since I started this thread my fibrosis has spread to the middle of my chest leftward to my shoulder and down my upper arm. up the back of my neck where it is met by lymph fluid that goes up to the base of my scull. and the lymph is now filling available space on the other side of my head( right side ).I am also noticing some numbness in my left forearm down to my finger tips. itching of the swollen areas is becoming noticeable. and swallowing is now causing a vacuum effect that is causing my ear pain to become worse. the skin in the fibrosis areas is becoming shiny and thin. (like it is stretched to the limit). I have no fever and areas are not warmer than others. as if this were not enough I am having pitting edema around my ankles along with excessive urination. I know that avoiding dehydration is important during the healing process. but I am here looking at a lot of empty water bottles. and I have been trying to eat the recommended 2500 calories to promote faster healing. But have noticed that my nose and eyes water during and for a little bit after eating. I know that this can be signs of lung aspiration. but I have not coughing fits. just have to clear my throat a lot. my blood pressure is normal. but I am going to the restroom every half hour. My pain meds are not doing the trick anymore so I have done a no no. I have increased pain regimin by 5mg oxycodone every 4 hours.( I emailed my prescribing doctor and let him know that I was doing this). so my ass is covered. The pressure in my left head and neck is becoming so intense. maybe is should just stop typing and slow down and relax and see it it gets better. shawn u.


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.