Bipap is outdated

[FightingAttorney10]

In my opinion, and based upon the opinion of world renowned ALS breathing specialists, Bipap is outdated for the treatment for breathing problems associated with ALS. Instead of using Bipap, ALS patient's should be placed on regular ventilator(volume controlled) rather than bipap(pressure controlled) if they are having substantial breathing problems. A regular ventilator such as the top of the line Trilogy 200 or LTV 1200 can be used in volume forced mode with a Bipap apparatus, thus you are gaining the full force of a ventilator but noninvasively. Additionally, any method of ventilation besides for invasive ventilation is very hard to use in severe bulbar patient's because saliva, phlegm, etc will drip down the throat and make it very hard to obtain appropriate 02 levels even with aggressive cough assist usage.

 

[Jeff Long]

... based upon the opinion of world renowned ALS breathing specialists, Bipap is outdated for the treatment for breathing problems associated with ALS.

Can you tell us who these "world renowned" doctors are? And maybe point us to their published and (preferably) peer-reviewed research articles making this claim?

 

[Bad Balance]

An unlimited budget is so nice to have...
Does Medicare cover these costs?

 

[FightingAttorney10]

The world renowned doctor is Doctor Jonathan Bach, in Newark New Jersey who I have personally seen on many occasions. He would never recommend Bipap unless being used for sleeping purposes only, if that. He is an expert with non- invasive ventilation and has many ALS patient's at 20-30 years plus into the disease, and he is who manages my affairs. He can manage a non bulbar patient down to an FVC of 0, that is right 0, so long as peak flow cough exceeds 160ml. I try to provide useful information, not just spout BS.

 

[FightingAttorney10]

@BadBalance, I am not sure if Dr. Bach takes Medicare, however he does take most major insurance plans. Unfortunately, surviving any disease does require a lot of money, and especially this one. I myself do not have an "unlimited budget" but I am in a very good financial position so to speak. Even if Doctor Bach does not take Medicare, I advise that you should speak to your clinic in which you attend, and suggest his work, and simply ask why you are not being managed correctly. I would call Dr. Bach to see if he does indeed accept Medicare, I am one of his private patient's, however, he treats all with compassion, dignity, and respect that you do not see much of in this industry.

 

[Jeff Long]

Kristopher,
Couple of points...
- First of all, hyperbole is great for fiction, but when you're trying to convey (or imply?) facts it is usually counterproductive. You said "world renowned ALS breathing specialists" which implies more than the one you provided. How about saying "The doctor I see"... not as dramatic but a lot more truthful.
- I checked out your link, which is a fine 'buy his books' commercial for the good doctor, set up by an admirer of his work. He's clearly a smart, professional guy though.
- Try as I might, I couldn't find the part where he says "Bipap is outdated." One of his papers actually contradicts that statement, which I realize was made by you but attributed to him. I cynically believe it is so everyone will validate your 'vent is best' philosophy.
- His writings clearly indicate he does much work in respiratory care for many conditions; however, there is one (as in singular, uno) writing specific to ALS. I'm not sure that passes the litmus test for crowning him a "world renowned ALS breathing specialist." Again, your enthusiasm for what he is doing for you gets the better of you.

So, here are a few comments I read in the good doctor's own words concerning NPPV:
"In summary, NPPV and TPPV are not mutually exclusive approaches."
"Noninvasive aids should not be considered extraordinary or heroic measures. Most ALS patients can benefit from their use before requiring tracheotomy." -- So, why would he say they are beneficial AND, per your claim, outdated?

This guy might be the Jonas Salk of the ALS research world... someday. But today isn't it.

 

[FightingAttorney10]

Jeff, you are incorrect as I see him personally, and you can believe whatever you will. He is the best of the best, period. Yes he uses NIVV, but he uses it connected to a ventilator instead of using pressure cycled Bipaps. Thus, maybe you should read about him a little more in depth and detail, and should have focused on my point that non invasive ventilation is what he prefers but using volume cycled ventilators and not pressure cycled bipaps. Would you like me to email you a statement sent to me about why a bipap is outdated directly from him, and how "ALS SPECIALISTS" are mismanaging patient's. You seem to want to challenge me, and that is fine, but do not do a disservice to this community by coming off as I did yesterday. For your information Jeff, he does not want me to switch to invasive ventilation, and I am doing it at my own choice. Furthermore, I provided a link to the most anti vent pulmonologist in the world. He is the master of non-invasive ventilation, and I will be glad to provide others who have the same opinions as him. The bottom line is there are two types of non invasive ventilation, well really about 5, but I will talk about two for arguments sake. #1 NIVV using traditional Bipap which is pressure controlled, and # NIVV using an actual ventilator in forced volume cycle mode to achieve the full effect of a ventilator without going invasive. This is how I have been managed. He passes the Litmus test for sure, when he has several patient's at 20 years plus with the disease that I personally know. I have been to probably 30 Pulmos over the years, and he is by far the only one who knew how to manage my condition, thus in my opinion he is the best of the best. Let me know if you would like his email sent to me from a few months back, taking about how BIPAP is inappropriate. You need to read between the lines yourself a bit and not think your going to down talk me.

