granuloma lesions only on one side of the brain?

Does anyone else here have granulomas only on one side of their brain? I have a huge granuloma lesion on my left parietal lobe and the rest of my left brain is dotted with granulomas on of the left frontal lobe. I'm struggling with painful migraines, pain on the left side of my head (the spots where there are granulomas hurt!), mood swings, depression, anger, and more. Has anyone here had brain granuloma lesions removed? I am miserable.

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Although I have lesions on both sides of the brain, my left side has numerous more than the right. I have headaches every day on the left side and the mood swings, etc. I also have pain in my left cheek and eye socket and some numbness in other areas on the left. I have a twitch in that cheek and eye socket also but Cellcept has helped that some. I only twitch now when I am nervous or tired. The twitch seems to be moving to the right side now though. I have been taking wellbutrin for a long time and have just started prozac and it seems to help the anger and moods. I am also fixing to start remicade which my doctor hopes will help the headaches and lesions. My lesions doubled in a year.

My doctor says it is not a good idea to remove them if you can help it. The surgery is very dangerous.

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I tried Wellbutrin and it gave me a seizure. I think the largest lesion is calcified and maybe that will make it easier to remove. I am completely willing to try the brain surgery, I absolutely have tried every SSRI, Paxil, Prozac, etc. Do you know any surgeons who will attempt the surgery? I also suffer from schizophrenia due to the abuse I suffered as a child, so I at least want the lesions to be gone or just to be permanently gone myself. I am tired.

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My symptoms are bad. I work from home, I cannot stand to be around people. Do you have sarcoidosis anywhere in your body? Mine is only in my brain.

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I know what you mean about not being able to stand to be around people. I can tolerate my office at work (heating a/c wholesaler) but I can't hardly stand even the grocery store. And, it is really hard alot of the time to remember what I am trying to say. I am hoping the meds will help that.

I don't think my neurologist would do it but he did say that might be a last ditch effort. What does your neurologist say? I think there is some really great sarcoid doctors in California. I know one is called Dr. Sharma. Maybe you could go see him. He is like a leading expert on sarcoid. If you put his name in the search at the top, it will show posts with him in them and one may tell where he is in California. Or you can google Dr. Sharma and Sarcoidosis and it will bring him up.

So sorry that you are having such a tough time. Although the headaches have not progressed for me as far as yours have, I can't imagine trying to do any work with them at the migraine stage.

Good luck and may you have a pain free day.

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Thank you :)

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The Remicade infusions will help immensely. I had them all over after one year on Remicade, all if my inflammation is resolved. I'm just dealing with the after effects if coming off prednisone.

I don't recommend the surgery and I'm certain most neurosurgeons will tell you the same. It's just too risky.

Be well.

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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