Status
Not open for further replies.

dbw

Active member
Joined
Aug 26, 2007
Messages
33
Reason
CALS
Diagnosis
07/2007
Country
US
State
California
City
Oceanside
I took my Father to have the PEG tube inserted this morning. After around 40 minutes in the OR, the interventional radiologist came out and told me that he failed to insert the tube. He suggested that we see a GI doctor and get the feeding tube inserted through gastroscopy or through surgery. I would like to know if anyone else had similar experience. My worry about the gastroscopy is the possibility of damage the already fragile muscles involved in swallowing and the weak neck. Please advise!

Thanks!

DB
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi DB. I see the reason for your concern! I don't have experience in this regard but I saw your post has not been noticed yet by those who do so I wanted to encourage you to hang in.
 

Carolan

Active member
Joined
May 17, 2007
Messages
93
Reason
CALS
Country
US
State
TX
City
Dallas
Hi DB,

I don't have much advice except that it would be good for you to at least consult a GI to find out your options. I'm sure that the doctor will be able to address your concerns.

Was there a doctor involved with the initial PEG tube placement attempt? I know that my mom's PEG was done by a surgeon, but it was a really quick and easy procedure. There was also an anesthesiologist, but I don't think she was put under general anesthesia.

Good luck!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I'd have to say this is the first failure I've heard about. Had this Doc ever done one on an ALS patient before? You should use a Doc with experience.
AL.
 

dbw

Active member
Joined
Aug 26, 2007
Messages
33
Reason
CALS
Diagnosis
07/2007
Country
US
State
California
City
Oceanside
Thanks for all the response! The doctor (interventional radiologist) is very experienced. I didn't ask if he had done this on ALS patient before. We definitely will see a GI doctor. But it is always risk for ALS patient to do a gastroscopy. Have you heard of any ALS patients done the gastoscopy?

Carolan, how was the recovery time for your mom from the PEG surgery? Was it pretty quick? The radiology doctor also mentioned that surgery is another option. But it is more invasive than all the other approaches, which means longer recovery time. Personally, I think surgery may be a better option at least for my father, because his neck muscles are his weakest point not the abdominal muscles.
 

Jane

Distinguished member
Joined
Feb 7, 2004
Messages
168
Reason
Lost a loved one
Country
CA
State
ON
City
St Catharines
peg failure

Hello DWB, When you say gastrosmony (spelling?) do you mean insertion of the peg by going down the throat?
If so, my sister had her peg inserted that way. She had no problems, took about 10 minutes, no general anesthetic, just freezing of the throat (she felt this was the hardest part), we left the hospital about 30 minutes after procedure was done.
No problems with infection, some pain for about 10 days until the end of the tube in the stomach softened up. She took antibotic and pain meds for about 10 days. No apparent damage to already weak throat muscles.
The tube worked well for about 15 months until her passing.
Hope this is of some help.
Jane
 

dbw

Active member
Joined
Aug 26, 2007
Messages
33
Reason
CALS
Diagnosis
07/2007
Country
US
State
California
City
Oceanside
Jane, that is exactly what I mean. Gastroscopy is going through the throat to the stomach. Thanks for sharing the experience.
 

MamaSara6

Member
Joined
Apr 3, 2007
Messages
24
Reason
Loved one DX
Country
US
State
GA
City
Alpharetta
I started to say that my mom had the Gastoscopy, but now I think she was just intubated. I honestly can't remember, but she did have a very sore throat for several days from whatever they put down her throat. The procedure, done by a GI, took much longer than the 15 mins. they had said it would. There was a lot of pain at the PEG site, too. More than we expected.

That stinks that they didn't get it in your Dad the first time! I hope he's not too uncomfortable from the attempt and he does okay the next time around.
 

dbw

Active member
Joined
Aug 26, 2007
Messages
33
Reason
CALS
Diagnosis
07/2007
Country
US
State
California
City
Oceanside
Quick update, after went to see a general surgeon and did a CT scan. We decided to go back to the original interventional radiologist. He gave another try about a month ago. This time it worked out fine.

Thanks for all the support and information.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Dbw. Thanks for letting us know.
AL.
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
I'm so glad everything worked out this time, dbw. Your poor Father. I think it took courage to return to the original interventional radiologist.
My bulbar-onset PALS husband had a PEG tube inserted by gastroscopy this past Friday (the 13th!) performed by an assistant professor of medicine in gastroenterology and hepatology. My husband was placed under conscious sedation and during the procedure, which took over an hour, my PALS had a laryngospasm which was terrifying for him and for the staff present.
Luckily, the placement was successful and he was in recovery for over an hour.
We live 55 miles from the hospital where the PEG was placed and three miles from home my husband asked me to pull over. He was very pale and diaphoretic. He was light-headed and could hardly sit up and was experiencing intense pain in his back and abdomen. I urged him to take slow deep breaths and he began to come around.
We made it home and got him to bed after giving him the recommended Tylenol for pain, but a couple of hours later when he got up to urinate, he found that the effort of standing while trying to initiate urination caused a recurrence of the symptoms he experienced on the trip home. I managed to get him to bed and took his vital signs. His blood pressure was 96/54, pulse was 68, resp. 28, and temp. 97.0. The blood pressure is typical for him as is the temp.
I called the hospital where the procedure had been performed and asked if he could be prescribed something for relaxation and pain. They said to give him Tylenol. I told them I already had and they said if I'm really concerned, to take him to our local ER. By the time I was off the phone, my husband's symptoms had subsided. He slept again and awoke a couple of hours later.
But then an hour after getting up he experienced another episode. This time his BP was 68/38! I called 911 and he was transported to our local ER. I explained to the ER doctor that my husband has ALS and that he had had a PEG tube inserted that morning. Did he (the Dr.) think that because of the ALS and the neurons being compromised that the muscles in his abdomen were going into spasms due to the assault of the PEG insertion? The Dr. seemed to think this was very likely and gave him Valium 5 mg. Additionally, he prescribed Valium 5mg. to be given every eight hours for one week.
The Valium helped and each day he's a little less sore in the abdomen. (However, now he's experiencing intense pain in his hips! You never know with ALS!)

All the best to you, your Father, and your family. I hope everything works out for you. Thanks for the update and keep us posted.
Jane
 

dbw

Active member
Joined
Aug 26, 2007
Messages
33
Reason
CALS
Diagnosis
07/2007
Country
US
State
California
City
Oceanside
Jane, thanks for sharing your experience. It took three weeks for my Father get back to his preop condition. He had abdominal pain and pus coming out around the tube. Just hang in there. It will get better. Good luck to you and your husband!

DB
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
DB,
I really appreciate your sharing the experience your Father had with the PEG, and also adding above that it took three weeks for him to return to his preop condition.
My husband seems so much weaker and tired, his speech much worse, his walking so much more difficult than before the PEG. I hope he can get back to his preop condition as your Father did. It was very encouraging to read that that does happen.
I'm so sorry for the incredible ordeal he and you have been through in getting the PEG. The failure must have been pretty traumatic and the return to try again must have been so frightening. And then the pain and pus afterwards...just awful!
I hope he's doing as well as can be expected now.
Thanks for contributing to the forum. Your input is valuable and I wish you and your Father well. Take care and keep us posted.
Jane
 
Status
Not open for further replies.
Top