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Hi Suzanne. So sorry to hear what you are going through. To not have answers and to feel like you, or your doctor have tried everything can be extremely frustrating.
Often times surgeons will only want to operate as that is what they are trained to do. Not understanding or mistaking the root cause of the issue. I know you stated your ENT is one of the best in the country. But perhaps it’s time to get a second or third opinion if you haven't done so already. The nasal mucosa has healthy bacteria in it that helps to fight off everyday dust, allergens and viruses. I am not sure what type of sinus surgery you had, you said extensive, so I would be more curious if the surgeries are contributing to your worsening of symptoms. Many people will suffer afterwards from their natural lining/mucosa being disrupted by surgery causing bad bacteria to colonize even more. Hopefully you have had time to restore your gut flora
from all of the antibiotics you have been on and are nourishing your system with foods that will assist in overall immune health.
The whole body is connected, so surgery on the sinuses can affect the whole body. The same lining that lines the nasal mucosa also lines the esophagus all the way down to our gut.
ENTs or surgeons will only talk to you about what’s going on from the neck up. Have you thought about seeing an infectious disease specialists since this did start while in another country. With the other things you mentioned that set in a year after surgery, it sounds like you need a whole body approach on this and to not just be given prescriptions from an ENT.
I would be curious to know how long you lived in Asia before developing symptoms and being healthy prior to. Our bodies can have a hard time adjusting internally/externally to a shift in environment like a move. Temperature, climate, even different water sources and foods can all affect the internal microbiome. When that gets disrupted, that can cause stress on the body which can cause things like infections.
The sinuses also respond to high stress with inflammation, which is not helpful when going through something stressful with your health.
Try to get to the root cause with the right help and I’m positive things will get better for you.
Replies to "Hi Suzanne. So sorry to hear what you are going through. To not have answers and..."
My infections started a few months after moving in Dec 13 and got much worse after the fires from Indonesia in 2015 which blew our way for 2 months. I have had multiple hospital admissions and finally surgery in late 2014. I was hospitalised in 2016 with another bad sinus infection which led to endocarditis, pericarditis and septics arthritis. ENT thought when I moved back home with clean air I would get better but sadly I have had to have 3 more surgeries. I also have a sun allergy and Raynauds along with it. My immune system seems to have gone haywire. As mentioned I did see an immunologist and tests were inconclusive. Re the staph they cultured it after surgery and it is not MRSA.
I am vegan and have been going to a naturopath for many years. She has now said there’s not much else she can do.
I am currently on another course of antibiotics as I presently have another infection.
The worse part was in late 2018 I was complaining about headaches and ENT said all was clear when he did the scope and thought it may be GERD. Put on meds for that but headaches and post nasal drip continued for 6 months. It was only when I had a severe infection he did another CT an it showed severe disease and did another surgery where they also found I had polyps. I asked why didn’t he see the infection under scope and said the infection had walled off so it looked clear.
Even the CT did not show the polyps.
I do not know what else to do and my body is full of antibiotics. I probably have had 40 courses in last 5 years.
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Many thanks for your reply.I moved to Asia and within weeks I began to have URI symptoms. First hospitalised six months later for sinus infection and IV therapy and then my first ENT surgery. In 2015 the fires in Asia which lasted 2 months did not help and I was hospitalised numerous times for IV therapy. I returned home in 2017 and since then I have had 3 additional sinus operations including turbinate and the last one a modified Lothrop. My ENT does not like to do surgery as each time I lose some structure and integrity however the level of infection is severe and the last CT showed the sphenoid completely blocked. I flush twice a day and usually nothing comes out. Since this has all started I have also developed a skin rash requiring a regime of 3 months of histamine blockers, severe rash when I go on a beach vacation, skin abscesses requiring drainage and raynauds. I have seen a rheumatologist, infectious disease specialist, gastroenterologist (to rule out GERD) and an immunologist. Some of my lab tests were abnormal but nothing drastic. I also follow a vegan diet and take probiotics. I was contemplating asking for second ENT opinion but as mentioned my doctor is the one that other ENT refers the severe cases to but perhaps it’s time. It’s a horrible way to live and I try to remain positive buts it’s not easy.