Hey there, everyone.
I have concerns that about brought me to tears after coming home from a visit with the GI doctors yesterday. I've had several falls over the past few months and have had some serious injuries, like concussions with loss of consciousness, a broken rib, damaged kidney, etc. So there are a LOT of imaging studies on me. I've had a CT/angiogram for chest pain, two recent CT scans with contrast and several x-rays for abdominal pain. I have difficulty swallowing and have had several very unpleasant tests done for that. After the doctors collectively reviewed my scans after my swallow study came up abnormal, they were able to rule out a tumor or scar tissue around the opening of my stomach (cardiac sphincter), which is constricted. Oh, and after an endoscopy, I found out that my stomach is twisted just enough that it could easily twist around, which is an emergency.
What they DID find that has me concerned is that my aorta is putting pressure on the cardiac sphincter. My heart is already displaced and deformed, along with all of the valves due to underlying scoliosis. The good news is my deformed heart anatomy works. My reason for writing this is that all of this is caused by the severity of my hypokyphosis. Apparently there is no room for a trachea, esophagus, heart, stomach, or even an aorta in the very limited space that I have between my sternum and spine! Of course, the heart is the first thing to move, but I never would have attributed my GI issues to my scoliosis. That aorta has me freaked out!
I wish the doctors would quit focusing on frontal angles and look at what the hypokyphosis is doing to people. I may have posted this already, but my main curve has progressed at a rate of 2o per year and my "compensatory" curve is now only 8o less than my primary curve and progressed 3o per year. AND I'm developing a lumbar compensatory curve now. The neurologist I saw seemed pleased with this progression saying it was my body's way of evening itself out. They don't pay any attention to the sagittal view except to see if you are leaning forward or backward. No measurement was taken of my hypokyphosis. I think I'm going to e-mail that neurologist and ask for another referral to see my scoli doc, just to discuss it with him. IF I ever have surgery, I don't want to wait until my muscle disease progresses so far that it puts me at too great of a risk.
The only options the GI people gave me are the choice of two meds (I'm already on one). The other one is Viagra! She says it causes headaches and blurred vision, things I already fight with, no thanks! Option two is Botox to my cardiac sphincter which WILL cause acid reflux, no thanks, again. She said my final option if I wouldn't do that is to eat pureed food. No thanks there either. See why I want to cry? Grrr... I said I would puree it with my teeth! LOL
I never really stopped to think about ALL of the implications of hypokyphosis! Yes, I was alarmed when I found out about my heart. But it is working fine. I never realize how it affects everything else. I always thought one of the "benefits", if you will (no offense meant), to having scoliosis and being fairly balanced was my very straight posture. It hides my curves and I can dress around it and no one can even tell I have scoliosis. I can tell you first hand that there are no benefits to having such a small space to fit so many vital structures in!
Sorry for the very long vent. I'll repost this on my own timeline as I will need it there to reflect upon. I just thought more people would read this if I posted here. I felt it was important to get this information out. Maybe one of the scoli docs will read it and take hypokyphosis more seriously...
I'm tired of all the torment I go through with the tests and treatments... :'-(
Sad and afraid,
Rohrer01
I have concerns that about brought me to tears after coming home from a visit with the GI doctors yesterday. I've had several falls over the past few months and have had some serious injuries, like concussions with loss of consciousness, a broken rib, damaged kidney, etc. So there are a LOT of imaging studies on me. I've had a CT/angiogram for chest pain, two recent CT scans with contrast and several x-rays for abdominal pain. I have difficulty swallowing and have had several very unpleasant tests done for that. After the doctors collectively reviewed my scans after my swallow study came up abnormal, they were able to rule out a tumor or scar tissue around the opening of my stomach (cardiac sphincter), which is constricted. Oh, and after an endoscopy, I found out that my stomach is twisted just enough that it could easily twist around, which is an emergency.
What they DID find that has me concerned is that my aorta is putting pressure on the cardiac sphincter. My heart is already displaced and deformed, along with all of the valves due to underlying scoliosis. The good news is my deformed heart anatomy works. My reason for writing this is that all of this is caused by the severity of my hypokyphosis. Apparently there is no room for a trachea, esophagus, heart, stomach, or even an aorta in the very limited space that I have between my sternum and spine! Of course, the heart is the first thing to move, but I never would have attributed my GI issues to my scoliosis. That aorta has me freaked out!
I wish the doctors would quit focusing on frontal angles and look at what the hypokyphosis is doing to people. I may have posted this already, but my main curve has progressed at a rate of 2o per year and my "compensatory" curve is now only 8o less than my primary curve and progressed 3o per year. AND I'm developing a lumbar compensatory curve now. The neurologist I saw seemed pleased with this progression saying it was my body's way of evening itself out. They don't pay any attention to the sagittal view except to see if you are leaning forward or backward. No measurement was taken of my hypokyphosis. I think I'm going to e-mail that neurologist and ask for another referral to see my scoli doc, just to discuss it with him. IF I ever have surgery, I don't want to wait until my muscle disease progresses so far that it puts me at too great of a risk.
The only options the GI people gave me are the choice of two meds (I'm already on one). The other one is Viagra! She says it causes headaches and blurred vision, things I already fight with, no thanks! Option two is Botox to my cardiac sphincter which WILL cause acid reflux, no thanks, again. She said my final option if I wouldn't do that is to eat pureed food. No thanks there either. See why I want to cry? Grrr... I said I would puree it with my teeth! LOL
I never really stopped to think about ALL of the implications of hypokyphosis! Yes, I was alarmed when I found out about my heart. But it is working fine. I never realize how it affects everything else. I always thought one of the "benefits", if you will (no offense meant), to having scoliosis and being fairly balanced was my very straight posture. It hides my curves and I can dress around it and no one can even tell I have scoliosis. I can tell you first hand that there are no benefits to having such a small space to fit so many vital structures in!
Sorry for the very long vent. I'll repost this on my own timeline as I will need it there to reflect upon. I just thought more people would read this if I posted here. I felt it was important to get this information out. Maybe one of the scoli docs will read it and take hypokyphosis more seriously...
I'm tired of all the torment I go through with the tests and treatments... :'-(
Sad and afraid,
Rohrer01
Comment