New Beginning

I had another procedure even amongst all the anxiety, unknown, and the terror of what could happen.

I had grown accustomed to my new baseline, my low level of anxiety at all times. I adjusted to having to lay in a specific position to sleep, had to sit in a specific way to feel comfortable and able to function. Sleeping a maximum of 4 to 5 hours at a time at getting up at least once a night. Having a glass of water next to my bed because I was always so thirsty at night. Having to take my Sertraline every day. Waking up severely tired. I even used Afrin in my nose to get a "good night" sleep, which consisted of about 8 hours of sleep, however I knew this would only be temporary and worse the next night due to the rebound congestion.

I was finally awarded 6 month, all expenses payed, to Dr. Nayak at Stanford University from Kaiser Permanente Nor Cal. I had been fighting with them for just about 1 year to be seen by Dr. Nayak, the ENS specialist working with Stanford University! Good thing I was awarded that referral because my life has definitely changed for the better! Everything is more enjoyable, more relaxed, and I am more aware of everything. For better or worse, I have to keep telling myself that this is my new life; I'm fixed. It brings me tremendous joy, however with it brings severe sadness as I have been suffering with ENS for more than 5 years of my life... essentially my whole undergraduate degree. I struggled so much in my life, potentially missed out on so many opportunities because of ENS. It is a terrible thing to happen.

One week after my RFA on my right turbinate and injection (temporary to see if the position and fit will be favorable) to the left turbinate - I felt different. Scared, of course, that I could develop ENS on my right turbinate of course. It doesn't seem I have any severe negative side-effects. I had the procedure on 08 Dec. 2017, almost 4.5 weeks ago. Some of the changes I have noticed:

Number one must be mental clarity. It is amazing how much this changed from my baseline with ENS. I did not really fully grasp the severity of how much anxiety and ENS destroys one's mental acuity, thought process, and memory. I really didn't think I had ENS badly, and I really didn't have it nearly as severely as others. And I am so grateful. For example, I am able to clearly think about my day's agenda, what I will do several steps in advance. Like what I was capable of doing prior to my initial surgery in 2012. I can sit and actually think about something, like enjoy thinking about an object, an idea, a theoretical thought that I otherwise would never be able to contemplate. Making decisions clearly, having a conversation with someone, or interacting like a human... something I had to literally retrain myself to do with ENS. All different now. But I was so used to it, used to my old ways, how I coped with every day life. I lived moment by moment, not really able to concentrate on my future or anything really. But I can now.



I feel like I have another chance in life.

Subsequent Surgery

I decided to have surgery on my nose... again. This time with another doctor who is seems much more competent and sensible than my first surgeon - his name is Dr. Lupa. I was writing to him via email, finally to my breaking point, explaining that I cannot believe he doesn't see that I have Empty Nose Syndrome, or at lease showing symptoms of such. I had sent him about 25 emails up to this point ranging from general questions to desperate sleep deprived rants. I was fed up, I cannot live my life with this syndrome and I needed him to help me fix this; it's the worst feeling when people don't believe you or belittle your problems.

Up to this point, I had submitted 5 pages and x-rays to Kaiser to request them to fix this, outside the knowledge of my current doctor. To be either shipped to Ohio to see Dr. Steven Houser or send me to someone who understands ENS more immediately than some of the less specialized doctors at Kaiser. 

Rant Time - I was referred to a doctor, at first because I was not satisfied with my current doctor, who was a complete idiot. His name was Doctor, Dr. Doctor. Honestly, he said that he had never heard to nasal implants. He is an Ear. Nose. and. Throat. Doctor... That's his specialty. Being a doctor is a lifetime dedication, well at least it should be. 

This request was obviously denied, was not surprising. So I started email my current doctor more and more, because I needed relief. After the emailed him, saying I cannot take these symptoms any longer, he suggested that I have a septoplasty to try to reduce the amount of air flow on the left side. I had this surgery on December 23 2014 with Dr. Lupa. The plan was to move my septum over and to raise up my turbinate flap at my left IT. I did not have any reduction at this time as I really wanted to take small steps.

It did work.

I had mild improvement in my symptoms and I did not need to continue to place cotton in my nose every day! Recovery was not as difficult as my first surgery. But I did develop a small nose divot on my left distal, close to midline, nose. Small price to pay.  

Next Steps

After my appointment with Dr. Victoria Epstein was approved, she ended up calling me and talking with me about my prognosis and what she could and wasn't comfortable doing to me. She wasn't confident in doing empty nose syndrome (ENS) surgeries and I understand that. So she offered to refer me out to Stanford University which need to be approved by Kaiser to allow me to be treated at that ability. The physician working there is Jayaker Nayak, who hopefully has some specialty knowledge of strategies to fight my ENS. Where there is a few medical facilities in the United States that specialize in sinus problems, Stanford is one of them and Metrohealth Medical Center with Dr. Steven Houser is the other. I hope to see within the next few weeks the progress of my approval. Maybe I can rid myself of this syndrome.

