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pamnandy
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Who says you have to be above 25%? Check around for a second opinion. Andy wore his bipap during the procedure, and he hadn't been tested for lung function for over a year. I don't understand why a stupid number would stop you from getting a PEG. Makes me mad and ready to make some calls and give someone the what-for!
hopingforcure
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Like Pam said I am just disturbed that you cannot get the peg. This make's Pam angry, they will not like Pam when she angry. She is such a dear person they should not make her angry. I am so sorry about this, can you maybe talk to someone else? Please keep us posted, we care about you.
BarryG
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I too hate to see Pam get angry. You should really push for the peg, when I had mine put in they had an anesthesiology team present to look after me because of my breathing problems when they tried it with a sedative so maybe that might work for you too. I hate to see someone who wants a peg not be able to get one.
rose
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Pat, this makes me so sad to read ~ and as others have stated, angry too! Plus, Glen just posted how a guy was at the hospital the same time he was there for a PEG, and the other guy opted to have it put in without sedation, only local,so, this leads me to think that sedation is not necessary.
You are such a dear, and I don't want this for you, unless its your choice as well.
You are such a dear, and I don't want this for you, unless its your choice as well.
trying to stay positive
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PDaddy, I am also sorry and angered to hear this. If you want a PEG you should be able to get one. It should be YOUR choice, not the Drs.
My suggestion would be to talk to the doc about wearing your bipap during the procedure and/or having an anesthesiologist present. If they refuse, I say get a second opinion. My thoughts and prayers are with you.
Didn't you just recently get your Bipap? How does your breathing seem to you?
My suggestion would be to talk to the doc about wearing your bipap during the procedure and/or having an anesthesiologist present. If they refuse, I say get a second opinion. My thoughts and prayers are with you.
Didn't you just recently get your Bipap? How does your breathing seem to you?
BethU
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Pat, please, please get a second opinion. With me, they had an anestheologist there who put me under for 5 minutes and snapped me right out. They wanted to avoid any sedation because of my heart, and have "complete control over my breathing," so there was no twilight sleep or slow waking.
You just got your BiPap, and I expect it will improve your FVC.
Sharonca had the PEG without anesthesia (not by choice, but she is here to tell the tale), and I've been told they can often do it with a local, as Rose said.
If you want it, please fight for it. I'll be praying that it works out, and that you gain strength with the BiPap.
You just got your BiPap, and I expect it will improve your FVC.
Sharonca had the PEG without anesthesia (not by choice, but she is here to tell the tale), and I've been told they can often do it with a local, as Rose said.
If you want it, please fight for it. I'll be praying that it works out, and that you gain strength with the BiPap.
GlenBrittle
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Pdaddy ,
Dont throw in the towel. Its only the second round.
You are on BiPap - can you last 15 mins without it ?
Propose this to your doc.
Start on Bipap
local spray the throat
local shot in the tummy
do the procedure
back on BiPap
There was a man before me that went without sedation.
Glen
Dont throw in the towel. Its only the second round.
You are on BiPap - can you last 15 mins without it ?
Propose this to your doc.
Start on Bipap
local spray the throat
local shot in the tummy
do the procedure
back on BiPap
There was a man before me that went without sedation.
Glen
thelma313
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Pat, this makes me angry too. Why wasn't your FVC checked more often? It should have been checked every 3 months. It looks like everyone is behind you to get a second opinion and fight for it. I am really hoping this works out and that you gain some strength with that BiPap.
pamnandy
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A different procedure
Please, look into an alternative procedure for placement. After re-reading your experiences, I realized that Andy had a totally different method of placement of his PEG.
Andy went to the Radiology Department at Hershey Medical Center. I wish he were here to tell you step by step what happened. He was awake for the whole thing. He kept his bipap on for the whole thing. They never put a scope down his throat. He had one thin tube inserted through his nose, so thin that his bipap nasal pillows never even had the seal broken. The purpose of the tube was to blow air into his stomach. (Of course he had a local for the next part, and he did have something intraveanously to take the "edge" off, but he was awake). Once they cut the "hole" for his tube, they then inserted something similar to a fish hook to find his stomach (using their radiology equipment stuff to guide them) and pull it over to the side of his belly, where they anchored it with the PEG. It was an outpatient procedure. He didn't feel a thing. I also remember him getting an MRI just before the procedure (again, he got to keep his bipap on, just used a longer tube). I was allowed to stay with him the whole time to give him the care he needed, until they took him for the actual procedure.
I think I found what the procedure is called: Entristar Skin-Level Gastrostomy Tube: Primary Placement with Radiologic Guidance in Patients with Amyotrophic Lateral Sclerosis Here is a quote from the article: "CONCLUSION: Radiologically guided insertion of the Entristar skin-level gastrostomy tube is a safe procedure in patients with ALS that allows the creation of a permanent feeding gastrostomy without the need for sedation or endoscopy."
Please, look into an alternative procedure for placement. After re-reading your experiences, I realized that Andy had a totally different method of placement of his PEG.
Andy went to the Radiology Department at Hershey Medical Center. I wish he were here to tell you step by step what happened. He was awake for the whole thing. He kept his bipap on for the whole thing. They never put a scope down his throat. He had one thin tube inserted through his nose, so thin that his bipap nasal pillows never even had the seal broken. The purpose of the tube was to blow air into his stomach. (Of course he had a local for the next part, and he did have something intraveanously to take the "edge" off, but he was awake). Once they cut the "hole" for his tube, they then inserted something similar to a fish hook to find his stomach (using their radiology equipment stuff to guide them) and pull it over to the side of his belly, where they anchored it with the PEG. It was an outpatient procedure. He didn't feel a thing. I also remember him getting an MRI just before the procedure (again, he got to keep his bipap on, just used a longer tube). I was allowed to stay with him the whole time to give him the care he needed, until they took him for the actual procedure.
I think I found what the procedure is called: Entristar Skin-Level Gastrostomy Tube: Primary Placement with Radiologic Guidance in Patients with Amyotrophic Lateral Sclerosis Here is a quote from the article: "CONCLUSION: Radiologically guided insertion of the Entristar skin-level gastrostomy tube is a safe procedure in patients with ALS that allows the creation of a permanent feeding gastrostomy without the need for sedation or endoscopy."
DgtofTNfan
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PDaddy I am so sorry to hear this has happened. Seems to me if you want a PEG it is a relatively routine procedure that could be worked out with some problem solving. If you want the PEG, I think a second opinion would definitely be the way to go. Please let us know how you are doing.
Dana
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