Inspired to sleep
I had outpatient surgery last month. Nearly everyone I tell about the procedure is curious to know about the procedure itself as well as the results I'm hoping to experience. So if you, or someone you love, suffers from obstructive sleep apnea, this post is for you.
Obligatory disclaimer: Before we dig in, I know you know I’m not a doctor (but I gotta say it). Some of my details may be inaccurate. Please complete your own research and talk to your sleep specialist if you’re truly interested in this procedure.
Sleep and me - a short history
At best, I have a tepid relationship with sleep. I suffer from anxiety, which likes to spike when the moon rises, causing chronic insomnia (it's been a thing since my mid-twenties). And about two years ago, after spending a weekend with my college friends, I was informed that they suspected I have sleep apnea. A sleep study not long after proved this to be true.
In addition to anxiety, I seem to have a growing case of claustrophobia, which means I’ve been unable to tolerate the inevitable and ever-sexy CPAP device (I tried all the masks and all the settings). Besides not being able to handle having something over my mouth and nose with ease, the forced air from the CPAP would leave my mouth and throat so dried out that if I could fall asleep with the CPAP on, I would wake choking and in a panic.
Because of thyroid disease and celiac disease, I've been told by a long string of Western doctors and Eastern wellness practitioners that my body is in a constant state of inflammation. One of the symptoms of this inflammation is a never-ending case of congestion. It’s not an exaggeration when I say I cannot remember the last time I was able to fully breathe out of my nose. I believe the chronic congestion is the cause of that sleep apnea snore.
To get to the bottom of this congestion, I’ve explored many paths. There was the testing for environmental allergies (nope, none) as well as testing for food allergies and sensitivities (too many to name). As of this writing, I don’t eat gluten, dairy, and most of the time leave legumes and many other odds and ends alone. I faithfully use my neti pot each morning . I’ve gotten my nose addicted (then un-addicted) to that devil, Afrin, a nasal spray decongestant. Antihistamines and decongestants are with me wherever I go. The heat in the house is so low my husband and son are sometimes in the house wearing coats. I’ve had sinus surgery and have been to chiropractors, acupuncturists, and naturopaths. One summer I submitted to ten weeks of NAET treatments, a natural solution to alleviate allergies of all types and intensities using selective energy balancing, testing, and treatment procedures from a variety of disciplines (no success).
So, now what?
After returning my CPAP, for many months I was stuck on what my next intervention might be. In spring 2019, I was late-night Facebook scrolling when a post popped up on my screen from a neighbor looking for help with her husband’s CPAP mask. In the comments, someone posted something to the effect of “he should look into the Inspire.” I didn't know what the Inspire was then, but my next stop was a Google search.
What is Inspire?
My Google search turned up the information I was looking for, and here’s what the Inspire website says:
Inspire is the only FDA approved obstructive sleep apnea treatment that works inside your body to treat the root cause of sleep apnea with just the click of a button.
In simple language, Inspire is an implant that has been around since 2014. The device is implanted in the chest area on your right side. From the implant, an electrode is placed on your lung and another electrode is threaded alongside the nerves of your tongue. When you inhale, the lung electrode communicates with the Inspire device and the Inspire then sends a little electrical pulse up the electrode to your tongue telling your tongue to get out of the way so you can properly breathe. The implant is controlled by a remote. When you’re ready for bed, you set the remote to start the Inspire device for about an hour after you think you’ll be asleep - and ta-da! - your sleep apnea issues should be resolved.
The road to getting Inspire therapy
Finding out if you’re eligible for the Inspire device takes some time. I attended a talk about the implant after I researched it online. After that, I called the sleep specialist who spoke about the Inspire for an appointment. There are some requirements you have to meet to be eligible for the Inspire, including:
Having moderate to severe obstructive sleep apnea
Being unable to use or receive consistent benefit from CPAP
Not being significantly overweight
Being age 22 or older
Having met all the criteria, the sleep specialist ordered a new sleep study in winter 2020, which showed that I did still have moderate to severe apnea. Then it was a waiting game to see if my insurance would cover the implant. Most major US insurance companies will cover Inspire, and mine did (I have Aetna ... and I discovered on my explanation of benefits that the cost was in the $65k range before Aetna picked up the bill).
Not long after the sleep study, I met with the surgeon who would do the procedure, an ears, nose, and throat specialist. Only two surgeons in West Michigan, where I live, perform the surgery so there was a bit of a wait. I also had one last hoop to jump through before we would know if I was an ideal candidate for the device.
