I saw a speech therapist yesterday. Did the beginning of the swallow strength test and failed. The opening of the esophagus does not open. A repeat of the test revealed the same result. She gave me a handful of exercises to do to improve. They are (1) Supragottic swallow, (2) Masako exercise, (3)Mendelsohn Exercise, (4) shaker exercise, (5) Effortful swallow. These exercises are to be done often throughout the day staring slowly.

Does anyone have experience with these exercises on improving swallowing? Is there a board within this forum that deals more exclusively with swallowing?

Mr Mike

Sorry to hear of your troubles. There is an iPad, iPhone App, called iSwallow, developed by UC Davis Center for Voice and Swallowing, that has 15 video exercises for dysphagia, including the ones you named. It is supposed to be used under the direction of a speech and swallow clinician, who has or can obtain the password required to access all thevfestures..the alarm clock, progress, and others, although, just downloading the apps, you can still access the exercises under "instructions." I do the exercises, but haven't seen my speech and swallow therapist in several months to inquire about. It is on the computer also, but to what extent, I don't know.

Exercises: Massako maneuver, swallow amplitude, chin tuck, effortfull swallow, gum chewing, head turn, jaw thrust, lollipop swallowing, Mendelssohn maneuver, superglotyic maneuver, isometric all maneuver, tongue exercises, tongue rom, vocal exercises, isometric shaker.

There is a speech, swallow alternative feedings further down the menu here, that may be helpful.

Good luck, and sure others will advise as to their experience and knowledge.

Michael, sorry things didnt go better with the swallow test!

I again apologize, there are no sub groups within OCF. I understand OC has so many components to it. By posting in "After Treatment Issues" there are bound to be others who have gone thru the same or very similar situations. Im sure others will join in soon to give you support.

Hi Michael. Welcome to OCF. I had two OC surgeries and after the second one I had a terrible time learning to swallow again. My speech pathologist was RELENTLESS, and I did #1 and #5 exercises every day - many times - from the day after my surgery. My situation never got to the point where the esophogus was closed (I don't think?) but I do believe the swallowing exercises made a huge difference.

You didn't say what your therapist thought of your situation? Did they think that if you did the exercises you stood a good chance of getting your swallowing back? Do you have someone at home to nag you to death to do the exercises? I remember they were not fun to do and being constantly reminded helped me.

Keep us posted.

Donna

Pandora,
The therapist felt she could help me. I will be honest that while I performthe exercises each day, I am not "relentless". She said that she thought that the esophagus would have to be stretched. I meet in another week with both the therapist and my radiologist and oncologist. she said she will recommend further treatment. My radiologist said base of tongue tumors often experience more swallowing issues.
Thanks for your input. I'll keep posting.
Mr Mike

I will add that anyone with massive radiation could do these exercises every hour and only gain from them. You can't overdo it and long term you may risk atrophy. The constrictors are often the first to go and start your swallow as well as direct post nasal drip. Sound familiar to everyone going through treatment? Yes we have all had that goo piling up there and even doing excel isles may not fully resolve but it will help. Speech therapists can modify exercises as swallow changes. It will.

Mike

Another possibility is VitalStim, which is an FDA approved transcutaneous neuromuscular electrical stimulation device. Not all Speech therapists are trained in it. If you read some recent posts about the PEG tube, you can see that often patients take a year before getting off a feeding tube and learning to swallow real food again, so don't give up hope.
I was lucky the first time around since without a PEG (based on my RO's advice since I had base of tongue cancer also), I never quit swallowing so could eat normally almost right away after TX. But the salvage surgery after the recurrence did a real number on me. Here is a study on VitalStim published at NIH, that indicates it really helps moderate dysphagia but not so much for severe dysphagia. VitalStim Unfortunately, VitalStim did not work for me as the damage to my epiglottis and the constrictor muscles was massive, compounded by a second dose of radiation frying the scar tissue, but it has worked for others. Can't hurt to try. You still do the same exercises with the SLP, but you also swallow water while getting the electrical stimulation to the swallowing muscles. I hope you make progress.
Charm

Thanks for the app Paul!

Charm, like you the VitaStim didn't do much for my constrictors and I have one side of the epiglottis that doesn't lift.

