One patient with glioblastoma still alive nine years later
by vwxyz on Sun Feb 24, 2013 12:20 PM
My son complains of soreness every day on the entire left side of his head. He sleeps with his hand over that side and said it helps a little. His surgery was in the left cerebellum (lower part of the brain) very near the occipital lobe.
I had a severe injury to my leg where I have to wear a compression stocking to keep the blood from pooling in my ankle. It aleviates the aching pain as well. I was just wondering if the medical field has a "very very light" compression cap for the head for the soreness etc. It would keep the head warm too.
Kat54, Kathleen, I will relay to my son about sleeping elevated. I wish I could afford a recliner chair for him. It might be more comfortable sometimes. Thank you for your support. Jan
by jpearson472 on Sun Feb 24, 2013 04:08 PM
Jan, I dont know if they make a compression skull cap but what about trying a stocking cap. im sure it would be a lot cheaper and you can always find one with the pressure that would be comfortable to sleep in
by karynk on Mon Feb 25, 2013 05:40 AM
My husband always complained about the side of his head - ALWAYS! He just usually pulled the hood up on his sweatshirt. I would make sure that you ask your son before you spend the money on something like that. Tom would barely let me touch that side of his head. He surely wouldn't have tolerated a cap. He he can tolerate it, perhaps a little heat...they sell all sorts of things you can warm in the microwave or even in hot water that he could perhaps lay over that side. I don't suggest laying on top of the heat source though.
He used a wedge pillow that we got from a home health care supply store - for the elevated sleeping.
by vwxyz on Mon Feb 25, 2013 05:04 PM
It was just a thought and I wondered what others thought. Fluids accumulating is similar to chronic lymphodema and the Docs usually prescribe some kind of "very light wrap or very light compression device "personally made for the person" after they measure the afflicted area."
My thoughts were in response to someone on a forum that mentioned the fluids that pool in the empty surgical cavity. I could relate with the pain in my leg being very sore and painful (without the light compression stocking) because of fluids accumulating etc. Nothing more. In theory, reality, and in life, it "supports" the afflicted area.
Thank you all for your input. I know it is not the same. I know my sons entire side of his head is sore ALWAYS no matter how high he turns the thermostat in his apartment. Being my sons mom, I would like to find a way to make him more comfortable so he can function for longer periods on his feet and in the world, putting more quality in his life without popping pills during this time in between treatments. I do not want him to give up. We will be seeing his research N.O. this week.
Please, keep the mature comfort suggestions coming our way, and, again, thank you for your input. Jan
by SarahGrey on Mon Feb 25, 2013 08:50 PM
I'm sorry I don't understand 100% (only because my husband didn't have surgery for his GBM). But I would think the cap might not work because any fluids accumulating/pressure would be inside the skull - the cap wouldn't be able to access the pressurized area. Right? Or am I missing something?...
But, a close-fitting and snug knit winter hat sounds like it might be comfortable and warm for him?..
PS - I slept in a recliner in the hospital a few nights; horribly uncomfortable for the back and legs. I agree a "wedge" would be great - my husband uses a few pillows (in like a V shape) and it works well too.
Wishing you the best, Sarah
by vwxyz on Tue Feb 26, 2013 04:42 AM
Sarah, I was referring to the "very very light pressure" in the right area. Just enough to eleviate the soreness. My son can put weight on the entire left side of his head with his hand and "it helps some" he says.
There are such things as trauma caps for the head in the medical field. Not being a Dr., I do not think it would be a good thing for people with b.t. My opinion is it would be too snug.
The structure of any very light compression device is it stretches, has very light pressure, supporting in the right areas, and creates warmth, not constricting like a girdle. It is personally made for each patient after careful measurement and applies very light pressure to only areas needed. Thats all I was referring to. Actually anything that stretches without constriction might help. Just a thought.
As for the fluid subject, yes, a wedge would be comfortable keeping head and spine elevated.
by vwxyz on Tue Feb 26, 2013 04:57 PM
I cannot expect anyone who has not needed a compression material device to understand how it supports. Not being a Dr., I just had the thought that it is a possibility it might work and help to support the head from soreness and aches making life more bearable. With my son, there are times the soreness is more than fluid build up. All I could think of was how to support his head giving him quality in his life so he can function on his feet in comfort in this world longer.
by SarahGrey on Tue Feb 26, 2013 06:04 PM
sounds like a good idea - why not try it? like you said, anything we can do to help our loved ones is a good thing :)
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