Old 11-27-2017, 12:30 AM #1 (permalink)
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Default PEG placement with FVC of 31?

So, my husband has just recently agreed to a PEG placement, and we are actually scheduled for it 12/5th. He has no problems chewing, swallowing or talking at the present time. However, his respiratory state has continued with a predictable decline. I have read here on the forum that PEG placement should be done before FVC is below 40.

Our neuro told us "they" / surgery will not allow the Trilogy into the O.R. Since this is usually considered a simple surgery, we were scheduled for it without an appt. to discuss this with the surgeon. I am thinking this is a bit odd; should I be asking to discuss this procedure with someone other than our neuro?

My husband Dave can only be off the Trilogy for 7-10 min. at a time. If it is true that the Trilogy will not be allowed in the OR, then maybe it is too late......?

TY for your input.
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Old 11-27-2017, 12:37 AM #2 (permalink)
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Default Re: PEG placement with FVC of 31?

that's sounding a bit sketchy. Ask them what will substitute for the vent.

You might also research RIG Guide to PEG - Oxford MND Centre
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Old 11-27-2017, 02:13 AM #3 (permalink)
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Default Re: PEG placement with FVC of 31?

No, you do not want this done in the OR, esp. by this team who sounds relatively ALS-naive.

As Greg points out, we recommend a RIG done in interventional radiology, where they should be comfortable with the Trilogy. His FVC is not a barrier based on published studies with FVCs down to 17%, where PALS did well. But it takes an IR who knows what s/he's doing, as procedural adjustments may need to be made, sometimes on the fly when things are anatomically not as expected, as can be the case in ALS.
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Old 11-27-2017, 10:45 AM #4 (permalink)
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Default Re: PEG placement with FVC of 31?

Have you been able to speak with the surgeon that is performing the procedure? When my PALS had his done, they took the Trilogy into the OR. At the time, he was only using it at night and it wasn't needed but they had it in case it was needed.

It sounds like your PALS is more dependent on it. Not allowing him to use it is not an option... Although with PEG, they do it like an endoscopy so....

I would definitely discuss with the surgeon, not my neuro and maybe go see someone about the RIG procedure instead?!
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Old 11-27-2017, 12:56 PM #5 (permalink)
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Default Re: PEG placement with FVC of 31?

Please do exactly what Laurie said. The best news is that he can still talk, chew and swallow right now so if the procedure has to be delayed, he won't dehydrate or lose much weight.
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Old 11-27-2017, 01:41 PM #6 (permalink)
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Default Re: PEG placement with FVC of 31?

Goodness me I wouldn't let them touch him if they don't realise why he needs his bipap.

Also he really should be having a RIG procedure at this point rather than PEG procedure which has been well pointed out already. Please know you have every right to discuss all procedures and options with all the team.
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Old 11-27-2017, 04:27 PM #7 (permalink)
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Default Re: PEG placement with FVC of 31?

I had the RIG procedure at Sunnybrook in Toronto. The problem with getting a PEG with compromised breathing is the issue of anesthetic. The RIG is done without anesthesia. It sounds scary but is no worse than a bad trip to the dentist. They can use benzodiazapines to relax you. It takes about 15 minutes start to finish. It hurts for a while after but nothing worse than a tooth ache. With breathing in the 30s I'd get it done soon. You'll wonder why you didn't get it sooner
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Old 11-27-2017, 08:42 PM #8 (permalink)
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Default Re: PEG placement with FVC of 31?

Thank you ALL!! What would I do without you ........ seriously!! So, I called the "nurse navigator" for our ALS team. She admitted she did not know what a RIG was and had to look it up. To say that totally shattered my confidence is an understatement. She said she would contact the Dept. of radiological intervention and speak to them. In the meantime, I also called there and left a message with the chief nurse to tell him our situation (that Dave is scheduled for the PEG but we would prefer the RIG ...... that it sounds safer due to Dave's respiratory limitations).

We want to get this done in the next 3-4 weeks if possible due to the continued respiratory decline (3% in 3 months, which I was told was slow) and also because we hope to go to FL for 2 months in Feb/March and don't want to risk traveling with an infection.

Vincent, "we" did not have it done sooner because Dave was not so sure he wanted one and because he does well with eating. However, as our neuro told him "you don't have to use it if you don't want to, but if you want one we need to get it done soon". I also think that because Dave is 70 they (the neuro/team) don't really advocate for any measures that prolong the inevitable. To be totally honest, I think Dave told them 2 years ago that he didn't think he wanted one.

