Post by sigie on Aug 23, 2008 20:54:10 GMT -6
HELLO WE ARE NEW TO THE SITE. MY MOM (SIGIE) WAS DIAGNOSED WITH A SPINAL CORD TUMOR TWO YEARS AGO OCT 5TH. IT ALL STARTED SPRING 2006 WITH A WEIRD ITCHING SENSATION BETWEEN HER THUMB AND POINTER FINGER. BY THE TIME OCTOBER ROLLED AROUND ITCHING WAS ALL THE WAY UP HER ARM AND UNCONTROLLABLY PAINFUL. IN THE MEANTIME HER LEFT HAND WHERE THE ITCHING WAS ACTING WEIRD MOBILITY WISE AND SENSATION WISE. SHE ALSO HAD NECK PAIN THAT WAS SO UNBEARABLE. OCTOBER 5TH I TOOK HER INTO THE ER. THEY DID AN MRI OF HER NECK AND BRAIN. THEY FOUND A LARGE MASS/TUMOR IN THE SPINAL CORD. C3-5. SHE WAS IN FOR SURGERY NOVEMBER 7TH. THE SURGERY LASTED ABOUT TWELVE HOURS AND COULD NOT BE RESECTED. THE TUMOR WAS INTERTWINED IN SO MANY NERVES ACTUALLY, THEY COULD NOT EVEN GET THAT MUCH FOR A BIOPSY. FROM WHAT THEY COULD TELL IT LOOKED LIKE A PEDIATRIC ASTROCYTOMA. HOWEVER, IT RAPIDLY GREW C2-C6. BY FEBRUARY ONLY 3 MONTHS LATER SHE WAS IN FOR 2 MONTHS OF RADIATION. WE DID NOT SEE ANY CHANGE IN THE TUMOR UNTIL 9 MONTHS AFTER RADIATION. THE MRI FINALLY SHOWED GREAT IMPROVEMENT (SHRINKAGE). SHE JUST HAD ANOTHER MRI 1 MONTH AGO AND GROWTH OF SOMETHING THEY ARE NOT SURE IF IT IS TUMOR GROWTH OR CYST. ANYHOW,TO MAKE A LONG STORY SHORT SINCE RADIATION AND SURGERY SHE HAS LOST ALMOST ALL FUNCTION OF LEFT ARM (ITCHING HAS SUBSIDED). EXTREME NUMBNESS IN LEFT HAND WEIRD HOT COLD SENSATIONS. SHE HAS THAT WEIRD TIGHT NUMB FEELING AROUND ABDOMEN. HER LEGS AND FEET ARE REALLY NUMB AND HEAVY. SHE HAS TERRIBLE EDEMA IN LEGS AND FEET. SHE HAS THIS WHITE POWDERY STUFF THAT BUILDS UP UNDERNEATH HER SKIN THAT GETS REALLY HARD AND PAINFUL. SHE IS ALMOST COMPLETELY INMOBILE BECAUSE HER LEGS ARE SO HEAVY AND NUMB. HER SHOULDER BONE DISINIGRATED DUE TO STEROIDS, HER SKIN IS SO PAPER THIN DUE TO STEROIDS AND HER TEETH ARE FALLING OUT ONE AFTER ANOTHER BECAUSE OF THE POWDER SUGAR THAT IS USED IN THE NARCOTIC (FENTANYL STICKS). SHE IS ON SEVERAL NARCOTICS FOR NERVE PAIN. MOM IS ONLY 60 AND SHE LOOKS LIKE SHE HAS AGED 15YRS IN LESS THAN 2YRS. I AM WRITING THIS FOR HER BECAUSE SHE CANNOT TYPE OR EVEN WRITE. SHE FEELS LIKE SHE IS ALL ALONE IN THIS AND IT IS VERY HARD TO UNDERSTAND AND DEAL WITH. THE PAIN IS SO HARD TO DEAL WITH AND HER BODY IS FALLING APART BEFORE HER EYES. WE ARE WRITING I GUESS TO TELL HER STORY AND TO MAKE A CONNECTION WITH SOMEONE WHO CAN RELATE. MY OLDER SISTER TOOK HER INTO THE ER. TONIGHT BECAUSE HER LEFT LEG HURTS SO BAD FROM THE EDEMA AND THE WHITE POWDERY STUFF THAT GETS AS HARD AS A ROCK UNDER HER SKIN AND CAUSES SO MUCH PRESSURE AND PAIN. NOBODY SEEMS TO KNOW WHAT IT IS. SO ANOTHER TRIP TO THE ER. HOPEFULLY SOMETHING WILL GET RESOLVED. WE HAVE HAD THREE OPINIONS AND THE LAST TWO OPINIONS WILL NOT DO SURGERY AGAIN BECAUSE OF THE NATURE OF THE TUMOR ENTERTWINED IN ALL THE NERVES AND DUE TO ALL OF THE SCAR TISSUE AND DAMAGE THAT RADIATION AND PRIOR SURGERY HAVE DONE. THEY ARE TALKING MAYBE CHEMO.
THANK YOU FOR LISTENING JUST NEEDED TO GET ALL OF THIS OFF MY BACK. IT IS VERY HARD TO SEE MY MOM GO THROUGH ALL OF THIS SUFFERING WHICH I AM SURE ALL OF YOU CAN RELATE TO IN SOME DEGREE.
THANK YOU FOR LISTENING JUST NEEDED TO GET ALL OF THIS OFF MY BACK. IT IS VERY HARD TO SEE MY MOM GO THROUGH ALL OF THIS SUFFERING WHICH I AM SURE ALL OF YOU CAN RELATE TO IN SOME DEGREE.
