Hi,
I am awfully sorry to hear about all your troubles. You have really been through it lately it sounds like. There is a lot I can identify with and some I can't, but to start, I also have a posterior fossa arachnoid cyst. Mine is "very" large and takes up a third of my brain or more. It sits on the back of the brain and wraps around to the right. It has severely compressed my brain stem, cerebellum, it's compromised my 4th ventricle, my pituitary gland, my optic chaism (where are the optic nerves pass), and has shifted my brain up and forward.
My doctors, too, did not want to believe the cyst was the cause of all my symptoms. My symptoms started out with some confusion....like I could be in the middle of a conversation and my mind would just drift, and I would space out. Then the symptoms went to an achiness feeling in my head, especially at the back of my head. I couldn't rest my head too long on the back of the recliner or the back of acar seat. I started having this fullness feeling in my head, like I was under water and was always walking around shaking my head, trying to clear this fog. My heart, too, would beat weird....fast and felt out of synch. At night, I would wake up completely numb....every inch of my body was numb and my ex-husband had to push me over a little to get feeling back into my limbs. I felt like I'd been stricken with Polio or something while I slept. I dealt with terrible sleep apnea....I'd wake up gasping for air....choking etc. So frightening. That eventually moved to having difficulty breathing during the day while upright. All doctors wanted to tell me the same thing....they are normally asymptomatic and don't cause problems. That is not true. Brain cysts, no matter where they are, can put pressure on whatever part of the brain it is sitting and growing on. If it's on the back of the brain, like yours and mine....it can put pressure on vital organs such as the cerebellum and brain stem. This is dangerous. I found a surgeon in Phoenix, Dr. Robert Spetzler at Barrow's Neurological Inst., who knew all too well what these cysts can do and told me that I needed surgery. If I didn't have it, I was headed down a very "wrong road." So I had it and he fenestrated it.....knocked down all the walls inside the cyst. That may be something else you haven't been told. These cysts are good for building walls inside (tissue) like a honeycomb. Cerebral spinal fluid finds its way into the walls but cannot get back out, and this is how the cyst grows and builds pressure. They have to fenestrate the cyst (knock down the walls with a wand), and get the CSF communicationg with the rest of your CSF, normally. Doctors waited so long to treat and operate that my cyst just got too large and despite the surgery, it continued to get under pressure, so they had to put in a shunt. I wound up with more complications with the shunt, because the doc in my city of Albuquerque, did not care about me, listen to me, help me, or anything. So now, I have more problems. I wrote my book about my experience and it is now available, called, "It's all in Your Head." My memoir of living with the cyst and the road I had to travel. Maybe you'll look into it and hopefully will help you.
I would pursue the cyst. Don't give up. There is a doctor who knows about brain cysts, even if you have to travel some to get to him/her, like I did. These cysts can reek havoc on your brain...continue to grow and cause more problems. The sooner you find someone to believe you, and help you, the sooner you can start getting some relief. Please keep us updated. Remember....neurosurgeons are the doctors that deal with brain cysts....not ENTs, general physicians or neurologists. Stay on the hunt for a neurosurgeon and many of them will let you send copies of your recs to them to view your films etc. That is what I did....I mailed my surgeon copies of my medical recs and MRI. He viewed them and determined right away that I needed surgery....he called me and told me over the phone....then....I went to see him in Phoenix. Anyways, look into my book. See if you can get any answers from it or at the very least...comfort, knowing you are not alone. And you're not!
Comment Reply
Hi,
I am awfully sorry to hear about all your troubles. You have really been through it lately it sounds like. There is a lot I can identify with and some I can't, but to start, I also have a posterior fossa arachnoid cyst. Mine is "very" large and takes up a third of my brain or more. It sits on the back of the brain and wraps around to the right. It has severely compressed my brain stem, cerebellum, it's compromised my 4th ventricle, my pituitary gland, my optic chaism (where are the optic nerves pass), and has shifted my brain up and forward.
My doctors, too, did not want to believe the cyst was the cause of all my symptoms. My symptoms started out with some confusion....like I could be in the middle of a conversation and my mind would just drift, and I would space out. Then the symptoms went to an achiness feeling in my head, especially at the back of my head. I couldn't rest my head too long on the back of the recliner or the back of acar seat. I started having this fullness feeling in my head, like I was under water and was always walking around shaking my head, trying to clear this fog. My heart, too, would beat weird....fast and felt out of synch. At night, I would wake up completely numb....every inch of my body was numb and my ex-husband had to push me over a little to get feeling back into my limbs. I felt like I'd been stricken with Polio or something while I slept. I dealt with terrible sleep apnea....I'd wake up gasping for air....choking etc. So frightening. That eventually moved to having difficulty breathing during the day while upright. All doctors wanted to tell me the same thing....they are normally asymptomatic and don't cause problems. That is not true. Brain cysts, no matter where they are, can put pressure on whatever part of the brain it is sitting and growing on. If it's on the back of the brain, like yours and mine....it can put pressure on vital organs such as the cerebellum and brain stem. This is dangerous. I found a surgeon in Phoenix, Dr. Robert Spetzler at Barrow's Neurological Inst., who knew all too well what these cysts can do and told me that I needed surgery. If I didn't have it, I was headed down a very "wrong road." So I had it and he fenestrated it.....knocked down all the walls inside the cyst. That may be something else you haven't been told. These cysts are good for building walls inside (tissue) like a honeycomb. Cerebral spinal fluid finds its way into the walls but cannot get back out, and this is how the cyst grows and builds pressure. They have to fenestrate the cyst (knock down the walls with a wand), and get the CSF communicationg with the rest of your CSF, normally. Doctors waited so long to treat and operate that my cyst just got too large and despite the surgery, it continued to get under pressure, so they had to put in a shunt. I wound up with more complications with the shunt, because the doc in my city of Albuquerque, did not care about me, listen to me, help me, or anything. So now, I have more problems. I wrote my book about my experience and it is now available, called, "It's all in Your Head." My memoir of living with the cyst and the road I had to travel. Maybe you'll look into it and hopefully will help you.
I would pursue the cyst. Don't give up. There is a doctor who knows about brain cysts, even if you have to travel some to get to him/her, like I did. These cysts can reek havoc on your brain...continue to grow and cause more problems. The sooner you find someone to believe you, and help you, the sooner you can start getting some relief. Please keep us updated. Remember....neurosurgeons are the doctors that deal with brain cysts....not ENTs, general physicians or neurologists. Stay on the hunt for a neurosurgeon and many of them will let you send copies of your recs to them to view your films etc. That is what I did....I mailed my surgeon copies of my medical recs and MRI. He viewed them and determined right away that I needed surgery....he called me and told me over the phone....then....I went to see him in Phoenix. Anyways, look into my book. See if you can get any answers from it or at the very least...comfort, knowing you are not alone. And you're not!
Keep me updated.
October 1, 2011 - 5:06amMaria McCutchen
This Comment
Reply