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newly diagnosed, surgery coming soon

mccindy
Posts: 82
Joined: Jun 2013

Hello,

I was recently diagnosed with a brain tumor.  The docs think it is a grade 2 glioma.  I will be having surgery on July 11th, a craniotomy with resection.  It sounds like it will be an awake procedure.  Yikes!  I'm also having some things happen that I am not sure are from the tumor.  I know the seizure I had originally came from the tumor, I just don't know about the dizziness, headaches, confusion and memory problems I've had since then.  If anyone has any thoughts I'd welcome them!

BarbarandJack
Posts: 3
Joined: Jun 2013

Barbara just completed her surgery last Thursday.  What you are decribing is exactly what happend to her, but did not get the headaches.  Her awake surgery went great.  They explained it as 4 quarters of a foot ball game.  You are out except for the third quatrer when they remove the tumor.  They accomplish great things today.  Keep a positive outlook and go at it one day at a time.  Good luck with your surgery, we found waiting was the hardest part.

mccindy
Posts: 82
Joined: Jun 2013

Thank you so much for your reply!  It's good to hear what the experience is like for someone else going through the same thing.  May I ask, where was her tumor located?  And were they able to get all of it?  I'm glad to hear her surgery went well, and I hope her recovery is going well also.  The waiting is hard, but I have a lot going on until then so hopefully it will go quickly.

BarbarandJack
Posts: 3
Joined: Jun 2013

Barbara's tumor was on the left lobe.  It affected her speach and ability to select the right words.  They resected the "Hard" tumor but the rest remains, we go to a Neuro Oncologist on Monday and for a second oppinion in Boston on Friday.   They tried to make me go home when she was in the hospital but I did not.  You become the voice and the advocate.  Every time my wife opened her eyes I was there and I believe that was comforting to her.  I can tell how she is feeling by how good her speach is, she is best after rising iin the morning but after a few hours she must go back to rest. 

I set up a book with a spreadsheet for the medications, what, when and which doctor prescribed them.  I also keep a journal so that I can go back and review what has happened.  Also I keep a checklist for what needs to be accomplished and when. 

I hope some of this helps.  I am new to this also and just finding my way to get thru it.

Jack

 

Rayanmckee
Posts: 14
Joined: May 2013

Hi- Good luck with surgery and the pathology report. Are you on the steroid called dexa..something? It gave me dizziness and extra headaches. My tumor gave me awful headches too.Well, my memory and confusion got worse for me after the resection. My Dr. says I have "spatial confusion" because I keep getting lost while driving, it's worse in the dark. My tumor was where my optical nerves meet,(behind my right ear) so I lost partial vision in one eye from the surgery. Occasional confusion and dizziness is just something I live with. I take Aleve for the headaches, seems to be the only mild medication that works for me.Also, if I eat chocolate or sweets I tend to get a small sharp headache. Remember good things happen at hospitals.

 

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