With sleep apnea, your airway closes one of two ways. It either completely collapses during sleep or the front and back of your airway come together, effectively closing your airway. To have the Inspire, the airway needs to close when the front and back come together, which mine does. But to discover how your airway closes requires a drug-induced sleep endoscopy.
When I got to the hospital for the endoscopy, I wasn’t totally prepared for what it entailed. If you don’t suffer from anxiety, this procedure probably won’t be a big deal for you. But, remember that anxiety and claustrophobia I previously mentioned? Well, I wish I’d have known that before the procedure and while still fully awake, I would not be allowed any anti-anxiety medication. The reason for this is because the surgeon can't have anything interfering with the results of the endoscopy, meaning nothing can suppress your breathing. And yes, before the actual endoscopy there was stuff jammed up my nose for way too long.
About an hour before the surgeon was ready to do the endoscopic study, he had me recline in my narrow outpatient hospital bed and aggressively shot Afrin up both nostrils, sending me into a choking fit, burning the back of my throat, and causing my eyes to cry real tears. He followed that up by soaking six-inch long swaths of cotton in lidocaine and jamming those up my nostrils. Then he disappeared for 45 minutes. And even though I wasn't supposed to have anti-anxiety meds, when I arrived at the hospital a nurse had mistakenly given me a low dose of Ativan. When the surgeon found out, he yelled at her. So, I only had enough Ativan to feel a little unfocused, but still highly anxious.
Anyway, sitting with the cotton up my nose while the surgeon put some tubes in someone’s ears (or something like that) was a lonnnnnngggggg 45 minutes. My eyes wept, I fidgeted and squirmed in my bed, my husband rubbed my feet, and I watched silly videos of puppies on my phone to distract myself. I tell you, friends, I am most grateful that COVID had not quite arrived in the States at that point and I did not need to have a mask on while I was in the hospital. If I had, I’m not sure how those 45 minutes would have gone.
I passed that final test and was scheduled to have the device implanted in March 2020.
COVID-19 and allergies
My March 2020 surgery date was rescheduled to August. After my sleep endoscopy, COVID-19 did indeed arrive in full force, but I mostly did not need a mask because I stayed home for weeks and weeks. When Michigan’s governor lifted the Stay Home, Stay Safe order and I began venturing out sporting my mask, I wanted to go straight back home because I had a ghastly time breathing with it on and it heightened my anxiety. My congestion was worse than ever and my husband gave up sleeping in the same bed with me because it caused my snoring to be even more ridiculous. In June 2020, I chose to have food allergy testing done to see if something else was up. I had suspicions.
Food allergy testing, unfortunately, turned up dairy and peanut allergies along with sensitivities to other foods. Already not consuming gluten because of the celiac, I kicked dairy and peanuts out of my diet causing hateful detox symptoms that lasted for about six weeks. By the end of those six weeks, my body felt traumatized, like it had been through a little too much. The idea of putting myself through surgery was overwhelming. Besides, I thought, maybe once my body settled down from the detoxing from dairy and peanuts, there was a chance my congestion would improve. I rescheduled my August date with the ENT to November 2020 and crossed my finger that maybe I wouldn’t need the Inspire after all.
But, nope. Still congested as ever all those weeks later, I sucked it up and went to my pre-surgical appointment and got the greenlight to have the Inspire device implanted the following week. I followed that appointment up a couple of days later with a drive-by COVID-19 test that literally took no more than 60 seconds.
On November 12, I was first in line for surgery that morning at Saint Mary’s Hospital in downtown Grand Rapids. Things went pretty quickly. I got out of my clothes, into a hospital gown, was covered in heated blankets, and suffered the unpleasantness of the IV. A string of medical staff came and went - the surgeon, surgical nurse, an Inspire representative, the anesthesiologist, more nurses. Fortunately, no one put anything in my nostrils and I did not cry. I was wheeled into the operating room around 7:00 am. The surgery was slated to last about three hours.
When I came to, I was back in my narrow outpatient bed and feeling mostly okay. Whatever IV painkillers I was given in the OR were still going strong. I dozed, but was wickedly uncomfortable in my small and sorry hospital bed. I wanted to go home right now, but had to wait until I was a little more with it. You can see from the photo below that I was bandaged up pretty well under my neck. The incision on my right chest was also covered. Most painful was the incision under my right breast right at my bra line - a mean place for an incision on a woman. Finally, Joe helped me dress, the nurse put my right arm in a sling that I was to wear for three days, and we were gone.
