"Not a traditional recovery..."

[Mimispree]

One of the wonderful nurses from my medical/surgical team is arranging for me to have all of this testing done because she said I'm, "...not having a traditional recovery."  However, when I read this forum, I think many people have had a similar recovery.  There are those with a much better recovery, but plenty who suffer with dizziness, head pressure, and facial paralysis like I do.

I was hoping to be doing a lot better by now--in fact, I thought I'd be on the other side of recovery by now, but I've read that there are some people who have symptoms for a couple of years.

I'm totally disappointed to be debilitated this long.  But I knew because I had the double-vision for four and a half months, it was going to delay things.

Anyway, I hope all of this ends soon.  I am hoping to get some specialized therapy that's going to "cure" me.  I'm really sick of this. 

If there are some of you with prolonged dizziness, I'd love to read how long it lasted it what you did to get better. 

Thank you!

[lc1966]

How big was your tumor? Dr  Gore in  Portland is a God in my words!! I had nystagma when I went to see him after 2nd surgery and he was abble to remove all the tumor...still have some paralysis, but I am lucky to be here!! Have you talked to another Dr.?

[mandy721]

Hi Michelle,
Reading your post brings back so many emotions.   My husband's recovery was, and still is, complicated.  Most people come out of this surgery and get back with their lives with out missing too many beats.  My husband is 5 1/2 years out, and his life has changed due to complications from the surgery.  He is SSD, facial paralysis which has improved, but his eye doesn't close, he has cognitive deficits, and emotional changes, too.  5 1/2 years ago  the general response was that if you were still having problems, you just weren't trying hard enough, or you were a malingerer.  People who say that have no idea what it is like to be dizzy, have balance issues, unrelenting headaches, facial paralysis, extreme fatigue, SSD, executive functioning deficiencies, and then mental health issues as a result.  There seems to be more awareness within the medical community that this is a very complicated surgery, and these post-surgery issues can have a profound impact on one's life.  I get very angry when people attribute their good outcomes to their positive attitudes and doing everything "right".  We did everything right, but Ken still experienced long-term, life changing complications.  You aren't alone, and the more we speak up the better. 

[IanInVenice]

Hello

Thanks for your comments.

I am 3 months post op and while I'm grateful for walking, talking and eating, I'm still having headaches and dizziness.

Ian.