User Tag List

Likes Likes:  44
Page 8 of 10 FirstFirst ... 678910 LastLast
Results 71 to 80 of 97

Thread: Chronic sinus infections, bronchitis, and nasal rinses.

  1. #71
    Join Date
    Oct 2011
    Posts
    107
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Alysia,thank you.Phil was very knowledgeable,and his knowledge lives on.My next comment will be at Phil's "Mammoth Thread".
    "You can tame anything,except the human tongue"

  2. #72
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    I don't know whats been going on with my nose but it will turn ice cold. So cold that it hurts. I hope it isn't on the verge of collapsing. Has anyone else's done this and then ended up with saddle nose or something else ?
    Life isn't about how you survive the storm, but how to dance in the rain !

  3. #73
    Join Date
    Apr 2013
    Location
    NH
    Posts
    1,393
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Deb, hi, again... Deb, I had this, and although its changed a little, no it hasn't saddled... Yet!!! This of coarse would not surprise me, but no, not going there to making myself sick, the way I did in the past! Deb, there's no longer any real sensation there anymore, and don't know what to make of that. A bee could land on my nose, sting me, and book, and I wouldn't even know it... But its been four years May, no treatment, and still my nose, just slightly different, but to me, its a bigger deal of coarse... Good luck, Deb... Debra...
    Live,love,and laugh...

  4. #74
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Debra C View Post
    I don't know whats been going on with my nose but it will turn ice cold. So cold that it hurts. I hope it isn't on the verge of collapsing. Has anyone else's done this and then ended up with saddle nose or something else ?
    I never felt cold nose. Only warm. My saddle nose is the result of many years of nose bleeding and crusting. Anyway, if it continue please ask a dr. It is common among those with scleroderma.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #75
    Join Date
    Apr 2013
    Location
    NH
    Posts
    1,393
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Alysia, great advice, mentioning the S word here! I did show signs of this in the beginning, for about two years... No tears ect. So this is amazing advice, I never would of even thought of... Yes Deb, like Jack used to say, just cause you have one, doesn't mean you can't have another... My endo, told me years back, once one autoimmune issue shows itself, others may follow... Not always, but... It seems the dog, wants friends in some to help with his dirty work... Debra...
    Live,love,and laugh...

  6. #76
    Join Date
    Jan 2018
    Posts
    27
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    Once again, had an ENT appt. which did not go well. I was told by Gastro. to see the ENT for my nose/ear issues and due to "policy" (that I never heard of), I was not allowed a new ENT (2nd opinion) but back to the same one I had in past who did not help then. My sinuses have been so bad over the years that I've had nearly 5 procedures ranging from polyps to fixing collapsed nasal turbinates etc. a lot of ear cartilage used to support it. Had Staph. during my only nasal culture two years ago along with elevated WBC, and the Dr. dismissed it. Radiology dx. "Chronic Sinus Disease" over many years w/ unknown reason. My corrupted sinuses affected my ears/hearing.

    The ENT quickly dismissed Wegeners, even w/ hole in septum and the constant bloody crusting inside. They bleed at times and I constantly have that uncomfortable feeling in my nose requiring to pick which is always bloody crusts. He said Wegeners don't have this, they specifically have a lot of green snot crusting and eroded bone and that my modified sinuses were "likely" caused by past surgeries. Again No culture test, no catscan, just a quick look by nasal scope. Saying the polyps, bloody nasal crust, inflammation in throat is "normal". Left at that.

    Again, the ENT was not interested to know WHY i had so many procedures over the years, which was caused from sinus disease! Also, my eustachian tube feels dysfunctional...it feels to unable to close, so there's lot of air ventilation feeling through the ear with roaring rushing tinnitus 24/7. I feel the muscles from sinuses to eustachian tube became fragile and just "broke" right after ear surgery. ENT claims he is unable to investigate to look. I asked him to please look into my middle ear. I don't understand how they're unable to? He said go see (once again) a Neuro-oto. instead. In past, NONE of them would evaluate the sinuses as not related to ear or hearing problems.

    Do others here only have green crust snot and erosion of a bone that dx your Wegener's?
    I am so frustrated and really suffering with these ongoing symptoms. I do rinses and steam helps.
    What did other Wegs. have for this work-up that confirmed their diagnosis? I don't understand why i constantly have these sinus/ear issues and be told they're incapable to investigate further. -H.
    Last edited by Helen; 03-01-2018 at 10:15 PM.

  7. Likes Bing505z liked this post
  8. #77
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,374
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    Bloody crusts and frequent bleeding caused by removal of crusts were one of my first signs of GPA and I believe the most common symptom of GPA (Wegener's).
    Knowledge is power! Wisdom is using it to make good decisions!

  9. Likes annekat, Alysia liked this post
  10. #78
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    Quote Originally Posted by Helen View Post
    Once again, had an ENT appt. which did not go well. I was told by Gastro. to see the ENT for my nose/ear issues and due to "policy" (that I never heard of), I was not allowed a new ENT (2nd opinion) but back to the same one I had in past who did not help then. My sinuses have been so bad over the years that I've had nearly 5 procedures ranging from polyps to fixing collapsed nasal turbinates etc. a lot of ear cartilage used to support it. Had Staph. during my only nasal culture two years ago along with elevated WBC, and the Dr. dismissed it. Radiology dx. "Chronic Sinus Disease" over many years w/ unknown reason. My corrupted sinuses affected my ears/hearing.

