"Fluid collection" in Brain after Radiation

I_Promise
I_Promise Member Posts: 218 Member
Hi,

My sister was having progressive weakness of her left side and some balance issues. She just completed her 6 weeks radiation. The docs were debating steroids but because we heard so many negative things about them we were reluctant. My sister is such a strong person. She is willing to endure a lot and never complains.

Well one afternoon, I had enough. My darling sister was trying to do her morning jog but she kept telling me that she felt like she was running crooked, that her left side felt "dead". I brought her to the ER, where a CT head and MRI brain with and without contrast was performed. It shows a huge collection of fluid 6cmx7cmx6cm that is compressing her brain and causing a 9mm midline shift from right to left. She was put on dexamathasone immediately. We were also told that she will need to have drain and a reservoir to prevent reaccummulation.
Because I am a doctor (not a neurologist or surgeon) I was able to bring her home with me.

Anybody else had this happens? Her NO tells me that she will feel better once the drain is in. One positive thing about this is that it is not the tumor growing back and causing all the swelling. As long as it is not the ^%*&^%*^% tumor, we are ok.

She is right now at Panara bread typing her PhD dissertation, looking hot in her pink high heels and her long wig, as if nothing in the world is wrong. The scans are ugly. I think youth is incredible.

Within 24 hours, she could play the piano again. Call the steroids dangerous if you want, it is in our case a savior drug. It is medically giving us time before the drain.

I will keep you posted.

Julia

Comments

  • palmyrafan
    palmyrafan Member Posts: 396
    Dex
    Julia,

    I am glad that you were able to get your sister the medical assistance she needed so quickly.

    I had radiation post brain surgery and did not experience enough swelling to warrant having a drain inserted. However, I was on Decadron at the time of the radiation (1996) throughout the 6 week procedure. I did notice some nerve damage to my legs (still acts up occasionally) and I gained about 35 pounds while on the dex.

    As for the swelling, I would imagine that could have a lot to do with location of the radiation, the dosage, etc. If it were given in an area that could affect her balance, that could be why she is off kilter. But as for accumulation of fluid, I have never heard of it myself, but that is not to say it does not happen.

    Hope your sister feels better soon! She is in my prayers.

    Teresa
  • I_Promise
    I_Promise Member Posts: 218 Member

    Dex
    Julia,

    I am glad that you were able to get your sister the medical assistance she needed so quickly.

    I had radiation post brain surgery and did not experience enough swelling to warrant having a drain inserted. However, I was on Decadron at the time of the radiation (1996) throughout the 6 week procedure. I did notice some nerve damage to my legs (still acts up occasionally) and I gained about 35 pounds while on the dex.

    As for the swelling, I would imagine that could have a lot to do with location of the radiation, the dosage, etc. If it were given in an area that could affect her balance, that could be why she is off kilter. But as for accumulation of fluid, I have never heard of it myself, but that is not to say it does not happen.

    Hope your sister feels better soon! She is in my prayers.

    Teresa

    Thank you Teresa
    I always follow your comments! I think you are an inspiration! (and so is your husband!)

    Julia
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    your sister blog
    I wanted to keep up on your sisters blog as I dont know how much longer I will go on this site. I cant seem to find the link.
  • I_Promise
    I_Promise Member Posts: 218 Member

    your sister blog
    I wanted to keep up on your sisters blog as I dont know how much longer I will go on this site. I cant seem to find the link.

    my sister's blog
    Dear 4theloveofmysis,


    Her blog is at:

    http://one-eighty-kat.blogspot.com/

    She writes regularly; there is about a 2-3 week period between real time and when she writes an entry.

    I read about your sister. I cannot imagine the pain. I understand how much you love her. I will always remember her.

    Julia
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    I_Promise said:

    my sister's blog
    Dear 4theloveofmysis,


    Her blog is at:

    http://one-eighty-kat.blogspot.com/

    She writes regularly; there is about a 2-3 week period between real time and when she writes an entry.

    I read about your sister. I cannot imagine the pain. I understand how much you love her. I will always remember her.

    Julia

    Thank you
    Thank you. It is unbearable...I really want to talk to her so bad. I kissed her for the last time one week and one hour and fourty six minutes ago...
    Im praying for your sister I hope you get your miracle...
  • I_Promise
    I_Promise Member Posts: 218 Member

    Thank you
    Thank you. It is unbearable...I really want to talk to her so bad. I kissed her for the last time one week and one hour and fourty six minutes ago...
    Im praying for your sister I hope you get your miracle...

    None of this monster tumor makes sense
    Your sister or nor you should have ever had to go through this. I am living a nightmare. Every day. I want to wake up.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    I_Promise said:

    None of this monster tumor makes sense
    Your sister or nor you should have ever had to go through this. I am living a nightmare. Every day. I want to wake up.

    I know that nightmare
    I lived that nightmare for 240 days. Everyday waking up to it. That cancer robbed me of the only sister I had. It took away my best friend. It ripped my heart out.It forever changed my life.I dont even know what to do with myself. My sister was the smartest person I know. I turned to her for everything. Im so lost now...
    I hate it when people say I know how you feel, but I truly know how you feel.I wanted to wake up, I now never will...
  • micgrace
    micgrace Member Posts: 131

    I know that nightmare
    I lived that nightmare for 240 days. Everyday waking up to it. That cancer robbed me of the only sister I had. It took away my best friend. It ripped my heart out.It forever changed my life.I dont even know what to do with myself. My sister was the smartest person I know. I turned to her for everything. Im so lost now...
    I hate it when people say I know how you feel, but I truly know how you feel.I wanted to wake up, I now never will...

    Only someone who has been
    Only someone who has been through this nightmare of losing someone to GBM will ever know what the indescribable loss, the complete sense of powerlessness is like. There is life after the loss for us the survivors, but it so changed. My life is never the same again.