
In what free time I had this summer, I was doing my own Internet legwork on what to expect post operation. I follow a blogger who was the first person I'd encountered that shared the not-so-pleasant side of surgery. (I casually know someone who has had the surgery with much better results.) Still, as a defect that affects 1 in 1,000 (which elevates me to a <1% girl, honestly) there isn't a lot of information to be had from those who have been there, done that. I've paid careful attention to Katie's experiences, because it could be me with that same outcome.
Today, my lovely Donna found a link while surfing the web today and sent it my way. A mom in Jacksonville spearheaded a charity Walkathon for Chiari Malformation. I read the article and it lead me to the Conquer Chiari website.
It was like Donna turned on the grail-like beacon for me.
Most of the impetus for doing the research this summer is because the related issues have been hell. Constant pain in the neck and shoulder a 5 out of 10 headache at all times, that steps up to an 8 several times a week, my stupid leg joining the pain party, and just a general frustration that the days that I don't hurt are practically nil. I don't write about it because what purpose does it serve? I'm not known as a health blogger, it'd just be me detailing boring crap that no one wants to hear. I'm coming to the realization that 'wait and see' is probably not going to be an option when I see Dr. M next.
The Conquer Chiari site finally resolved the question of outlier health concerns. In addition to the above, issues like insomnia, tingling/numbness in the arms, and gagging are probably related to the Chiari. Finally, I have a possible origin for the wrist issues that began on my right side when I was 13 that took 6 years and 8 doctors to resolve. The strangest thing of all: there may have been a clue to this all along: my lazy eye. It was identified when I was 3 and treated unsuccessfully with eye patches.
The website explained that neck and shoulder issues happen to Chiari patients almost exclusively on the right side. This explains mine and the fact that the wrist problems developed on my right, even though I'm a lefty. It also explained that the strabismus surgery that was suggested to my parents way back when may not have helped, but the Chiari decompression surgery would.
So, the non-vascular related health issues may be all be offshoots of Chiari, whether common or rare. Let's face it, rare crap, even with a rare disorder is par for the course with me. Now the medical history I present to each new doctor can be categorized by probable cause, rather than date of onset.
Reading the website made me realize that there were some flashing signs that pointed towards the Chiari, but there were roadblocks in the way. It is something of a relief to find that these things are all related, that the answer to what the hell is causing all these freaky things is right here.
It begs the question, though, if pediatricians are looking beyond the lazy eye/amblyopia/strabismus diagnosis to find the root cause? Everything about surgical intervention says that if this congenital defect that occurs in utero is corrected in childhood, recovery is much easier.
I don't know yet what this means for me. I'd love to be out of pain, but I'm not sure if the surgery is the right option for me. I have very real concerns about the lack of mobility that will occur post op, thanks to my clotting issues. That said, the Conquer Chiari site had links to other websites that may help me figure out what I can do to resolve these issues, especially now that I know they're related.
In that conversation, he suggested visiting with a geneticist, because it was his opinion that all the freaky crap I deal with is probably linked to one root cause. Right track, wrong train. I needed to see a neurologist to clarify some issues and identify some of the chronic health issues under one umbrella. The diagnosis, Chiari I Malformation, brought together many issues under one cause, namely:
Extreme severe headaches that migraine meds didn't fix
neck pain
shoulder pain
bulging discs
coughing as soon as I laid down
headaches caused by coughing or sneezing
vertigo
balance issues
tingling in my arms
As I'd lived with the pain for a long time, and that of the myriad wrist issues for as long, and the vascular issues for slightly less time, I figured that my neurologist's wait and see approach was one I agreed with.
Thing is, the issues didn't stay the same, they got worse. Instead of seeking more aggressive treatments, I treated symptoms. I'm frankly scared of the notion that fixing my quite pronounced malformation and decided to live with the pain, but when the interventions don't work and the homeopathic assists don't really help, it's time to ask for the referral to the neurosurgeon when I go in for the annual MRI.
In what free time I had this summer, I was doing my own Internet legwork on what to expect post operation. I follow a blogger who was the first person I'd encountered that shared the not-so-pleasant side of surgery. (I casually know someone who has had the surgery with much better results.) Still, as a defect that affects 1 in 1,000 (which elevates me to a <1% girl, honestly) there isn't a lot of information to be had from those who have been there, done that. I've paid careful attention to Katie's experiences, because it could be me with that same outcome.
Today, my lovely Donna found a link while surfing the web today and sent it my way. A mom in Jacksonville spearheaded a charity Walkathon for Chiari Malformation. I read the article and it lead me to the Conquer Chiari website.
It was like Donna turned on the grail-like beacon for me.
Most of the impetus for doing the research this summer is because the related issues have been hell. Constant pain in the neck and shoulder a 5 out of 10 headache at all times, that steps up to an 8 several times a week, my stupid leg joining the pain party, and just a general frustration that the days that I don't hurt are practically nil. I don't write about it because what purpose does it serve? I'm not known as a health blogger, it'd just be me detailing boring crap that no one wants to hear. I'm coming to the realization that 'wait and see' is probably not going to be an option when I see Dr. M next.
The Conquer Chiari site finally resolved the question of outlier health concerns. In addition to the above, issues like insomnia, tingling/numbness in the arms, and gagging are probably related to the Chiari. Finally, I have a possible origin for the wrist issues that began on my right side when I was 13 that took 6 years and 8 doctors to resolve. The strangest thing of all: there may have been a clue to this all along: my lazy eye. It was identified when I was 3 and treated unsuccessfully with eye patches.
The website explained that neck and shoulder issues happen to Chiari patients almost exclusively on the right side. This explains mine and the fact that the wrist problems developed on my right, even though I'm a lefty. It also explained that the strabismus surgery that was suggested to my parents way back when may not have helped, but the Chiari decompression surgery would.
So, the non-vascular related health issues may be all be offshoots of Chiari, whether common or rare. Let's face it, rare crap, even with a rare disorder is par for the course with me. Now the medical history I present to each new doctor can be categorized by probable cause, rather than date of onset.
Reading the website made me realize that there were some flashing signs that pointed towards the Chiari, but there were roadblocks in the way. It is something of a relief to find that these things are all related, that the answer to what the hell is causing all these freaky things is right here.
It begs the question, though, if pediatricians are looking beyond the lazy eye/amblyopia/strabismus diagnosis to find the root cause? Everything about surgical intervention says that if this congenital defect that occurs in utero is corrected in childhood, recovery is much easier.
I don't know yet what this means for me. I'd love to be out of pain, but I'm not sure if the surgery is the right option for me. I have very real concerns about the lack of mobility that will occur post op, thanks to my clotting issues. That said, the Conquer Chiari site had links to other websites that may help me figure out what I can do to resolve these issues, especially now that I know they're related.
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