I too understand the "pinball" sensation of being sent back and forth from one doctor to another, never getting good, solid answers. Reading about both your's and Lee's symptoms reminds me so much of myself. I too had strange eye problems and still do. So many doctors do not want to believe that these cysts can cause not only "all" these problems, but any of them. They have heard so long, that these cysts are normally asymptomatic that for them to switch gears and think that they could be the culprit of all our problems, is totally foreign to them. But they can. And it just depends on where the cyst is, and what it is pressing on as to what type of symptoms you have. If you know where your cyst is, do some research to find out what parts of the brain are in that area. Find out everything you can about your cyst....where it is, what in your brain is being compressed etc. That is what I did. I felt like I had to "sell myself" to doctors. It was rediculous. But it is what it took. I had to become "smart" at a time when I didn't want to have to think at all, just so I could prove to them that I knew what I was talking about and say "see.....my cyst is here, and this is what this part of the brain is responsible for."
Like Lee, I had that same fogginess....boy did I have that! It was horrible and got worse and worse over time. I contantly felt like I was living in a fog, or dreamworld...like the world around me was fake. Like it wasn't real. It was strange. What I did...my actions....seemed more out of habit rather than truly being in the moment.
Your symptoms, to me, sound like they could definitely be related to your cyst. As I have said many times, because I think it not only helps, but as your brain becomes less functionabe will help, keep record of your symptoms....day-to-day, hour-to-hour, whatever you need to, to mark the changes, differences, and day-to-day physical trials you live with. If you can, read up on the part of the brain that your cyst has grown on. Find out what its functions and responsibilities are. Once I did that, I knew I was right....my brain stem and cerebellum were completely compressed and everything I dealt with, had to do with the responsiblities of the brain stem and cerebellum...and then-some.
I wish you all the luck in finding someone who will listen to you and give you the treatment you deserve. Do not give up....there is someone out there who knows what these cysts are capable of. And they will "get it" and help you. It may take perserverance on your part to find them, but you will. But...if it were me, I would get on it, looking for him, because "IF" your cyst is and does what mine did....as time passed and my symptoms worsened, I couldn't put two thoughts together and that made my finding someone, a challenge. I couldn't think straight to save my life....my cyst was literally squishing my brain. If you can, enlist family to help you find a neurosurgeon. Send your recs, copies of your MRI, to a few different neurosurgeons, with a letter....a list of your symptoms.
I wish you all the best and please keep us updated....I will keep you in my thoughts and prayers.
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Hi debbie,
I too understand the "pinball" sensation of being sent back and forth from one doctor to another, never getting good, solid answers. Reading about both your's and Lee's symptoms reminds me so much of myself. I too had strange eye problems and still do. So many doctors do not want to believe that these cysts can cause not only "all" these problems, but any of them. They have heard so long, that these cysts are normally asymptomatic that for them to switch gears and think that they could be the culprit of all our problems, is totally foreign to them. But they can. And it just depends on where the cyst is, and what it is pressing on as to what type of symptoms you have. If you know where your cyst is, do some research to find out what parts of the brain are in that area. Find out everything you can about your cyst....where it is, what in your brain is being compressed etc. That is what I did. I felt like I had to "sell myself" to doctors. It was rediculous. But it is what it took. I had to become "smart" at a time when I didn't want to have to think at all, just so I could prove to them that I knew what I was talking about and say "see.....my cyst is here, and this is what this part of the brain is responsible for."
Like Lee, I had that same fogginess....boy did I have that! It was horrible and got worse and worse over time. I contantly felt like I was living in a fog, or dreamworld...like the world around me was fake. Like it wasn't real. It was strange. What I did...my actions....seemed more out of habit rather than truly being in the moment.
Your symptoms, to me, sound like they could definitely be related to your cyst. As I have said many times, because I think it not only helps, but as your brain becomes less functionabe will help, keep record of your symptoms....day-to-day, hour-to-hour, whatever you need to, to mark the changes, differences, and day-to-day physical trials you live with. If you can, read up on the part of the brain that your cyst has grown on. Find out what its functions and responsibilities are. Once I did that, I knew I was right....my brain stem and cerebellum were completely compressed and everything I dealt with, had to do with the responsiblities of the brain stem and cerebellum...and then-some.
I wish you all the luck in finding someone who will listen to you and give you the treatment you deserve. Do not give up....there is someone out there who knows what these cysts are capable of. And they will "get it" and help you. It may take perserverance on your part to find them, but you will. But...if it were me, I would get on it, looking for him, because "IF" your cyst is and does what mine did....as time passed and my symptoms worsened, I couldn't put two thoughts together and that made my finding someone, a challenge. I couldn't think straight to save my life....my cyst was literally squishing my brain. If you can, enlist family to help you find a neurosurgeon. Send your recs, copies of your MRI, to a few different neurosurgeons, with a letter....a list of your symptoms.
I wish you all the best and please keep us updated....I will keep you in my thoughts and prayers.
Maria R.
June 10, 2010 - 4:18amThis Comment
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