My personal experience with Inspire for Sleep Apneas

[rogelio]

The reason why I am writing about the Inspire device for sleep apnea is to put out more information than what you can find on the official Inspire website I am one of the persons who went on with the surgery to implant this device. I hope that my experience can inform those of you that are considering going through this procedure to solve your problems as sufferers of apnea.

My experience was terrible. After the surgery and the consequential all the outcomes publicized on the Inspire website, plus all the information my doctor provided me, were not fulfilled at all.

First, before the surgery, my doctor described the surgery. According to him, he was going to insert the device by making two incisions; one on the right side of my chest, the other in my throat under my chin. After I came out of the surgery, I realized that the “incision” in my throat wasn’t a simple “incision”, it was a radical deep cut of about 4.5 inches, which until today (four months after the surgery) has not healed completely and it still painful. You should notice that on the Inspire website they never show a picture or a video of the patient’s right side where the cut has been performed.

Second, the doctor told me that I was going to be able to recuperate from the surgery in about 4 to 6 days after the surgery. This is not the case. It took more than two weeks for me to be able to go to work due to the intense pain and discomfort I experienced. My neck was extremely swollen (I can provide you with pictures) for about 4 weeks, the inflammation hasn’t yet disappeared completely after 4 months since the surgery.

Third, one month after the surgery, the doctor activated the device. He told me that it was going to take about one month to get used to the electric impulse that moves my tongue forward to open the airway during the time I am sleeping. That day, I found out for the first time that this device does not work by sending an electric impulse when you are having an apnea, but rather it constantly fires the electric impulse during all the time you are sleeping or trying to sleep. By doing this, you have to subject yourself to a constant electric shock sent to the hypoglossal nerve which moves your tongue forward. This electric shock is painful and excruciating, it is literally a torture, you cannot sleep at all while Inspire is doing “its job”.

Fourth, I went back to my doctor to see what I could do in order to find out how we could solve these issues. After going through this very painful and expensive surgery, I didn’t want to give up, I wanted this to work for me, I was desperate. The doctor decided to adjust the setting by lowering the intensity of the electric shock. He told me that I should get used to this electric shock little by little and eventually I was going to be able to sleep with Inspire on. He also informed me that I had to increase the level of the intensity gradually (the device has 10 levels) all the way up to level 10, where level 10 is the only effective setting that makes the apneas less severe. I started with level one. After three weeks, I was able to reach level 3. At that point, I experience a severe symptom of vertigo that took me to the ER. Every doctor I saw at the ER thought that the reason for the vertigo was the use of this device. When I consulted with the doctor who implanted, he denied that there is a correlation between the use of Inspire and vertigo. At that point, I decided to stop using Inspire and wait until vertigo disappears. Three weeks after that, I used Inspire again; after three hours the vertigos came back. It was sad and disappointing that after going through all these suffering I had to give up using Inspire to solve my sleep apneas.

I am writing this in order to prevent you from going to the same experience I went to. Probably, for some people Inspire is a solution, despite all the pains that the surgery incites, but it would be nice to have more information before you decide this is a good solution for you. I would like to start a community of individuals who suffer from sleep apnea and are considering the Inspire implant or already have the implant. It is absolutely necessary to be informed before we do something so drastic. Like any business, I believe that the Inspire Company tries to promote this surgery, and they have the right to do it, but we as consumers have the responsibility to go further in finding the real effect that these claims related to our health have on our body and mind.

[D.H.]

I always suggest trying CPAP first. If the results are adverse, it can merely be discontinued!

With CPAP there is no surgery, no wound, and no incisions that need to heal. I've been using CPAP for over twenty years, and have traveled with it to 24 countries on five continents.

[chunkyfrog]

I am so sorry your experience was so bad.
Unfortunately, you are not alone, as surgical "solutions" are vastly over-represented.
It's not about the patient, but the profit. Marketing is valued more than surgical skill.
Cpap is still the best tolerated, non-invasive, and usually quite effective.
Some are cursed to learn the hard way.
Thank you for sharing.
Perhaps someone will be directed away from reckless cutting.

[Ograx]

I didn't have this surgery but I did have a septoplasty to correct a deviated septum with the goal being to improve my breathing and hopefully cure the sleep apnea.

The outcome was no change in my sleep apnea which was verified by a new sleep test. I am glad I did it however as I do breathe way better now and I got a free nosejob thrown in.

