treatment resistant chronic sinusitis

@carterbeauford-

I hear your frustration.

Unfortunately sinus inflammation is a systemic issue of inflammation/immunology.

I know you’ve been through a lot and seen many providers. With your most recent CT scan showing chronic sinusitis, are your frontal recesses clear? This can cause a constant burning pain of a nerve if a vacuum like headache takes place.

It’s vert hard to see this area on endoscopy and takes a skilled revision surgeon whom knows where to look to be sure that frontal sinus outflow tracks remain open. To avoid a squeeze like sensations which hits the nerve.

Just wondering if you find yourself constantly suffering from both sinus and upper respiratory infections? If so, you might want to have your immune status tested. This includes IgG level, subclasses along with B and T cell testing. If you have a primary immune deficiency, the symptoms are often described as above. I have this unfortunately, and am now in the midst of a nasty sinus infection that has continued for weeks despite being on two antibiotics plus recent steroids (finished today). I still feel horrible. I had a brain MRI which show opacification of the frontal sinuses. I can't even remember multiple infections that would have caused that. I'm now to have a CT of sinuses. I have the burning pain you described and get nasty pain headaches above my eyes. But I also have a problem with my cervical spine that also could contribute to that. You've been through so much, my heart really aches for you. Are you considering getting an opinion through Mayo? I have to say that I did once go to Mayo and was very impressed by how thorough they are. It was worth it just FYI

@sb4ca

Hi-this pain you describe, do you feel it in your nose? Is it sensitive to cold/warm temperature changes as well?

@carterbeauford

I wanted to add, I read of another person somewhere on this site whom also had balloon sinuplasty to one frontal sinus and ended up in ongoing pain.

There is much debate about the effectiveness of balloon procedures vs. real fess sinus surgery. Someone would really have to check your anterior ethmoid cavity and frontal sinus outflow tract.

This area is so small and easily can swell back up and close after procedures. Appearing to a scan as “sinusitis”

It’s burning at top of nose and I live in S CA so can’t comment whether it’s sensitive to cold. I don’t notice any changes when I shower either. I believe burning in nose is a common symptom of any type of virus or bacterial infection but maybe I’m wrong

God Bless You. I had sinus surgery in 1994. It was not a cureall. When you have chronic allergies, and sensitive sinus, it's a storm. I irrigate my sinus every day since I now have Long Covid from a rough case of Covid last year and it affected my sinuses. I use a hepafilter in my bedroom and a cool mist humidifer. Levaquin (prescription antibiotic) finally cleared up the bronchitis & sinus infection that I had for weeks this summer. A short term steroid taper helps greatly for me along with antibiotic for sinus infection. I have to say that: 1) the burning & debris from Canada I feel brought some of the sinus issues on & 2) the extreme humidity didn't help as it enlarges outdoor bacteria. I use 3 nasal sprays: Flonase, Cromolyn & Asteline. I feel for you and I don't battle nearly what you do. Have you tried Singulair? It personally did not work for me, but, it has for other people. I am so sorry you are battling this. You have been through so much. Sinus issues are tiring and painful. Praying for you.

As far as my immune system, I have an autoimmune response to nasal triggers like a musty building or scented candles. These things trigger crushing headaches the next day. No respiratory issues. In fact I almost never get sick. The pain is always a 10, never goes away, when it rains or it's chilly out after an hour in my work truck with the heater going it goes to an 11. I have to use an earplug to block my right nasal passage to prevent the air from hitting my middle turbinate. It's vascular because Cialis makes it worse and epinephrine soaked in my middle makes it a little better. My position is that this is a nerve injury or entrapment and that sinus inflammation could not possibly cause pain this bad. I have not seen the CT in person but am going to have my ENT review it. Steroid sprays do not work, I already have headaches and insomnia and side effects of Flonase are headaches and insomnia.

@carterbeauford-

I know you have seen many doctors, 5 ENTs whom have said nothing.

The latest surgeon whom took a CT scan an said it showed sinuses inflammation? Had none of the other previous ENTs seen/requested a post op scan?

That surprises me that Dr. Das would even do PRP injections with ongoing sinus inflammation as well.

Do you know if your anterior ethmoid sinus cavities were removed fully?

And by the way, I am no encouraging more surgery by any means. I have a very harsh opinion towards nasal/sinus surgeries in general.

And you are a better person than I am to have gone through multiple procedures.

Unfortunately the sensations in the nose post surgery are tricky and elusive. It takes us way back pre surgery to remember what mild symptoms felt like.

I’m curious were you getting sick often which lasted 3 months at a time with a lot of mucous drainage daily? Or was getting sick for you regular like 2-3 times a year as anyone?

With your new CT scan it would be interesting to know if your anterior ethmoid sinuses were removed and or what your frontal recess looks like. If those anterior ethmoid cells are inflamed they can really cause that anterior ethmoid nerve to inflame and burn.

It could be that now this will take a multifaceted approach of allergy management, migraine treatment, TMJ tension, and sinus re-evaluation.

The insomnia w/ pain will keep that cycle going and intensify the pain.

Trying to be helpful here as I have had a sinus surgery and suffer the same issues, but told it’s all because of my inflamed sinuses. Was told the nerves are inflamed due to ongoing sinusitis and they will continue to inflame until the sinus issue is taken care of.

Nasal steroid sprays usual only tackle the nasal inflammation. If you have middle meatus inflammation which is typically where the burning is, sprays can not even get there. It’s sounds like your relief is coming from the MT/Middle meatus when you block it. You probably pinch your nose at the bridge with some relief as well?

No post op scans.

Das is a predator that preys on ENS patients. Several of his patients have committed suicide and one tried to kill him.

Ethmoid sinuses are still there, they were just ballooned.

I do agree the anterior ethmoid nerve is involved. It is referring pain to the maxillary and supratrochlear nerves.

Nerve pain did not respond to any migraine or allergy treatment.

Symptoms originally presented as burning pain in my right middle turbinate, I wasn't getting sick. Either that or I had a sinus infection for years and didn't know what not having one felt like.

Pinching nasal bridge gives no relief. I can touch a red tender neuroma or lesion about 2 inches up my lateral nasal wall with a qtip or metal instrument and make the pain worse but nothing applied to or injected into the area relieves the pain.

With your new post op scan it would be interesting to see what an ENT says.

I know some ENTs have their own opinions about balloon procedures vs. traditional FESS surgery.

With not being sick and not having mucous drainage, perhaps the balloon was to help with breathing sensation? I don’t know all the ins and outs of sinus surgery but I thought sinus surgery was for chronic sinusitis with symptoms presenting as nasal drainage, stuffiness and ongoing infections of 3 months or more.

I know you have been scoped by many ENTs.

Perhaps the new CT can guide a new ENT with a finding that could possibly help. Those ethmoid sinuses can be tricky with pain referral as well.

I am also of the opinion that changing the shape of the septum presents new shift in airflow, straight to the middle meatus without the curvature of air it had been used to. Where before the middle turbinate/middle meatus had controlled air up that direction and if someone naturally had inflammation in that area, and more air is now directed up that way it can intensify the feeling of inflammation over and over while an abundance of air gets to that area, as where before it didn’t. That is just my own opinion. And since no one can “see” airflow it’s hard to tell.