Hi,
Thank you for writing. I am so sorry for all you have been through and live with. What a nightmare! I can relate in so many ways. And yes, I do think you ought to get my book...."It's all in Your Head," Maria McCutchen. You will be able to relate to some of what I write, and believe me.....there is a lot more that I went through that I didn't write about. No need to write about every little thing....but I did....I went through a lot, starting with trying to find a doctor to listen to me, believe me, and treat me.
To me....just a layman living with a brain cyst and more....but it does sound like your cyst is responsible. The dizziness is a very common problem with brain cysts, and I too suffered with balance problems and just feeling off balance. Very similar to what you describe. My quality of life was quickly fading and I was becoming housebound....unable to drive etc. Couldn't think clear, couldn't concentrate, remember. It was awful. Normal everyday functions were getting very difficult, including driving, grocery shopping, everything! I essentially became housebound too. What I discovered was that when I would lay down, the brain stem was getting squished. More pressure on it. Squished to the point where I would get numbness in all my extremities from pressure on the brain stem. I started sleeping more - upright....on lots of pillows. I organzied them so they were a gradual incline behind me. Not just a "stack" of pillows, and this seemed to help to get the pressure off the brain stem. Maybe you can try it. Not sure that it will off relief for "you" or maybe a little relief. But worth a shot.
Anyways, don't give up. You can think about contacting my surgeon in Phoenix....Dr. Robert Spetzler. He's a world renowned surgeon and for about $100.00, I sent him a copy of my MRI and he reviewed it. He determined I needed brain surgery, especially due to the fact that my cyst had developed walls inside of it, known as a multi-septated cyst. These walls, like a honeycomb, get CSF trapped behind them and the fluid is then unable to get back out. The cyst then grows and puts pressure on vital organs.
Anyways, if you want to look into Dr. Spetzler, that's something to consider. I was going downhill quickly and thought I was on my way out of the world when I was told about him. Also, look into my book, "It's all in Your Head." You may find similarities, give you ideas of what to do with and for yourself, or just get a sense of not beling alone with this terrible medical condition.
Please keep me updated. I hate to hear of others going through similar things I went through because I know how debilitating it is. But please....try to keep your chin up and don't give up. I had to keep pushing and pursuing help. No one would listen or believe me.....only my family and myself, and I kept trying to find answers.
Please keep me informed. If you do decide to contact Dr. Spetzler, let me know what you find out. If you need me to send you his number and address....I will.
Comment Reply
Hi,
Thank you for writing. I am so sorry for all you have been through and live with. What a nightmare! I can relate in so many ways. And yes, I do think you ought to get my book...."It's all in Your Head," Maria McCutchen. You will be able to relate to some of what I write, and believe me.....there is a lot more that I went through that I didn't write about. No need to write about every little thing....but I did....I went through a lot, starting with trying to find a doctor to listen to me, believe me, and treat me.
To me....just a layman living with a brain cyst and more....but it does sound like your cyst is responsible. The dizziness is a very common problem with brain cysts, and I too suffered with balance problems and just feeling off balance. Very similar to what you describe. My quality of life was quickly fading and I was becoming housebound....unable to drive etc. Couldn't think clear, couldn't concentrate, remember. It was awful. Normal everyday functions were getting very difficult, including driving, grocery shopping, everything! I essentially became housebound too. What I discovered was that when I would lay down, the brain stem was getting squished. More pressure on it. Squished to the point where I would get numbness in all my extremities from pressure on the brain stem. I started sleeping more - upright....on lots of pillows. I organzied them so they were a gradual incline behind me. Not just a "stack" of pillows, and this seemed to help to get the pressure off the brain stem. Maybe you can try it. Not sure that it will off relief for "you" or maybe a little relief. But worth a shot.
Anyways, don't give up. You can think about contacting my surgeon in Phoenix....Dr. Robert Spetzler. He's a world renowned surgeon and for about $100.00, I sent him a copy of my MRI and he reviewed it. He determined I needed brain surgery, especially due to the fact that my cyst had developed walls inside of it, known as a multi-septated cyst. These walls, like a honeycomb, get CSF trapped behind them and the fluid is then unable to get back out. The cyst then grows and puts pressure on vital organs.
Anyways, if you want to look into Dr. Spetzler, that's something to consider. I was going downhill quickly and thought I was on my way out of the world when I was told about him. Also, look into my book, "It's all in Your Head." You may find similarities, give you ideas of what to do with and for yourself, or just get a sense of not beling alone with this terrible medical condition.
Please keep me updated. I hate to hear of others going through similar things I went through because I know how debilitating it is. But please....try to keep your chin up and don't give up. I had to keep pushing and pursuing help. No one would listen or believe me.....only my family and myself, and I kept trying to find answers.
Please keep me informed. If you do decide to contact Dr. Spetzler, let me know what you find out. If you need me to send you his number and address....I will.
God bless and take care. You are in my prayers.
Maria
July 28, 2012 - 6:28amThis Comment
Reply