Hello everyone, I have a genetic, autoimmune disease called Antiphospholipid Antibody Syndrome, or APS. There is no known cure and APS awareness in the medical community is very poor.
Simply put, APS is a hyper-coagulation disorder -- and more. I have Primary APS. (read more at apsfa.org)
Before being diagnosed, I had a hemorrhagic brain tumor which caused years of seizures until I had a right temporal lobectomy to remove the benign tumor. I also have had four miscarriages; three strokes; I almost died when multiple bilateral embolisms entered both of my lungs, causing bilateral plueral effusion and infarct. The PEs were the result of my first DVT. THEN I was diagnosed. Up until my diagnosis, I thought that I was a very unlucky, and for some reason, unhealthy person for no reason. My hematologist/oncologist tells me each of these medical maladies were due to APS.
The middle of last summer, I began experiencing terrible pain on the right side of my face when it was touched, or even if it touched a pillow as I lie down. I saw my neurologist, who said I probably have Trigeminal Neuralgia -- which MAY BE CAUSED BY ANOTHER BRAIN TUMOR. So off to MRI I went.
I saw my neurologist the same day and brought the CD of 1152 images with me. He looked at about 12 images and pointed out the images I've seen before: "There's a stroke, there's a stroke, there's a stroke, there's your massive resection of your lobectomy --- WOW, look at THIS!" <-- There was a black spot that neither my neurologist nor I recall ever seeing on my previous MRIs. "What is that?" I asked. "I'm not sure," said my neurologist, "It could be a BIG stroke, or something else..." Hmm. If I had another "big stroke," (I have already relearned walking and talking), wouldn't I have known it??) So, we wait for the radiologist's report.
I had a 3-T MRI, with and without contrast. I just received the written report. My neurologist is out of town for two weeks; which leaves me trying to decipher the radiological lingo.
So, I came here, hoping someone would be familiar with this "language."
Specifically, these snippets from the report:
1) "Right temporal cystic encephalomalacia and gliosis persist." <----- Is this a reference to my previous temporal lobectomy?
2) "Remote right frontal and parietal infarcts are present." <----- I am fairly certain these are old stroked areas (?)
3) "Again noted is focal susceptibility artifact in the medial left temporal lobe." <----- No idea what this is.
4) "Small sub occipital lymph nodes are noted."
Sorry this is long, but I am worried. I have been through a lot. Now that I have a CD and report, there is no physician around to tell me what it all means. :-(
Thank you all! I appreciate any help and feedback you can provide. Have a nice day!
Simply put, APS is a hyper-coagulation disorder -- and more. I have Primary APS. (read more at apsfa.org)
Before being diagnosed, I had a hemorrhagic brain tumor which caused years of seizures until I had a right temporal lobectomy to remove the benign tumor. I also have had four miscarriages; three strokes; I almost died when multiple bilateral embolisms entered both of my lungs, causing bilateral plueral effusion and infarct. The PEs were the result of my first DVT. THEN I was diagnosed. Up until my diagnosis, I thought that I was a very unlucky, and for some reason, unhealthy person for no reason. My hematologist/oncologist tells me each of these medical maladies were due to APS.
The middle of last summer, I began experiencing terrible pain on the right side of my face when it was touched, or even if it touched a pillow as I lie down. I saw my neurologist, who said I probably have Trigeminal Neuralgia -- which MAY BE CAUSED BY ANOTHER BRAIN TUMOR. So off to MRI I went.
I saw my neurologist the same day and brought the CD of 1152 images with me. He looked at about 12 images and pointed out the images I've seen before: "There's a stroke, there's a stroke, there's a stroke, there's your massive resection of your lobectomy --- WOW, look at THIS!" <-- There was a black spot that neither my neurologist nor I recall ever seeing on my previous MRIs. "What is that?" I asked. "I'm not sure," said my neurologist, "It could be a BIG stroke, or something else..." Hmm. If I had another "big stroke," (I have already relearned walking and talking), wouldn't I have known it??) So, we wait for the radiologist's report.
I had a 3-T MRI, with and without contrast. I just received the written report. My neurologist is out of town for two weeks; which leaves me trying to decipher the radiological lingo.
So, I came here, hoping someone would be familiar with this "language."
Specifically, these snippets from the report:
1) "Right temporal cystic encephalomalacia and gliosis persist." <----- Is this a reference to my previous temporal lobectomy?
2) "Remote right frontal and parietal infarcts are present." <----- I am fairly certain these are old stroked areas (?)
3) "Again noted is focal susceptibility artifact in the medial left temporal lobe." <----- No idea what this is.
4) "Small sub occipital lymph nodes are noted."
Sorry this is long, but I am worried. I have been through a lot. Now that I have a CD and report, there is no physician around to tell me what it all means. :-(
Thank you all! I appreciate any help and feedback you can provide. Have a nice day!

TO BRAINTALK!
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