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patrick123

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Joined
Oct 4, 2012
Messages
442
Reason
PALS
Diagnosis
09/2012
Country
US
State
co
City
thornton
I just had my regular visit with ALS the clinic. It could have been better.setting up appointments for a feeding tube and a diaphragm pacing system. I need to have an EMG to see if I still have active nerve action to the diaphragm. If everything checks out on the positive side they will do both procedures at the same time. CU Hospital has to fly in a surgeon for the DSP. If anyone has some experience with this. Any advise would be a great help.

Patrick
 
@Patrick123:

There are plenty of PALS here that have gotten the PEG-tube and my guess would be that a very few have gotten the DPS. They might chime in on this thread with their experiences for both procedures.

Why would you (or they) want to do both procedures at the same time?
Is it safe to do both the same day?
What was your latest FVC value measured at the ALS Clinic? That's a very important parameter to take into account when you are going to undergo any surgical procedure that requires anesthesia.


Good luck to you.


Carlos
 
I think it is recommended to do both together if you choose to have the two Patrick if you do a search Tmasters posted quite abit about his DPS experience. You might try leaving him a visitor message as well although he does not come her as often as he used to.
Good luck
Nikki
 
My FVC was down to 70 but the sniff part or the cough part. (Forgot the tech. Term). It was down to 28. My Dr.advised that if both procedures are done its best to do them at the same time.
 
Patrick,
Sorry to hear of your situation. I'll chime in since I just had my DPS put in last week. The doc (great guy) asked if I wanted to do the PEG at the same time. My reply was "I had steak and ribs for dinner last night, so for now my chewing and swallowing are okay!"
I know at some point I will need the tube (I am bulbar), but I'd rather wait until it's really necessary. He's good with that.

The EMG prior to the DPS is a snap, not anything like the 'big' EMG for diagnosis. That one is the medical world's modern torture technique! The one you're about to have is for the phrenic nerve only, a few zaps on each side of the neck. In and out in no time, no sweat.

Surgery for the DPS went well, in on Thursday and out on Friday. I won't be playing any tackle football in the yard for a bit, but overall it was pretty easy. Three incisions, 5 wires and I'm ready to charge your iPad anytime, anywhere! I was out of work for a week and wouldn't have wanted to go back sooner. Pacing is a breeze, no pain and no hassle. Only short pole in the tent is trying to keep that sucker dry in the shower.
So far I'm oh-for-every time!

Holler if you have other questions, and good luck!
 
My husband had the DP and the PEG put in on June 13th, 2013. We had to stay at the hospital a couple of extra days due to a pneumothorax and the insertion of a chest tube to correct it. We are one month out & both of us believe his coughs & sneezes have strengthened. He doesn't really feel the Pacer when it's on anymore. Just a flutter! We go back to the ALS clinic at the end of the month for quarterly appt & they'll give us latest FVC #'s, tweak the DPS, etc.

I would recommend getting the PEG at the same time to save another trip to the hospital & one less time under anesthesia. We don't use his feeding tube yet. We flush it out once or twice a day w/ 30 mls of water.
 
Thanks for info guys. It really helps
 
Hi! I live in Loveland, CO and am interested in getting a DPS as well! Where is the surgeon from? Who is he? Do tell! I'm getting a feeding tube too and my Pulmo is going to talk to a rep from Biosomething about the DPS.
 
After alot of trial and error, we found that the Nexcare Tegaderm transparent dressing (4"x4") keeps the connector, connector holder on bandage & wires driest. An expensive fix since we're already using one of these to hold on the gauze over the wires for normal wear. I've seen online that some people don't bother to keep the D. Pacer connection area dry but not sure we're comfortable w/ that yet.
 
I go to the ALS clinic at university hosp. Dr Leuluck is heading up the DPS program there.
 
I would be happy to answer any questions. As Nikki said, I have a detailed thread here with my experiences. You can also check patientslikeme dot com for a thread. I'll Post here very often anymore due to difficulty typing. Good luck!
 
I had all my test today.and very sad to say that my phrenic nerve dos not work any longer the Dr. Could not pick up any activity. I guess the DSP is out. I was and still in a little shock but life will go on. There is alway tomarrow. And I don't give up.
Patrick
 
@patrick, I am sorry to hear that. I know what I let down that is for you. I was also looking into the DPS and found out this morning that he doctor that does it here will no longer be doing the DPS and is leaving the hospital. I do not know if I would have qualified for the DPS either since my breathing is so bad, but would have liked the chance to have tried.
 
I'm so sorry Patrick.
 
Update. My Dr. Wants to see me and consult with the surgeon that does the DPS. It has to be conference call to Calf. It turns out the sniff test (a bunch of X-rays on the diaphragm) showed it was working ok but not at 100 percent From what I understand they will check the nerve during surgery. And make the decission at that point. The surgeon that does the DPS has to fly in to Denver
 
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