Possible cavernous sinus tumor

Posted by icecreamlover76 @icecreamlover76, Jul 10, 2023

Hello there. I am thankful to have found this support forum.
About six months ago, or so, I started having weird, sharp, and sometimes throbbing pain in my right eye. The pain felt kind of deep, and nothing I had experienced before. Some days it wasn't all that bad. Other days, the eye pain, and the headaches were so rough that I couldn't get my day started. Things always seemed worse in the mornings.
Well, all this kept going on, and then it seemed I was having ear infections. I started getting throbbing ear pain, mainly in my right ear. But at times, in the left as well. But at first, I related that to a cold I had gotten. Even the right side of my neck would sometimes ache. I kept thinking that i was just sleeping oddly.
However, after talking with my doctor, and them just thinking it was sinus issues, and alergies, I was getting frustrated. So just recently I went to see an ENT. He ordered a CT scan. It came back showing that my right cavernous sinus is full. It also mentioned that there was suspected intraparotid lemph nodes. But I do not know what this means. Whomever interpedted the CT scan, recommended an MRI. So this is what the ENT is now recommending. I am in the process of getting this done. But the earliest I could get this scheduled is two weeks from now.
I have noticed in the last two, or three days, that my right ear has started throbbing more. It can feel pretty painful. Also, it can feel as though there is a roaring sound in that ear. There are times where it can be more intense.
I say all this to ask, if I do possibly have a cavernous sinus tumor, is this something that people can survive with?
Will my quality of life be limited?
And, what are the possible treatment options?
I am already disabled. I am blind, and have been since birth. I am quite independent. I have a good life. I don't possibly want to be more disabled, or need some sort of care. Not yet! I don't want that. I was about to start college in the fall. Everything was in place. But depending on what the MRI shows, and what might need to happen next, life really might change for me. I feel scared, overwhelmed, and quite sad! I don't want to jump the gun, and expect the worse.
However, I am pretty smart, and I understand what I read in my CT results. I also have been Googling things about the cavernous sinus. So I understand what can possibly be going on. I just don't know where to go with all of this. Or, what to think.
Any thoughts, and advice is much appreciated. I apologize this is as long as it is. I appreciate anyone who has taken the time to read all this, and whomever might respond.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

There is a wonderful, wonderful neurosurgeon out west (I live in Atlanta and I have chosen him as my dr) by the name of Dr Juan Carlos Fernandez-Miranda. He operates in this area all the time. He’s at Stanford medicine.
I have had 2 zoom meetings with him. Can you google his name and get his number? I would call his office and set up a zoom meeting once you have all of your scans. Be sure to get multiple hard copies on disk of all of your scans. Also, when you get your scans done, ask them if they can PowerShare them to Stanford medicine. Many prayers. I have a tumor in the meckels cave and he will be my surgeon if mine changes. Keep us posted. He’s an incredible man.

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