First Post, Anyone else have Paralyzed Vocal Cords?

**Russell Bro** · 02-19-2015, 06:04 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.

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

**LisaMac** · 02-19-2015, 06:43 AM

Yikes! You have been through a lot. I'm so sorry for you, friend. I've not experienced some of your symptoms but pray that you find some relief.

Keep on keepin' on, Bro!

By the way, I've found the weight you've lost. Its safe and comfortable here on my behind, lol.

**drz** · 02-19-2015, 05:40 PM

Most people get better with proper treatment. The inflammation should go down eventually as you move toward a drug induced remission. Damage done to organs often improves some too when some organs heal more but some damage can endure and affect ones hearing, kidney and lung functions, and eyes can also be permanently affected. Only time will tell but recovery might also take some time if it happens. Most of us gained far too much weight back so that is unlikely to be a problem for you. I lost 25 while ill and gained back 50 during my recovery and am still trying to lose some of it.

**annekat** · 02-19-2015, 06:34 PM

Welcome, Russell. Each case of WG/GPA is a little different. There are so many variations. I haven't heard of paralyzed vocal cords before. Early on, before I was even close to being diagnosed, I had a lot of trouble with my voice either from inflammation in that area or mucus collecting there and thickening. I sounded like Kermit the Frog. But this was not a paralysis, just a chronic bad voice. Not being able to talk, eat or swallow would be awful, and it sounds like you have been very patient but are more than ready for a change. I agree with the others above that maybe you need more aggressive treatment for a time with a big gun and fast acting immunosuppressant like CTX (cytoxan, cyclophosphamide). You would not have to discontinue your RTX for this; it could kick start you in the right direction, and the RTX could then take over. You need to zap that inflammation in your spinal cord so you can return to a more normal life and enjoy food, drink, and talking again. My sympathies are with you. I'm glad you have joined the forum and we all hope to hear more from you soon.

**Randy** · 03-15-2015, 03:19 PM

I have a partially paralyzed left vocal cord.I had a lot of trouble speaking in the beginning. The ENT gave me vocal exercises to do but after a year (2010) told me my voice was probably as good as it would ever get. I do recordings of my voice every few months and I feel it is much better today than it was back then. I sound almost normal and everyone else tells me my voice has improved greatly. I, also have paralysis around my lips which made it difficult to form a lot of words. I think that is a bigger problem today than the vocal cords. Also, could not curl my tongue into a U it looked more like a backward L. Today when I look in the mirror it looks almost normal. So keep working at it and it should get better.

**Russell Bro** · 03-16-2015, 12:06 PM

Thanks for the info Randy, I feel it is still early for me but my problem is, I can't swallow food or drink, I'm just now getting to do small swallows of my own spit. I'm meeting with a ENT in April to suggest collagen injections to pump up the VCs. my tongue started going numb on the right side and I couldn't bend it to touch the inside of my cheek but its pretty normal now. what kind of exercises sis you ENT give you for you VCs.
Glad to hear you are doing better.

**Randy** · 03-17-2015, 01:09 PM

I remember having a hard time swallowing but I could eat and drink without much problem so you sound much worse than I was. It sounds like swelling in the throat. I would practice letters that I had trouble pronouncing. C,D,and E all sounded the same when I spoke. There were vocal sounds that I did, but I don't remember exactly what they were. I dug out my notes but they don't make sense to me now. "Place your tongue at the front of your mouth and sigh" ??. There are operations they can do to help the voice come back but I was told most people have there voice come back on it's own in a year or so. that was the case with me and hopefully for you too. I am concerned about the not eating part. I hope they can give you something quickly to help that. I also remember now that when Wegner's first started developing I had a great deal of difficulty swallowing but it cleared up on it's own, at least I don't remember the doctors giving me anything for it.

**LisaT** · 03-25-2015, 03:55 AM

My vocal cords were not paralyzed but were inflamed and made my voice very hoarse for years, before diagnosis everywhere I went people would ask if I was sick and sort of lean away from me...

It has improved a lot with treatment (prednisone and azathioprine).

A word of caution about the injections proposed for your vocal cords: this was tried with me by ENT before meds were prescribed. It caused a brief further swelling that scared the heck out of me as I had a narrowed airway to begin with, and I spent ten or fifteen minutes in the ENTs office with him talking me down from a near panic attack and waiting for my airway to open back up a bit more. I knew I was in the right place and they'd have been able to help me even if it closed completely, but it was a very frightening ordeal. Don't let them do both sides at once! If one swells up a bit, at least the other side will give you some air...