[sarahgise05]

I am so very sorry for this clearly terrible experience you’ve had! Thank you for sharing this clear, thorough explanation of your experience. It certainly has made me take a step back when considering this device, and I hope other people who are considering it will read this! Best of luck to you!

[LSAT]

Thanks for posting this...Hopefully anyone considering that procedure will see this and reconsider.

[Okie bipap]

Thank you for posting this. Unfortunately, the people behind such devices only tell the success stories, not the failures. They base their predicted recovery time on best case scenarios. It seems that a person with a high pain tolerance will do better with this treatment than one with a low pain threshold. It sounds like you weren't lied to prior to the surgery, you were just not told everything.

[Janknitz]

I met someone at the American Sleep Apnea Association meeting who has had good results with Inspire. It didn't convince me that was something I wanted to do, but she was someone who had severe cognitive impairment because of her apnea and while it improved on CPAP

The thing with ANY surgical intervention is that there are risks, and one of the risks is that it won't be successful.

[ChicagoGranny]

The reason why I am writing about the Inspire device for sleep apnea

Sorry for the bad experience. As others have said, bad results can happen with any surgery.

So, what are you doing now to treat your sleep apnea? You may know that CPAP is the gold standard treatment, and as far as many of us are concerned, cpaptalk.com is the gold standard support group.

I found out for the first time that this device does not work by sending an electric impulse when you are having an apnea, but rather it constantly fires the electric impulse during all the time you are sleeping or trying to sleep.

Just two technical points, if the electrical impulse were only triggered during the apnea, the apnea would still occur.

Secondly, there is no mechanism in the device that could detect when the airway is about to collapse or is in apnea. A CPAP or a home sleep study device would be required to measure the patency of the airway.

[jsmit86]

Sorry to hear of that bad experience.
The TV ads make it all seem easy. I quickly came to the conclusion that I would not want to do an invasive surgical solution, especially because CPAP is working well for me.

As a side note, I had briefly tried CPAP in the late 90's IIRC, with terrible results. I slept a bit better, but sadly my wife who has tinnitus could not tolerate the noise of the machine. I did not want to sleep in separate rooms, so perhaps foolishly, I blew off CPAP for many years.

In 2018 my wife nagged me into getting the sleep study again. This time it was at home. My snoring had gotten progressively worse, and of course I had OSA and CPAP was prescribed. I did some research on a couple of online forums, and got the advice to make sure it was an APAP with data. After reading several reviews I insisted on a Resmed Airsense 10 Autoset. I purchased from a local medical supply company, who worked with the Resmed rep to make sure that I had the correct unit.

While the first night was sort of weird, I did sleep. After the second night, I have never looked back. I also thanked my wife for forcing the issue.

As luck would have it, my son also was put on CPAP about 5 years ago. He ended up with some F&P unit. It was not great for him, and his wife also moved out of the room due to the noise. Once I got me Resmed unit, I shared my experience with him. He got the same Resmed unit, and uses it every day now.

Bottom line, while CPAP is perhaps a minor inconvenience, my health is dramatically better.
This may be more info than anyone wanted to hear, but I share so that someone who is apprehensive to start CPAP knows that the machines and masks have evolved dramatically. Stick with it, you won't regret it. IMHO, surgery should be a last resort. YMMV.

[amenite]

...
It sounds like you weren't lied to prior to the surgery, you were just not told everything.

Is there a difference?

[chunkyfrog]

Falsehood by omission. It is definitely a "thing".
Not technically a crime, but certainly not ethical.
Who wants to deal with an unethical surgeon--of all things?
Most surgical centers have written lists of complications, etc. on their permission statements.
It is the law. If you need help understanding it, ask.
It is their job to explain to anyone who asks.
If one needs an interpreter, they need to make arrangements beforehand.

[Duncan1]

Hi, there seems to be some confusion among patients about how Inspire works. I understand it works by stimulating the hypoglossal nerve each time you breathe, with a delay to it activating of 15 minutes so you can get to sleep first. However, some people on these boards are saying they thought it would only stimulate the nerve when you are having an apnea. Have some doctors been telling people it only shocks when you are having an apnea? Does anyone know where that story comes from?

[ChicagoGranny]

However, some people on these boards are saying they thought it would only stimulate the nerve when you are having an apnea.

There is no indication of that in this thread. The OP did not say a doctor had told him that. He said he only found out about "firing on every breath" after the surgery. He did not say a doctor told him it would only fire when an apnea occurs.

[yrnkrn]

rogelio, I hope you feel better!
Will you take out the Inspire or just keep it off?