A disappointing day for me last week. Went to the gastroenterologist for an endoscopy and dilation of esophagus. I am not sure of details as when I talked to the Dr. I was still under the influence of the light anesthesia. But he could not dilate because it interfered with my respiration and they had to bring me out. Probably closing off the airway The stricture is at the top of the esophagus. He is sending me to an ENT for a laryngoscopy, will then confer with the ENT and reattempt the dilation under full sedation at the surgical center. So it'll be another month or so before all this gets done. You know how pushing up appointments works. I have been on the PEG tube exclusively for more than four months now.
I was so hopeful that he could dilate and get me possibly sipping some fluids but no luck. I should be thankful that the the 2nd PET showed a complete response to the chemo radiation treatments, but I am bummed out over this outcome. For a guy who likes home cooking more than anything as well as a good pizza now and then, this was not a good day.
Better tomorrow I guess after I put some more resolve in the bank.
We'll see what the ENT says tomorrow.

Mr MIke

I'm sorry you've had such a tough time of it. I know how you feel about food. We are foodies (healthy foodies though) in my house so it was traumatic at first not being able to enjoy food. Hopefully you will get stuff sorted with ENT ASAP!!!! light a fire under his or her butt. hugs

Saw ENT Dr. today. He said there is still considerable swelling in the area of the vocal cords that likely caused the respiration problems I experienced when the gastro Dr. tried to dilate the espohagus last week. The gastro Dr. called tonight after concurring with the ENT and said he is going to put me on some steroids to address the swelling and reattempt dilation under full anesthesia next week. So I am back to where I was last week waiting to get rescheduled.

And the bills keep rolling in but at least we have a plan that according to the research I have done is the protocol for restoration of swallowing.

Mr Mike

All three of my doctors were emphatic on the PEG tube so I had it put in pre treatment. I was having difficulty swallowing before treatment started but continued to eat as best I could until about week three of treatment and then the pain became excruciating. I tried to swallow again about one month after treatment. No luck. Speech therapist...no luck. Couldn't swallow a teaspoon of water without aspiration. That was in mid November. Following the initial failed attempt to stretch the esophagus on Jan 22, I went to see the ENT on Jan 29. He said there was significant swelling (edema)in the area of the vocal fold which is adjacent to the entry to the esophagus. When the gastro Dr. inserted the endoscope into the esophagus this swelling effectively shut off the airway and I had trouble breathing (called stridor). Mt gastro guy called me and explained and after consulting with the ENT he scheduled me for another attempt under full sedation. I will be put on steroids to lessen the swelling prior to the procedure....so that is something to be hopeful for.

Back to the PEG tube, I'll make two points:(1) If I had not had the PEG tube I would not have been able to finish the treatment. I lost about 30 pounds and with a large tumor at the base of the tongue the radiation was focused very close to the now swollen area. (2) While there may be some dependency on the tube and atrophy of muscles for us tube dependent patients, if nothing can get thru the espophagus, it is the only option. I have been on the PEG tube now for more than 4 months.

I am looking forward to this second attempt at dilation on Feb 6th and will let you know how it goes. I feel like if I could get a little bit of liquid going down without aspirating, I could gradually make progress. At least that is what i am hoping for.

And as many of us complain, the thick mucous is still an issue. I got a light cold this winter and it made things more problematic. I must constantly clear my throat to rid myself of the mucous as I can't swallow.

This next procedure has me hopeful for some improvement.

Mr Mike

Might I suggest that another possible issue often overlooked is the tumour itself? AND the damage it leaves behind when treatment is successful? Alex complained of a "shelf" where food was getting stuck but it could easily have been palsy of that section of his swallowing mechanism which I imagine would give that sensation.

Alex's dysphasia was apparent BEFORE radiation and the almost exclusive use of his PEG was required at least 2 months prior. I don't quite remember, but I THINK the first swallow test showing that Alex should not be taking anything orally was also before radiation.

