[Treatment] Experiences with phrenic nerve (diaphram) pacemaker

[fstellab]

[font=Trebuchet MS]
Hi Folks,
I have a difficult case with mostly central sleep apnea events, ataxic breathing and some obstructive sleep apnea events. I have been dealing with this for over 10 years. During that time I have had over 20 sleep studies, and have used every variation of CPAP/BiPAP machine available and have worked with nine different doctors. For many years their therapies benefited me somewhat, but each year the apneas have been getting worse. The last 2 years have been most difficult due to Central Sleep Apnea. My current recommended therapy is an advanced BiPAP machine with AutoSV set at fairly high pressures. That therapy is not working for me due to its inability to pace my breathing correctly, constant mask leaks, the pain it causes and the difficulty I have using it.

I also have other medical issues that may contribute to the problem, directly or indirectly. I have Autonomic Neuropathy and this past year it has worsened. I don’t have feeling in my fingers or toes. I also suffer from chronic back pain, due to failed back surgery. I have an intrathecal pain pump, but the dosage is limited because the doctors claim that it is causing my ataxic breathing.

I have exhausted all the normal therapies, my Doctors do not know about, or they don’t want to work with any of the new therapies. Also, my sleep doctors are specialists, and refuse to consider my other medical issues which make the common therapies difficult.

I think I found one solution, use a diaphragm pacemaker. Pacemakers for Diaphragm Paralysis have been used for many years with quadriplegia patients, recently some of the companies have received FDA approval to use the Diaphragm pacemakers for Central Sleep apnea patients. I have been looking at the pacemaker from a company called AVERY Biomedical Devices. Their Mark IV pacemaker now has FDA approval for Central sleep apnea. It seems like an ideal solution for my situation.

I am looking for people who have experience with this therapy and a physician who is on the leading edge sleep research, someone gets excited about sleep research, who would consider the pacemaker and other treatments.

Any help would be greatly appreciated.

-Very Sleepy Fred

[Peter_C]

Welcome to the forum. You do not give a location - at least give us the state and/or country you call home? I can't offer any help myself, but do know others will be reading this thread shortly.

[me50]

my first thoughts are what has your doc(s) done as an alternative to the pain pump? As far as the neuropathy goes, I have seen recently where there is a treatment that is noninvasive and no medication (more homeopathic maybe).

I feel for you having back surgery as it is known that rarely is back surgery successful and in only a small % even necessary (I have no clue to the nature of your back surgery but only speaking what the medical profession states as fact). A high school friend of mine lost their dad to a botched back surgery.

Back to the topic at hand. Your docs may be correct about the pump causing problems with your breathing. That is why hospital patients are watched so closely when they are on morphine, etc. (or they are supposed to be watched closely).

This is just my opinion and what I would do if it were me: I would not have an invasive procedure, especially one that has not been tested thoroughly for the condition in which you are going to be using it, until all other avenues have been exhausted.

Heart pacemakers have come a long, long way since I first began working for a company that made these pacemakers back in the late 70's, early 80's. They have been a life saver to many people. For me, I would try acupuncture, meditation, etc., to reduce the pain and amount of pain medication you are taking. (are you using this pain pump for your back problem or neuropathy or both)?

As far as this pacemaker that you are speaking of, I would be researching reputable sites regarding this product, trying to speak with patients that have the pacemaker, etc. There may be a forum for that online that you can check for.

I AM NOT A DOCTOR AND AM ONLY STATING MY THOUGHTS, which may or may not be right for you. There are members here that have medical issues that require pain medication that may be able to offer you some thoughts and suggestions.

If I think of other things, I will post them. I am sure there are members that can be of better assistance than I am.

[trish6hundred]

Hi fstellab,
WELCOME! to the forum.!
I'm not familiar with the phrenic nerve (diaphram) pacemaker. I'm sorry to hear that CPAP therapy isn't working very well for you so far.
Hang in there for more suggestions and much success to you.

[fstellab]

my first thoughts are what has your doc(s) done as an alternative to the pain pump? As far as the neuropathy goes, I have seen recently where there is a treatment that is noninvasive and no medication (more homeopathic maybe).

I feel for you having back surgery as it is known that rarely is back surgery successful and in only a small % even necessary (I have no clue to the nature of your back surgery but only speaking what the medical profession states as fact). A high school friend of mine lost their dad to a botched back surgery.

Back to the topic at hand. Your docs may be correct about the pump causing problems with your breathing. That is why hospital patients are watched so closely when they are on morphine, etc. (or they are supposed to be watched closely).

This is just my opinion and what I would do if it were me: I would not have an invasive procedure, especially one that has not been tested thoroughly for the condition in which you are going to be using it, until all other avenues have been exhausted.

Heart pacemakers have come a long, long way since I first began working for a company that made these pacemakers back in the late 70's, early 80's. They have been a life saver to many people. For me, I would try acupuncture, meditation, etc., to reduce the pain and amount of pain medication you are taking. (are you using this pain pump for your back problem or neuropathy or both)?

As far as this pacemaker that you are speaking of, I would be researching reputable sites regarding this product, trying to speak with patients that have the pacemaker, etc. There may be a forum for that online that you can check for.

I AM NOT A DOCTOR AND AM ONLY STATING MY THOUGHTS, which may or may not be right for you. There are members here that have medical issues that require pain medication that may be able to offer you some thoughts and suggestions.