Again, THANK you to all of you. The collective knowledge base of the individuals who contribute to this forum is nothing short of amazing!
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Old 11-28-2017, 03:26 PM #9 (permalink)
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Default Re: PEG placement with FVC of 31?

Wow keep us updated please!
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Old 11-28-2017, 06:01 PM #10 (permalink)
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Default Re: PEG placement with FVC of 31?

I wanted to make sure I was up to date on the literature around this, and spotted this recent paper.

It might be a resource for those of you confronting clueless-on-ALS gastros and surgeons, as it states unequivocally that PALS already on PAP ("NIV" in the paper) are considered high-risk regardless of FVC, and thus that they need machine access before, during and after the procedure. It also states that the procedure for these high-risk PALS requires "experienced operators" among this patient group.

So if you aren't going to have access to those things, but experience is available in your center's IR suite, that would be a clear indicator of where you should go, and vice versa.

At the end of the day, experience and access to PAP appear more important than RIG vs. PEG and so the papers favoring one or the other likely reflect those variables, since investigators who do a procedure more and better are likely to write it up.
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Old 11-29-2017, 12:22 AM #11 (permalink)
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Default Re: PEG placement with FVC of 31?

Thanks Laurie. I was thinking along similar lines - that the most important factor is access to either Dave's Trilogy or a "sterile" BiPap for use in the OR, as far more important than RIG vs. PEG. Secondly, experience in performing the procedure on an ALS patient.

I am not clear what you mean by ... "So if you aren't going to have access to those things, but experience is available in your center's IR suite, that would be a clear indicator of where you should go, and vice versa."? Would you please clarify? I think that you are stating that Trilogy/NIV support and a doctor experienced with performing the procedure on a PALS is far more important than which (PEG/RIG) is done?

Also, we were just offered the referral for the procedure, but we have not met with anyone (doc/nurse practitioner, etc.) from gastro. to discuss the situation for placement of the device. Is this ODD? Should we have an appt. with the performing surgeon before the procedure? I mean, if we get there and they say no Trilogy, then we are outta there!! This should be discussed with the surgeon on a prior visit, right? Anyone reading this who has had the PEG/RIG, what did you experience? Did you meet with the surgeon on a date prior to procedure?

I am losing faith in our "team".

TY!
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Old 11-29-2017, 09:31 AM #12 (permalink)
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Default Re: PEG placement with FVC of 31?

I met with the surgeon prior to the PEG , FVC 30, and discussed my bipap needs. I was comfortable with him because he does all the als patients from my clinic.

They had me bring my bipap but didn't use it in OR but put it on during recovery. Stayed overnight for observation because of my potential breathing issues.

All went well and within a week I was pain free and happy to hydrate properly using tube

My opinion is #1 thing is dr who knows als

And it seems odd to not have consult prior to procedure.
Best of luck to you, I was very nervous like you before having it done
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Old 11-29-2017, 12:15 PM #13 (permalink)
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Default Re: PEG placement with FVC of 31?

Yes, Buckhorn, sorry, you have what I meant exactly. That said, since a RIG is becoming the "done thing" owing to less invasiveness/cost, that most often would be a place to start.

And double yes, any team that did not have a consult as a matter of course, I would run far away. Maybe I could blame it on clueless staff up front, but if I asked and they did not deliver, adios!
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Old 12-01-2017, 12:05 AM #14 (permalink)
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Default Re: PEG placement with FVC of 31?

So, nothing to update at the moment. It is my "fault" as I have been busy with some appts. of my own and getting some things ready for Christmas. In all fairness, someone (I assume it was the ALS team "nurse navigator) from the medical center did call me twice yesterday, but the number was one that wouldn't receive return calls (Grrrrrrr!) and no message was left.

I have no doubt that our ALS team is overworked, as they are part of the area's premier HMO/critical care center, buttttttt - I am getting so d*mn frustrated by the slow response by these professionals regarding follow thru!

I plan on calling them tomorrow - repeatedly, and asking to at LEAST have the gastroenterologist who is performing the procedure call me back to answer a few questions (primarily Dave's Trilogy or presence of a BiPap machine in the OR)!

TY all.
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Old 12-01-2017, 10:00 PM #15 (permalink)
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Default Re: PEG placement with FVC of 31?

We met with the surgeon at his office and scheduled the surgery while we were there.
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