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
Below is the information regarding my visits to the Taste and Smell Clinic in Washington, DC, in January 2004, August 2004, September 2005, October 2006, January 2008, December 2010, October 2011, October 2013, April 2015, April 2016, and May 2017.
Over the years, I have experienced the following, which seem to be a natural part of the healing process for most of us:
My physician for this condition is:
Dr. Robert Henkin
Taste and Smell Clinic
5125 MacArthur Blvd. NW, #20
Washington, DC 20016
(202) 364-4180
(202) 364-4181
He’s happy to discuss your condition with you and I found talking to him prior to scheduling an appointment to be a great help.
I hope you find this information useful. If you have any questions…I know I had so many prior to my visit to the clinic…please email me at ferrero.franni@gmail.com, writing “Taste and Smell” in the subject line so that I know it’s not spam.
Franni
My condition: As a result of a severe cold and using Zicam, an over-the-counter, homeopathic cold medication, in June 2003, I lost most of my smell in my right nostril and had none in my left. 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, Dr. Henkin 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 met with 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 with 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 speaks to my first visit at the clinic, many of the tests described were conducted during subsequent appointments 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’s 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 us, he seems to use it all in forming his diagnosis.
· He took one vial of blood for testing.
· 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 that were brought to tears by the experience. It helped to keep reminding myself that there were answers 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 paid 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. My health insurance paid approximately $700 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 that I had been asked to keep prior to coming to the clinic. 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 too 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 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, 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 has asked me to visit him a year from now and has scheduled me for a phone appointment six months from now. I continue 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 estimate that my taste and smell have slowly improved to approximately 80-85%, even though I’ve had three colds in the past year. I still have times when someone will ask if I can smell something in particular and I say “No.” However, I can honestly say that if I could just remain at this level of taste and smell, I would be an extremely happy woman!
My fourth visit in October 2006: 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 was over shadowed by the fact that I felt I had 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?
My January 2008 visit: This appointment lasted two hours. Blood and saliva were taken, I had the taste and smell tests, and Dr. Henkin examined my ears, nose, and throat. I knew I was doing well and that was confirmed. I did the best I’ve ever done in the taste and smell tests and told Dr. Henkin that I believe I’m tasting and smelling better than I did prior to loses my taste and smell.
Dr. Henkin has asked me to continue with 600-mg. daily of Theo-24 for another year. I’ll be seeing him again on January 15, 2009, and, at that time, he will consider reducing my dosage. The cost of this visit was $1,700.
December 2010: Due to the expense, I haven't been able to visit the clinic in three years. During that time, I've been taking my daily 600 mg. of Theo-24, working on losing the weight I gained during the time I lost my taste and smell, and trying to improve my health in general.
This appointment also lasted two hours. Blood and saliva were taken, I had the taste and smell tests with someone working with Dr. Henkin, and then Dr. Henkin met with me to conduct a few more taste and smell tests.
As your taste and smell improves, the related tests are made more difficult. Emotionally, it doesn't get any easier, but it's an essential part of the process.
Overall, I feel great. My taste and smell remain intact and better than ever. I'll continue taking the 600 mg of Theo-24 for the time being and I'm scheduled to see him next year at the same time. The cost for this visit was $1,700.
October 2011
This appointment also lasted two hours. Blood and saliva were taken, I had the taste and smell tests with someone working with Dr. Henkin, and then Dr. Henkin met with me to conduct a few more taste and smell tests.
From the taste and smell tests, Dr. Henkin was able to determine that while my taste and smell have greatly improved (I still felt like they were at 100%!), he felt they could improve even more. He increased my dosage of Theo-24 to 800 mg. daily and I did see improvement within two weeks.
He asked me to return in six months, but due to a death in my immediate family, I have been unable to return to date. I’m hoping to do so very soon.
I now have Medicare coverage, so charges for my visits are paid through Medicare and my supplemental insurance. Hurrah!
October 2013
This appointment lasted two hours. Blood and saliva were taken, I had the taste and smell tests with someone working with Dr. Henkin, and then Dr. Henkin met with me. This was the best visit ever. My taste and smell tests tested the best ever. I’ll be returning to see him in October 2014 and am continuing to take the Theo-24. We briefly discussed my being able to decrease the dosage after this year’s visit.
April 2015
I was unable to return to the Taste and Smell Clinic in October 2014 and rescheduled for this month. The appointment lasted approximately one and a half hours. Blood and saliva were taken, I had the taste and smell tests with someone working with Dr. Henkin, and then Dr. Henkin met with me. My taste and smell tests indicate that I continue to stay at the improved measurements. I’ll be returning to see him in either 6 or 12 months and am continuing to take 800 mg of Theo-24 on a daily basis.
My understanding is that he would like me to remain at this dosage for six months to a year and, if my tests remain consistent, he'll begin to slowly reduce the dosage to determine if I can retain my taste and smell.
Phantom Smells After Regaining my Taste and Smell
Dr. Henkin and I speak periodically by phone. One of the reasons is that while living in Santa Fe, NM, I had a phantom smell for approximately one week every November around Thanksgiving. The first two years it smelled like cigarette smoke. Then, in later years, it smelled like oil from a very hot engine or like the smell you get when you light briquettes that have been covered with lighter fluid. We've come to the conclusion that it's allergy related and during that time I do my salt-water inhalations three to five times a day. Like clockwork, it went away in a week.
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 five 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 decide when 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.”
Update for 2016
In May 2015, I came down with a very severe sinus infection and have once again lost my taste and smell. Dr. Henkin feels that “…it will return, however, not as quickly as either of us would like.” I’m having small signs of recovery and remain optimistic that it will return; of course, it’s difficult to travel this road again. I’m scheduled to see Dr. Henkin again on April 2016 and testing will provide additional information.
April 2016
It’s been approximately one year since I lost my taste and smell for the second time. After taking the usual round of tests, it was determined that I have regained 20-25% of my taste and smell. Dr. Henkin is optimistic that by my 2017 appointment, I will see significant improvement.
Emotionally and physically, I’m doing much better than I did the first time I lost these senses. My weight gain has been minimal and my outlook is much more positive about the eventual recovery of my taste and smell. It’s still a difficult journey, but I’m concentrating on staying healthy and active to support my recovery
May 2017
This appointment lasted two hours. Blood and saliva were taken, I had the taste and smell tests with someone working with Dr. Henkin, and then Dr. Henkin met with me. Although the tests indicate that my taste and smell have improve to 60% (up from 20-25%), we discussed that I’m not experiencing the improvement. Dr. Henkin states that the reason I don’t feel the improvement is because of problems I’m currently experiencing with my thyroid.
My general practitioner suspects that I have a growth on my pituitary gland and a MRI is being scheduled to confirm this. She is optimistic that if that’s the case, surgical removal of the growth and the correct level of thyroid medication will return me to a healthy state. Dr. Henkin believes I’ll experience the increase of taste and smell shortly after the thyroid issues have been corrected.
I’m am scheduled to call Dr. Henkin in four months and again in eight months to discuss my progress.