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ENT MYSTERY! Please help!

Posted , 6 users are following.

lindsay27116
lindsay27116

This might be a semi-long post but ill try to keep it short. I'll begin with a summary of my physical and medical history.:

*29 year old white female, work an office job but mainly from home in Pennsylvania, non-smoker, drinks on rare occasions (maybe one or two adult beverages per week), no illegal drug use, no use of cannibis

*History of common sinus infections and strep throat as a child which had lessened with age

*Current health conditions: chronic migraine, anxiety, depression, tachycardia (resting heart rate is in the 140 bpm range so I take Propranolol to normalize it

Hopefully that can provide a little bit of information about my background in order to get any ideas of what the heck is happening to me.

It all started about 10 months ago in October of 2018 when I just felt generally congested and couldn’t breathe very well through my nose at all and seemed to be experience some post nasal drip which I used over the counter Flonase for. I started noticing that the mucous/phlegm was getting thicker and the best way to describe it is that the mucous basically felt stuck. I wasn’t about to blow it out my nose or cough it up. Frankly, that feeling is quite miserable in itself.

Then - - around mid November 2018 is when things started to get weird (as a side note, my husband is a neurologist but doesn’t really know much about ENT to be able to treat a patient so he doesn’t really know what’s going on either). One day I was coughing and coughing to the point of vomiting and finally I coughed up this GIANT (about a quarter or half dollar size) hard mucous ball (I’ll insert the grossest photos ever for reference).

Anyway, I basically lived like that for months. So after trying everything I (and my husband) could possibly think of including running humidifiers, having an air purifier on all the time, got all of our vents changed etc until I was finally fed up and finally made an appointment at the ENT.

The ENT used the little camera to basically explore my nasal passages etc. Initially the ENT thought it was just a really bad chronic sinus infection I had been living with for those 10 months so he prescribed me some nasal sprays, augmentin and I used (still use this) daily in each nostril. Well, I didn’t skip a single dose of the antibiotics and still had the same issues so at the next follow up he prescribed Avelox, which also didn’t work. Ultimately he decided the best option would be to remove my adenoids which he said it looked like where the mucous balls were collecting. He also corrected my deviated septum as well.

It has been about 2.5 weeks since my surgery and I am still completely miserable. He did say to expect some residual mucous and drainage, which is fine, I understand why that would happen. At my follow up visit he said that the mucous samples that he collected pseudomonas and klebsiella so I am on yet again another antibiotic. This time it’s 10 days of Cipro and I’m on my 7th day out of 10.

However, tonight I could hardly breathe and seemed to feel like something was stuck all day long and I finally coughed up a large bloody mucous ball and was able to breathe so much better.

I’m incredibly frustrated and feel like I’m never going to get better. It is a constant annoyance and honestly a hinderance on everyday life.

If anyone has any ideas please let me know!

Thanks!

0 likes, 9 replies

9 Replies

  • Vimes
    Vimes lindsay27116

    Edited

    Hi

    Over the last ten months, and prior to seeing the ENT, have you been using nasal irrigation several times a day..?

    This is important to keep the mucous flowing and not building up within your nasal cavities. Also it helps to reduce the thickening of the mucous.

    Irritation, Inflammation, Infection and Stasis are things to try and avoid when it comes to successfully managing your sinuses and nasal secretions.

    You mentioned seeing an ENT who used a scope to look within your nasal cavities. Did you seek a second opinion before surgery was decided..?

    Most people have a "deviated" septum, it depends if it impacts on the volume of air flow if it needs to be corrected, I suppose.

    When using that scope did he make comment on your larynx, pharynx and vocal cords, in terms of mucous, damage or oedema..?

    Did you have a CT scan, kinda basic really and much needed before surgery, and if so what were the findings..?

    For me oral antibiotics, and spray types, have been useless with dealing with sinus issues. If anything they upset your gut bacteria and also you have a bacterial biome going on within your nasal passages that gets destroyed (the good bacteria also) when they are used. It takes ages to recovery from a dose of them and often they can be prescribed for long periods when trying to deal with sinus issues.

    There are decongestants which might be useful, talk to your doctor, but also consider daily and frequent irrigations as well as a facial steamer, with a nasal type attachment to keep all your passageways moist and the mucous thin. Drinking lots of water throughout the day will also be helpful.

