Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
“Oh, My God!! I Can’t Swallow!”
By David L. “Dutch” Helms
Just prior to the WebWhispers Panama Canal Cruise in November of 2004 I began to notice some increased difficulty in swallowing some chewed foods. Foods that had, for the past 10 years, gone down easily now seemed to be getting stuck in my throat and required that I swallow some liquids with them in order to swallow them without difficulty. While on the cruise, I spent some time with an SLP and fellow cruiser, Dr. Zilpha Bosone, who “counseled” me on the situation. I made some minor changes in HOW I ate and things seemed to stabilize, if not improve.
The situation remained basically unchanged until around the middle of April 2005. Then, almost overnight, my swallowing difficulties seemed to increase significantly with each passing day. Suddenly, chewing and swallowing meats was virtually impossible … then salads became impossible … then breakfast cereals, then soft-boiled eggs, etc. Additionally, I was beginning to notice that I was also having increasing difficulty “voicing” clearly with my TEP/prosthesis … my normal volume was decreasing and the air pressure required to speak was increasing. By early May, I could hardly speak with my prosthesis at all and could hardly swallow even thin liquids.
The research I had done convinced me that one of two things had happened: (1) that suddenly after 10 years of no problems my esophagus had decided to “narrow” and close up … and might required esophageal dilation or (2) I had developed a NEW cancer – this time esophageal cancer somewhere between the base of my tongue and just above my tracheoesophageal puncture site. While my HEAD wanted to believe the first option, my GUT was telling me option two was the more likely culprit. Needless to say, I was concerned, to put it mildly.
When I got up and out of bed on Saturday, 7 May, I quickly noticed that now I could hardly even swallow my own saliva!! Being a laryngectomee, I could of course still breathe just fine … but swallowing ANYTHING now was problematic at best. I sat down and composed a two-page letter to my Primary Physician – describing my symptoms and the history of the problem and FAXED it to his office … requesting an emergency appointment with him on Monday. Throughout the remainder of that day I tried, with relative success, to at least swallow some very thin soups … basically chicken broth, etc. By Sunday, my esophagus was almost TOTALLY blocked and “voicing” with prosthesis was now impossible. I dropped an “update FAX” to my Primary Physician, to keep him up to speed and spent the rest of the day TRYING to get something down … but with little success. I also informed the other WebWhispers officers … so that they would (1) know what was happening and (2) could cover my web site and Mail List Moderator duties, should I be hospitalized, etc.
Monday, 9 May, was spent by my doctor trying to get me an urgent referral to a qualified Gastroenterologist (a common HMO story). However, it was successful and on Tuesday, 10 May, I was in Dr. Franz Schneider’s office (Gastroenterology Consultants, P.A near Ellington Field) for a quick exam. His initial reaction was that it was not a new esophageal cancer but rather MERELY (merely to HIM maybe) a narrowing of the esophagus, caused by tissue damage done during my radiation treatments years ago. Dr. Schneider juggled his calendar and scheduled me for a full Esophagogastroduodenoscopy (EDG) under fluoroscopic support for Thursday AM, 12 May, at Christus St John Hospital in Nassau Bay, a mere 1 mile from my apartment!!
The EDG experience was not as bad as I had thought it would be. I checked into the clinic, undressed and was given a hospital gown and a bed. They started an IV and did some other minor preparations, then rolled me into the OR. They then insured air flow to my stoma, had me roll on my left side, started IV Demerol, stuck a small EDG guide into my mouth and promptly watched me drift off into “LaLa Land”. I awoke about 45-50 minutes later feeling groggy, but FINE!!
Dr. Schneider had discovered a marked esophageal stricture, most likely post-radiation in origin, located in the proximal esophagus. He performed a dilatation with 27 Fr (.35”) and 33 Fr (.42”) dilators followed by a complete EDG … all else (throat through stomach) appeared normal. He confirmed that my esophagus was almost totally closed … but he had opened it up quite a bit with the dilatation.
