They want me to have a PEG so soon after dx

[Scotiaspirit]

I was to the ALS clinic yesterday and they did my speech and swallowing study... it certainly was a bit shocking with the results. Other than some hoarseness, my voice is still fairly strong, my side to side motion of my tongue is still good and strong. My lip is still pretty good other than weakness on my left side of lip.
When they got me to do the swallowing part of study, they found my epiglottis is not closing properly, allowing liquids and particles down my windpipe, and my food is stalling at that location too. Whereas I have a very weak cough, and my muscles cannot organize a bolus of food correctly to swallow, they said it takes six contractions of my muscles to swallow, when it should be done in a single contraction. They are suggesting to me to have a PEG surgically implanted, sooner rather than later. I was just diagnosed in Nov 2015, I can still walk with a rollator walker, it was very surprising to both the medical staff and myself, that my swallowing muscles were deteriorated as much as they are. I did notice I have trouble swallowing breads, meat products, choking on pills once in a while, but had no idea, fluids were aspirating in my lungs.
The question sort of now, did I have ALS quite some time before being diagnosed, or is it advancing quickly?
I knew a PEG would likely be a reality at some point as the disease progresses, but did not expect one would be needed this soon after dx.

 

[patrick123]

I got my peg a year after diagnosis my FVC had gone down to 60% but I can still eat if I'm carefull. The primary reason I got the peg is two reasons. First my FVC, in most cases the won't do peg surgery if your FVC is 50% or below. Second at the same time they they implanted my Diaphragm Pacer.
Patrick

 

[BillH]

Scotia, as I recall from my Mom's experience, they wanted her to have the PEG installed while her physical self and health were still as strong as possible so she could heal more easily. Yes, in her case she had ALS before she was officially diagnoses.

I don't think it necessarily means you're progressing faster than expected. I think a lot of others here will tell you "the sooner the better". Like everything else in ALS, you can't predict your needs and progression so getting it before you need it is just smart.

 

[AnnMarie]

I had my PEG placed 3 months after diagnosis. I was still able to eat and drink some but wanted it placed while my breathing was still good

 

[gooseberry]

My husband was seen for the first time at clinic on a frida. The following Friday he had his peg put in....it is not so much the amount of time since diagnosis but rather the strength of your breathing and swallowing muscles. You will probably be encouraged to use it for nutrition fairly soon if you are aspirating . Aspiration causes pneumonia.

 

[lgelb]

Scotia, ALS progresses in different ways in different places. So needing a PEG this soon doesn't mean that everything is speeding up, or even that you've had ALS for too much longer than you remember.

It's recommended that feeding tubes be placed by interventional radiology rather than a surgeon, unless circumstances are unusual.

Best,
Laurie

 

[Scotiaspirit]

Thank you for sharing your replies, it makes me more at ease now, for some reason, I affiliated the PEG as a feeding tube was implanted at the late stage of disease. It is sure a learning curve in how this disease presents so differently for each individual.

 

[4tloml]

Scotia, my husband (PALS) just had his put in on Tuesday by an interventional radiologist and it went extremely well. He is still eating, but his last FVC was 55% (Feb), so doc felt it was important to get it in while anesthesia/pain medication wouldn't be a problem for him. He was also beginning to choke on his meds.

Everyone is different, but here's how it went for him: Doc ordered x-ray to determine anatomy (make sure there would be no surprises when planning placement). Then we showed up at the hospital with his own bipap with his own settings so it was ready to go as soon as he needed it. (No having to call in pulmonary and respiratory depts. with inherent delays.) I asked the doc if it was OK if I spent the night and she was very happy for me to do that.

Next, the anesthesiologist came in. My PALS was happy he was going to have general anesthesia and just sleep through it all, but at the last minute, the team decided it may be too difficult to get him off the vent if they went general, so they opted for local anesthesia and twilight sleep. By the time the doors were opened from the procedure room, he was already alert and talking with the radiologist.

After the procedure, he was kept in his own small room within recovery for most of the day and then transferred to a room in general surgery nursing. Pain med was given on request and ice packs kept available as well. Because of speech issues, I did the translating and that also allowed my guy to sleep more uninterrupted. He was kept on IV fluids throughout the entire stay.

The next morning, a nutritionist whom I'd spoken with the prior week, showed up to teach me how to flush and use the tube and keep it all clean. He was given pain meds for home (and has only needed 2 plus an occasional Tylenol) and after drinking a thickened juice, discharged.

I think it really helped to have read Diane H's "ALS From Both Sides" piece on PEGs as well as researched on this forum to know what to anticipate. I also think it helps to have someone who has done all that reading to be with you the entire stay, asking questions and making sure everything is followed up on as needed. Of course a good doc and nursing staff is who ultimately gets it done right. Hope you get a great one. And if/when you do have any questions, ask them and ask here. We're all in this together. The very best to you Scotia, and keep us posted.

 

[Scotiaspirit]

4tloml thank you for sharing your experience with me on your what you went through. It helps ease some of the fears I was feeling about having this done.

 

[Scotiaspirit]

I appreciate your reply about the peg stomach tube, and the chronology of what to expect. It has helped to ease some of the fears and apprehension I have been feeling. This disease can make a person feel so vulnerable.

 

[affected]

Scotia - my Chris resisted and resisted. He kept saying he would have the peg, but that HE would know when it was time.

He waited FAR too long. His digestive system was very slow, he had lost far too much weight, had been dehydrated for weeks.

He never adapted well to peg feeds, for various reasons.

Getting the peg early is always the best strategy!

 

[4tloml]

You are welcome, Scotia. I think fear and not knowing what to expect makes things harder, so glad to share my husband's experience. Others' here have been different, but I still think the more we know, the better. Hope if you decide to proceed, you'll do it early and you'll be in very competent hands. The best to you! --Cindy

 

[Scotiaspirit]

I am waiting to see a gastro surgeon and will be going forward with the PEG now rather than wait too long. I fear that I am slowly getting dehydrated as I cannot seem to get enough fluids into me when they are thickened, they cause me a feeling of fullness much too soon before I get enough liquids. Staying hydrated enough with thickened liquids Is a difficult chore for me. I think the PEG will bring me some relief of that. I see my neuro again a week from today and my GP later today. I appreciate everyones responses on this thread and it has helped me make my decision easier. Pending that I am a good candidate for the surgery, a PEG is in my near future plans.

 

[Scotiaspirit]

Laurie, I wanted to ask you about interventional radiology; for inserting pegs, it may be called something differently here in Canada, could you please advise me of what interventional radiology is?

 

[affected]

RIG - radiographically inserted gastrostomy

PEG - percutaneous endoscopic gastrostomy

So they are basically the same thing, but inserted differently