Great info!

Hi all,
I had the Vita Stim also after the first bout with OSCC and it did not work for me. This is my second bout with SCC and I again will try the Vita Stim due to the neck dx made all the muscles for swallowing tight. I do urge people to give it a shot. What doesn't work for one of us it might for another.
Robin

Thanks all,
My epiglottis "seems" to work. The Barium swallow films show the barium passing the epiglottis and puddling at the top of the esophagus which does not open. My "adam's apple seems to move up and down while swallowing which is another good sign in my mind. If I take more than a teaspoon of water and try to swallow I will start coughing to prevent aspiration. In smaller amounts the water just regurgitates

If the therapist, who has been helpful and considerate, wants me to be relentless, I can do that. She just gave me the exercises but was not clear on how often and how long I should do them. I did, despite my best efforts, catch a winter cold and the cough and sinus drainage is not helpful, but in time this will pass. I meet with all the docs and therapist in the next couple of weeks and I will hopefully get some good direction.

In the meantime I appreciate all your comments. They are encouraging and I wish you all the very best in your recovery process.

Mr Mike

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

I had my rigid endoscopy procedure yesterday but have very little detail because the Dr did not stick around and talk to me. He spoke very briefly to my wife saying only that he was able to get through the stricture and dilate it and he was very happy with the outcome. I can swallow now in smaller amounts than previously, but I am elated with the progress. I drank two ten ounce soft drinks while in recovery. By the time I got home (6:00 PM) I was very tired and it became very painful to swallow so I am taking some pain meds and an antibiotic so that I can continue swallowing and keep the stricture open. The stricture is likely an accumulation of scar tissue from the radiation. I think the pain will subside in a few days and then it will get easier. Apparently the Dr had to use a little force to breach the stricture and that is the cause of the soreness. There was traces of blood in my saliva yesterday but gone today. He also told the nurse that I might need another dilation (maybe two). This is very common for esophageal strictures and he will likely turn me back over to the local gastroenterologist for these procedures and eventually the removal of my feeding tube. I have an appointment on April 9 with the Dr that performed the procedure to discuss this. There is some possibility that the stricture will close up some so I will be sipping on something all day long to exercise the swallowing muscles.

So far I have had only liquids, mostly clear, but will start on some creamy soups, Jell-O and pudding. My goal is to be able to consume enough calories orally so that the feeding tube can come out without losing any more weight. That might take a month or longer but I can easily deal with that.

As you might expect I am absolutely thrilled with this unexpected outcome and I want to thank you all for your support. I went from a total occlusion of the esophagus to sipping liquids rather normally with this single procedure. It has been over six months since I last was able to swallow and I am looking forward to some of my favorite dishes. Tonite it will be homemade potato soup.

Again I am thrilled and thanks again to all of you.

Mr Mike

Three doc's recommended the tube before starting treatment..... they were right. By week three of treatment I had no swallowing function and this lasted 6 months. Fortunately I had my third endoscopy procedure yesterday to breach the stricture and it was successful and I was dilated. I can swallow now in smaller amounts than before treatment, but I am elated with the progress. I drank two ten ounce soft drinks while in recovery. By the time I got home (6:00 PM) I was very tired and it became very painful to swallow so I am taking some pain meds and an antibiotic so that I can continue swallowing and keep the stricture open. The stricture is likely an accumulation of scar tissue from the radiation. I think the pain will subside in a few days and then it will get easier. Apparently the Dr had to use a little force to breach the stricture and that is the cause of the soreness. There was traces of blood in my saliva yesterday but gone the following day. He also told the nurse that I might need another dilation (maybe two). This is very common for esophageal strictures and he will likely turn me back over to the local gastroenterologist for these procedures and eventually the removal of my feeding tube. I have an appointment on April 9 with the Dr that performed the procedure to discuss this. I cannot take big bites but small ones with a sip of water go down fine and I have not swallowed in six months.

As you might expect I am absolutely thrilled with this unexpected outcome. I went from a total occlusion of the esophagus to sipping liquids rather normally with this single procedure.

