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Now You See It, Now You Don't

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  Recommend Message 4 in Discussion
From: PTResearcher2

Hi Chipper,
 
I agree with Daryl, if your symptoms have not improved, the tumor is probably still there. Did your MRI include contrast? Sometimes the pit tumors only show up when contrast is used.
 
If your tumor had "disappeared," it would have been caused by tumor apoplexy, which would have been very painful and usually requires immediate surgery. You would have had severe head pains and possibly nausea and vomiting. There would also be evidence that the tumor apoplexied. If it simply "disappeared," the slice probably didn't pick it up.
 
I once saw an endo who insisted that the tumor is never the size presented on the MRI. He believed that the 3mm slices could not represent the entire tumor. My tumor went from 5mm to 8.5mm in five years, then from 8.5mm to 1cm in two years. This endo believed that my tumor has always been the same size, the slices just could not capture the entire tumor. If he is correct, half of my tumor was hidden for seven years on more than 1/2 dozen MRIs. If he is correct, this could explain why your tumor "disappeared."
 
I hope your consult at OHSU went well. Did they continue to test you after the MRI results? Have you had specific tests done for Cushing's? Have you had midnight saliva cortisol tests done? That is the test that gave me a diagnosis. My cortisol was high at midnight 3 out of 4 times. I also have cyclical Cushing's, which is very hard to diagnose. I have been testing (with specific Cushing's tests) for four years. I also have low GH, but have never been offered GH replacement. They are very strict with prescribing GH (i.e. unless you're a short kid in sixth grade-then the govt requires it.) GH replacement is very expensive and sometimes insurance companies balk on paying for it, that may be why it is so hard to get a prescription. I know many patients that have needed GH for years, but their doctors and insurance companies fought them every step of the way. It should not be this hard to get needed hormone replacement.
 
I am sorry to hear about your latest obstacle in your quest for diagnosis and treatment. I have also come upon many obstacles in the past four years, you just have to push on and look forward to the day you start feeling better. I am still looking for that day...
 
Take care. You're in my prayers.
 
Meri 

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