Is it too late?

[ctollar]

My father has been on the fence regarding a feeding tube for the last 4 months. He is no longer able to swallow any solid foods and has his second appointment with a surgeon to perform the surgery tomorrow. He has already been seen by one surgeon who does not specialize in ALS patients and been turned away as too risky.

He has thrush and because of the bulbar onset of his ALS cannot lay flat. He is very worried that this doctor will turn him away because of the thrush and his comprimised immune system. Is there any advice or any recommendations you can offer to have when we go to the doctor tomorrow????

 

[lgelb]

As you will read in other threads, we generally recommend that the tube be placed in interventional radiology, not surgery. He should use BiPAP during the procedure, which takes only a few minutes, and he can be positioned so his head is raised.

I'd listen to what the surgeon has to say, if s/he is interested in performing the procedure, and what the rationale is for whatever procedure is recommended, but it's kind of inescapable that a procedure under a general anesthetic, if that would be the proposal, is more risky and takes longer.

 

[KimT]

I would insist that the procedure is performed by way of interventional radiology. There is no need to endure the risk of general anesthesia.

 

[ctollar]

What is interventional radiology? Please excuse the questions as I am trying my best to honor his wishes and do whatever I can to help him.

 

[KimT]

It's a minimally invasive procedure whereby a tube is inserted in your nose so the doctor can see where to insert the tube. It takes less than 30 minutes. Here is a YouTube video of the procedure.

https://www.youtube.com/watch?v=lIhpoRxE9oY

 

[affected]

Please don't be put off asking questions, you are new to this and it's scary and there is so much to absorb. Does your dad attend a clinic? Can you talk to them about what is called a RIG - which is the same feeding tube but placed the way Kim described.

I'm so sorry your father has this diagnosis. Ask away!

 

[ctollar]

Please don't be put off asking questions, you are new to this and it's scary and there is so much to absorb. Does your dad attend a clinic? Can you talk to them about what is called a RIG - which is the same feeding tube but placed the way Kim described.

I'm so sorry your father has this diagnosis. Ask away!

Tomorrow is the appt. We don't know..he was diagnosised very late and just today put on a port ventilator and cough machine. He can no longer swallow at al.. the most devastating part is when he couldn't swallow his doughnuts dipped in coffee anymore..

 

[soonerwife]

I hope all goes well today.

My PALS had a PEG put in last September. I was terrified because his FVC was already in the 20s. He was able to lay flat at that time. I took his Trilogy with me but he didn't need to use it. The procedure went well and in a couple of days, he was feeling fine.

 

[ctollar]

So he has had the tube placed...friday.. in soo much pain was dehydrated and very weak...I am having good a hard time dealing with the generalized weakness. Is it from als or surgery? His right hand is extremely shaky.. never experienced that before.

 

[KimT]

Hard to tell what part is from the procedure and what part is ALS. If he was malnourished and dehydrated at the time of the procedure, I'm hoping having the tube will help relieve some of the discomfort, especially after the initial pain from the procedure goes away.

Is he on pain meds or anything to relax?

 

[affected]

If he was dehydrated and losing a lot of weight before the procedure then it is likely it will take longer for him to recover well, including pain and weakness.

However, if you can get lots of fluids into him and start increasing his nutrition, and you can give good pain relief, he should start to feel a lot better by the end of this week.

It's so hard to say about the hand shaking - it may be weakness and dehydration, it may be that there is more weakness there.

I'm really sorry, I'm not sure where he was up to in general with his progression before the procedure. I'm glad he has now had the peg done and you can concentrate on getting him hydrated and stop losing weight.

 

[ctollar]

Affected,
He has some weakness in his right hand but is still able to write and do other basic things. He was dehydrated and malnourished before the procedure. He says it's like he was in a haze for several weeks prior.

 

[soonerwife]

Glad the tube has been placed. Hopefully things will get better soon. If he is on pain meds, he will need something for constipation.

 

[KW1234]

I had mine placed last Thursday and am feeling great. I was aspirating water and becoming dehydrated. Now i just inject it in. Once I got home from the hospital i felt alot better. Having better hydration made a big difference.

 

[Twitcherama]

I had my tube put in about 2 months ago. I was very dehydrated leading up to it and in the same position – can't swallow. I was definitely sore for 3 or 4 days after and needed help doing the feedings. Since then, I've felt better and can handle everything myself. I hope you will see some improvement in your dad. Having consistent fluids and nutrition is very good.