When I was about 10 or 11 years old, I had a very serious gymnastic injury which caused me to start having seizures, so they say. I was on the balance beam, I did a back tuck, over rotated, and hit the base of my head on a 3-4 in steel pipe. My head hit and bounced twice before my body came to rest on the floor where I lay unconscious for a short while. Since that day I can probable count how many head ache free days I’ve had. The headaches were so severe I would sometimes blackout. I had several EEGs done before they finally diagnosed me with “petite mal” seizures. I was placed on Dilantin for years and finally had a normal EEG.
In 1999, I had a motor vehicle accident. I was knocked unconscious for a little while and to this day I can’t remember the entire thing. I just remember thinking, he’s not going to stop. I was traveling S on a main street and the other driver was turning N onto that street from the W. After the accident I started to have neck pain and major headaches again like I did when I was young and having seizures, so I mentioned this to my Dr. He ordered an EEG which came back normal. My blood pressure had been low my entire life and now after this accident I was having to take blood pressure medicine for the first time. I was having problems with my vision which was a new thing and all the symptoms together really baffled me and my physician. He sent me for a MRI because I had started to have dizzy spells and balance problems. At this point he was concerned about a brain bleed. I had the test done that morning and by afternoon I got a call stating that there was a herniation of some type at the base of my skull and if was ACM I. Of course I had never heard of this and neither had my Dr. We agreed to do some research and meet in a few days to discuss our findings. In the meantime an appointment had been set for me to visit Dr. Charles Engles. My PCP and I met a little later that week to discuss our research and were both stunned to find that there was hardly any information on this disorder. He sent me to the Neurosurgeon every time I had any new symptoms. Dr. Engles told me there was really nothing he could do for me other than surgery. Of course Dr. Pelowfski and Reynolds had done some of these surgeries and would assist but I didn’t want surgery especially after they told me what they would have to do.
I pretty much at that time tried to forget that anything was even wrong with me and started only going to the Dr for other complaints like the horrible body aches I had. It felt like I had the flu all the time without the cold. I mean I would hurt horribly in every joint in my body and was as tired as if I didn’t get any sleep. So my PCP was prescribing monthly doses of steroid packs just for me to get through not to mention the arsenol of pain meds. My PCP finally decided to do a blood panal that included a ANA or arthritis panal. This came back high raising suspision for Lupus. I went to see a Dr. Hynd in OKC that told me it was not Lupus but rather Ehlers-Danlos Syndrome. WOW Here’s some new rare DO to deal with. Yeah I’m glad it’s not Cancer or AIDS but those would be so much easier to explain to everyone around you huh?
In the meantime, I would go to be with all my body parts working fine and wake up to go to the bathroom, step out of bed and fall because my foot didn’t work. Or I would go to walk down stairs and see the last step but just miss it all together. Oh, and be running playing with the kids and my knee dislocate for no reason. Or get this, be typing just fine and my fingers just stop bending, LOL. Funny huh? Yeah, you have to laugh, it’s the only thing that keeps me going.
Each time these things would happen I would go to the Dr. and of course, they wouldn’t find anything wrong. It wasn’t until I did my own research to put it all together to figure out that the EDS(Ehlers-Danlos Syndrome) was causing all the weird joint stuff and the CM(Chiari Malformation) the rest of it.
I ordered and read the book “Contents Under Pressure” by one of our fellow Chiarian and notices a Dr. Mary Gumerlock from OU Medical Center’s name so I went to see her since she had also treated my mother after a fall. She did a CINE MRI on me and noticed that I had decreased spinal fluid flow posterior to the medulla due to multilevel degenerative spondylosis with acquired stenosis at levels C3-C6 but C5-C6 AP canal diameter measures between 7 and 8 mm. NOT GOOD. AGAIN I didn’t want surgery and why should I , I was still able to walk, having more good days than bad, still able to work and act to everyone else as if I was ok.
NOW. The rushes of spinal fluid to your brain the make you feel as if you’re gonna black out and the electric shocks, yeah, those, started on the 19 th of September and they haven’t stopped except when I’m on so much meds I can’t think straight. Today is the 3 rd day, ok 2 nd day I’ve felt like a person. But that’s only if I get up for a little bit then lay down for a while. It’s getting old.
I went back to see Dr. Engles on the 2 nd of October and he sent me for an MRI. Got it back and I guess its bad too. We are supposed to be getting together to talk about surgery after I see Dr. Hynd, Rhuemotologist, on the 15 th of October, 2009.
