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Taste / Smell gone

Dear team,
for several months, my sense for smell and taste has nearly totally completely gone. I have polypes, however nor very many, I have been operated twice and in so far all sinuses are widened.
Antibiotics inhalative and orally, Vitamin B1, cortisone nasal spray, bromelain are not effective. I have to be careful with taking cortisone, that I have already taken several times (inner eye pressure increased, bone density, psychic affections).
Nobody is taking the topic really for serious. Can it really be, that nothing can be done anymore? It really impairs my joy of living and is a burden for my relationships and social life, as I always liked eating and cooking. I am indeed a bit depressive, which increases with time.
Many thanks for advice,
CF patient, adult
Dear questioner,
beforehand I would like to inform you, that I discussed your question with our ENT specialist, Dr. Stephan Hakcenberg, who cares for our patients in our CF center in Würzburg, Germany.
Now to your question:
you report, that for several months, smell and taste had nearly completely gone and that you suffer from nasal polypes, therefore you had been operated twice and different therapies did not bring relief. Here one has first of all to assume, respectively it is in general always like this, that via nasal polypes and the problem of the upper airways in the first line the smell is impaired and with that also a great part of the taste, which is particularly transmitted via the smell. As the nerves for the smell enter the brain very high in the upper airways at a narrow place, every narrowing can impair the transport of the smelling particles: beginning at the nostrils via the nasal meatus until up to the narrow space where the smelling nerves enter the brain. Therefore this is a frequent problem of CF patients, who suffer from problems with the upper airways. The real taste buds and nerves are located on the tongue, these are however not directly involved. That means, if one could improve the problems of the upper airways, one would expect and hope, that the smell is also improving and with that the taste comes also back.
As the problem in CF is particularly an impaired cleaning function in case of too viscous secretions, the liquefaction and the transport of this mucus can improve the situation: for this, nasal shower with saline solution can be recommended (please use cooked water plus e.g. Emser® salt): however the cleaning function cannot reach the sinuses. If one wants to reach the sinuses, one has to inhale with vibrating aerosols via a "Pari Sinus" inhalation device. I could not read from your question, if you ever tried to inhale with such a device. You report about antibiotics inhalative, however you could also have ment the normal inhalation into the lungs via a mouth piece. With the Pari Sinus one inhales via one nostril into the sinuses; for liquefaction of the mucus, hypertonic saline can be used (here often 3% as 6% is frequently irritating the mucosa) or also rh-DNAse (Pulmozyme®).
A second part of the therapy is the usage of steroids/cortisone. You mentioned already Nasonex® nasal spray, that has been shown to be effective to keep polypes small and can be used for a longer periods of time without problems (in contrast to decongestive nasal drops).
If one wants to reach with steroids also the sinuses, the inhalation of Pulmicort® with the Pari Sinus can be recommended.
Also antibiotics (colistin, tobramycin) can be inhaled sinu-nasally; this is less targeted at the polypes, however in first line is targeted at the killing resp. suppression of Pseudomonas, in case it can be found in the upper airways.
In summary, one should max out the possibilities of the therapy of the upper airways and also one should try, what does really help in the individual case. It would be the best to do this in cooperation with a CF specialized ENT physician. Then one could hope to achieve an improvement of the smell and consecutively also the taste. Unfortunately experience has shown that in case of CF patients there are some patients who can not regain completely or even at all their sense of taste and smell, in spite of the fact that they received optimal conservative als well as operative therapy.
Besides, your CF physician in charge should check your medication, especially the long-term medication, if some drugs could possibly influence in the long runs your sense of smell and taste.

Best regards,
Daniela d'Alquen