Author Topic: Strange new symptoms  (Read 2901 times)

cburley1

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Strange new symptoms
« on: August 29, 2011, 11:39:54 am »
I'm 8 months post gk, before gk I had facial spasms, they are gone but I still have eye twitching & some sporatic facial numbness, there is about 2 mm shrinkage on one side, ENT said my balance on an side is gone, but I've compensated well. Lately I'm feeling really off balance and sometimes when I lay down & close my eyes it feels like my eyes are going back & forth and sometimes it feels like my head is going back & forth even though I'm not moving...anyone else have this problem..plus I'm super tired again, I have fibro so having something in my brain that doesn't belong there can cause a flare (considered trauma) so I'm sure some of this if from that. I also have continuous neck, shoulder & upper back pain....can a tumor in the back of your head cause that, my tumor is 1.6 cm and against my brain stem, facial nerve cannot be seen except where it enters brain stem. I was diagnosed in Nov 2010 there was no tumor in brain scans in 2007. Grew a little faster than most an's, but I know everyone is different...any comments on this would be appreciated.
1.6 cm into CPA  IAC an diagnosed in Nov, 2010..gamma knife in Feb 2011...facial nerve involved, only small section going into the brain stem shows on MRI, tumor either has it pushed aside or is wrapped around it, facial spasms & twitching, hearing loss, balance off, migraines....

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Anasazi42

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Re: Strange new symptoms
« Reply #1 on: August 29, 2011, 10:47:55 pm »
Hi,

I'm almost 4 months post-surgery (retrosigmoid) and I have been dealing with balance issues, numbness on my left side, and uncoordination on my right side (AN side). Lately, I've been feeling really wonky and foggy and really tired, but I also feel like my coordination and reflexes on my right side are getting worse. If I try to use it, my right hand starts trembling. I feel super off balance too. More so than usual. My face is still paralyzed on the right side, my double vision cleared up on its own, and now I just have a little nystagmus during some eye movements. My nystagmus was really bad just after the surgery. What your post tells me is that we'll experience different things and odd symptoms as our bodies heal for many months after the surgery. I feel aches and pains in my neck and shoulders because I know my gait is off, and my body has been compensating for the poor balance. It took a good two months before my body could detect when it was leaning. For a long time, when I thought I was upright, I was actually leaning far to the left. So, this has taken a toll on my body. I would keep track of when your closed eyes feel like they're moving. Like, is it when you're overly tired? Or had you been driving a lot earlier that day? I would ask myself questions like that to try to determine when you feel your worst. I'm going to have to do this, too, because I definitely don't feel quite right. I hope you feel better, but if things get worse, see what your neurologist says. Good luck and keep us posted! 
Diag. Dr. Saffran ENT 3-9-11; 45 yrs at time of diag. 3.5+ cm AN rt side; 9 hr retrosigmoid craniectomy 5-12-11 FL Hosp. South, Neurosurgeon Dr. Melvin Field; Gold wt implant
Post-op: facial para. (rt), double vision (cleared up), SSD, tinnitus, balance issues, ataxia, movement disorder

lrobie

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Re: Strange new symptoms
« Reply #2 on: September 03, 2011, 09:10:13 pm »
cburley1,

I'm just reading your post about seeing ENT in Pittsburgh.  Did you see Dr. Hirsch and was it on 8/2/11?  If so, I was there the same day.  I just found it strange to read about someone who might have been there the same day.  I was W&W, but now tumor has grown and I need to decide on radiation or surgery.  They suggested either cyberknife or mid fossa surgery.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

cburley1

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Re: Strange new symptoms
« Reply #3 on: September 19, 2011, 07:34:16 pm »
No...I saw Dr. Todd Hillman at Allegheny Hospital...on Aug 2 apparently we were at least both in Pittsburgh on the same day for the Acoustic Neuroma....lol...
1.6 cm into CPA  IAC an diagnosed in Nov, 2010..gamma knife in Feb 2011...facial nerve involved, only small section going into the brain stem shows on MRI, tumor either has it pushed aside or is wrapped around it, facial spasms & twitching, hearing loss, balance off, migraines....

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