Update: Endoscopy on the horizon
I still have been putting all kinds of stuff in there, regular food instead of the formula, for a while now. Well, I guess the baked beans I threw in weren't such a good idea. It gave me a lot of gas and because I can't burp, due to the constriction (closure?) in my throat, I had a lot of tummy pain. Eventually I let off some pressure through the tube and all was fine. But I called Dr Lee and said I think something could be done to help this from happening again like a dialation (thanks for the suggestion Joe).
He reluctantly agreed and scheduled me for the procedure on the 16th. He said it was "too early" (17 weeks post-treatment too early? WTF??) but agreed in the end because I'm losing weight. I'm losing a bit of weight only because it takes a bit of effort to eat enough through the PEG to gain weight let alone maintain weight (and sometimes I forget to eat).
Hopefully this will, at the very least, allow me to burp and in the best case allow me to take in food through my mouth.
Best,
Mick
Comments
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Fingers Crossed
Did doc explain the reluctance? My endo asked about swallowing (I said I had some issues, but that was par for the course, nothing out of the ordinary, I thought). He recommended he scope me, and do a dilation if he saw the need. He did the scope (and dilation) Tuesday when he removed my PEG. I was surprised I needed it - assumed I was "normal", or luckier than "normal" since I've been maintaining my weight for a couple months with no tube feedings. It's still sore, but I feel "bigger"
Hoping there's a big belch (and food by mouth, of course) in your near future.0 -
DilationPam M said:Fingers Crossed
Did doc explain the reluctance? My endo asked about swallowing (I said I had some issues, but that was par for the course, nothing out of the ordinary, I thought). He recommended he scope me, and do a dilation if he saw the need. He did the scope (and dilation) Tuesday when he removed my PEG. I was surprised I needed it - assumed I was "normal", or luckier than "normal" since I've been maintaining my weight for a couple months with no tube feedings. It's still sore, but I feel "bigger"
Hoping there's a big belch (and food by mouth, of course) in your near future.
Glenn's MDs told him, before treatment, that dilation would be something they'd arrange if there was esophageal constriction after the radiation. They presented it kind of like it was fairly common.
I agree with you too. 17 weeks does not seem too early to do this proceedure.
I hope they get you in there really soon so you can see some progress.
Good luck.0 -
Dilation Twice
After a swallow study found I had a scar tissue stricture from rads, I scheduled procedure immediately. First performed on 6/9 the second on 6/25 which is 13 & 15 weeks post treatment. It opened my esophagus to 17mm with 20 being the norm per the gastro doc. I was told that I will need to have the proc. done again in the future as scar tissue also grows???
Good luck and Best Wishes
Ed0 -
DilationSkiffin16 said:Pickin N Grinnin
Mick, nice new photo of you a pickin and a grinnin....
Best,
John
Mick,
Hope the dilation works for you and I agree with ya also. I like my doc's but sometimes you have to wonder if they are paying any attention to what we say. Don't know how many times I've said I'm allergic to Tylenol and it's in my records but every rx they give me has Tylenol in it????? I think I'm going to ask for the dilation also. I've been trying to eat more and I think I overdid it. Have a big sore in the back of my throat from trying to eat too much I think. I had the ENT look a the sore and he said it wasn't c. Said it could be from reflux but probably I pushed eating something I shouldn't have and aggrevated the back of throat. (Why don't I get the new pics??? Only one I see of you is the old Mick. It took a week before it uploaded my new one on my comp???)
Good luck Dude!
Greg0 -
multiple dilationsEd_PortOrange said:Dilation Twice
After a swallow study found I had a scar tissue stricture from rads, I scheduled procedure immediately. First performed on 6/9 the second on 6/25 which is 13 & 15 weeks post treatment. It opened my esophagus to 17mm with 20 being the norm per the gastro doc. I was told that I will need to have the proc. done again in the future as scar tissue also grows???
Good luck and Best Wishes
Ed
I have not heard anything about scar tissue growing being a cause for multiple dilations, although that may explain Mick's doc's reticence to do the deed at this time: maybe he considers that the scar tissue has not stopped growing (?).
Instead, my docs explained that they did not want to risk tearing the esophagus by stretching it too much at one time.
I've had a couple of them now, and while the first was maybe the most painful waking experience of my life, at least from a physical perspective, it was not because of the endoscopy/dilation but because of a bronchoscopy they threw into the deal, and the second was a piece of cake. They suggest you may have a sore throat for a few days, but I had no complaints.
Good luck, Mick!
Take care,
Joe0 -
The gastro doc said that scar tissue is living tissue and as with most scars they change over time. Some fade away and disappear others build up and form a raised area. You're absolutely corect that the major concern with dilation is the potential for perforation. That is why they took me from 10mm to 15mm with the first and 15 to 17 on the second. Sore throat for 3-4 days following each, but a major improvement in swallowing.soccerfreaks said:multiple dilations
I have not heard anything about scar tissue growing being a cause for multiple dilations, although that may explain Mick's doc's reticence to do the deed at this time: maybe he considers that the scar tissue has not stopped growing (?).
Instead, my docs explained that they did not want to risk tearing the esophagus by stretching it too much at one time.
I've had a couple of them now, and while the first was maybe the most painful waking experience of my life, at least from a physical perspective, it was not because of the endoscopy/dilation but because of a bronchoscopy they threw into the deal, and the second was a piece of cake. They suggest you may have a sore throat for a few days, but I had no complaints.
Good luck, Mick!
Take care,
Joe
God Bless0 -
photo and thingsGreg53 said:Dilation
Mick,
Hope the dilation works for you and I agree with ya also. I like my doc's but sometimes you have to wonder if they are paying any attention to what we say. Don't know how many times I've said I'm allergic to Tylenol and it's in my records but every rx they give me has Tylenol in it????? I think I'm going to ask for the dilation also. I've been trying to eat more and I think I overdid it. Have a big sore in the back of my throat from trying to eat too much I think. I had the ENT look a the sore and he said it wasn't c. Said it could be from reflux but probably I pushed eating something I shouldn't have and aggrevated the back of throat. (Why don't I get the new pics??? Only one I see of you is the old Mick. It took a week before it uploaded my new one on my comp???)
Good luck Dude!
Greg
Hey Greg and everyone.
Yeah like Joe and you all said, perforation is the biggest problem. I can only see a benefit in my case. Right now it's just an endoscopy but I'm thinking they might try a staged dialation when they find it closed off. We;'ll see. This is to assess what the can do about it.
The new photo was shot by my 6-year-old son with my D20 Canon. I shot professionally for a while and now my kids have picked it up. He loves shooting and he's a left eyed shooter (like me!) which is very rare.
I've been playing a lot of music which lifts my soul. I'm not a believer in Gods nor devils but music does have that *something* which evokes the sense of both. For me as a player there is no finer moment than being in the middle of a tune, hence the photo of me with my favorite instrument, the Taylor 614-ce, which *always* makes me smile.
Best,
Mick0
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