Cerebellar Craniotomy
 

My wife has brain mets and we have gone the WBR, Gamma knife Tykerb route. We are signing up for the Neratinib clincal trial. Last week she started showing alarming symptoms and we found out that tumor growth had closed her 4th ventricle, causing hydrocephalus.
Her options were to do nothing and die in a few weeks or have a Cerebellar Craniotomy to get some of the tumor out to buy some time.
She had the surgery Tuesday, and it was scary seeing her being so ill. After 2 days in thje nuero ICU, they got her in the room last night.
This morning, she woke up and was hungry. She is back. It is a miracle. We are so relieved. She goes home Saturday or Sunday.
My take away-
-Women are stronger than men
-if you don't know if you should quit, then keep going
-We live in the age of miracle and wonder

Thanks for letting me vent.

Re: Cerebral craniotomy
 

So glad to hear she is doing better. So good for her to have you as a support.
Keeping you both in my thoughts
Lisa

Re: Cerebral craniotomy
 

What a rollercoaster ride! I'm so glad you got your miracle. Here's to the Neratinib trial being more of the same.

Re: Cerebral craniotomy
 

What a brave fighter your wife is, no doubt she is helped enormously by having you to support her, my best to you both.

Re: Cerebral craniotomy
 

How is your wife? Keep us posted.
Forher (husband)

Re: Cerebral craniotomy
 

Thanks for asking. Surgery went well. She was in Nuero ICU for 2 days, then to her own room. We got her home on Saturday. She has significant gait/balance issues and has some significant PT coming. We have relatives staying with her so I can keep my job.
We are hanging on, but just barely. I had no idea how impactful this surgery would be. They don't seem to tell you that before hand and we asked specifically about recovery strategies.
The clinical trial meeting is in 8 days so we shall see how it goes.

Re: Cerebral craniotomy
 

It sounds like a very rough ride. Glad to hear you have relatives who can help out. I hope she recovers and gets on the trial. Brain surgery is not for the weak of heart. You two must be some tough cookies and your wife is lucky to have such a supportive husband.

I wish both of you strength and courage and time to make more good memories.

Jacqueline

Re: Cerebral craniotomy
 

Having taken the other thread off-topic, I thought I'd mitigate a little by bringing my response back to this thread. :)

Yeah, the doctors will drive you crazy that way. They never seem to tell patients what to expect. I think it's because they're not entirely sure what to expect, and they don't want to frighten us with all the possibilities.

What my neuropsychologist also said is that neurosurgeons, in particular, seem to have a skewed perception of reality: "You can walk, you can talk, go live your life." Uh huh.

It's still very early in her recovery, and from reading other accounts, this will pass. For now, please consider looking into neurocognitive therapy for your wife. A TBI center will have many resources and services that can help her recover more quickly.

If it were me, though, I would point out to the doctors that it was less than helpful not to be warned about what to expect. A little venting might be good for the soul, and perhaps if a similar situation arises in the future (although I hope not), they will be a bit more careful to offer a more complete explanation of what you can expect.

Please keep us posted about how she's doing.