Several hours later, I was back at home … and could now eat things and SWALLOW them!! For the first few days, I stuck to soft foods – potato soup, cottage cheese, puddings, etc., … but it was WONDERFUL. I then progressed relatively easily to chili with beans, baked potato with sour cream, bacon bits and butter, and even two Bavarian Weiss Wuerstle with sweet Bavarian mustard. The only problem, other than a minor sore throat easily controlled with liquid Tylenol, was I still could not speak properly with my prosthesis, probably still due to the tissue stretching and swelling around or near the puncture. Dr. Schneider also wanted me scheduled for a follow-on EGD and dilatation within one week.
As promised, Dr. Schneider’s office juggled his schedule again and told me to report to St John’s again at 0600 on Wednesday, 18 May, for a follow-on EGD and dilatation. The only problem was that his staff forgot to tell HIM about schedule change so while I was there at the appointed time, the doctor was NOT! J After many phone calls, we rescheduled for later in the day at 11:00. To make it short, a second procedure was done … routinely and without any problems.
I asked Dr. Schneider if he had any idea as to what might have caused this stricture to form almost 12 years post-radiation. He stated it was hard to theorize, but he thought it likely that a pill or some food particle had become lodged on a ledge or in a “flap” in the proximal esophagus tissue during the previous months, irritating the tissues and causing the stricture to form. I asked if GERD could have caused it and he said there were NO signs of that in the proximal esophagus. He did, however, say that during the 2nd EGD he did notice some tissues in my distal esophagus (just above the stomach) that MIGHT indicate potential Barrett’s Esophagus. And what is that?
“ Barrett's Esophagus Definition: A disorder in which the lining of the esophagus (the tube which carries food from the throat to the stomach) has cellular changes caused by irritation from stomach acid which has leaked into the esophagus. This leakage of acid is commonly known as "heartburn" (gastroesophageal reflux). Causes, incidence, and risk factors: Irritation of the lining of the esophagus by gastric acid secretions (stomach acid) causes Barrett's esophagus. It occurs more frequently in men than women. One of the main risk factors is frequent and long-standing gastroesophageal reflux (heartburn). The condition does carry an increased risk of cancer of the esophagus.”
This being the case, Dr. Schneider took a biopsy of my distal esophagus during the 2nd EGD. He also took a photo of the area and also a picture of where my prosthesis enters the esophageal wall … to assist my SLP in case a prosthetic re-sizing were necessary.
Following the second EGD, which further stretched the esophagus to about 42 Fr (.54”) I had a sore throat for the first day and could not eat very well … but by Day Two the sore throat had largely passed and I could again eat almost normally … AND … I could actually begin to speak a little bit with my prosthesis. The voice was breathy, rough and “bubbly” but it was a VOICE – sort of! It was now time to just WAIT and see what happened after the tissues “settled down” and for the results of the distal esophageal biopsy.
The biopsy came back “clean” and I then spent the next three-four weeks (1) waiting for the swelling to subside and the tissues to stabilize and (2) talking to some “experts” about what to do about my problem. Among these were Dr. Dan Kelly, Dr. Zilpha Bosone, Dr. Jan Lewin, and Dr. Corina van As-Brooks … all of whom unselfishly offered their enlightened suggestions and advice. Top on their list of advice was PATIENCE and the eventual use of “finger pressure” on a “sweet spot” on the outside of the throat while occluding the stoma … hopefully thus providing a return to some kind of TEP/prosthesis “voice”. In the interim, my trusty Servox has served me well and often.
Unfortunately, by mid-June, the eating and swallowing difficulties resurfaced and by near the end of June I was back to a liquid diet … and that only barely. A third EGD/dilation was scheduled on June 24th and my esophagus was again stretched and reopened … this time to a maximum of 45 Fr. This was followed by a fourth EGD/dilation on a week later on July 1st. During these third and fourth dilations, it was confirmed that the tissue blocking the esophagus was not cancerous but rather simply scar tissue, probably resultant from my radiation treatments back in 1993. Still, this tissue was proving a tough nut to crack.
As of this writing I am still without my normal TEP/prosthesis speech and am getting by with my Servox and can occlude my stoma and still produce a fairly audible whisper. Time will tell if the tissues ever settle down again to the point where TEP/prosthesis speech is possible. However, to be frank, given the choice, I would rather be able to EAT and speak with a Servox than not able to eat normally and speak via the prosthesis. As much as I love TEP speech, I love good and varied foods much better!!
