chronic eosinophilic sinusitis

[42mom]

I was told I have this desease from a Wake Forest Dr. in N.C.   He said he could do surgery and it was about 4 hours long.  He also said that it would help me but not cure me.  Then I would have to do a bout of heavy predisone for a couple of months.  I started off at Thanksgiving with a cough and went to the Dr and was on antibiotics off and on for a month and finally went for a chest xray and they said I had walking pneumonia and asthma ( never had any trouble with this or sinusis before in my life) took cough syrups and nothing helped.  Then it all went to my nose about March and my Dr. got me in to see an ENT.  He done CT scans of my sinus and said I was a mess.  Had trouble breathing and severe coughing and drainage.  He put me back on steroids and anitbiotics.  Done another ct and it hadn't cleared up any and he told me to go to Wake Forest. Nothing helps but the steroids.( Dont want to keep taking but nothing else helps).  I am kind of leary abouth having the surgery but don't know what else to do.  Can somebody tell me if anything has helped them.

[fixpack]

Im sorry to hear that other folks seem to have the same problem as Ive had for about 9 years now. I was originally diagnoses with acute eosinophilic sinusitis (AES) in 2007, after a year of sinus infections, multiple coarses of broad spectrum antibiotics which ultimately, lead to disbiosis in the gut. (Probiotics are essential) I then had the sinus surgery in 2007, with some relief but finally went to Mayo Clinic, Rochester Mn, for the AES diagnosis. The solution to the problem was 80mg injections of Kenolog every 6 months, nasal flushes twice/day, Advair 150 for asthma symptoms, and Albuteral for emergency respitory attacks. Since I was using about a box of Kleenex a day, occasional use of Ipratropium was also prescribed. This worked for about 4 years, when the Kenalog injections began to provide relief for around 4 months rather than 6 months. The Mayo ENT then prescribed another very expensive cortiosteroid that was to be mixed with the nasel flush. This worked for about 2 months and was too costly to continue. I went back to the 80mgs of Kenalog until 2013, at which time I had a bone scan and discovered bone loss and Ostiopinia, so my Internist would not allow the Kenalog injections. About that time, Nasacort came out and I used it along with Singulair and ALbuteral until around October of 2015, when the Nasacort and Singulair started to loose its affect. When sinus infections set in, Antibiotics along with 10Mg of prednisone have been prescribed. Once the prednisone wears off, the sinus pressure, brain fog, and malaise set in and I pretty much have to live with it. I set up another appointment with Mayo Clinic, but cant get in until July 22. Meanwhile, in the last 8 years, I have seen Chiropractors, Kenisiologists, Accupuncture, Chinese Medicine practicianers etc. Ive taken supplements of about every type one can imagine. The most IMPORTANT part of the problem was discovered in 2010, by a Chiropractor who ordered several blood tests to determine: Gluten, Soy, Corn, and Ginger intolerances. To help with inflammation, I was put on a Palio diet for 30 days. I stay away from sugar, dairy, wheat, corn, and soy. All of these are triggers to the immune response.   Bhupinder Kaur, MD is correct about the "unregulated inflammation" that is present within the sinus structure and also throughout the body. I have developed peripheral Neuropathy, Frozen shoulders, Brain fade, memory loss, loss of smell and taste, among other issues associated with this long term affliction. I hope somebody finds a cure rather than a mask for this illness. Best of luck to all who have this. RGB

[merciel]

I wondered if you had the surgery?

I have had the same symptoms and was treated with antibiotics and surgery by a local ENT. After I still had breathing troubles, constant coughing, and a new CT scan showed new sinus blockage, I was refered to a Wake Forest ENT. With the first appointment he diagnosed my condition as chronic eosinophilic sinusitis and prescribed 10mg predisone daily. I see him again next week and have another CT scan. I'm not too happy with the idea of surgery again.

[Nan817]

Going for third surgery in three years. Had about 9 months of relief but it started all over again. Started allergy shots and also on inhaler. Never had a problem with sinuses or allergies prior. Woke up one morning, couldn't stop sneezing, and finally when it stopped nasal congestion which never went away.  Antibiotics, steroids, over the ctr meds, all to no avail.  After second surgery was placed on montelukast and nasal saline rinse with budesonide, which helped for 8 or 9 months. Then started coughing at night and I became concerned it might be from the montelukast so I stopped it (although ENT said to stay on it). Now on an inhaler. It's been a nightmare. Although I know there are worse things, I feel that the quality of my life is forever changed. I never feel well. Hoping that the third surgery will give me some relief for a few months.  

[Bhupinder Kaur, MD]

Hi,

This type of sinusitis is also known as chronic hyperplastic eaosinophilic sinusitis with nasal polyposis (CHES/NP) as it is usually associated with small polyps/swellings in the nose. It is the prominent accumulation of eosinophils that is the diagnostic feature of this condition. That eosinophils are a prominent source of certain inflammatory factors suggests that CHES/NP is a disease of unregulated inflammation in which eosinophils once present in the sinuses provide the growth factors necessary for their further recruitment, proliferation, activation, and survival.

For the treatment, simple measures like Nasal irrigation and flush promotes sinus cavity health.

In some studies, "daily hypertonic saline nasal irrigation improves sinus-related quality of life, decreases symptoms, and decreases medication use in patients with frequent sinusitis," and is "recommended as an effective adjunctive treatment of chronic sinonasal symptoms.

A relatively recent advance in the treatment of sinusitis is a type of surgery called FESS - functional endoscopic sinus surgery, whereby normal clearance from the sinuses is restored by removing the anatomical and pathological obstructive variations that predispose to sinusitis. However, Surgery should only be considered for those patients who do not experience sufficient relief from optimal medication.

Another recently developed treatment is balloon sinuplasty. This method, similar to balloon angioplasty used to "unclog" arteries of the heart, utilizes balloons in an attempt to expand the openings of the sinuses in a less invasive manner. Its final role in the treatment of sinus disease is still under debate but appears promising.

http://en.wikipedia.org/wiki/Sinusitis
http://cat.inist.fr/?aModele=afficheN&cpsidt=17457156

Please do keep me posted about the developments.

Warm Rgds,