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adult medulla blastoma

Riverland01
Posts: 1
Joined: Sep 2007

I am interested in making contact with any adult that has been diagnosed with madulla blastoma or caregiver who is connected with someone who is going through this disorder

beaudog
Posts: 3
Joined: Jan 2013

My brother had a medullablastoma removed in 1983 st the sge of 27. Following surgery he had full brain and spinal cord radiation.

At age of 48 he developed anterior horn cell degeneration, essentially radiaton necrosis. He is quite disabled: cannot walk without support, muscle wasting, speech and swallowing problems, cannot move his eyes, ect.

Anyone else have this problem. Would like to share treatments for symptom management.

Mary

globia
Posts: 9
Joined: Jan 2009

My husband Kevin diagnosed Feb 2004 with mb, tumor completely resected, radiation to brain and spine. He had another tumor develop in his spine which was discovered Dec 2010, could not remove tumor due to involvement with nerves. He was using a walker up until his high dose chemo with stem cell replacement Nov 2011. Kevin had a foley cath (because he was completely incontinent) so for the two months he was in the hopsital he hardly ever got out of bed and didn't walk at all. he had complcations & got fluid in his lungs and couldn't breath about 3 weeks into the treatment and was rushed to ICU. He was intubated, then went went into AFIB, they shocked his heart 5x to bring him out of it...almost lost his life but he pulled out of it. He spent 2 weeks in ICU. All of this left him in a very weakended state, he spent 2 months at UCLA and 1 month at inpatient rehab, had to get a g-tube because he couldn't eat due to a swallowing disorder. This slowly got better over time along with the help of a speech therapist (they also deal with swallow disorders). He is in a wheel chair most of the time but can climb the stairs (with rails) which keeps him strong and he uses a walker upstairs. About 6 weeks ago, Kevin's left eye started getting stuck looking left while the other could move and focus. After seeing two opthomologists who said they could do nothing for him, I took him to UCLA to see a neuroopthalmologist. He was helpful and gave a name for this (he said, rare) condition (don't recall the name). Basically, late onset nerve damage from the radiation in 2004. But the good news is he recommended Kevin see a neurologist to prescribe an anti-seisure medication which hleps calm the overactive nerves. Ever since he started taking the medicaiton (Carbamazopine ER 200mg) he hasn't his eye is better (hasn't got "stuck" at all since and he's been on the drug for about 3 weeks). The only down side is he said his balance feels worse. I'm not sure if this would work for your brother but perhaps he could see a neuroophalmoogit and/or a neuologist. My heart goes out to you and your brother. Stay strong and take it all one day at a time. Also I got help for Kevin by persistence. Explore other avenues when you hit a dead end. You may find some answers. Gloria

beaudog
Posts: 3
Joined: Jan 2013

My brother had a medullablastoma removed in 1983 st the sge of 27. Following surgery he had full brain and spinal cord radiation.

At age of 48 he developed anterior horn cell degeneration, essentially radiaton necrosis. He is quite disabled: cannot walk without support, muscle wasting, speech and swallowing problems, cannot move his eyes, ect.

Anyone else have this problem. Would like to share treatments for symptom management.

Mary

angelatg
Posts: 4
Joined: Aug 2012

My mother was diagnosed with medullablastoma in March 1990.  She had surgery to remove the tumor and took WBRT for 8 weeks.  She is alive today but lives with many deficits.  She has progressed dementia along with many other issues.  Thank you all for your posts.  They are so helpful to read about others in our situation.

 

angelatg
Posts: 4
Joined: Aug 2012

My mother was diagnosed with medullablastoma in March 1990.  She had surgery to remove the tumor and took WBRT for 8 weeks.  She is alive today but lives with many deficits.  She has progressed dementia along with many other issues.  Thank you all for your posts.  They are so helpful to read about others in our situation.

 

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