So, I shall just have to see what the future brings … (1) an esophagus that remains relatively open for a while, (2) more dilations down the road, or (3) some other type of intervention that would produce a more long-term positive result. The EGD’s and dilations are not that horrible to bear and in fact, after four of them, I now consider them as routine as brushing my teeth (while not quite as pleasant)! Just wish me luck … you can rest assured I will be doing all I can to make sure my enjoyment of pizza, fried chicken, and steaks does NOT come to and end! The ultimate goal is to return to as near normal “eating and swallowing” as possible regardless of what final “voicing option” may be thus required. Priorities are simply that … priorities! I can report, though, that although, after dilations one, two, and three, my esophagus quickly started to close up again, after this fourth dilation, my esophagus did not do so … it has remained relatively open and I am “knocking on wood” that it remains so.
dil·a·ta·tion n. The condition of being abnormally enlarged or dilated, as of an organ, orifice, or tubular structure: dilatation of the stomach. Also called dilation
a. The act or process of expanding; dilation.
b. The condition of being expanded or stretched.
c. A dilated formation or part.
Stroke – Are you in danger? Pat Sanders
We often have questions that our members send in to the WebWhispers list relating to the carotid arteries. Having had surgery to the head and neck or radiation to that area may cause damaged tissue that makes us more susceptible to problems. There are many reasons and causative factors for being in danger of a stroke or a mini stroke and we will list some of those. A mini stroke can leave damage but doesn’t last very long is often a precursor to a major stroke. Let’s find out about the risk factors, symptoms and when you should not hesitate to call 911.
Mini Strokes – have you had one? Would you recognize it, if you did? A transient ischemic attack (TIA) is a stroke that it lasts only a few minutes. It occurs with an interruption of the blood supply to part of the brain. The symptoms may be milder
The following information was taken from the Stroke Association, a division of the American Heart Association: Stroke is a medical emergency. Know these warning signs of stroke and teach them to others. Every second counts:
Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
Sudden confusion, trouble speaking or understanding
Sudden trouble seeing in one or both eyes
Sudden trouble walking, dizziness, loss of balance or coordination
Sudden, severe headache with no known cause
This site http://www.strokeassociation.org/ has a great deal of information, plus you may sign up for a free newsletter with articles and health care news. For stroke information, you may also call the American Stroke Association at 1-888-4-STROKE.
There are several types of Risk Factors for Strokes. Some you can’t do anything about because you were born with them. Genetics play a role in who might have a stroke. So does race, with blacks having a higher incidence of strokes. Men are more likely to stroke than women (although a higher percentage of women who have them, die from them). Then there is just living long enough because the older we get, the more likely we are to have a stroke.
If you have already had a heart attack, ministroke or head & neck radiation, you might be more likely to have a stroke, although many times people are more aware after these things happen so take better care of themselves or are on the lookout for symptoms. Then there are things you might be able to change to increase your chances of avoiding stroke. If you have diabetes or high blood pressure, take your medications, do what your doctor has told you to do and keep the disease under control. With any type of arterial or heart disease, you need to be under the care of a physician. Sickle cell disease falls under this category. Don’t smoke and don’t drink alcoholic drinks to excess. Drug abuse is a high risk factor for a stroke. Obesity is another.
Try to reduce these risk factors because the lower the numbers of risk factors, the more likely you are to avoid a stroke. Keep yourself as healthy as you can, watch your weight, get your regular checkups and most important is to call for help if you think there is a problem. Watch for vision changes, inability to speak clearly, dizziness, pain, numbness, especially on one side and possibly the sudden onset of a headache.. Remember this affects your brain on a permanent basis and the faster you get treatment, the more of your abilities you will retain.
CALL 9-1-1 IMMEDIATELY IF YOU EXPERIENCE SYMPTOMS!
TIME LOST IS BRAIN LOST!”
HeadLines Newsletter: Pat Sanders, 205-980-8416; firstname.lastname@example.org
Kirklin Clinic Otolaryngology : 205-801-8456 FAX
Glenn E. Peters, M.D. Glenn.Peters@ccc.uab.edu
William Carroll, M.D. email@example.com
Nancy Lewis McColloch, Speech Pathologist ; 205-801-8460; firstname.lastname@example.org