November 26, 2013 at 12:51 am #620Eliza and JordanParticipant
I’m uploading the results of Jordan’s MRI.
When Jordan pointed out the oddities of the scans, such as the empty sella, the flattened corpus callosum, his radiologist paused for a moment then declared that they were “probably normal”
That said, his family physician is willing to prescribe him diamox, provided he gains weight. At his check up, he was around 6′ and weighed 117 lbs. (The doctor was afraid that any adverse reaction, namely dehydration, could damn near kill him) He’s managed to gain at least 5 lbs since then, but he is still incredibly underweight. So underweight that at the time of his doctor’s visit, his doctor was afraid that he could die of organ failure in a few weeks.
It’s cold up in Indianapolis right now (that’s where he’s at), and that might be making his headaches worse than usual. Additionally, in the scans, you can observe that there is a lot of CSF (white stuff) near the front of his head, which is where most of his pain is located.
He has pain here and there, but this terrible headache, his inability to control or do simple tasks with his right arm, the moodiness, just what can we do?
We know that processed food (even these supposedly good chicken hot dogs from whole foods) wreck havoc on him. (As this seems to be the case with other sufferers of chronic arthritis)
So what do we do guys?December 5, 2013 at 8:45 pm #4648Dr. DianaKeymaster
Boy, does that bring back memories! My pituitary was much flatter than this, and I had much more fluid in the subarachnoid space, giving the doctor pause. The he decided that it was “probably normal”. Personally, I think all doctors need to look at images in coordination with signs and symptoms, right? I remember mentioning to the doctor that although this occurred in 6% of normals, perhaps I shouldn’t be considered ‘normal’ if I had every symptom of increased pressure in conjunction with this presentation? 😉 No one here can tell you what to do, of course, but I did want to mention something for everyone — especially for someone in such a delicate position as Jordan! Diamox can be diagnostic in these situations (as it was for my kids and I). If CO2 levels are 22 or above, taking an evening dose of Diamox may be all that is needed to tell if high pressure is part of the problem. One patient began to get a little bit of relief in AN HOUR! I gave it overnight. Bingo! I remember waking up without that horrible pressure for the first time in a couple of years. Even better, my son came BOUNDING down the stairs after his first night, yelling, “It worked! It worked!” 😉 So, Jordan’s doctor may want to consider trying it for a day or two — a ‘trial’, so to speak — it may be diagnostic in and of itself. Again, if Jordan is too acidic, it won’t work, so please be sure CO2 levels are OK first, though. Many of us go into ‘remission’ after a period of time, and frankly, brains shunts are not something most of us want to jump to unless all other alternatives have been considered first. So many sad stories there… Will you keep us posted? Big hug…
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