Balloon Dilation coming up

Hello friends!

I had a couple of questions. I am recently diagnosed with Wegener's. I have involvement in my sinuses (had decompression), saddle nose, and airway. I have just recently finished my first complete round (4 weekly infusions) of rituxan. After having no improvement with my breathing (shortness of breath), my rheumy and sinus specialist ENT wanted me to see an airway specialist ENT. There it was discovered that I have subglottic stenosis. A grade 2. On Friday, I am having a balloon dilation done. She will cut into the scar tissue, biopsy, dilate, and inject steroids. It is planned on being an outoatient procedure. First question is what is recovery like? Trying to prepare for what the weekend will look like with my three kids. Second question is how often have some of you had to have these done? I know everyone is different and some end up having to be trached (not too frightened of that, my son is trached due to aquired SS from long term intubation as a preemie). I just wanted to hear some of your all's experiences. Last, were any of you misdiagnosed? They keep bringing up that I don't fit into a particular Wegener's box and for a while went back and forth about whether or not I had Wegener's or Relapsing Polycondritis. This is why the doc is going to biopsy the tissue from my airway to see if we can get a definite Wegener's diagnosis. The biopsies from my sinuses came back inconclusive. My bloodwork leaned more towards Wegener's but wasn't all that "remarkable". They think it was just caught early. Once I get all this done, I'm considering being seen at the Cleveland Clinic. I'm just north of Cincinnati so it's not far. Any recommendations for who to see there? Anyway...thank you reading and any help you may be able to offer.

Check the Vasculitis Foundation web site for list of experts at Cleveland as well as Cleveland Clinic web site to find one interested in your issues.

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Originally Posted by jeother

Hello friends!

I had a couple of questions. I am recently diagnosed with Wegener's. I have involvement in my sinuses (had decompression), saddle nose, and airway. I have just recently finished my first complete round (4 weekly infusions) of rituxan. After having no improvement with my breathing (shortness of breath), my rheumy and sinus specialist ENT wanted me to see an airway specialist ENT. There it was discovered that I have subglottic stenosis. A grade 2. On Friday, I am having a balloon dilation done. She will cut into the scar tissue, biopsy, dilate, and inject steroids. It is planned on being an outoatient procedure. First question is what is recovery like? Trying to prepare for what the weekend will look like with my three kids. Second question is how often have some of you had to have these done? I know everyone is different and some end up having to be trached (not too frightened of that, my son is trached due to aquired SS from long term intubation as a preemie). I just wanted to hear some of your all's experiences. Last, were any of you misdiagnosed? They keep bringing up that I don't fit into a particular Wegener's box and for a while went back and forth about whether or not I had Wegener's or Relapsing Polycondritis. This is why the doc is going to biopsy the tissue from my airway to see if we can get a definite Wegener's diagnosis. The biopsies from my sinuses came back inconclusive. My bloodwork leaned more towards Wegener's but wasn't all that "remarkable". They think it was just caught early. Once I get all this done, I'm considering being seen at the Cleveland Clinic. I'm just north of Cincinnati so it's not far. Any recommendations for who to see there? Anyway...thank you reading and any help you may be able to offer.

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If you're looking for a Vasculitis expert at Cleveland Clinic, start with either Dr Alexandra Villa Forte or Dr Carol Langford. I see Dr Villa Forte and she is outstanding. Some others on here see Dr Langford, and they highly recommend her also.

Jeother,I hope your balloon dilation goes well or went well.My biggest problem from balloon dilation is usually recovering from the general anesthesia.Misdiagnosis is not unusual,but having a subglottic stenosis seems rare period.The question of the day is if it isn't WG,what is it.That's the question to ask the docs.Having a trach tube does have its benefits when having a SS,but I hope that is not needed in your case.There are other members with this problem.I am sorry your son has a trach tube,and that he can be free of it some day.Take care,and update us.

I have had dilation done several times. Recovery for me was very easy. They want you to be with someone that can help you for 24 hours after surgery in case you had unexpected swelling. I have never had the slightest trouble. In fact it feels fantastic afterward to be able to breathe. Go to sleep wheezy, wake up breathy. I think 3 dilations is the average. Some need only one, some need quite a bit more. It really is super individual. The good news is that it is a well established , practiced procedure and going back for it is not a big deal if you need it.

Most people with WG have a misdiagnosis story. I know I do. I was finally diagnose by a nasal biopsy. I'm sorry you are having extra trouble getting diagnosis. It does happen though.

Pete's recommends at the Cleveland Clinic are good. I myself saw Dr Langford there once and she was great. One time after a Wegener's conference in Kansas City I saw Dr Villaforte at the airport and asked her a question. She was a speaker at the Wegener's conference I had just attended. I was very impressed that she took the time to talk to me and was very kind and generous with her time.

I hope you get things nailed down soon. Limbo is not fun. I wonder if the doc's at Cleveland Clinic could help with diagnosis if you continue to need it? Probably nobody has seen more Wegener's cases than these doctors. Have some soothing cool things to drink in the fridge like maybe Aloe Vera drink. You are going to feel so much better.