    Also sprays like Mometasone can be useful, and not have the same implications as steroid based ones.

    Sleeping with a raised pillow or wedge helps with sinus drainage.

    Allergies and even (curve ball coming) reflux could also be a factor.

    Some random thoughts for you 😃

    • lindsay27116
      lindsay27116 Vimes

      Posted

      Hello and thank you for the reply! Regarding all of your questions, the answer is yes to all of the above. I have quite literally tried everything under the sun to try to get some relief. I DESPISE the nasal irrigation but I do use it which is why I particularly confused as to why I am still getting hard and crusty mucous buildup. It is incredibly frustrating to not be able to get any symptom relief. Like I said, my husband is a doctor as well and he's been doing everything he can to try to help as well but everyone seems pretty stumped. i do have acid reflux which i take daily omeprazole for so I wouldn't think that is the issue as long as I have been taking my medication properly and as directed (which I have). I did forget to mention in my posting that I have precious facial trauma and both my maxilla and mandible had to be reconstructed therefore I do still have all of the titanium plates and screws in my face/jaw from that surgery. I just feel rather discouraged at this point.

    • lindsay27116
      lindsay27116 Vimes

      Edited

      Hello!

      Thank you for your advice and input. I ended up having a horrible pseudomonas klebsiella infection. In the end what was absolutely needed was to have my overly enlarged adenoids removed. No amount of nasal irrigation and keeping the area moist was ever going to help anything.

      To answer your other question, yes I did have a CT scan and it did show that I had infection in both my jaw from the titanium plates (which I did have to have one large one removed months after having my adenoids removed) as well as the infection in/on my enlarged adenoids.

      I appreciate your thoughts on a non-invasive approach but for me that wasn’t an option.

  • margaret22116
    margaret22116 lindsay27116

    Edited

    OK so I have a very similar history to you and I have an auto inflammatory auto immune condition. It took years to get a diagnosis and I went to ent and neurology and endocrinology and everywhere really without getting answers.

    After years of suffering such symptoms I was finally diagnosed by an immunologist. Mine is a long story and I won't bore you with the detail but I had a similar illness profile. What finally got me diagnosed....after many years of this I finally started getting unexplained joint pain. That started quite long after other symptoms. I was referred to a rheumatologist who recognised I had an underlying inflammatory problem and I was then referred to an immunologist. Could you have something similar...I really don't know and can't diagnose obviously but I would suggest that, if nothing else, you try to rule that out. There is, sadly, no catch all blood test for auto immune disorders but raised levels of esr crp ana can sometimes indicate an ai issue. They are not always raised (my bloods are often unremarkable) but they can sometimes be useful pointers. I also have to say I got nowhere with ent...they had no clue what was going on. Good luck to you

    • lindsay27116
      lindsay27116 margaret22116

      Edited

      Thank you so much for tour reply! it's so incredibly frustrating to have something chronic going on that no one can seem go figure out, as I'm sure you know. I'm glad you got a diagnosis though! It gives me hope!

  • summer21507
    summer21507 lindsay27116

    Edited

    hi! I have been going through a similar experience these last 11 months, following having Covid. i always had mild sinus issues from allergies but then it got unbearable.

    Mine involved mostly my left side, ear and sinuses, constant throat clearing, thick mucus, congestion and so on. Many antibiotics, nasal endoscopy's, CT scan and so on. Flonase, several other prescription nasal sprays daily, several courses of antibiotics, steroids etc. My ears got so bad that I got ear tubes in both ears and a dilation surgery on the left. Tried but couldn't do Sinus irrigation for sinuses because it would make my ears clogged and hurt more.

    Anyway! After all that it turned out to be an uncommon bacteria that was resistant to Augmentin, Doxycycline and the other antibiotics I was given. After taking the Cipro for 10 days it got way better but not gone. some bacterias are very stubborn. went to get another culture, the citrobacter was still there, and after another round of antibiotics it is finally gone and getting soooo much better! finally!

    NAC is a supplement that i started taking that helped thin out that terrible mucus a little. Hopefully your issue is the bacteria and with the right antibiotics it starts to clear up like mine finally did. Get a follow up culture if symptoms still there after cipro to make sure it's gone is my best advice 😃

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