Anyone develop any weird habits with GBM?

My mother was diagnosed with GBM 1/08.  After about 9 or 10 months of treatment with temodor she developed this weird habit of moving her mouth side to side constantly.  Has anyone experienced anything like this or similar?

 

On 7/9/2009 matt2281 wrote:

My mother was diagnosed with GBM 1/08.  After about 9 or 10 months of treatment with temodor she developed this weird habit of moving her mouth side to side constantly.  Has anyone experienced anything like this or similar?

Hi,

My husband was diagnosed with GBM in 10/08.  When he's tired, the side of his mouth droops, and it occasionally moves in a slow, clearly involuntary way.  He had a stroke during his resection, BUT I did notice this mouth movement prior to his diagnosis (one of the reasons I took him to the ER- something neurolgical was evident.)   Just a guess on my part, but I think it's the result of tumor, and trauma from surgery. It might be neurons firing again as the brain forms new pathways from any damaged areas. 

 

 

 

My sister had an astrocytoma , we are not clear on the exact cause (chemo/radiation, trauma from the surgery), but during radiation she began moving her jaw also. It got so hard she would bite her tongue and cheeks. We were told it was caused by "damage" , most likely the brain stem or close to. After a couple of weeks her right arm started doing the same thing and neither have stopped since January. There are muscle relaxers they can put her on to slow the "tremors" down . We also made sure we had plenty of glycerine mouth swabs and/or Peridex mouthwash. They both helped with the irritation from the mouth breathing caused from the movements to the roof of her mouth and tongue. I hope this helps ,

 

Good luck and god bless

Various medicines can cause these neuro-muscular problems. I know someone who had (we think) tardive dystonia or dyskinesia from dopamine blocking anti-schizophrenia and anti-anxiety meds. I would want to check on the whole pharm of a patient and see what the doctors think might be causing it... just in case it's not damage or swelling or necrosis but actually something that can be adjusted rather easily.

Hope.

Sarah

mom of Andy 26 dx GBM/PNET 1/009

Sarah is right.  Check the meds.  Often the doctors go with the first plausible explanation and won't consider anything other than their own first "godly" explanation.  My husband was on trileptal for two years before they figured out that he was having seizures, and SEVERE jerking of his left side esp. at night because his seizure meds. had caused him to have extremely low sodium levels.  Basically, his seizure meds were causing him to have seizures.

Jackiekay

My father was dx with GBM 5/08. He has experienced neurological symptoms like loss of feeling and ability to control legs and arms, tingling in his hand, and at times aphasia-like symptoms. These can be caused by damage to essential parts of the brain from e.g., surgery, radiation, chemo. Another possibility is that there is swelling caused by chemo or tumor that incapacitates an area of the brain.

HI:

It's hard to say what the cause may be as all the drugs, radiation, and surgery can cause alot of havoc on the nervous system. Someone else noted that some neuro drugs can cause Tarditive Dykinesia, whch is a very serious, unreversable syndrome noted by uncontrolable facial , toung , and jaw muscle movements. I would notify the dr.immediately just to be safe.

 Hope this helps, chuck