Here’s the thing. I had the good fortune of being able to truly rest for the next week. Given that I’m self-employed and had done a fair bit of work leading up to my procedure, I allowed myself almost a full week of complete rest. I wore the sling as instructed, but was still able to use my laptop and scroll on my phone. The sling was more of a reminder than anything to not lift my arm too far in an upward position. It also made sleeping at night more comfortable. I was given a prescription for Norco, but hate taking the stuff. I took half doses Norco combined with OTC pain relievers for about 24 hours, then the icky side effects set in and I switched over to only acetaphetamine (no ibuprofen or aspirin because of possible bleeding issues).
My surgery lasted about an hour longer than scheduled. The surgeon told Joe that the nerves at the root of my tongue were jumbled (I’m sure the doctor used a medical term, but whatever), making it harder for him to attach the electrode. In my follow-up appointment, I complained of a sore throat and aching ear (I felt as if I had a cold for the first couple of days of recovery), which I was told are common complaints among Inspire patients. Both hung around for a couple of weeks. I also had some incision discomfort, especially with the one under my breast. My neck and jawline puffed up pretty good and I still have swelling there four weeks later. A nurse friend of mine said she wasn’t surprised to hear about the swelling, especially since I have to eat and talk and turn my head. It’s hard for swelling to go down when you use that part of your body so much. She assured me it will go away.
If you ask me to rate my pain using the pain scale, it topped out at a four - and that was after the surgical drugs wore off. Using half doses of Norco in combination with acetaphetamine was fairly effective for me for the first 24 hours, as mentioned. I spent the entirety of the first four days hanging about in bed (I’m lucky in that I have an adjustable bed so it was the most comfortable place to be). The most discomfort I experienced during that week, besides the incision pain, was getting up out of bed. There was some pressure in my chest at my incision and that incision at my bra line made moving around uncomfortable, especially because the going-home instructions said to have on a sports bra most of the time (I'm a compliant patient so I had one on). When I returned to walking, the cold air on my neck incision hurt (still does) so I just make sure to zip up.
Over the past year, as I’ve gone through testing, then the procedure, nearly everyone I talk to is interested about the Inspire device, the surgery, and the implant’s efficacy. Below is a list of the questions that I've been asked the most. I’ll report back in the new year after I’ve been using the therapy for a couple of months. Here’s hoping my guy can return to our bed and that I will wake up headache-free and well rested.
Can you feel the Inspire device?
If I press on the area of the incision on my chest, I actually cannot feel the implant. However, this last week I’ve done a little more cardio and when my blood starts pumping, I can feel a weird pressure behind my chest incision where I imagine the device is located.
Is the Inspire helping with the snoring and sleep apnea?
The device isn’t yet live, so the answer is I don’t know. Your body needs some time to heal from the procedure. On December 17, 2020, I have an appointment with my sleep specialist and he will turn the device on for me. I believe there will be follow-up appointments and a sleep study at some point to see how the device is helping with the apnea. As I said above, I’ll let you know how it’s going with another post in the new year.
Does the Inspire run on a battery? If so, when does it need to be replaced?
Yes, the device does operate with a battery that will need to be swapped out for a new one in about ten years. This requires another (minor) surgical procedure to do so.
How big are your incisions?
I can’t see the incision at my bra line, but the ones under my jaw and on my chest are about 2.5 inches long. I was told to make sure I put sunscreen on so that the pigment of the scars doesn't burn. If that happens they will be more noticeable. If you are looking at me straight on, I don’t believe you will notice that I have a scar under my jaw. I’ve looked at pictures of patients who have had the surgery and in the photos the scars are hardly visible.
What are the risks of having the Inspire therapy implanted?
According to my surgeon and the Inspire website, in rare cases, you may experience tongue paresis and atrophy and your bottom lip could suffer nerve damage (I did not suffer any of these). The website says, ”Once the therapy is turned on, some patients may experience discomfort from stimulation, tongue abrasion, mouth dryness, and discomfort from the presence of the device. The majority of these events are resolved either on their own, with medication, or by adjusting the therapy settings.” I’ll let you know how it goes once my device is turned on. Oh, and you won’t be able to have an MRI of your right shoulder once you have the device implanted.
Can you have the device removed?
Yes, you can. It obviously requires an additional surgery. I am planning on my Inspire working so well that I won't even think about having it removed!