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Sleeping with a Brain Cyst

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Brain cysts can develop pretty much anywhere on the brain. Wherever your brain cyst is may create different symptoms than someone else's cyst. One thing I found with my posterior fossa arachnoid cyst (a cyst on the back of the brain), was that there were an array of different symptoms at night time versus during the day.

At night the cyst was putting pressure on the brainstem and cerebellum and this caused extremity numbness and breathing problems (apnea). I also could not lay on a regular pillow. As my cyst grew, so did my head's distaste for a regular pillow. I would wake up with my head aching beyond belief.

I started shopping around for a different pillow. I tried contoured pillows, tempurpedic pillows, you name it, I tried it. I hesitated to try a down pillow, but as my last resort, I did, and I have not been without my down pillow since back in 2003. A down pillow gives so much more than a regular pillow. I also got the softest down pillow available. It is the only pillow to this day, that I can lay my head on. Especially since now I also have the soreness of where my surgery was, an incision on the back, left side of my head and my shunt also causes discomfort lying on it. My shunt is on the right side of my head, behind my right ear.

When I was going through all the numbness and apnea, I realized that sleeping all the way down on one pillow, was causing a lot of my night time symptoms. The more I slept up right, the less symptoms I had and the better of a day I would have the next day from being able to sleep. I looked for an adjustable bed, but because they were so expensive, my mother and I came up with a way to adjust pillows to make an elevation for my head. I didn't just stack the pillows, but interlaced them, so they climbed to an incline. If an incline helps, you may want to try starting lower and adding to it as needed. You don't want to make your neck sore. Sleeping at an incline saved me until I was able to get my surgery. I did not have near the numbness I did prior to my incline and my apnea was cut way down.

Listen to your body. Get tuned in with it and read up on your type of cyst as much as you can. Your body will a lot of times tell you what is wrong. When my body went numb at night, I realized that your nervous system branches out from your brain stem. So I knew that my brain stem had pressure on it and it only made sense knowing that my cyst was right on the back of the brain where the brain stem is. I just thought about the facts, what I knew and what I learned.

I hope this information helps even one person out there. As I think of other ideas and tips I will let the readers know!

God bless everyone out there living with and dealing with a brain cyst. You are all strong and brave and you can get through whatever you are required to get through. Get in touch with your inner self, try to stay calm and try to think clearly. Remember, your body will tell you what is going on, you just have to stop and listen.

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EmpowHER Guest

About 5 years ago I was discovered having nocturnal seizures by my wife. After a CAT scan, they found an arachnoid cyst about the size of my fist on my right posterior fossa near the base of the skull. I was told it had nothing to do with my seizure. They also found enlarged ventricles and tole my I was probably born with hydrcephalus. I continued having night time seizures. After other tests, sleep studies, different meds; they finally got me on a cocktail of medications that seemed to help. But, I was still having occasional seizures. I started gettin really bad headaches during the day. It was like my head was in a vise. But, if I pushed on my fore head, the pressue was relieved. After telling my neurologist about that; the signed me up for an LP (not fun). They discoverd that I had twice the normal pressure. Then I got sent to a neuro surgeon. He decided to fenestrate the cyst. Thet 1 hr surgery turn into a 2 hour surgery. When he tried to fenestrate, the cyst just keptt filling with csf. So, he basically gave up on trying. But, that surgery caused issues in my cerebellum. Causing difficulty with balance. Difficuly with changes in elevation. My hands felt like cartoon balloon hands. I had to concentrate on taking every step. I was walking like I just got off a horse. Eventully got a walker. 40 yr old man walking with a walker.
The neurosurgeon said it would get better. But, "it's the brain. It heals at its own rate". So, after 2 months with no balance, I got into balance therapy. The therapist told my wife (but not me) that I'd probably never walk right again. But, I worked my butt off at home and at therapy. And I walked again after 4 months.
Even though it has not been perfect since, I decided to go back to work. I was going crazy sitting around the house, unable to do much.
That was about 3 years ago.
But since then, everytime I have a seizure, my balance is messed up. And, I am more sensitive to the pressure. Lately, I've been having more seizures. When I wake after a seizure, I can feel the pressure in my cyst. I suspect it's from laying on my back on my pillow.
My neurologist recenlty moved her practice out of state. I'm trying to get in with a new neurologist. Then, I'll pitsh my idea to him. In the meantime, I'm going to look for a down pillow. Thanx for the idea.

July 6, 2017 - 7:55pm
EmpowHER Guest

Thank you so much for your comments. You have no idea what they mean to me. After all I have been through, and I was completely alone with no one to help me, give me ideas of what to do, or even so much as instpiration, I now want to at least offer that to others. If I have an idea of what worked for me with my cyst, I want to pass it on in hopes that maybe....it will help someone else. Even if just one person. I learned soooo much over the years living with and dealing with a brain cyst that I want to let others know what I learned and offer support, because if anyone has been through it....from one end of the spectrum to the other, it is me. As I am sure, now, there are many more who have as well.

I don't know about New York yet. I have to send all my records to the Chiari Institute up there to see if they will view them along with my films. I hope they will give me an answer, without having to travel so far, if they can help me. It is a tough decision to decide whether or not to pursue this surgery being that I am now separated from my husband and trying to raise two small boys...9 and 11. But I will keep everyone posted on that decision and outcome.

God bless you too! Anyone who lives with a brain cyst is a survivor! And I always have kept in my mind, all these years, the saying, "Whatever doesn't kill you, only makes you stronger." And I know this to be a fact!!

Take care,

March 15, 2010 - 5:01am

hi maria, just wanted to share how much your decison to share your story has already fired or renewed the spirit of myself and i believe others who have visited/joined empowerher and your blog. having gone thru all this on your own and gotten to this point, well my heart goes out to you and i only hope i too can be a comfort to others while battling my cyst. how soon before you have to head for surgery in new york? take care and god bless you lee martinez

March 14, 2010 - 2:37pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.