treatment resistant chronic sinusitis

Posted by carterbeauford @carterbeauford, Sep 16, 2023

I suffer from chronic sinusitis. I've had two balloon sinuplasty, two septoplasty, and two submucosal turbinate resection surgeries. I did not get any relief from either surgery. Each surgery left me with worsening nerve pain in my nasal bridge, lateral nasal wall, upper teeth and eye socket. I have tried every treatment imaginable. I consulted with a migraine plastic surgeon. He ordered a CT scan which showed sinus inflammation. He said I need to get the inflammation under control before he can go any further. I have seen 5 ENTs. Sinuplasty is not the answer. The only option I feel I have left is bone marrow derived stem cells injections. I have already had fat derived stem cell injections which I feel were a scam. I believe a peripheral nerve injury is the cause of my pain, not sinus inflammation. The pain is constant and excruciating.

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@shashig

My sympathies...chronic sinusitis isn't fatal but is life-changing, for sure. My sinus issues began after I contracted CDiff -- after a hospital outpatient surgery, I feel sure. It's worsened over a decade-plus, getting so bad 2-3 years ago that my fourth ENT, head of the department, first did a balloon procedure, which did nothing, then an antrostomy to enlarge the maxillary openings. On the heels of that surgery, I contracted Covid for the first time. Things have gone downhill since then. 2023 was bad. I was sick at least half the year -- PND, maxillary pressure, gag coughing, fatigue, dizziness, body aches. It would come and go and come back again. I just had thorough blood workup. Turns out my IgG and some pneumococcal levels are somewhat low, meaning weakened immunity. So is that why my body is unable to shake this syndrome? On the other hand, it occurs to me that maybe the whole thing is Long Covid (dizziness was my big Covid symptom). I'll be seeing an immunologist soon for yet another opinion. Anyone else believe their sinusitis is a manifestation of Long Covid? Thanks for any input!

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Absolutely COVID can make sinuses worse. My immune system took a big hit after COVID. I am more prone to sinus infections since having COVID. I have a new ENT that has put me on a compounded medication that is mixed in with my saline solution to irrigate my sinuses. It has helped me not to have so many sinus infections. I had 6 last year. The solution is a prescription, but, it helps. It is called:Mupirocin/Budesonide 20 mg/0.6 mg capsule. This is out of pocket since it has to come from a compounding pharmacy.

I've had sinus issues since the early 80's along with allergies. I had sinus surgery in 1995. I learned that if you have a sinus infection that hangs on, its best to ask the ENT to culture your sinus and see what type of bacteria you are growing as then the right antibiotic can be administered.

I empathize with you. Sinus problems care tiring, painful and hard to treat. I wish you the best. Prayers....

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@covidstinks2023

Absolutely COVID can make sinuses worse. My immune system took a big hit after COVID. I am more prone to sinus infections since having COVID. I have a new ENT that has put me on a compounded medication that is mixed in with my saline solution to irrigate my sinuses. It has helped me not to have so many sinus infections. I had 6 last year. The solution is a prescription, but, it helps. It is called:Mupirocin/Budesonide 20 mg/0.6 mg capsule. This is out of pocket since it has to come from a compounding pharmacy.

I've had sinus issues since the early 80's along with allergies. I had sinus surgery in 1995. I learned that if you have a sinus infection that hangs on, its best to ask the ENT to culture your sinus and see what type of bacteria you are growing as then the right antibiotic can be administered.

I empathize with you. Sinus problems care tiring, painful and hard to treat. I wish you the best. Prayers....

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Thanks for your feedback...actually, I've been on the budesonide/mupiricin + xylotil/salt/baking soda Rx twice daily for a year or so...I use it in a neti pot wash. Does it help? Can't tell as I've never stopped. FYI, here's how I use: I have a box of budesinide ampules, prescribed off-label by my ENT. Insurance pays IN FULL at CVS. I fill the neti pot about halfway with distilled water. Then add one ampule + 1 tsp of the xylitol mix + about 1/4 inch of mupiricin ointment from the tube (very cheap). I heat more distilled water in a saucepan to fill the neti pot, add, and wait 'til the ointment dissolves, then do the lavage. You can buy the xylitol mix, but I make my own, which is far cheaper, and store in a jar. (Proportion is 2:1:1 xylitol:salt:baking soda). Sounds time-consuming, but it's not.

