I met Franni Ferrero through the dysosmia website at yahoo. Like me, she is a patient at the Taste and Smell Clinic in Washington DC and is being treated by Dr Robert I Henkin. Franni offered the following information to me to help anybody who may have planned a visit to the clinic or may be considering doing so, and gave me permission to link it to my FAQ page.
Mick O’Hare
Here’s the information regarding my visits to the Taste and Smell Clinic in Washington, DC, in January 2004, August 2004, September 2005, and October 2006. I hope you find this information useful. If you have any questions…I know I had so many prior to my visit…please email me at franni_nm@yahoo.com.
Franni
My condition: As a result of a severe cold and using Zicam, an over-the-counter cold medication, in June 2003, I had an insignificant amount of smell capability in my right nostril and none in my left when I visited the Taste and Smell Clinic on January 9, 2004. I was diagnosed as having hyposmia (that is, partial taste and smell) and, at that time, it was estimated that I had 10% smell and 12% taste. I had “mouth taste,” meaning that I could distinguish between sweet, sour, bitter, and salty, but couldn’t taste the flavor of foods. At times, I would get a full taste or smell of an item. For example, when I took the first bite of a meal, it was like I had normal taste capabilities. But subsequent bites were tasteless. I was fortunate to have no major smell distortions.
Prior to going to the clinic: Three months after losing my taste and smell, I visited an ENT who treated me with zinc tablets and Rhinocort nasal spray. He stated that if I saw no improvement in two months, he would refer me to an ENT at the University of New Mexico Hospital that specialized in the loss of smell.
Since I saw no improvement, I met the second ENT in November 2003, who performed some basic tests and conducted an examination. The appointment ended with him telling me to “learn to live with it.” I was devastated and very depressed.
My first visit to the Taste and Smell Clinic in January 2004: Although this section refers to my first visit to the clinic, many of the tests described were conducted during my second, third, and fourth visits as well.
I had a very good experience at the clinic. The staff is very kind and Dr Henkin was compassionate and shared so much valuable information. Personally, by the end of my first appointment, I felt like a great weight had been lifted from my shoulders! That said, here is some additional information:
· Be prepared to complete multiple pages of paperwork and don’t be surprised if Dr. Henkin asks you some of the same questions.
· In his initial interview with me, I was asked a multitude of questions! While some of the information may not seem relevant to patients, he seems to use it all in forming his diagnosis.
· He took one vial of blood and I was asked to provide a urine sample.
· His assistant collected my saliva sample. While it was not unpleasant, it helped that I like lemons since lemon juice is used to stimulate your saliva glands.
· During the taste and smell tests, he gently reminded me that this was a difficult test. While it was only somewhat frustrating for me, I met others who were brought to tears by the experience. It helped to keep reminding myself that there was important information being provided in both my ability to smell something or my lack of being able to smell it. My results were 10% smell capability and 12% taste capability. Keep reminding yourself that it’s not a pass/fail situation!
· When I left the clinic on Friday, I was asked to collect urine samples for a 24-hour time period. A container and a canvas bag (in which to carry it) were provided. Don’t let this stop you from sightseeing on the weekends! I just put it in my backpack and carried it with me!
· I was also asked to collect mucus samples in a small container from the time I left the clinic until I returned on Monday. So, instead of blowing my nose into a tissue, I blew it into this container. It’s an art form believe me! But it’s easy to do once you get the hang of it and Dr. Henkin emphasized that so much good information could be obtained from these samples.
· I had the option of paying for each office visit at the end of each visit. However, after talking to others, I believe you can talk to the office staff about paying a deposit until your insurance comes through. The total cost of my first round of appointments was $2,932. Personally, I think this is a good investment in my health. I’m fortunate in that my health insurance paid for a small portion of the cost, but I find this condition to be so disturbing that I believe I would have gone to the clinic even without the insurance.
· On Monday, when I returned to the clinic, Dr. Henkin reviewed the results of my tests with me in detail. We also went over the results of my three-day dietary record. In the end, he recommended adjustments to my diet and a course of treatment, including instructions on when to contact him.
· Plan on taking any CTI scan films that you took to the clinic back home with you.
At the end of my visit, I was instructed to perform daily salt water inhalations (affectionately referred to as “salt water snorting”) and to take 300 mg. of Theo-24, an asthma medication. Through my phone appointments with Dr. Henkin, I gradually increased my dosage until I was taking 600 mg. a day. The only side effect I experienced was a bit of nausea when the dosage was increased and that lasted two to three days. Later, I determined that eating a good-sized meal for those first three days of the increase in dosage really helped to avoid the nausea.