My symptoms now are as follows:
Blurred vision
Snoring
Gagging
Severe headaches and neck pain
Hypersensitivity to smells and light
Nystagmus
Arm weakness
Joint Pain – Severe
Rushes to my brain with extreme pain when I strain
Brain zapps ( I don’t know how else to explain)
Tingling/numbness (right side more than left)
When I was about 10 or 11 years old, I had a very serious gymnastic injury which caused me to start having seizures, so they say. I was on the balance beam, I did a back tuck, over rotated, and hit the base of my head on a 3-4 in steel pipe. My head hit and bounced twice before my body came to rest on the floor where I lay unconscious for a short while. Since that day I can probable count how many head ache free days I’ve had. The headaches were so severe I would sometimes blackout. I had several EEGs done before they finally diagnosed me with “petite mal” seizures. I was placed on Dilantin for years and finally had a normal EEG.
In 1999, I had a motor vehicle accident. I was knocked unconscious for a little while and to this day I can’t remember the entire thing. I just remember thinking, he’s not going to stop. I was traveling S on a main street and the other driver was turning N onto that street from the W. After the accident I started to have neck pain and major headaches again like I did when I was young and having seizures, so I mentioned this to my Dr. He ordered an EEG which came back normal. My blood pressure had been low my entire life and now after this accident I was having to take blood pressure medicine for the first time. I was having problems with my vision which was a new thing and all the symptoms together really baffled me and my physician. He sent me for a MRI because I had started to have dizzy spells and balance problems. At this point he was concerned about a brain bleed. I had the test done that morning and by afternoon I got a call stating that there was a herniation of some type at the base of my skull and if was ACM I. Of course I had never heard of this and neither had my Dr. We agreed to do some research and meet in a few days to discuss our findings. In the meantime an appointment had been set for me to visit Dr. Charles Engles. My PCP and I met a little later that week to discuss our research and were both stunned to find that there was hardly any information on this disorder. He sent me to the Neurosurgeon every time I had any new symptoms. Dr. Engles told me there was really nothing he could do for me other than surgery. Of course Dr. Pelowfski and Reynolds had done some of these surgeries and would assist but I didn’t want surgery especially after they told me what they would have to do.
I pretty much at that time tried to forget that anything was even wrong with me and started only going to the Dr for other complaints like the horrible body aches I had. It felt like I had the flu all the time without the cold. I mean I would hurt horribly in every joint in my body and was as tired as if I didn’t get any sleep. So my PCP was prescribing monthly doses of steroid packs just for me to get through not to mention the arsenol of pain meds. My PCP finally decided to do a blood panal that included a ANA or arthritis panal. This came back high raising suspision for Lupus. I went to see a Dr. Hynd in OKC that told me it was not Lupus but rather Ehlers-Danlos Syndrome. WOW Here’s some new rare DO to deal with. Yeah I’m glad it’s not Cancer or AIDS but those would be so much easier to explain to everyone around you huh?
In the meantime, I would go to be with all my body parts working fine and wake up to go to the bathroom, step out of bed and fall because my foot didn’t work. Or I would go to walk down stairs and see the last step but just miss it all together. Oh, and be running playing with the kids and my knee dislocate for no reason. Or get this, be typing just fine and my fingers just stop bending, LOL. Funny huh? Yeah, you have to laugh, it’s the only thing that keeps me going.
Each time these things would happen I would go to the Dr. and of course, they wouldn’t find anything wrong. It wasn’t until I did my own research to put it all together to figure out that the EDS(Ehlers-Danlos Syndrome) was causing all the weird joint stuff and the CM(Chiari Malformation) the rest of it.
I ordered and read the book “Contents Under Pressure” by one of our fellow Chiarian and notices a Dr. Mary Gumerlock from OU Medical Center’s name so I went to see her since she had also treated my mother after a fall. She did a CINE MRI on me and noticed that I had decreased spinal fluid flow posterior to the medulla due to multilevel degenerative spondylosis with acquired stenosis at levels C3-C6 but C5-C6 AP canal diameter measures between 7 and 8 mm. NOT GOOD. AGAIN I didn’t want surgery and why should I , I was still able to walk, having more good days than bad, still able to work and act to everyone else as if I was ok.
NOW. The rushes of spinal fluid to your brain the make you feel as if you’re gonna black out and the electric shocks, yeah, those, started on the 19 th of September and they haven’t stopped except when I’m on so much meds I can’t think straight. Today is the 3 rd day, ok 2 nd day I’ve felt like a person. But that’s only if I get up for a little bit then lay down for a while. It’s getting old.
I went back to see Dr. Engles on the 2 nd of October and he sent me for an MRI. Got it back and I guess its bad too. We are supposed to be getting together to talk about surgery after I see Dr. Hynd, Rhuemotologist, on the 15 th of October, 2009.
My symptoms now are as follows:
Blurred vision
Snoring
Gagging
Severe headaches and neck pain
Hypersensitivity to smells and light
Nystagmus
Arm weakness
Joint Pain – Severe
Rushes to my brain with extreme pain when I strain
Brain zapps ( I don’t know how else to explain)
Tingling/numbness (right side more than left)