Alex received his PEG a few days after diagnosis (just in case), needed it almost immediately after 1st chemo round and actually started using it properly just before 3rd chemo round. He had it removed in Aug(?) 2011 which was 3 months after he really needed it and approx 18 months since it was inserted. He continues to battle and is essentially on a liquid only diet although he tries every day with "lumps".

Despite that 1st swallow test showing that he should not take anything orally, he drank sips of water, beer and coffee throughout. He choked a lot. He continues to choke a bit.

Oh, Mike, you poor man. I'm so sorry you are struggling with the swallow. You are having a harder time than most I think but need to just stay the course and continue with whatever therapy is being suggested.

I can relate a little bit. My husband is almost 2 months out of treatment and is struggling to eat too. He can swallow but it hurts and he has some problems still.

The doc said at about 2 months post tx one can start to feel better. That was news to us!

Originally we were encouraged by our institution to stay off the PEG. So we had different advise than you to start with. He was even given swallow therapy during treatment. So he did stay off the PEG but has lost 50lbs (and he was not a large man to begin with) mostly post tx. There are people here who get off the PEG successfully so it can be done.

My husband had a barium swallow test this past week and will start with an SLP 2x/week therapy. He was able to taste chocolate for the first time the other day. So I guess there are little steps forward in between the seeming stagnation.

I think the radiation is the culprit as all say, which is why choosing your RO well is of critical importance.

Keep up the work and there will be rewards. Small and incremental perhaps, but still there!

Good luck!

Well the second attempt at dilation failed. Gastro Dr. said It appears I have a complete esophageal occlusion or stricture. He could not get his scope to see any lumen (opening). There isn't anything more he could do so they sent me to a large hospital about 80 miles away. The Dr I'm seeing is an ENT who does all the complicated head and neck surgeries including open flap in Eastern NC. He proposed a three step process. (1) Another endoscopy but this time with a rigid endoscope. If he can get thru he will dilate, (2)Two Dr's will attempt getting thru the stricture. An ENT from the top (ante)and a gastro Dr from the gastro side (retro). They will use my PEG tube site to enter the esophagus from the stomach. When the meet in the middle, they will use barium or fluroscopy (sp?) to determine how thick and long the stricture it. If it is thin they will pierce it with a needle and poke a wire thru and then use wire guided dilation to open up the stricture (3) If (1) and (2) fail I will be looking at complex reconstructive surgery of the esophagus. It is risky and the outcomes not altogether predictable. Hopefully we don't get to (3). I have not swallowed since September 2012.

Note to moderator; If this needs to be moved to that board that includes swallowing difficulties, I'm ok with that.

Although it's early, I'd like to know more about this option (3). Is esophageal resection done with open surgery or is laproscopy an option. What institutions specialize in this surgery.

Thanks to all,

Mr Mike

It's horrible you have to go through so much. However, the plus is that there is HOPE. They could have said go home there is nothing more we can do. Some radiation survivors have that happen, unfortunately. I sincerely hope they can avoid number three all together, as well. But thankfully they have a plan of action. Best of luck, it sounds like you are in good hands.

Your doctors seem on top of things, and experienced to do complicated surgeries, others may not, and probably can do the next phase, so there may not be a need to go elsewhere, which hopefully it's not needed, Dr. Eric Gendon, at Mt Sinai in NYC, may have articles on resection of the esophagus, and believe was the first to do artificial esphogus implants with Dr Mark Urken, who is now at Beth Israel. Good luck.

Thanks guys! I always leave this site with a boost of optimism. Actually I am not really down in the dumps. Had I not undergone the treatment we all know where I would be. So I just deal with it. With regard to option 3 (if it comes to that), I am willing to take substantial risk if the reward is some semblence of a normal diet and no tube. If, on the other hand, the risk is high and the likely result is that I would only be able swallow my own secretions and have to keep the tube, then it might not be worth it. Esophageal resections in the lower esophagus are quite common and successful, but high up nea the opening may well be more challenging. We'll see and I'll keep you posted.

Thanks all,

Mr Mike