 

[FightingAttorney10]

Jeff, I never said he was an ALS researcher just about the best pulmonologist in the world, and well that is my opinion but a fact to many. He worked with the late Christopher Reeves and tried to convince him to switch to noninvasive ventilation, but Mr. Reeves was very accepting of his trache. Doctor Bach has kept many ALS patient's alive and well through the use of noninvasive ventilation means for 10 years by using his methods before switching to LTMV. If your happy with how your being managed that is fine, but I am sure some are not.

 

[Jeff Long]

Kristopher,
I don't need to talk down to you, nor do I need the email. And yes, I am aware of the pressure- and volume-type NPPV devices.
The link you provided is an info-mercial at best, a web page created by a fan of the good doctor.
In another thread you gave this same "bipap is outdated" speech to a newly diagnosed patient whose doctor recommended it to them; I'm sure that was helpful to them in their time of anxiety. Again, you may be 'all in' for your doctor's treatment methods for you, but don't make the assumption that they are right for everyone else. That you claim to know, based on your doctor's beliefs, more than the neurologists everyone else sees is ludicrous at best.
And the day I "come off" as you did yesterday will be my last day on this, or any other, forum.
Gotta go... the porch, a cold beer and a good cigar are waiting.

 

[FightingAttorney10]

Jeff, you enjoy that cold beer and that cigar, some of us are not so fortunate. Thus, you do come off as a bit of a sarcastic ***. I told the lady in the other thread that a Bipap pressure cycled is not optimum because it simply is not, and stated it was merely my opinion. If that gives her anxiety, than she has some serious issues. Most Neurologists DO NOT know how to manage breathing problems associated with this disease, and that is MY OPINION that I am allowed to have. If people want subpar care fine for them, but it sure is not fine for me.

 

[kiwisally]

FA, once you stopped referring to the doc as "Doctor Jonathan Bach, in Newark, New Jersey" (a vet in Newark btw) and started using his proper name it was easy enough to find the link and read. I came to the same conclusions about him as Jeff did. I also read the journal articles.
If John R. Boch is "about the best pulmonologist in the world" why in the world wouldn't you take his advise about invasive venting?

 

[FightingAttorney10]

@Kiwisally, I have used and taken his advice, but it is a personal choice for me. You see, I go to court on a regular basis, and prefer a trache for the reason of being able to hide it under my suit, etc. Plus, my assistant can suction it for me, and with proper methods it does not have to even be done through the stoma. I cannot speak well with noninvasive ventilation, and with a trache and speaking valve I will have no problem. Furthermore, I want to put the fatal aspect of the disease to the ground. Doctor Bach respects this decision of mine as he is a true professional and does not label ALS patient's as another terminal statistic. I am not one who sits around and thinks Doctor's are God, including Mr. Bach. Doctor's are only as good as you as a patient make them. The same goes for lawyer's and well I am very good at what I do, read about me sometime If everyone wants to naively believe that every "ALS SPECIALIST" or neuro knows how to manage this disease, they are quite clearly mistaken. If you do indeed have ALS and are not one on here who is simply a cyberchondriac you need to wake up and fast. I could not believe your ill informed comments about invasive ventilation that I read yesterday, you have to suction the mucous, gross. Well, if suctioning mucous is so gross to you that you would rather die way before your time than good for you. Some of us value living too much for that.

 

[lgelb]

I believe there is some confusion about the identity of the doc mentioned in this thread. This is his clinic page @ UMDNJ,
Meet the Staff: The Center for Noninvasive Mechanical Ventilation Alternatives and Pulmonary Rehabilitation at The University Hospital, Newark, NJ

There are a number of conflations in this discussion. Any mechanical ventilation, BiPAP or other, should address what the patient needs in terms of:
Backup or other means of assuring RR and how implemented
Pressure support, if /as applicable (IPAP minus EPAP), fixed or variable
Pressure vs. volume support, or both
Variability of pressure/volume support provided and if both, which is primary
If/how the airway, if needed, is stented/kept patent via EPAP

The optimal solution may change as the pt progresses. For example, most limb-onset pts ultimately develop bulbar sx. And the PCF referenced above is out of reach for many MND pts, regardless of onset. In short, FVC is not the only or best measure of respiratory function/prognosis and most pts are long gone before an FVC of 0. Secretions, infections and/or and aspiration are more often the final chapter than FVC per se.

 

[kiwisally]

@Kiwisally, it is a personal choice for me. I am very good at what I do, read about me sometime I could not believe your ill informed comments about invasive ventilation that I read yesterday.

So you and you alone are able to take advice from a doc and apply your personal circumstance to it and make the best decision for you personally. Got it, too right. Now afford the rest of us the same right.

No need to read up on you. I've seen more than enough here, wouldn't trust you with my dog's toenail cuts. Attention to detail, clear and logical thinking, the ability to express oneself, not evident, sorry.

Exactly what couldn't you believe that I said. No one can follow your random insults, you need to learn how to use the form and quote.

And for goodness sake get your terminology right if you are going to bang on about it. It's not a BiPAP you think is outdated it's a BPAP.

 

[Clearwater AL]

kiwisally, just a suggestion... add some substance to your bio. Per - City 00, State 00, 00, Diagnosed 00/0000 and Forum Interest 0000 kinda leaves you lacking. Again, just a suggestion for when you call others out on something.