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@shashig

Thanks for your feedback...actually, I've been on the budesonide/mupiricin + xylotil/salt/baking soda Rx twice daily for a year or so...I use it in a neti pot wash. Does it help? Can't tell as I've never stopped. FYI, here's how I use: I have a box of budesinide ampules, prescribed off-label by my ENT. Insurance pays IN FULL at CVS. I fill the neti pot about halfway with distilled water. Then add one ampule + 1 tsp of the xylitol mix + about 1/4 inch of mupiricin ointment from the tube (very cheap). I heat more distilled water in a saucepan to fill the neti pot, add, and wait 'til the ointment dissolves, then do the lavage. You can buy the xylitol mix, but I make my own, which is far cheaper, and store in a jar. (Proportion is 2:1:1 xylitol:salt:baking soda). Sounds time-consuming, but it's not.

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I use the capsules of prescription compounded medication (expensive!) ....I can only tolerate 1/4 capsule...gives me a horrible headache if I use more. I actually can smell the sulfur in the antibiotic for about 3 hours after using it sometimes. I put mine in 8 oz of distilled water with 1/8 of a saline packet with the NeilMed sinus rinse bottle.

Have you been allergy tested? Praying you get better.

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No allergies...but have an appointment with an immunologist. You might ask your doc/ENT about switching to the bedsonide ampules, which for their usual use -- asthma and lung diseases -- are delivered via inhaler. My doc prescribes off-label and, as I said, insurance covers the cost. Maybe this way would be a weaker dose you could better tolerate.BTW, it is a steroid not an antibiotic.

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@shashig

No allergies...but have an appointment with an immunologist. You might ask your doc/ENT about switching to the bedsonide ampules, which for their usual use -- asthma and lung diseases -- are delivered via inhaler. My doc prescribes off-label and, as I said, insurance covers the cost. Maybe this way would be a weaker dose you could better tolerate.BTW, it is a steroid not an antibiotic.

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Thank you so much for your wellspring of information. I think you are on the right track with an immunologist.

I was referring to the combination of the bedsonide/mupiricin in a compounded capsule. I smell the sulfur. I cannot do a steroid inhaler as it ALWAYS causes a lovely case of thrush not matter what I do.

Blessings....

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@johnbishop

@danny5 I also have sleep apnea with a deviated septum. I had the humidity tank with my previous 2 CPAPs that I no longer have due to the recall - Dreamstation and Dreamstation Go portable CPAP. I stopped using the humidifier tank for the same reason. It seemed to make my congestion worse. I did like the heated hose which I no longer have because my bedroom gets a little cold in the winter and it effects the air I breathe more than my body.

I decided against surgery to fix the deviated septum after a long talk with my Mayo ENT doctor. He put me on a 3 month Rx of a proprietary nasal spray that I did in the morning and the evening which helped clear up my nose. He said my problem was caused by chronic rhinitis. After the Rx ran out I was able to treat the rhinitis with a twice daily saline nasal rinse for a little over a year. Then I saw an ad on the SinuSonic and decided to give it a try. They last about 6 months before you have to replace it which was almost as cheap as 6 months of daily nasal rinse supplies and it actually does help keep my nasal passages clear if I use it one or two times daily. Another plus for me is that it's much easier to do than the nasal rinse.

I think it probably does need a larger study. This was the first study (small) that I looked at which convinced me to give it a try.
-- A novel device combining acoustic vibration with oscillating expiratory pressure for the treatment of nasal congestion: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7317541/

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i had my deviated septum fixed a few years back already. (WOW). my nose had been broken three different times. when the ENT did do it. i had been suffering for many years from different issues. with that being done. it's been great. other than the Chronic Sinusitis and the nasal polyps. which are gone now also. so i'll have to see about getting one of these. d 🏳️‍🌈

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@covidstinks2023

Thank you so much for your wellspring of information. I think you are on the right track with an immunologist.

I was referring to the combination of the bedsonide/mupiricin in a compounded capsule. I smell the sulfur. I cannot do a steroid inhaler as it ALWAYS causes a lovely case of thrush not matter what I do.

Blessings....

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Thank you! But do you think maybe the liquid budesonide diluted in the neti pot might be more tolerable than the inhaler? Worth a try?

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@shashig

Thank you! But do you think maybe the liquid budesonide diluted in the neti pot might be more tolerable than the inhaler? Worth a try?

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It's possible. I will ask ENT doctor next time I go. Blessings.....

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