My second visit in August 2004: Between January and my August 19 appointment, I estimated that my smell and taste had improved by approximately 10%. Following the first round of tests at the clinic on August 19, Dr. Henkin confirmed that my taste and smell were now somewhere in the range of 20-25%. I was placed on steroids (Dexamethasone) for four times a day for only three days…Thursday, Friday, and Saturday…to kick start my cells. Much to my surprise, I actually tasted much of my breakfast on Friday morning! It was overwhelming!
Dr. Henkin tested me each day (almost all of the same tests I received during my first visit, with taste/smell tests performed all three days) and, Saturday morning, just prior to leaving for the airport, I got the good news! I was in the 70-75% taste range that morning and my smell range was a little lower. The total cost of the second visit was $2,075.
Following my second visit: Dr. Henkin told me that, following the three days of steroids, I could expect to experience approximately a week of depression and one or two days of not being quite myself. He was right on target regarding both items. About three days after the steroid treatment I had a day or two of having trouble concentrating and focusing. Plus, I had difficulty making a decision or have a truly intelligent conversation for those two days! But, believe me, it was well worth it! I didn’t realize how overwhelmed and emotional I would feel having my senses back!
Tastes and smells were a shock to my system. Initially, bacon tasted really salty and sweets of any kind were just too sweet. That passed fairly quickly and things began to taste normal within a week or two. As I stated above, it was also a very emotional time for me. I’ve always loved the smell of rain and the first time I could smell it after my recovery, it totally caught me off guard and I began to cry. It was incredible. There have been a lot of “firsts” since then and I’m totally enjoying them.
I’m continuing to take daily doses of 600 mg. of Theo-24 and check in with the doctor on a regular basis to determine my current condition. So, I’m focusing on providing the doctor with the estimated daily percentages of my taste and smell.
My third visit in September 2005: This was a one-day visit and consisted of a blood sample, mucus sample, saliva test, and, of course, taste and smell tests. The appointment lasted approximately 2.5 hours and Dr. Henkin was very pleased with my progress. The taste and smell tests are never easy, but he told me that as your senses improve, he makes the tests more difficult. He confirmed that my recovery was continuing and was very pleased with my improvement.
The cost of this appointment was $1695. Dr. Henkin asked me to visit him in a year and scheduled me for a phone appointment in six months. I continued to take my 600 mg. of Theo-24 daily and do the salt water snorts a minimum of once or twice daily.
Since my appointment in August 2004, I estimated that my taste and smell had slowly improved to approximately 80-85%, even though I had three colds in the past year. I still had times when someone would ask if I could smell something in particular and I’d say “No.” However, I can honestly say that if I could have remained at this level of taste and smell, I would have been an extremely happy woman!
My fourth visit in October 2005: This was a one-day visit and consisted of a blood sample, mucus sample, saliva test, and, of course, taste and smell tests. The cost of the visit (see below) was over shadowed by the fact that I’ve regained 100% of my taste and smell, with the minor exception of some small areas in which my allergies are reducing my ability to smell, not surprising since I live in the land of allergies (New Mexico, USA). So, to combat that, I will begin taking Singular and using Flonase (a nasal spray).
The cost of the visit was $1,470 and I will be returning again next year at the same time to determine if I’ve maintained my improvement. Meanwhile, I’ll continue taking 600 mg. of Theo-24 on a daily basis.
This is an unbelievable milestone in my life. I’m so grateful to have found Dr. Henkin when most doctors throughout the world believe there is no cure for anosmia (that is, a loss of taste and smell). When I walked out of his office four hours later, the world somehow looked different to me. I was no different than when I walked into the office, but now I was armed with new knowledge! For me, it’s amazing that my senses have returned stronger than they were when I originally lost them! Our bodies are incredible, aren’t they?
In summary: Getting my taste and smell back has been nothing short of a miracle and I’m very grateful that Dr. Henkin is willing to address this condition aggressively. I know when you add up the total costs of my four visits, plus travel expenses, it must seem overwhelming, especially when there are no guarantees. But, as my husband told me as we began this journey, how do you put a price on the possibility of regaining your taste and smell?
Taking the step to go to the Taste and Smell Clinic was a very personal decision, one that was made after extensive thought and consideration. I asked questions, did my research, and finally did what felt right for me. I found the condition to be devastating and felt I had to know that I had done everything I could. No one else could make that decision for me. Needless to say, I’m so grateful for Dr. Henkin and those at his clinic that made this possible. This has taught me to never give up…especially when some members of the medical field tell you to “learn to live with it.”
Please know that as I recover, I feel it’s even more important to support others that are dealing with this condition. Should you ever want to email me directly, please feel free to do so. If you feel it would be more helpful to talk by phone, let me know and we can arrange a time that is convenient for both of us. We are all in this together!
Updated December, 2006.
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