Way Sick

[Sangye]

LOL! Except the Wegs dog. You go to sleep, lil doggie.

[Sangye]

I saw my Wegs ENT (Dr Kim) yesterday for a follow-up. The lovely scope up the nose and down the throat-- eech--but no subglottal stenosis and things looked pretty good "along the way," too.

The latest sleep study showed mild sleep apnea. I told him I barely slept because of pain but I didn't want to do another study for awhile. I also told him about the first study, in which the bed was left elevated. He was very upset that the "sleep doc" discounted my experience. He kept saying "Was that a Hopkins doc?" The docs are just not like that here. When he saw the doc's name he groaned and said he wasn't a sleep doc but a pulmy, and not the best to interpret results.

Dr Kim said elevating my head could definitely help and that I wasn't nuts. It can help with apnea and also the increased intracranial pressure I have might mean that laying flat builds pressure in my head. NO ONE thought of that last one, not even brilliant me! LOL

Anyway, with mild apnea he recommends non-invasive (ie non-CPAP) measures first. He thought the torso-length wedge pillow is perfect to try. He offered to order another sleep study if/when I wanted and we could do it at another location, too. He was awesome.

I have to go back to the "sleep doc" next month but at least I'm not concerned about anything he tells me.

[drz]

Sounds like a good consult. Good news is always welcome. Hope the ideas above help you sleep better.

[pberggren1]

I'm glad you have a good ENT Sangye. And at least now you will have a real sleep doc.

[DEE]

Sangye it was my ENT that was telling everyome i had WG when no onr was listening !!
great news DEEx

[elephant]

Great to hear Sangye. How are you otherwise?

[Sangye]

....cough cough cough cough cough cough ouch ouch ouch ouch ouch cough cough cough ouch ouch ouch...

LOL REALLY looking forward to getting that rtx.

[pberggren1]

I sure hope this round of rtx can get you feeling better. I'm glad you have good friends that help you out. Without them you would not survive. It is like the same thing with me and my parents. If I did not have them I would be totally lost.

[Brooke]

Sorry you aren't feeling well Sangye. Sounds like you had a great visit/appointment with the ENT doc. Glad things are looking good in your throat! Coughing sucks, I hope you get better soon, hang in there.

[Bren]

HI everyone, I have a few questions. I m new to the blog and a new to Wegner's.. I have been treating for 2 years I have limited Wegner's and subglotic stenosis . my Rhym Dr has only seen one of me and had not treated that person very long before he left that Clinic.. So I asked him if he would talk with Dr Speck he was agree to that so I will be heading to Mayo on Feb 28th. and seeing Dr Kaslebauer in ENT as my Subgotic area is closing up I have had 2 surgery's. so my Dr took me off all meds was on Meth and Cytoxan.. I have come down with a whopper of a cold in my chest and ache all over like I got run over by a steam engine, ears are playing some kind of games when I move my eyes .. I have had it for 3 days don't seam to be getting any better. cough all night have had 3 nose bleeds in 24 hours that last from 10 min to 30 min. we can not get my blood pressure under control at all. it was 159/99 to 111/80. not sure if I should let anyone know or let it run its course any advise would be so grateful!!! Thanks