Me Mike

During my six months of disphagia I was totally on the tube. For a while I did some swallowing exercises hopefully to make it easier when and if I got my swallowing function back. I am not sure the exercises were any help. When the obstruction was finally breached on Mar 22 I had no real problems at all swallowing except the quantity I could swallow comfortably was much less than before the chemo/rad treatments. This will be work in progress. My goal is to be able to eat enough (probably 2300-3000 calories /day)without the tube. Right now I would have to have about 6 meals a day to consume that many calories, but I am down to 2-3 cans from 4-5 cansof formula per day so I am heading in the right direction. I will be asking the Dr about additional dilations, steroids and/or minimally invasive surgery to further open up my esophagus. Meanwhile, while I want this tube gone, just being able to drink and swallow again is a huge improvment. I am thankful and uncomplaining. What was interesting to me through this whole deal is when the obstruction was cleared, I did not have to re-learn to swallow. It just worked as before but I just can't get a lot of volume through....small bites, little sips, and Ensure type supplements may be my future.

Mr Mike

Mr. Mike,

One only need to have something compromised to gain an understanding of what that does to you. While I've not reached the point of not consuming anything by mouth, I've lived off of cream of wheat and broth. That first taste of solid food was glorious! I can imagine how wonderful it must be to be putting food back in your mouth!

Glad to see your swallow returned.

"T"

Well it is now three weeks since my procedure that opened my esophagus. I can eat many things but in small bites and a glass of water always at hand. Learning to eat slowly takes a little practice. Nothing tastes very good yet except maybe some good old chicken soup, but hopefully that will improve. I have to triple salt things to improve taste and decided that's not good for the blood pressure. I ate in a restuarant for the first time since last summer and did pretty well. No steak yet but a hamburger steak is doable. I didn't let them mess with my teeth at the outset and I really appreciate all the money I spent on dental care over the years because I really need the teeth now to eat. No more gulping things down.

My regular gastroenterologist called me today (ain't that something). Wanted to know how I was doing and since I have stopped using the feeding tube he will set up an appointment to see if another dilation will be helpful (I told him I could only take small bites). He will then assess me for tube removal. He does not want to be premature on removing it, but my goal is to be rid of it.

So, my story has been very good. I have 80% of my strength back and no complaints.

Note to CristineB.
Christine, I want to thank you for your contributions to this site and your enduring patience with all of us. I have reread your history a couple times and you have really been through the wringer and at such a young age. You have my best wishes for a long, healthy, and happy life.

Mr Mike

How about trying buffets. You can taste just a bite or two of many different foods. Be very cautious with chinese foods, the spices can burn. Chocolate milk helps soothe a mouth thats on fire from spicy food. Keep trying, it will get easier and things will taste a little better in time.


PS....Mike, thank you very much for our kind words! Im here to help others and give back as those gave to me when I needed help. Thats what this site is about, helping each other.

Mike that's great. I'm 6 months post surgery, and still have to take smaller bites...actually I eat most things with a fork and knife, which is easier. It's worked out well in terms of keeping the extra pounds off. I don't think I realized how much I ate at one sitting before!

I still use a bit more salt and a bit more sugar in my coffee, but for the most part taste is normal now.

Keep up the good work!

Oh, and ditto to Christine...I was gobsmacked when I read the story as well, and felt like my issues were just a bump in the road - certainly helped me through!

I am confused. If your barium swallow test showed no swallowing function, how are you swallowing. Just asking for my hubby who has failed the barium swallow test twice now.

Chuckles, reread this entire thread. It shows Michaels surgeries that have enabled him to regain his swallowing. Not all patients are successful like Michael has been. Hope he continues to keep up the good work. Best wishes to your husband, Chuckles!

Mike

Your story is amazing. What hospital and doctor did you use?
My three rounds of radiation have so fried my constrictor and esophagus and epiglottis that no one has mentioned surgery as a cure. I will follow up with my ENT. Thank you for sharing.
I dream of being able to have a cold sip of water. It has been four years since I have eaten one bite of food or had a sip of any thing. I failed 4 Barium swallow tests. This last round o radiation has put me over the limit and hospitalized me three times already this year due to radiation complications all connected to not being able to swallow.
Congratulations on your success. At this point, I would try any surgery but so far everyone tells me nothing will help.
Don't worry about the feeding tube, just focus on being able to swallow.
Charm