If I think of other things, I will post them. I am sure there are members that can be of better assistance than I am.

Hi Folks,
I am Looking at the Mark IV pacemaker by AVERY Biomedical. This phrenic nerve stimulator, also called a diaphragm pacemaker has been in use for 15 years for patients with quadriplegia, and diaphragm paralysis. Avery has obtained approval for using the Mark iV for Central Sleep Apnea. It Is the same device its just used differently.

I have having difficulty finding a sleep doctor who knows about the device and a thoracic surgeon who knows about sleep disorders. I also think that there is so much money being made with CPAP/BiPAP no sleep professional is really looking for other solutions.

I will be flying to NY shorty to meet with a Professor of Clinical Medicine in the Columbia University Cardiopulmonary Sleep and Ventilatory Disorders Center. This Professor has a reputation for being "on fire" about sleep disorders.

I will let everyone what he has to say.

Cheers
-Fred

[me50]

http://www.apneaboard.com/forums/Thread-...th-Provent

It would not be the first time that the FDA approved something too soon. It has happened over and over again (check out the link above).

At any rate, I hope that you find the answers you are looking for when you go to NY and maybe that doc will have more answers for you. Central Apnea is not an issue with the diaphragm but one that the brain forgets to tell the person to breathe (in simple terms); at least that is how I understand it. Makes me wonder how this pacemaker can help with CA but I haven't researched it. You didn't mention that it would assist with OSA and you said you have mixed apnea even if the OSA is not too many. OSA, even a few per hour, etc., can cause heart conditions or worse. I would suggest making a list of questions that you may have and go to someone that works for the manufacturer to see how this device would assist with OSA. Fixing part of a medical problem and not doing anything for another medical problem isn't a great idea. Just my opinion.

I wonder if this would help CF and MS patients.

Personally, I don't think there is a lot of money to be had except from the manufacturers and the DME who are those that get repeat business. The sleep doc and the sleep lab has to work to keep new patients coming in to them when there are a lot of sleep labs/competition and now with the home sleep studies, they have to work even harder.

This year, our insurance company prefers home sleep studies and will not require a copay for that but if we were to go to a stand alone sleep lab, the copay is a lot of money.

Let us know what you find out. Have a safe trip

[archangle]

Do some research on EERS (enhanced expiratory rebreathing space). It is fairly simple.

BTW, I do not recommend trying it without the aid of a doctor, and being careful even then that the doctor knows what he's doing. It's important to be sure you have an exhaust vent at the correct point in the air path.

Basically, it's an arrangement where you increase the dead air space and causes you to rebreathe more of your own exhaled CO2. Increased CO2 leads to a stronger respiratory drive.

[quiescence at last]

@fstellab - your condition is intriguing. I can see why you are heading the route you are, and hope the discussion with the NY doc results in new treatment options including the breathing pace controller. After a little digging, it does look like you are hunting for a real solution to (1) ataxia, and (2) central apnea, and that the obstructive events can either be treated with traditional treatment perhaps on much lower pressure (once the other situation is resolved). Just the brief review of online sources for ataxia indicate your issue seems to be related to the central nervous system, and brain related issues.

Q: You mentioned neuropathy. Do you also battle blood glucose level, ie. diabetic or insulin resistance?

Q: Do you have trouble autonomously breathing while you are awake?

I am guessing there won't be too many here or in the general population that have the severe conditions you've described.

Good luck, I will be anxious to here how things progress.

[fstellab]

Hi Folks,

Here is answers to questions/ comments:

>> Q: You mentioned neuropathy. Do you also >> battle blood glucose level, ie. diabetic or insulin resistance?

I am a type 2 diabetic, taking a small amount jamunet (1/2 pill a day). My A1C levels are in normal range (5.5) and have been for years. My neuropathy is pretty bad, my finger tips, toes and the bottom of my feet are numb.

>> Q: Do you have trouble autonomously breathing while you are awake?

Not usually, but when I am unusually tired I catch myself not breathing, but this is very rare.

>> 1) ataxia, and (2) central apnea, and that the obstructive events can either be treated with traditional treatment perhaps on much lower pressure (once the other situation is resolved.

I understand this, and have used traditional treatments in the past with some success. But each year they became less effective. Around April of this year I was told to stop using the AutoSV BiPAP machine temporary for a sleep study. I found that I felt better without it, it was such a relief not using the BiPAP AutoSV! Given the added pain and the difficulty using the BiPAP I decided I needed to find something else.

I am not a Doctor so I could be way off on this, but I know my body. I think part of the problem is that the AutoSV cannot keep up with my changing breathing patterns. I like the pacemaker because it does not try to figure out you breathing pattern, it just paces it. I don't understand how an AutoSV machine can help with Ataxic breathing, doesn't "Ataxic" mean changing by definition ?

It has been a very long time since I have had a good day. My cognitive impairments are getting so bad I have to do something.

Thanks again,

-Fred

[fstellab]

Hi Folks,

While doing research I found this company that is going into clinical trial for a medications specifically developed for Sleep Apnea and related breathing-control disorders:

www.galleonpharma.com/

I think it is ok to post the link, they don't sell anything yet.

This was a real find for me, I am going to try to get into to on of their clinical trials.

Cheers
-Fred