Russell Bro
02-19-2015, 08:23 AM
I'm Russell,
August 2014
I started with fluid in ears, bursting ear drum, severe headaches, 11-7-14 my right vocal cord paralyzed. I was still able to speak and eat liquid. No diagnosis from 3 different ENTs, one prescribed prednisone and antibiotics, one prescribed nose spray, the other kept having me return after 3 weeks.
After several MRIs of my head and neck, no diagnosis by my GP, ENTs, or Radiologist.
12-19-14 my left vocal cord paralyzed leaving unable to eat or drink so I went to ER got fluid IV and they sent me home.:angry: My wife called a friend that has close connection with my previous GP and told her what's going on, she immediately called Dr. Gusland and told him the story. the next day he had a bed at the Hospital and several Doctor's to see me, including a local Neurologist from UCLA and a ENT I had been seeing.
after 1 week at the local hospital and no diagnosis it was decided that I go to UCLA for higher care.
12-27-14 at UCLA Neurology stroke ward, team of 6 doctors and inters.
PET Scan found inflammations on my throat, upper spinal cord cutting off several nerves such as my vocal cords. Also a spot on my lung which was biopsied 1-8-15. This is when the rheumatologist team had determined they where 85% sure I had Wegener's GPA.
Finally a diagnosis, 1-10-15 infusion of Rituxan, still on prednisone, got flu shot, and pneumonia shot and sent home same day.
So happy to be home I went straight to bed 12:30 am, woke up an hour later aspirating and coughing so hard I collapsed my biopsy lung. Ambulance ride to local hospital. Next day Pneumothorax tube inserted in my chest, spent a week in hospital. By this time I have lost 35 lbs. My only source of nutrition is from my feeding G tube, and IV while at hospital.
2-18-2015
Now I'm home, still no voice, had 3 more Rituxan infusions over the last month, got a pic line to get TPN additional nutrition since I have been losing on average one pound a day and was at 109 lbs. from my original 170 lbs. when I was in shape before all this.
I am really curious how, when, and if my voice will come back on its own, Once it does I will be able to eat and gain my weight back and start feeling normal again.
I thought I was in pretty bad shape until I read may other post on this site, I have to say looking back, I know I did and am still going through a lot, but I feel much better about my situation now, assuming I get my vocal cords working normal again.
Thank you for reading and hopefully replying.
Russell
August 2014
I started with fluid in ears, bursting ear drum, severe headaches, 11-7-14 my right vocal cord paralyzed. I was still able to speak and eat liquid. No diagnosis from 3 different ENTs, one prescribed prednisone and antibiotics, one prescribed nose spray, the other kept having me return after 3 weeks.
After several MRIs of my head and neck, no diagnosis by my GP, ENTs, or Radiologist.
12-19-14 my left vocal cord paralyzed leaving unable to eat or drink so I went to ER got fluid IV and they sent me home.:angry: My wife called a friend that has close connection with my previous GP and told her what's going on, she immediately called Dr. Gusland and told him the story. the next day he had a bed at the Hospital and several Doctor's to see me, including a local Neurologist from UCLA and a ENT I had been seeing.
after 1 week at the local hospital and no diagnosis it was decided that I go to UCLA for higher care.
12-27-14 at UCLA Neurology stroke ward, team of 6 doctors and inters.
PET Scan found inflammations on my throat, upper spinal cord cutting off several nerves such as my vocal cords. Also a spot on my lung which was biopsied 1-8-15. This is when the rheumatologist team had determined they where 85% sure I had Wegener's GPA.
Finally a diagnosis, 1-10-15 infusion of Rituxan, still on prednisone, got flu shot, and pneumonia shot and sent home same day.
So happy to be home I went straight to bed 12:30 am, woke up an hour later aspirating and coughing so hard I collapsed my biopsy lung. Ambulance ride to local hospital. Next day Pneumothorax tube inserted in my chest, spent a week in hospital. By this time I have lost 35 lbs. My only source of nutrition is from my feeding G tube, and IV while at hospital.
2-18-2015
Now I'm home, still no voice, had 3 more Rituxan infusions over the last month, got a pic line to get TPN additional nutrition since I have been losing on average one pound a day and was at 109 lbs. from my original 170 lbs. when I was in shape before all this.
I am really curious how, when, and if my voice will come back on its own, Once it does I will be able to eat and gain my weight back and start feeling normal again.
I thought I was in pretty bad shape until I read may other post on this site, I have to say looking back, I know I did and am still going through a lot, but I feel much better about my situation now, assuming I get my vocal cords working normal again.
Thank you for reading and hopefully replying.
Russell