Hi,
I am so sorry for all you are going through and dealing with. It sounds like you are just dealing with so much.
You know, anything is possible. I started the brain cyst forum on here because I had noticed there wasn't one, and since....so many people writing in it seems like there are just so many different issues with brain cysts. Although some people can have some similarities in symptoms, I have noticed that most people have different symptoms. Just so many factors involved in why the cyst causes one set of issues for one person, and a whole other set of issues for someone else. I think this is partly why drs. don't think brain cysts cause problems for people.
But let me tell you....brain cysts are real and the symptoms they cause....are real. If it were me....I'd see a good neurosurgeon.....and more than one if you have to, to find the "one" who can help you and is willing to help you. One who believes your cyst is causing your problems.
Let me tell you that one thing you may want to try, is to stack your pillows when you sleep. I had breathing issues too, with mine, getting terrible sleep apnea, and even difficulty breathing during the day, while upright. My cyst is so large, it takes up over 1/3 of my brain compressing my brain stem and cerebellum. It was putting pressure on the cerebellum and brain stem, and altering the functions of my body, that these 2 parts control.
I started sleeping more upright.....on a stack of pillows. Not just a straight-stacked, stacked, but more inclined. Putting one pillow on top of another in a way that it was a gradual incline, but high enough that the cyst wasn't putting so much pressure on my brain stem and cerebellum. It helped with my breathing, the dizziness I was getting while laying down and other things. You may want to try it.
You can also read my book, "It's all in Your Head," to see what I went through, what problems I dealt with, and how I dealt, etc. Here is the link - below. Everyone that has read it and contacted me about it, whether it is them that has a cyst or loved one, said it helped.
Like I said, brain cysts are tricky. What one cyst may cause for one person, may cause a whole different set of symptoms for another. Brain cysts can be multi-septated, meaning they have all kinds of tissue walls built up inside, and this causes them to grow and the CSF to not be able to move around inside them, freely, and get out of the cyst....flow its normal channel. It gets trapped and causes the cyst to grow and put pressure on the different areas of the brain.
If it were me.....I would go to a neurosurgeon who is very familiar with brain cysts - arachnoid cysts. See if you can send them copies of your MRI ahead of time, to review. Make a list of your symptoms and add to it as needed. Also, start a diary. Keep track of your symptoms, listing what happened (symptom), what you were doing when it started....were you just getting out of bed, walking, eating, what? Mention how long it lasted and how it stopped....what made it stop etc. Whatever you can. This way it can show a pattern or help you keep track of what happened and when.
But do try to get my book so you can see someone else's case, see if there are any similarities etc. Let me know if you have any questions, and please......keep me updated. I will be interested to know the outcome. You can reach me easily at: [email protected] or my site....www.arachnoidcystsupport.blogspot.com
Comment Reply
Hi,
I am so sorry for all you are going through and dealing with. It sounds like you are just dealing with so much.
You know, anything is possible. I started the brain cyst forum on here because I had noticed there wasn't one, and since....so many people writing in it seems like there are just so many different issues with brain cysts. Although some people can have some similarities in symptoms, I have noticed that most people have different symptoms. Just so many factors involved in why the cyst causes one set of issues for one person, and a whole other set of issues for someone else. I think this is partly why drs. don't think brain cysts cause problems for people.
But let me tell you....brain cysts are real and the symptoms they cause....are real. If it were me....I'd see a good neurosurgeon.....and more than one if you have to, to find the "one" who can help you and is willing to help you. One who believes your cyst is causing your problems.
Let me tell you that one thing you may want to try, is to stack your pillows when you sleep. I had breathing issues too, with mine, getting terrible sleep apnea, and even difficulty breathing during the day, while upright. My cyst is so large, it takes up over 1/3 of my brain compressing my brain stem and cerebellum. It was putting pressure on the cerebellum and brain stem, and altering the functions of my body, that these 2 parts control.
I started sleeping more upright.....on a stack of pillows. Not just a straight-stacked, stacked, but more inclined. Putting one pillow on top of another in a way that it was a gradual incline, but high enough that the cyst wasn't putting so much pressure on my brain stem and cerebellum. It helped with my breathing, the dizziness I was getting while laying down and other things. You may want to try it.
You can also read my book, "It's all in Your Head," to see what I went through, what problems I dealt with, and how I dealt, etc. Here is the link - below. Everyone that has read it and contacted me about it, whether it is them that has a cyst or loved one, said it helped.
http://www.amazon.com/Its-Your-Head-Maria-McCutchen/dp/1613460716/ref=sr_1_1?s=books&ie=UTF8&qid=1365364137&sr=1-1&keywords=it%27s+all+in+your+head+maria+mccutchen
Like I said, brain cysts are tricky. What one cyst may cause for one person, may cause a whole different set of symptoms for another. Brain cysts can be multi-septated, meaning they have all kinds of tissue walls built up inside, and this causes them to grow and the CSF to not be able to move around inside them, freely, and get out of the cyst....flow its normal channel. It gets trapped and causes the cyst to grow and put pressure on the different areas of the brain.
If it were me.....I would go to a neurosurgeon who is very familiar with brain cysts - arachnoid cysts. See if you can send them copies of your MRI ahead of time, to review. Make a list of your symptoms and add to it as needed. Also, start a diary. Keep track of your symptoms, listing what happened (symptom), what you were doing when it started....were you just getting out of bed, walking, eating, what? Mention how long it lasted and how it stopped....what made it stop etc. Whatever you can. This way it can show a pattern or help you keep track of what happened and when.
But do try to get my book so you can see someone else's case, see if there are any similarities etc. Let me know if you have any questions, and please......keep me updated. I will be interested to know the outcome. You can reach me easily at: [email protected] or my site....www.arachnoidcystsupport.blogspot.com
Good luck to you. I will have you in my prayers.
Sincerely,
Maria
April 7, 2013 - 12:57pmThis Comment
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