Moving Forward

It's been so long since my last post, a lot has happened, but trust me, I still feel terrible every day. I wake up at least once a night, every night, and feel anxious with this suffocating feeling every day. My chest feels as if it's locked out like I'm taking a breath and I can only breath in a little more. My heart constantly races and I completely lose my concentration on my current task at hand. My only relief is that this plague has only effected my left inferior turbinate, so essentially I have partial Empty Nose Syndrome (ENS). This requires me to modify my life extensively - always leaning to my left, using Afrin when I need to do important things or things I want to enjoy like an interview or vacation. Afrin helps my right side to reduce, allowing me to breath more easily, however there is rebound congestion which is absolutely terrible for the proceeding 3 days after it starts.

I'm 24 years old, almost 25 and had this surgery just prior to my 21st birthday... so I'm 4 solid years of having this terrible syndrome and it has definitely ruined my life and will do so for the foreseeable future. My academic life has suffered, my social life has suffered, my romantic life has suffered... It's effected my mental ability - it's almost imposable for me to concentrate mentally or physically, I always have a shakiness to me like I have adrenaline in me - I can't hold things still, my heart is constantly fluctuating in heart rate and I feel weak and severely light headed sometimes, and my sleep is an absolute train wreck.

After my last blog, I was assigned to Dr. Michael Lupa at Kaiser Permanente (KP) who apparently took on cases of ENS. He was a genuinely good physician that ended up performing a slight septoplastly of my lower nasal septum to try to lessen the amount of air traveling to my left nostril. (This occurred in 2015) It ended well and nothing got worse, and may have slightly gotten better, but not enough. We were going to move on from there and try an implant or reduction of my right inferior turbinate (I am very apprehensive about reduction surgery). My new surgery was scheduled in May 2016 and Dr. Lupa left KP. This devastated me because I began to trust him because my trust was broken by Dr. Ann Richardson with my original surgery. Before he left, he recommended Dr. Victoria Epstein to see me and prosily treat me... so I contacted her.

Here are some xrays I had done prior to and after my surgery. The post xrays are only three weeks post surgery, so there may be some swelling. I'm trying to get an additional set taken for this year. Not all of the slices (from a CT scan) match up 100%, so it is kind of hard to determine what is going on here. However I just want to note that my right inferior turbinate (IT) is much larger pre-surgery and post surgery, in my opinion. The surgeon states she did a bilateral turbinate reduction where I believe she should have only performed the reduction on my right side.

how it happened

Always having a stuffy nose was the norm for me. I would use Allegra, Flownase, netti pot, I even was about to try shots for allergies. After many years of this, I ended up realizing that my right nostril was the side that was always larger than the other. Less air flow, always inflamed... very annoying. I even had x-rays taken of my airway that showed an inflamed larger right turbinate. (I'll upload them.) I ended up telling this to my general practitioner at Kaiser Permanente who then set up a consult with an ear, nose, throat surgeon.

The surgeon was Dr. Ann Richardson, who is now retired now, had a look in my nose stating that she would recommend a turbinate reduction and a septoplasty. I told her that my right side was the more inflamed side, showing most of my symptoms of congestion. I ended up having another consult with her before my surgery to make sure I knew everything that was going to happen to my nose. She was going to reshape my septum (apparently it was deviated) and perform a bilateral turbinate reduction. She said she would break some small bones to remove and reduce my turbinates... I didn't know the details.

My surgery was performed in August of 2012 in Folsom Kaiser Ambulatory Surgery. That morning I was getting ready, changing into my gown waiting for the nurse to give my further instructions. He said that plenty of people have this surgery and they feel relief after surgery. Great! I ended up reminding Dr. Richardson that my right side was clogged up the most and she said that she would do what is needed... Now, I understand that doctors have a better insight about how the body works, however I don't believe anyone knows their body better than themselves. Frankly I should have got up and walked out at that very moment...

Fast forward to about a week post surgery, I've just gotten my splints out and I'm breathing again! But there is something wrong. It doesn't feel right... I checked in the mirror with my flashlight. I was breathing great out of my left side, too much air in fact; where my right side was shut and very little air was passing through. I thought this is probably due to swelling, so I'll let the swelling go down and see the results in another week or two. It didn't change. Almost two years later, nothing is better, mostly worse. Maybe there was a mix-up of what side needed reducing... maybe she thought my right was her right when she was looking at me straight on. Regardless, I can't undo the surgery and now I'm suffering for it. It has changed me for sure.

Here are some symptoms I currently live with. I would like to point out that I had none of these symptoms pre-surgery. Please take these with a grain of salt, however these are very real symptoms for me. I still have my right side I can breath out of which curbs these symptoms, however my left is where the problems lie.

sensation of too much air flow in left nostril, inability to go to sleep or stay asleep when breathing through   left nostril, feelings of suffocation or lack of satisfying breathing through left nostril, extreme dryness in left nasal cavity, extreme anxiety due to lack of air flow sensation, increased heart rate due to anxiety, inability to focus due to increased focus on breathing, redness of eyes, slight loss of sense of smell when breathing of left nostril, sleep deprivation, irritability due to sleep deprivation, lack of concentration due to sleep deprivation, mood swings / depression due to sleep deprivation, thoughts of suicide due to lack of sleep, overall lack of a feelings of well-being.