May 20, 2013 - 3:04 pm
I seem to have a very rare case of brain masses that my neurosurgeon, neurologists & oncologists can't seem to figure out. They have never seen a case like mine before. So I'm hoping that someone reading this will know of a similar case. I will try to summarize as much as possible, while not leaving out the important details
I started getting headaches (end of Feb 2013) out of the blue and found out that I had 3 brain masses. My diagnosis of these masses keeps changing. At first, I was told that all 3 were malignant tumors. Then 2 weeks later, the full pathology report on the 1 'tumor' that they removed and biopsied, showed it was just a hematoma, although I never had a concussion and had a clean MRI of my brain in Jan 2012. So my oncologist confirmed that the other 2 'tumors' probably were not tumors but hematomas as well. But my MRI results 6 weeks after 1 'tumor' was removed (mid april), showed that they could be tumors, especially since swelling of 1 of the masses increased significantly. So my neurosurgeon put me back on steroids (Dexamethasone) hoping it will decrease the swelling and then I go back for another MRI at end of May. My neurosurgeon confirmed he can't even do a biopsy on the 3rd mass that swelling increased due to the location (right parietal lobe). I also want to add that I had a carcinoid tumor removed from my airway / lung (1/3 of my lung was removed) in March 2012. At first, my doctors thought the brain tumors could be related. However, my thoracic surgeon confirmed all of the tumor was removed, the margins were clear and the cancer did not spread. Luckily I never smoked, so my lungs healed extremely well and I was feeling great (until the headaches in Feb).
My neurosurgeon pointed out that there could have made a mistake and the cancer actually did spread. So I had another ct scan done in Mar 2013, which confirmed I did not have cancer anywhere else. Since my neurologists have never seen a case like this, I got a 2nd opinion from a neurologist with 25 years experience, who was highly recommended by a colleague. She offered to do more research but still can’t figure it out.
Before the carcinoid tumor in my lung in 2012, I was a very healthy 43 year old female. Besides never smoking, I also don’t drink alcohol (I don’t even drink coffee or soda), just mainly water with lemon. So as I mentioned above, I’m hoping someone will know of a similar case and can suggest possible diagnosis, treatment, neurologists, etc. Friends and family suggested I contact the Hospital of the University of Pennsylvania, since they have one of the best neurology depts. So if anyone knows of any neurologists there (or anywhere) that you can recommend, I would really appreciate it.
Thanks in advance for your help and I apologize for the long post.