I think I have ENS, now what?James' suggestions on what to do next
- Get a formal diagnoses from an ENS doctor
You probably have already seen your primary care physician and possibly an ENT or two. You have likely been told your nose looks fine. You may have even been dismissed and told your problem is psychological or psychiatric. The hard truth is that ENS is rare, there are no objective tests for it, and thus its considered controversial. Doctors may have told you that there is no evidence that you have ENS. The fact is that there has likely been no attempt to find evidence as there are so few objective tests to confirm normal nasal fuction. Dont waist time tyring to convince a doctor that you have ENS if they think you don't.
Seek out an ENS friendly doctor. If you in North America that would be:
- Dr Stephen Houser (Cleveland, Ohio)
- Dr Jayakar Nayak (Stanford University, California)
- Dr Subinoy Das (Columbus, Ohio)
- Dr Andrew Thamboo (Vancouver, Canada)
If your elseware take a look at my map of ENS friendly doctors. Get in touch with one of these doctors. If you want to save money before making a trip to visit some of them will do an initial phone consult after you send them your most recent CT scan. When you visit in person they should do a number of things such as:
- Review of nasal surgery history
- Questionairs such as the SNOT-22 and ENS6Q
- Review of most recent CT scan
- The cotton test
Once you have a confirmed ENS diagnoses its time to start thinking about what to do next. The doctor you see will likely have some ideas. If the surgery that gave you ENS was recent some doctors will suggest waiting a year to see how much it will heal on its own before trying any treatment.
- Build a support network
ENS is a devastating condition. Its hard for others to understand. Its hard for you to accept. Try to find family, friends, and medical professionals that can support you. You'll probably have to educuate them on the condition as they may be skeptical. This can be exhausting as your suffering so bad. The first year is the hardest. You maybe unsure if you can continue. You'll be angry. Angry at the surgeon that injured you. Angry at yourself for having the procedure. Try to hang on. Join a support group such as Nose Syndrome Awareness or Post Nasal Surgery Dysfunction Community
ENS research and treatments have come a long way in the past 10 years. There is hope.
- Learn as much as you can
- Participate in the Ohio State University ENS research
Personally I think this is one of the most important first steps that you can take. It will not only give you valuable information to help you make informed choices but it also helps out the entire community by contributing to ENS research. There are two possible levels of involvement:
- Sending your CT scan and answering questions via email
- Visiting in person in Columbus, Ohio for more detailed tests
Either way this will give you three important pieces of information that can give hints on what treatments to try. You will learn:
- Nasal resistance
- Airflow patterns
- Trigeminal function
To date the OSU research has lead to some of the most important findings to date on why some people get ENS while most don't. They have produced three ENS journal articles:
- Computational fluid dynamics and trigeminal sensory examinations of empty nose syndrome patients (Mar 2017)
- Investigation of the abnormal nasal aerodynamics and trigeminal functions among empty nose syndrome patients (Nov 2018)
- Computational fluid dynamic analysis of aggressive turbinate reductions: is it a culprit of empty nose syndrome? (May 2019)
If you want to read about my experience at OSU you can read my FaceBook Post. It gave me hard evidence that my nasal resistance was low after years of doctors saying nothing was wrong but doing no tests themselves.
To get involved in the OSU studies you can call +1 614-366-1794 or email the assistant Bhakthi.Deshpande@osumc.edu The the principal investigator is Kai Zhao. He has been amazingly generous with his time answering emails and questions regarding my study results and ENS in general. You can find out more at the OSU Wexner Medical Center's Nasal Physiology and Therapeutic Center page
Once you have the results here are some considerations:
- Resistance: If you have low nasal resistance you should consider treatments that add bulk and narrow the nasal passage
- Airflow: If you CFD results show abnormal airflow you should consider treatments to correct that
- Trigeminal function: If you study shows poor trigeminal function that is a tricky one. It may indicate that their is nerve damage and a regenerative treatment would be a good option to try. It might not mean that as well (see note below)
Side Note: The pathopsychology is not well understood. The current thinking is that ENS is due to airflow changes resulting from structural changes and/or that its due to due to mucosual/nerve damage of the tissue. Its likely that each individual case has a different set of factors and treatments will need to be tailored based on the damage done. I think what is important to remember is that you can't assume nerve damaged based soley on the loss of sensation of airflow. Other possible causes of loss of sensation are as follows:
- Low nasal resistance decreases the wall sheer stress resulting in less airflow signal
- Changes in airflow can direct airflow away from airflow receptors
- Dryness in the nose can cause the loss of airflow sensation
The bottom line is that you can't tell if you have nerve damage no matter how sure you are that you do.
- If sleep is a symptom, get a sleep study
A lot of people with ENS have trouble sleeping. Some possible explanations for this are:
- Obstructive sleep apnea resulting from airflow changes
- Central sleep apnea resulting from airflow sensing problems
- Sympathetic nervous system over activation
The only way to know if you are experiencing sleep apnea is go have a test done. If possible try to get a test done in an accredited sleep lab rather than a home test. The type of sleep test you want is called a polysomnogram. It pick up on much more subtle problems such a upper airway resistance that might be missed on a home test.
If your experiencing sleep apnea, get it treated. The most common treatment is some form of postive airway presssure (CPAP, APAP, BiPAP.) If your experiencing centrals apneas you may need more complicated treatment such as BiPAP or Auto Servo Ventilator (ASV) A nice side effects of using these machines is that they provide humidification for the nose which can be helpful the ENS patient.
- Try some treatments
ENS is complicated and not well understood. Learn as much as you can about what is currently known. As a starting point I have compiled a list of some things that I think maybe useful
- Structural treatments
- Hyaluronic acid (HA) gel injections
- Regenerative treatments
- prp + aCell
- hrl + aCell
- Stem Cells
My personal opinion is that focusing on structure is a good place to start. Your nose cavity was likely changed by surgery. Try to get the nose back to 'normal' as much possible. In my opinion a filler such as HA injections is a good place to start. If you have low nasal resistance it can increase that. If your airflow is abnormal the cotton test can be used find locations to put the HA that can help normalize that. Even if you have nerve damage adding HA in strategic spots can redirect airflow to areas of the nose that can still sense airflow. Another nice thing is that HA is temporary and you can try different areas to find the best solution. Once your happy with the results you can repeatedly get injections or consider implants.
Hopefully someday stem cell technology will provide better solutions.