    The ENT quickly dismissed Wegeners, even w/ hole in septum and the constant bloody crusting inside. They bleed at times and I constantly have that uncomfortable feeling in my nose requiring to pick which is always bloody crusts. He said Wegeners don't have this, they specifically have a lot of green snot crusting and eroded bone and that my modified sinuses were "likely" caused by past surgeries. Again No culture test, no catscan, just a quick look by nasal scope. Saying the polyps, bloody nasal crust, inflammation in throat is "normal". Left at that.

    Again, the ENT was not interested to know WHY i had so many procedures over the years, which was caused from sinus disease! Also, my eustachian tube feels dysfunctional...it feels to unable to close, so there's lot of air ventilation feeling through the ear with roaring rushing tinnitus 24/7. I feel the muscles from sinuses to eustachian tube became fragile and just "broke" right after ear surgery. ENT claims he is unable to investigate to look. I asked him to please look into my middle ear. I don't understand how they're unable to? He said go see (once again) a Neuro-oto. instead. In past, NONE of them would evaluate the sinuses as not related to ear or hearing problems.

    Do others here only have green crust snot and erosion of a bone that dx your Wegener's?
    I am so frustrated and really suffering with these ongoing symptoms. I do rinses and steam helps.
    What did other Wegs. have for this work-up that confirmed their diagnosis? I don't understand why i constantly have these sinus/ear issues and be told they're incapable to investigate further. -H.
    Helen, the ENT you are seeing sounds sadly mistaken and stubborn, and I think you need to find another one. Check the Vasculitis Foundation website to see if there are any specialists listed that you could travel to see, or tell us your general area and maybe someone can suggest one.

    Crusts and blobs of mucus with Wegs can be greenish or bloody or both. Drz is right that removal of crusts can lead to bleeding, and it's also true that blood can appear on its own, generated by the damage done to blood vessels by Wegs itself. Any unusual amount of blood, attached to crusts or free flowing, is suspect, and given the hole in your septum and all your other issues, you need to find out for sure if you have Wegs, from someone experienced, and if so, you need to get treated ASAP. Also, if your insurance will not allow you a second opinion, I think you need new insurance, or just see someone on your own if that's possible.

    It makes me angry that you are going through all this with no resolution and being treated the way you are.



    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  11. Likes drz, seied, Helen, Alysia liked this post
  12. #79
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,374
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    Update three years later.

    Since i started this thread over three years ago things seem better with my sinuses. I hate to risk waking the Weg dogs but wish to comment that things slowly got better. The last two years I have manage to to get through the winter with no sinus infections or bronchitis.

    I think the keys for me are using a Sinus Pulse machine to rinse every day and taking generic Muccinex two times a day to keep mucous thin which reduces the problems caused by post nasal drip. If the symptoms get worse I will increase both. I find this also helps reduce problems from blocked Eustachian tube that reduce hearing in the one ear that still has some hearing with a BTE aid. I can't tell if the tube is blocked in my deaf ear and remember only one infection in it when the ear drum ruptured and drained.

    Since Wegs caused permanent damage to the sinuses I will always have some problems from the extra post nasal drip and high risk of infections but I found that frequent rinses with some additives I mentioned in the first post and some use of antibiotics seemed to help things slowly get better. In hindsight I am not sure if the antibiotics were necessary as I developed allergies to a couple of them. My current infectious specialist advised me to wait and see when my BAHA site appeared infected again since it had blood and liquid drainage a couple days so I just continued with my regular daily cleaning of site with MicroKlenz and it seemed to heal up OK.
    Knowledge is power! Wisdom is using it to make good decisions!

  13. Likes Pete, annekat, Helen, Alysia liked this post
  14. #80
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    Quote Originally Posted by drz View Post
    Update three years later.

    Since i started this thread over three years ago things seem better with my sinuses. I hate to risk waking the Weg dogs but wish to comment that things slowly got better. The last two years I have manage to to get through the winter with no sinus infections or bronchitis.

    I think the keys for me are using a Sinus Pulse machine to rinse every day and taking generic Muccinex two times a day to keep mucous thin which reduces the problems caused by post nasal drip. If the symptoms get worse I will increase both. I find this also helps reduce problems from blocked Eustachian tube that reduce hearing in the one ear that still has some hearing with a BTE aid. I can't tell if the tube is blocked in my deaf ear and remember only one infection in it when the ear drum ruptured and drained.

    Since Wegs caused permanent damage to the sinuses I will always have some problems from the extra post nasal drip and high risk of infections but I found that frequent rinses with some additives I mentioned in the first post and some use of antibiotics seemed to help things slowly get better. In hindsight I am not sure if the antibiotics were necessary as I developed allergies to a couple of them. My current infectious specialist advised me to wait and see when my BAHA site appeared infected again since it had blood and liquid drainage a couple days so I just continued with my regular daily cleaning of site with MicroKlenz and it seemed to heal up OK.
    Thanks for the good report, drz. You might also try NAC, aka N-ACETYL-L-CYSTEINE, an OTC amino acid that, for me, works better than Mucinex to thin the mucus, so I'm more easily able to dislodge and cough up the post nasal drip that goes into my windpipe. I take 600mg twice a day in tablet form, though I think some take it in inhalers or nebulizers. My new pulmy, whom I like very much, approves of it. It might take a couple of weeks to start working. It is less readily available than Mucinex or its generics, but may be found online or at supplement stores. However, if generic Mucinex is working for you, great! This may be helpful to others, too.


    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  15. Likes Helen, drz, Alysia liked this post
Page 8 of 10 FirstFirst ... 678910 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •