Name Of Column |
Author | Title | Article Type |
| Musings From The President | Murray Allan | Largest Club In IAL | News & Events |
| VoicePoints | T Wigginton M.S., CCC-SLP | Pt 3-Hard Pill To Swallow | Education-Med |
| WebWhispers Columnist | Judith & Bill Ramboldt | No One Will Be Left Speechless | Experiences |
| WebWhispers Columnist | Richard Crum | Want A TEP/Prosthesis? | Education-Med |
| Bits, Buts, & Bytes | Dutch | Computer Tips | Experiences |
| Welcome New Members | Listing | Welcome | News & Events |
Murray's Mumbles ... Musings from the PresidentWebWhispers - Largest Club in IAL
It is truly amazing what the
Internet has done to connect people, countries and continents together.
The International Association of Laryngectomees has approximately 250 clubs
world wide. Of these clubs, WebWhispers is truly the largest, with over
1,170 laryngectomee/caregiver members. This year that number has been
growing by an average of 31
new members each month. When Dutch Helms informally started this club
back in 1996 little did
he realize the tremendous growth potential or what would develop from the few
founding members. Kudos are also in order for Pat Sanders, Vice President of
Web Information, who developed the WWHealthHelp line so that members could
ask questions and get advice from professional Otolaryngologists, Speech
Language Pathologists and other specialists. Pat is also a valued and
frequent contributor to the site and her knowledge of laryngectomy issues is
truly phenomenal. Dutch started the site because he couldn't find
adequate laryngectomy information on the Web and all laryngectomees owe him
and the others who now actively participate on the site a great deal of credit. |
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VoicePoints
[
? 2004 Dan H. Kelly, Ph.D. ] coordinated by Dr. Dan Kelly, Retired Associate Professor ( dy_kelly@msn.com ) Department of Otolaryngology, Head & Neck Surgery 7700 University Court, Suite 3900, West Chester, OH 45069 |
?That?s a Hard Pill to
Swallow?
Part III
Ongoing
assessment of nutritional status and swallowing function is an important
aspect of laryngectomee treatment and rehabilitation. Ideally assessment of
nutritional status and chewing/swallowing function should begin during the
pre-operative consultation. It is important to take note of the patient?s
current nutritional and dental status as well as oral motor and
chewing/swallowing function. It is imperative to have an idea of what sort of
the resection the surgeon has planned. This information will help the
clinician anticipate issues that may interfere with the recovery process;
initiate treatments that may help prevent or reduce the likelihood of
complications and provide the patient with realistic expectations regarding
the recovery process.
Although most
laryngectomees do not have significant swallowing problems and frequently
manage their swallowing issues by modifying their diet, taking smaller bites,
and eating more slowly, it is important for clinicians to keep in mind that
some laryngectomees do have significant issues that compromise their ability
to meet their nutritional needs. It is crucial for clinicians to remember
direct treatment should not be initiated until the surgeon has cleared the
patient for evaluation and treatment. Moreover, oral feedings should not be
attempted until the surgeon has given approval.
Many of the difficulties laryngectomee patients
experience involves the oral stage of the swallow. Diagnosis of oral stage
deficits generally involves taking a thorough patient history, observing the
patient eat/drink a variety of consistencies and may also include a Modified
Barium Swallow. Side effects from radiation therapy seem to be the primary
cause of many of the oral stage swallowing problems observed in the head and
neck cancer population. Radiation therapy can result in short and long term
difficulty with chewing and swallowing. In this circumstance, as in so many
other circumstances, an ounce of prevention may very well be worth a pound of
cure.
There is some recent and very compelling research that
Amifostine (Ethyol?) a radioprotectant, which was approved by the FDA for use
in the treatment of head and neck cancer patients in 1999, may be effective in
preventing or lessening many of the damaging side effects involving the oral
cavity and generally associated with radiation treatment. Ethyol? is an agent
that protects healthy cells from being killed by radiation therapy, but does
not protect cancer cells from being killed by radiation therapy. Ethyol? has
also demonstrated protective effects with the chemotherapy agent Platinol?
(cisplatin). Ethyol? is approved for the use in patients with head and neck
cancer to reduce the incidence of xerostomia (dry mouth) since radiation
therapy in the head and neck region can result in permanent changes in saliva
production (Xerostomia), radiation induced tooth decay, and trismus.
Xerostomia or dry mouth is very common long-term
problem associated with radiation treatment. Pilocarpine (Salogen) is a
medication that seems to help some patients who suffer from dry mouth but
recent literature suggests Pilocarpine may be more effective if it is
initiated prior to or shortly after radiation therapy is started. However,
Pilocarpine can be expensive and may not be appropriate for every patient.
Patients with dry mouth should drink plenty of water. Adding a small amount of
glycerine to the water can offer longer lasting relief. Sucking on ice chips
or sugar free candies or gum may also provide relief. Alcohol based
mouthwashes and peroxide solutions often result in further dryness and
irritation. Baking soda and water is a good inexpensive oral rinse. Salivart,
OraLube, Biotene, and Glandodane are some commercially available products that
may help relieve symptoms in some patients. Some patients find meat tenderizer
(papase) is effective at reducing thick and ropey saliva. However, caution
must be used when using papase. If the patient has an open lesion the papase
will attack that tissue and destroy cell structure. Many patients find
Coca-Cola Classic to be helpful in decreasing the viscosity of thick and
copious mucous. Patients who still have their teeth may want to choose a soda
water over a sugary beverage. Patients with Xerostomia especially individuals
with removable dental appliances seem to be particularly prone to developing
oral bacterial and/or fungal infections. Report any signs of infection to your
physician. Immediate treatment is important. Nystatin and chlorhedrine are
frequently used to treat oral infections. It is very important to thoroughly
clean and disinfect dental appliances to prevent ongoing infection or
re-infection. Dental adhesives should be avoided because they can harbor
bacteria.
Changes in saliva production and consistency can result
in tooth decay. It is important for patients who still have their natural
teeth, to see their dentists prior to beginning radiation treatment. The
dentist may need to extract teeth that cannot be restored, as it is
unadvisable to extract teeth after a patient has undergone radiation
treatment. Radiation therapy can result in permanently decreased blood supply
to the jaw. This generally reduces the bones ability to heal and resist
infection. Dentists will usually prescribe fluoride treatments and a daily
cleaning regimen. In spite of attempt to prevent decay some patients may still
have problems with decay. Every attempt should be made to salvage teeth and
prevent decay and infection. There are no contraindications to having teeth
filled, having root canals or having teeth crowned.
During the early phase of radiation treatment patients
often experience mucousitis, which is an inflammation and ulceration of the
soft mucous membranes of the oral cavity, and the pharynx. If possible it is
best not to wear dental appliances while undergoing treatment as they may
result in further irritation, and tissue breakdown. Patients who do not have
their teeth clean the tongue and oral cavity with gauze or a soft toothbrush
several times a day. Anesthetic rinses, sprays and lozenges that contain
lidocaine may help numb the mouth and throat. Many facilities have a
?house-cocktail? which they prescribe to treat oral mucousitis. This cocktail
usually contains some form of lidocaine and/or benadryl mixed with an
anti-fungal or antibacterial agent. Certain foods and spices may cause a
burning sensation and further irritation. In general, it is best to avoid
alcohol beverages, acidic foods and beverages, and anything that is hot,
rough, spicy, salty, dry or grainy textured.
Trismus is the loss of elasticity in the jaw muscles.
Trismus can be very painful and can result in difficulty opening the mouth and
chewing. Once again it is important to try to prevent difficulties before they
arise. If the jaw is going to be in the radiation field it is important to
stress to patients the importance of jaw ?range of motion?exercises 1-2 times
per day to reduce the risk of developing trismus. Some patients will develop
trismus in spite of preventative measures. Therabite and TMJ Oral-Flex are
commercially available exercise products/programs for the treatment of trismus.
In addition to treating difficulties such as xerostomia,
oral mucousitis, and trismus as symptoms appear, changing diet consistency can
improve oral stage function. Since the degree of difficulty varies it is
important to determine the patient?s degree of function. Some patients may
need to blend their food in a blender while other patients may just need to
avoid certain foods. Lubricating food by putting gravy, sauces or condiments
on it, or even spraying it with a very thin coating of vegetable oil can be
very helpful. Taking small bites and alternating bites and sips can
facilitate improved oral swallowing function.
For patients who have had to undergo oral resections in
addition to a total laryngectomy it is very important to assess dentition and
oral motor function i.e. the integrity of the tongue, lips, and jaw including
strength, endurance, range of motion, precision, and sensation. The clinician
needs to examine the patient?s ability to hold food in their mouth without
spillage, the ability to chew and form a cohesive food or liquid ball (bolus)
and the ability to move this bolus from the front of the oral cavity to the
back of the oral cavity in an efficient and timely manner. It is important to
examine the oral cavity after the swallow to take note of residue in the oral
cavity. The clinician may find the patient is able to manipulate
certain consistencies more easily than other consistencies. Moreover, the
clinician and patient may find compensatory techniques such as tipping the
head back or to one side or the other may facilitate improved bolus control
and anterior to posterior movement. In some instances adaptive spoons or cups
may be indicated. Oral prosthetics are generally necessary for patient?s who
have undergone palatal resections and can often improve bolus control and
anterior to posterior movement for partial and total glossectomees. In some
circumstances oral motor exercises may be indicated to improve lip closure,
tongue strength and coordination, and overall jaw range of motion.
Pharyngeal stage swallowing problems occur less
frequently but tend to be somewhat more difficult to treat than oral stage
dysphagia. Diagnosis of pharyngeal stage deficits generally includes taking a
thorough history, an oral motor assessment, and videofluoroscopic evaluation.
This study allows the speech pathologist and radiologist to assess oral cavity
and the upper aerodigestive tract. During the study the patient eats and
drinks a variety of textures of foods and liquids combined with barium. This
allows the clinician to assess structural and movement abnormalities as well
as consistencies that are more easily tolerated and maneuvers that may improve
the efficiency of the swallow. The swallowing study is generally
tape-recorded. At the conclusion of the study the speech pathologist should
review the tape with the patient and provide recommendations regarding
appropriate textures and feeding techniques. The speech pathologist will also
send a report to the referring physician. If structural abnormalities are
observed additional testing may be indicated. Pharyngeal phase swallowing
deficits may include fistula, pseudo-epiglottis or diverticulum, esophageal
stricture, and pharyngeal constrictor spasm.
The development of a fistula is not an uncommon
postoperative complication especially in patients who have had previous
radiation therapy, diabetes, are elderly and/or frail. On rare occasions
fistulas have developed months or years after treatment. Items that have been
eaten and/or drank can leak into the surrounding tissues or structures through
the fistula. This can result in aspiration and infection if the leakage is
into the lungs or infection and wound breakdown if the leakage is into the
surrounding tissue. A fistula may be able to be visualized or may require a
videoflouscopic swallowing study. The etiology of the fistula must be
determined in order to plan an appropriate treatment strategy. The etiology
is generally more obvious when the fistula occurs immediately following
surgery and may be more difficult to determine if the fistula occurs months or
years after treatment. Most small fistulas will heal with tincture of time,
antibiotic therapy and not eating or drinking. This means the patient will
require alternative nutritional support (PEG, NG or stoma-gastric tube) until
the wound heals. Larger fistulas or fistulas that are resistant to healing may
require surgical intervention.
A pseudo-epiglottis diverticulum is simply a band of
scar tissue at the base of tongue, with a pouch or a pocket below it. This
pouch has a tendency to collect foods. A large pseudo-epiglottis can cause
foods and liquids to back up into the oral cavity and sometimes all the way up
into the nasal cavity. A pseudo-epiglottis can be visualized during
videofluoroscopic swallowing study. Postural and dietary adjustments may help
reduce symptoms. However, if the pouch is very large and troublesome and the
patient is an appropriate candidate for surgery, resection of the scar tissue
may be the best treatment option.
A stricture or narrowing of the esophagus can
significantly impair a laryngectomees ability to swallow. An esophageal
stricture may remain static or evolve or time. Difficulty can range from mild
difficulty with certain foods such as bread or meat up to a complete inability
to swallow anything at all. While a stricture can usually be effectively
visualized during a videofluoroscopic swallowing study, the physician may
recommend further assessment in order to rule out recurrent or secondary
disease. The physician may recommend an EGD. An EGD is a procedure, which is
usually done on an outpatient basis. The patient is usually given a local
anesthesia and a scope with a camera on it is passed through the oral cavity
into the dilated esophagus. The physician will visually examine the esophagus
for abnormalities and a may take biopsy?s of any suspicious looking tissue.
Once recurrent or secondary disease has been ruled out an appropriate
treatment plan can be established. Depending upon the severity of blockage,
treatment may include dietary and postural modification, esophageal dilation,
and placement of an esophageal stent, or radical surgery that may
reconstruction the esophagus with a portion of the patient?s jejunum or a
radial forearm flap. The treatment approach will vary depending upon the
severity of the problem, the patient?s motivation to eat/drink, willingness to
modify their diet and candidacy for surgery.
Pharyngeal constrictor spasm is an involuntary
contraction of the reconstructed esophagus segment. This involuntary spasm can
result in difficult or dysfluent standard esophageal speech/tracheoesophageal
speech as well difficulty swallowing. The best way to evaluate spasm is by
evaluating the patient?s voice production or lack of voice production in
combination with a videofluoroscopic swallowing assessment. The patient
swallows barium and is then asked to ?voice?. The area of spasm will appear as
a constricted bar, with barium a puddle at the top. The lower end of the
constricted bar is identified as the esophagus is inflated with air. Treatment
for spasm may include a Botulinum toxin injection (Botox). If the spasm is
resistant to treatment with Botox, a myotomy may be indicated.
It is often helpful and advisable to refer
patients to a dietician. A dietician can determine whether or not the
patient?s nutritional needs are being met via oral intake. Moreover, the
dietician should determine the nutritional needs of the patient and offer
suggestion regarding how those needs can best be met. Often supplements such
as Ensure or Boost can be used to supplement meals. Alternative nutritional
support (PEG, NG and stoma-gastric tubes) can be used to supplement a
patient?s oral intake, temporarily provide nutrition support during
nutritionally compromised periods of time, and when necessary permanently meet
a patient?s nutrition and hydration needs.
It can be very challenging to treat
swallowing disorders in the head and neck cancer population. It is important
for professionals to realize total laryngectomy does not preclude serious
swallowing difficulties. While the typical structural risk of aspiration is
eliminated by surgical separation of the respiratory system from the digestive
system, dysphagia cannot be eliminated. In order to effectively treat
swallowing problems in the laryngectomee population, a clinician must have an
excellent understanding of head and neck anatomy and physiology, surgical
interventions employed in the treatment of head and neck cancer, short and
long term side effects of radiation/chemotherapy, appropriate instrumental and
non-instrumental evaluation techniques and effective treatment strategies.
Moreover, is very important to develop a good working rapport with the members
of the patient?s treatment team. The team will included the patient?s
otolaryngologist/head and neck surgeon, and may also include various medical
personnel such as the patient?s primary care physician, radiation oncologist,
oncologist, gastroenterologist, dentist, oral maxillary prosthodontist and
dietician. At times it can be difficult to balance the medical and
nutritional needs of the patient with their wishes. However, in the end it is
up to the patient to decide how they wish to meet their nutritional needs.
Laryngectomees and their families should
understand the importance of immediately reporting any change in swallowing
status to their medical team. They should not suffer in silence or try to
independently resolve serious swallowing issues. Delaying treatment can result
in malnutrition and dehydration which can in turn result in a host of serious
medical complications. In general the earlier treatment is sought, the better
the overall outcome.
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WebWhispers Columnist |
No One Will Be Left Speechless
When Libby Fitzgerald, WebWhispers VP Member Services, asked if any
WebWhisper member would be able to take over the Loan Closet, it was a
no-brainer for my husband Bill and me to volunteer. I have been the loan closet
custodian for the Nu Voice Club of Daytona Beach along with my vice president,
Amy Jo Kiger. All that was needed was more shelving for storage.
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WebWhispers Columnist |
Why One Would Want a TEP/Prosthesis
There has been some discussion on the list serve about why anyone would
want to have a Tracheoesophageal puncture and voice prosthesis or a TEP. I
have worked for InHealth, the Blom Singer? manufacturer, as a laryngectomy
consultant since 1992. In that time I have never told anyone that they should
have a TEP, rather I have tried being there to supply as much information as
possible, so that each person can make up his or her own mind. While the
decision to have the TEP has been very good for me, I know enough about people
that it may not be the best for everyone.
Dutch's
Bits, Buts, & Bytes(1) Need Help Remembering Passwords or Filling Out Online Forms? You may wish to check out ROBOFORM ( http://www.roboform.com ). This software was first called to your Webmaster's attention by WW member E. John Norris of Garland, TX (ejn11@verizon.net). Publisher's Description (Siber Systems): Named Best Software of 2003 by CNET.com, RoboForm memorizes and types passwords for you, and it can perform the entire login sequence automatically. RoboForm fills in online forms from your personal profile in several languages. You can store ATM passwords and software-activation codes in encrypted RoboForm Safenotes. RoboForm automates your daily password-entering routine and gives your passwords and other personal data security, portability, and complete manageability; passwords can be printed, copied to another computer, backed up, and restored.
CNET Download.com's Review of Roboform:
This tool reduces the time you spend filling out Web forms and logging onto subscription sites. RoboForm's plain interface distills form filling to one click and is accessible from a special browser toolbar, the context menu, a tray icon, or a desktop shortcut. Categorize personal information such as name, location, and credit card number, with identity. You can have multiple identities--for example, one for registering for free stuff and another for making real purchases on the Web. Unfortunately, you cannot categorize your identities, passcards, or Safenotes, so you may get lost in your list. RoboForm handles check boxes and radio buttons and fills out forms in about 20 languages. It uses triple DES encryption to protect your data and includes a password generator. All your data is stored in a single folder that can be easily copied or deleted. The program is a reasonably priced time-saver for the active Web surfer.
My Comments:
The RoboForm download file is about 1.7 MB in size and is fully functional for the first 30 day FREE TRIAL. After 30 days, some capabilities are limited (see: http://www.roboform.com/why-pro.html). Full capabilities can be restored by purchasing the "Pro" version of the software for $29.99. RoboForm now has almost 1 Million users world-wide. (2) The Aluminum Foil Deflector Beanie: (Practical Mind Control Protection for Paranoids) This site (http://zapatopi.net/afdb.html) is dedicated to spreading the word about the Aluminum Foil Deflector Beanie and how it can help the average human. Here you will find a description of AFDBs, how to make and use them, and general information about related subjects. I hope that you find the AFDB Home Page to be an important source of AFDB know-how and advocacy. What Is An AFDB? The Aluminum Foil Deflector Beanie (AFDB) is a type of headwear that can shield your brain from most electromagnetic psychotronic mind control carriers. AFDBs are inexpensive (even free if you don't mind scrounging for thrown-out aluminum foil) and can be constructed by anyone with at least the dexterity of a chimp. This cheap and unobtrusive form of mind control protection offers real security to the masses. Not only do they protect against incoming signals, but they also block most forms of brain scanning and mind reading, keeping the secrets in your head truly secret. AFDBs are safe and operate automatically. All you do is make it and wear it and you're good to go! Plus, AFDBs are stylish and comfortable. What are you waiting for? Make one today! J |
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Yuk Yuk |
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Apparently there is no joke too lame, too lurid or too inappropriate for Yuk Yuk, and he's absolutely determined to share with you every gobbet of stale drollery, every tired urban legend and every goofy web site on the internet. Yuk Yuk seldom contributes to any discussion, preferring instead to forward witticisms and bon mots culled from his voluminous archive. Of course, should any other Warriors object to his off topic inanity they are accused of lacking a sense of humor. |
Above courtesy of Mike Reed
See more of his work at:
http://www.winternet.com/~mikelr/flame1.html
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I
would like to welcome all new laryngectomees, caregivers and
professionals to WebWhispers! There is much information to be gained from the
site and from suggestions submitted by our members on the Email lists. If you
have any questions or constructive criticism please contact Pat or Dutch at
Editor@WebWhispers.org. |
We welcome the 30 new members who joined us during June 2004:
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Mike
Alexander Dodge City, KS |
Carl
Andrews Westmont, NJ |
Daniel Benjamin Southbury, CT |
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Bob Booker Huber Heights, OH |
Ruby Brass N. Las Vegas, NV |
Carolyn Chenault - Caregiver Decatur, AL |
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Nina
Dailey - Caregiver Fairfield, CT |
Pascual De
La Torre - Cancer Patient Los Angeles, CA |
Bill DeVanna Chula Vista, CA |
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Jenny Favaro - Caregiver Hoppers Crossing, Victoria, Australia |
Fr. Marian
Fernandes Mumbai, Maharastra, India |
Cheryl Haines - Caregiver Bridgetown, N.S., Canada |
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Richard
Hennenfent Marietta, GA |
Marilynn Hirtle Niagra Falls, Ont. Canada |
Kimberly
Iagmin - Caregiver Watauga, TX |
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Art & Bea LeQuin Ocala, FL |
Stanley Lipscomb Seat Pleasant, MD |
Brenda Martin - Vendor (ATOS) Coralville, IA |
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Ann
McKennis - RN The Woodlands, TX |
Don Neis Lake Villa, IL |
Alma Owens
- SLP Atlanta, GA |
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Don Page Lake St. Louis, MO |
Steve
Perry Worland, WY |
John Popson Solon, OH |
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Beverly Rains - Caregiver Peotone, IL |
Skip
Scheurman Schaumburg, IL |
Roger French Sitka, AK |
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Tom Sprecher West Palm Beach, FL |
Derek
Tattersall Mebane, NC |
Tracie Wilson Farwell, MI |
WebWhispers is an Internet-based laryngectomee support group. It is a member of the International Association of Laryngectomees. The current officers are: 
Murray Allan..............................PresidentPat Sanders............V.P.-Web Information Terry Duga.........V.P.-Finance and Admin. Libby Fitzgerald.....V.P.-Member Services Dutch Helms...........................Webmaster WebWhispers welcomes all those diagnosed with cancer of the larynx or who have lost their voices for other reasons, their caregivers, friends and medical personnel. For complete information on membership or for questions about this publication, contact Dutch Helms at: webmaster@webwhispers.org |
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Disclaimer: |
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? 2004 WebWhispers |
ListServ "Flame Warriors" 