Hi Everyone,
I was hoping to put up a happy post this weekend, but alas, not to be. My husband went in on Friday to have an esophageal dilation but the doctor could not do it. He has a "pocket' which is completely closed and the doctor was unable to put even the smallest scope down there. He said this is due to the radiation. He is 9 weeks post treatment and still not able to swallow tiny bits of water, obviously if everything is closed up. The ENT doctor who tried this called the Hopkins surgeon to explain the problem. Apparantly, our Hopkins surgeon can do this "innovative" procedure where he puts the scope through the stomach and goes upwards, rather than down the throat. Heaven knows what it's called. I just emailed him to see if we can get this done asap as we are so worried that as time passes this will worsen. My husband is very depressed, as you can imagine, thinking he will have to use the feeding tube for the rest of his life. Has this happened to anyone else? And if so, was the problem resolved? We need a little "HOPE" here.
Thanks,
Pamela

We are probably in the same boat here. My husband went in for a gastroscope but the instrument could not be put down his esophagus. He is now scheduled for an x-ray so that the gastroenterologist can see where the constriction is and how serious it is before deciding on the next step. It is worrisome, but in the grand scheme of things, if this is the one thing that he has to live with, I think he will be able to accept it.

Pamela, in the meantime, while we are waiting to see what the final outcome is going to be, I give my husband a small cup of coffee wherever I make myself one. We call it his "coffee swish." He swishes it round his mouth and spits it out. It somehow seems to give him a sense that not all is lost. But if you are going to do that and put in sugar and milk, then do make sure he brushes his teeth afterwards so that the sugar does not cause caries.

Pamela - I am so sorry to hear that the dilation did not work and can understand the despair that your husband may feel. I had a similiar blockage (unable to swallow anything) but fortunately the SO/ENT was able to break through. He told my husband that is was like a band had formed across my esophagus. Prior to the procedure, the ENT said that if he wasn't able to get through it then we would discuss another procedure where they go both down the throat AND up through the stomache. I don't know more about that procedure, but hopefully that option will be viable for your husband.

Best,
Nancy

Gloria - What a disappointment that must have been for your husband and you! I am sorry that the outcome wasn't better; hopefully the x-ray will show what is going on and indicate that it can be resolved.

With that said, your attitude is a great one... in the grand scheme of all we've gone through, things could be far worse. We have all been battered and scarred - no one comes out un-scathed. Sounds like you and your husband are a great team, getting through this together.

Regards,

Thanks, Gloria and Nancy! It seems we are constantly waiting. Patience is not my husband's virtue, nor mine, so it's a great lesson for us. Keep me posted on your husband's progress, Gloria and I will too. I guess on this same topic line? Hopefully, both John and my husband, Jack will have the success that you did, Gloria.
Thinking positive.
Pamela

I meant to say, I hope our husbands have the same success as you, NANCY!

Yes, Nancy and Pamela, it was quite a disappointment for me but we tell ourselves we are not yet at the end of the road, there is still something doctors may be able to do. John finished his treatment in January, so it's been a long time for him to wait. But we will persevere. Will keep you both updated on this thread.

Hi Nancy and Gloria,
Here's our update. We rushed over to see the Hopkins surgeon at short notice yesterday and he's fit Jack in for early surgery this Friday. He is going to have that procedure where they put a flexible scope up through the stomach and a scope down the throat at the same time and hopefully, they "meet" and he is able to dilate enough for Jack to be able to swallow. If the surgeon can only open a little, Jack will have to have a nose tube that does down the throat to keep it open and then in 3 weeks time he will have another esophageal dilation done locally to expand, followed by another dilation 3 weeks after that. That is option 2. Option 3, I don't even want to think about. He says if he can't get through and everything is completely shut then that means major surgery, opening up the throat and grafting a tube into his throat, etc, etc. Let's not even go there! Surgeon said in most cases he is able to have success with option 1, so I'm visualizing that's going to happen! I will let you know what happens.
Let me know how it goes with your husband, Gloria.
Pamela

Pamela - So glad to hear that Hopkins was able to schedule the surgery so quickly. When I had my first dilation, the SO/ENT was able to break through the stricture and I was able to swallow; however, he said he didn't want to be 'overly aggressive' so I had a 2nd dilation a week later where he opened the area even more. I see him next week for a 1 month follow-up from the 2nd dilation; we'll see what he predicts for the need in the future.

I also have my first post treatment CT Scan next week, so my anxiety is starting to get the better of me.

I hope Option #1 works for Jack!

Best,
Nancy

Hi Nancy,
Sending you positive thoughts and prayers for a clear bill of health next week! As my yoga teacher says, 'Take deep belly breaths" to calm your nerves and I just said to my husband today, "Let go and let God." I know, it's easier said than done.
All the best,
Pamela

Good luck!!!!

Fingers and toes crossed for Option #1 !!!!

Thanks Everyone. Me too, with the fingers and toes! My husband broke down and cried in my arms this afternoon. I wept with him. Then I told him that whatever the outcome, we would get through this and face it together. Now we have our chins up and willing positive!
Pamela

What an awesome TEAM you both are!!

Pamela, wishing you and your husband the best outcome. I will be sending positive thoughts your way. In the meantime, we still haven't heard from the hospital about the x-ray appointment. We do need a large dose of patience on this long and winding road.

Hi Gloria and all,
Well, Jack had the procedure on Friday. The good news is it worked! Surgeon was able to open enough for him to swallow. He is sipping water and ginger ale and feeling pretty good except for very sore throat due to the procedure. There isn't bad news, but it's something I am trying to put out of my mind. The surgeon said that it was easier for him to open than he thought it was going to be which raised a red flag for him that something else was going on. Yikes! He said there is a lot of scarring from the radiation and some scarring on the voice box which poses a risk of slamming shut, which would mean there would be nothing else to be done and Jack would be reliant on a feeding tube the rest of his life. My step son and I decided NOT to tell Jack that part of the news as we want him to "think positive" and it has so lifted his spirits! He continues to have horrible mucositis and continuing to spit, but he said he's swallowing fine. So.....surgeon said the next 3 weeks will probably be the deciding factor and he's to have another swallow test in 3 weeks time to see how it's progressing. He's on only liquids for a month and then we see surgeon for follow up end of August and to have PET CT Scan. So, I won't allow myself to be down and think negative thoughts. It's all positive and I'm visualizing Jack healing and staying "OPEN" and eating some solid food in the near future.
I will keep you posted.
Let me know what progress your husband is making, too Gloria.
Pamela

Pamela, that's good news and let's hope Jack continues to swallow and that his esophagus stays open. John spoke to the general surgeon that he had to see about his gallstones and the doctor basically said surgeons don't like to mess around with the esophagus. Any surgery would require the skills of a thoracic surgeon and is a big deal. His advice to John was to continue working with the gastroenterologist and see what happens. The whole business worries me but I can only take it a day at a time.

Pamela - I am very glad that the procedure worked for Jack. Did they use the procedure that went both down the throat AND up the stomach or was he able to break through with a one-way dilation?

I had my last dilation a month ago and haven't used my PEG in 3 weeks, so I am hopeful to have it pulled out soon. With that said, I am also fearful of my throat closing again so need to discuss that with my SO/ENT (I see him later today). Fear of recurrance and other issues are running rampant lately so the appointment will be telling.

Best to you and Jack,
Nancy

We all hope for the best. Sounds good so far.

I does sound great now that he can swallow push him to work on continuing to stretch those muscles and continue swallowing. hugs.