I was diagnosed with...
I was diagnosed with a left anterior clinoid meningioma abut to the left carotid artery, extending into the cavernous sinus and in close proximity to the optic nerve. It took me two years to get a diagnosis because no one would listen when I finally did I had several opinions even one from a top base of the skull doctor at USCD who told me it needed to come out and that it was the cause of all my symptoms, I also had an ophthalmologist who saw me and said getting glasses would do know good because he believed the cause of my vision issues was the tumor because of where it sat. When I first saw my neurosurgeon here he said there was concern and this needed to come out two weeks later when I saw him he did a 180 on me and said it had all of a sudden seemed to stop growing and we should wait because I have a young son. That being said my symptoms over the last two years have progressively got worse, I have double vision even with my glasses on now and I have had to have them change in strength three times in the last year, it is now to the point that with them off I can’t see anything clearly anymore and even with them on I can’t make out certain writing unless it’s greatly magnified. My issue is that every time I see my neurosurgeon here he now tells me none of my symptoms are from this tumor yet all the symptoms I have been complaining about are the same ones I began complaining of in 2010 when no one took me seriously, and it’s not just that but they have progressively become worse and new symptoms have started. To get to the point can these tumors cause vision loss, seizures, facial drooping, I was also recently diagnosed as haveing short term memory issues and that I am not functioning at the level I should be for my age and education (I’m 42 and have a BSN) they also said that they felt I was not capable of taking care of myself! I new there was something wrong before I was able to convince any doctor to do the proper test which finally got me diagnosed yet I keep getting mixed messages one eye doctor says glasses won’t make this better it’s because of where the tumor is, and a top surgeon at USCD said this needs to come out, yet the eye doctor my neurosurgeon sent me to said well if it was growing at a fast rate she could say the vision problems were caused by it, at the time the tumor had been growing at a fast rate and that was why they were so concerned but then she said that on my last two mri’s the tumor had appeared to stabilize so it couldn’t be the cause and now my Nuerosurgeon keeps telling me my symptoms are not related that these tumors don’t cause those symptoms and when I recently saw him he blew me off about the issues I have going on and said you don’t have no symptoms and then all of a sudden have symptoms from these tumors and when I said to him that that is not what I have said that I have complained of symptoms since 2010 no one believed me although my neurologist noted I had neurological deficits she never sent me for the proper testing and I have continued to complain of worsening symptoms since. I just don’t understand why I keep getting the blow off from my neurosurgeon here? Any advice would be greatly appreciated!
Doctor's Assistant: Do you keep personal medical records to help track this?
Yes I have everything including films from 2007 when I had a severe case of bacterial meningitis they reviewed those films and they said there was definitely no signs of the tumor then however in 2012 when I finally got someone to do an mri it was then there and because of the size they said it was growing faster then what was normal which was a cause of concern to them so my neurosurgeon said there was no rush to get it out but I definitely had cause for taking it out so he told me to go home and think about what I wanted to do and see him in two weeks and we would discuss how we wanted to go about this, however when I saw him two weeks later the response I got from him was you have a young child you have to think about here and that the surgery was going to be a lot more extensive then he originally thought and said we should wait for as long as we can, I then found out in my patient portal where he wrote his notes for the visit that that he said in there it was highly likely they would not be able to remove the whole tumor because of it being against my carotid artery and that there was concern because it was extending into the cavernous sinus and that I would probably need a bx in the near future, yet he never disclosed any of that to me and now he just tells me that I need to think of my son and none of these symptoms are related to the tumor and also abuse of the extent of the surgery and what they will have to do I will have a big scar and “he doesn’t want to have to listen to me being upset with how the scar looks” to me that is least of my concerns I am more concerned about it continuing to wrap around my carotid artery which will definitely make complete removal then I,possible.
Doctor's Assistant: Anything else in your medical history you think the doctor should know?
In 2007 I recieved a back injection and because of that I developed a paraspinal and Paola’s muscle abcess, bacterial meningitis, a 2inch Duran tear and the infection then spread to my right lung where I developed an empyema and underwent a thoracotomy with decorticating of the right lung. I almost died as a result, it was a couple of years after that, that I began noting my vision getting progressively worse in my left eye, I have had migraines since 13 but the headaches I started having were completely different then my migraines and they did not respond to any of the meds I had used for my migraines, I also started noting facial drooping of my right eyebrow and at times the right side of my face along with a constant tingling sensation on the right side, I also noticed this constant pressure behind my left eye and it seems sometimes like there is something in my line of vision that make it difficult to see at times and it’s most noticeable to me when I am looking down foe example when I read, I also started being woken from sleep in the middle of the night with severe headaches, my peripheral vision is horrible I have crashed my car three times in just the last year because I don’t see well, and I have stopped driving at night altogether because the lights from other cars and stoplights etc are so blurred it makes seeing at night driving very difficult for me, I also have Lou’s ringing in my ears, have developed seizures, and have more and more difficulty with word recall, and my memory in general to the point that I spend more time everyday trying to remember where I put something then anything else, I started having severe panick attacks prior to me first being dx and my thyroid levels went out of control and.