Stenosis Dilation Dilemma

[jtausan]

Hello Bob,

I'm confused, they didn't do anything while you were in surgery?

Jodi

[Psyborg]

Hello Bob,

I'm confused, they didn't do anything while you were in surgery?

Jodi

They prepped me...put me under and when they went down to do the work it was mostly better. I had previously had ~50% stenosis, and now it was down to 10%-15%. So now I'm left wondering what is causing the weezing when I breath...at 15% it should be practically unnoticeable I'd think.

[jtausan]

Hi Bob,
Sorry it's taken me so long to respond. I am so glad that you didn't have to go through with the surgery.
Are you still wheezing?
I saw my regular Doc yesterday and after listening to my lungs I still have some wheezing too. I don't think that will ever go away. I still have a cough too, it's not as bad tho. I think that is mostly from the mucous and phlegm. I just seem to produce a lot of mucous and phlegm. yuck!
I hope you are doing well and breathing easy.
Jodi

[Psyborg]

So far so good Still have weezing as well. I'm going to talk to my Rheumy this week about that.

[jmmilliorn]

I've been having swallowing problems for over a year. I went recently to a new ENT and they said that I do not have a stricture or scarring as I thought causing my swallowing problems, but a Zenker Diverticulum. I have had one of these removed 10 years ago. I was diagnosed with WG in Jan by Dr. Villa Forte at CC. I have not discussed the swallowing problem with her because I thought it was unrelated to WG. Now after reading your posts, I think I will. I also have a chronic cough and hoarseness. Last time I was in the CC for WG symptoms I asked about the cough and hoarseness, but never got a good answer. I had bigger problems at the time. Now on RTX and feeling some better.

[jmmilliorn]

I have the exact same childhood era phobia from having asthma. I am paranoid about breathing and have nearly choked several times with my swallowing problem. Even on some of the larger pills. My son heimliched me twice. Very scary!

[jmmilliorn]

I've had foot cramps for over a year and didn't know why. Couldn't get an answer. This helps me. Also, I have the same problem sleeping. Have to sleep propped up to help control the coughing and drainage. I've been coughing up stuff since Jan and coughing uncontrollably at times. Cant get answers from any of my docs. My legs get so sore at night if they cross, I have to use pillows, too or sleep in a chair. I had to leave our bedroom because of the constant coughing for my wife's sake. With the steroids, I only sleep 3 hrs a night anyway and sometimes the coughing interrupts that. Man, I had no idea other people were having these same symptoms. Glad I found this forum. My doc is V-F at CC, too.

[Sangye]

Mike, you might consider getting a torso-length wedge pillow. I got one a few months ago to help with sleep apnea and it works great. Here's the company that makes them. I couldn't find any other company that makes a torso-length pillow. The shorter wedges are very bad for you.

I have elevated intracranial pressure (complication from Wegs treatment) and it really helps with that, too. If I try to lay flat now, my head instantly fills will fluid/ pressure and it's intolerable. I can't believe how I was sleeping like that before. Sleeping in this position will probably help with your breathing.

[elephant]

MIke, you might have Gerd ( reflux disease), that can make you cough too. Then you added the swallowing problems. I too have on and off swallowing problems...for example if I drink something it gets caught in my esophagus. I take Nexium, and that seems to help if when I am compliant. I actually didn't take it this week, so I am back taking Nexium every other day.

[jmmilliorn]

I DO have GERD. Had it for years. It was blamed for my first Zenker's Diverticulum about 10 years ago. I kept going to my MD and he was treating my cough with asthma meds. I finally went to an allergist and he diagnosed the GERD. By then though I had a cough, sore throat AND a Zenker that kept me constantly choking on food. Had that fixed surgically and I've been taking Prilosec (2x/day) equivalents or Nexium (1X/day) since. I sleep propped up on three soft pillows or in a recliner a lot due to the cough/sinus/drainage/stuffy nose and bronchial congestion that seems a permanent fixture in my life. For the last two weeks since RTX, my cough has gotten better, and my six months of hoarseness has improved greatly. I'm encouraged. I went outside today for several hours and supervised my ranch hand from the ATV. I haven't had the strength to do this in months. (we used to work together all day) A recent visit to the ENT and a barium CT scan revealed that I do have another Zenker's D. not a stricture. Since the RTX, two weeks ago, my congestion, cough and swallowing have all improved quite a bit. Still waiting on the insurance co. to approve the 2nd infusion. Can't have the Zenker fixed right now due to the Coumadin for the blood clot in the right leg and I'm reluctant to have any surgery at all while I'm trying to get into remission. I'm still anemic and somewhat inflamed, but my SED rate is near normal. At least I haven't choked lately. I have to be pretty careful with everything I eat--especially when I'm alone.