Laryngectomy
post Laryngectomy
ELECTROLARYNX
Most health insurance covers an electrolarynx, prescribed by your doctor after a laryngectomy, and it is important to obtain one and learn to speak with it as soon as possible. You can learn to speak very well with one of these instruments and the more you practice, the better you speak. Shortly after surgery, you start with one that has an oral adapter because of swelling under and around the neck. Later, you may use it without the oral adapter under the chin or against the side of the neck. Hopefully, you will have a SLP (Speech Language Pathologist) who will help you make the most out of your electrolarynx. Don't be discouraged. It takes time and practice, but it is an excellent method of communication.
If purchasing one is not possible, contact your local support group or ACS (American Cancer Society) and see if they have "loaners" available. Some of our members feel that borrowing one before the surgery and practicing with it makes the transition easier.
ANSWERING MACHINE
If you don't already have an answering machine, you will find that it is important to be able to receive messages, but using it to screen calls may be even more helpful. Even if you can speak some with the help of an electrolarynx, you may want to answer only when family and friends call but avoid having to go through an explanation to strangers or to fool with sales calls. The telephone company service, Caller ID, could help with knowing who is calling, but doesn't serve as many purposes for us as a simple answering machine.
PAGER
A lary's daughter came up with the idea of purchasing a digital pager and service through a local company so the new laryngectomee could call his wife's pager number with a coded message. They devised a code for him to put into the page rather than the telephone number. #1 was that he was OK - #2 was for the wife to call him when she got a chance (no emergency) - #3 was for her to get in touch with a neighbor or his father to come to see what he needed (kind of emergency) and #911 was for the wife to get help immediately. They had a few other codes - but they were just for information. This gave the family a sense of security that he would have help if needed. Most of the messages were #1, but a good system was in place and it brought peace of mind.
GETTING ATTENTION
It is frustrating to need help with something that is not an emergency and not be able to raise your voice and call to someone, so most of us found different kinds of noise makers or ways to attract attention. A bell, bicycle horn, party noisemaker toy, inexpensive 2-way radio to signal, or anything you can find that will work for you. For loud outside noise makers, see Activities.
STOMA WHISTLE
I bought a card of cheap whistles the other day at a party store, ($3.98 for 6), used some plastic cups, about two inches in diameter and one inch deep, that come as the containers in the drink mix, Crystal Lite, (no cost ... they are throw away items. A medicine cup might do depending on the size.) Cut a slot in the bottom to fit the mouthpiece of the whistle. Tape will seal the small openings around where the mouthpiece is inserted but a hot melt glue gun will drip a permanent seal around it. This should be washable.
You can now put cup to stoma and blow the whistle. You can put one in the car, one in your purse or pocket or hang it around your neck. Better whistles can be fixed when you need something very powerful (look under Activities) but the cheapies work for in the house or yard when you need to get someone's attention and they are not loud enough to scare the neighbors. Good as gifts to new larys.
(Pat Sanders)
HANDY WRITING TOOL
Although I use TEP now, when I first had my surgery I used EL and for several weeks was not very good at it because of the swelling. I carried a small magic writer in my pocket, a child's toy that I could write on, erase by lifting the transparent cover, and write on again. I used it for ordering in restaurants and whenever I needed to communicate and was having difficulty. I still pick one up at the local Toys 'R' Us or dime store whenever I visit a new patient. I found it to be essential in the hospital post op to communicate with family and friends as well as the hospital staff.
(Roger Jordan)
TALK ABOUTS
My husband and I have purchased "Talk Abouts". They are like a child's walkie-talkie only more advanced and have farther range. We not only use them in our home, but when we are out, if I need help and he isn't close to me, I can reach him at anytime. They are extremely clear. The price starts about $69.00 and goes up according to what range you want to have. They can be purchased at places like ABC warehouse, Montgomery Wards, Sears ... maybe Radio Shack ... these stores are pretty much nation wide.
SMOKE DETECTORS
It is especially important that we check the batteries in our smoke detectors since our sense of smell has been compromised and we may miss the smell of smoke. If we live alone or even spend any significant amount of time by ourselves we need to take particular care that the detectors are operational. The batteries should be replaced at least twice a year, and checked more often. Checking them typically involves verifying that a light is on, or pressing a button which should cause the alarm to sound. One way to remember to change the batteries is to use the occasion of turning our clocks forward one hour in the Spring, and back again in the Fall, as a reminder. One of the side effects of the laryngectomy is partial loss of the sense of smell, making a smoke detector a must. Check the batteries on schedule.
HUMIDIFIER
Actually you may want to get more than one, particularly for use during the winter or when the relative humidity is very low. One caution is to be careful not to place a humidifier in close proximity to a computer.
HUMIDIFICATION AND IRRIGATION
(These are the instructions sent home with new laryngectomees from UAB Hospital)
Humidify
Use a cool mist humidifier by your bedside. Clean it regularly.
Wear a stoma cover to hold in the moisture being lost as you breathe.
A dampened stoma cover will add moisture to the air you breathe and can be kept damp with a small spray bottle of water.
Irrigation
Irrigation: squirting water or saline solution into the stoma.
Schedule: 4 times a day or as often as needed
Quantity: 2 or 3 ccs each irrigation, can be repeated several times
Applicator: any size needle-less syringe or pipette (pipet)
TEP prosthesis irrigation: pipettes are made in a size that fit directly into the base of the prosthesis. One inch or more of the tip of the pipette can be cut off and inserted into the end of a syringe. This provides the tip that fits into the prosthesis and a supply of water from the syringe can be used to flush through the prosthesis for cleaning in place.
RIGGING A HOSE TO YOUR OWN HUMIDIFIER
The tubing that the hospital uses to attach to their humidifier is disposable and you can take it home with you. If you ask nicely, they might send a new one home with you in a package. I used this to convert my inexpensive home humidifier for a moisture treatment whenever I felt I needed it. All I had to do was dream up a connector.
I used the cool air humidifier from the drug store, which had a removable nozzle that tapered to an elongated shape. I removed that and it left an open round hole in the tank. The hole was about 2 1/2 inches in diameter. My connector was a clear plastic water bottle that had a 2 1/4 inch base. Any soda or regular thin plastic bottle will do. Just find the right size for your humidifier. I cut off the bottom and it fit nicely into the hole. I then cut the part off just under the screw-on cap and trimmed it until the end of the hose fit into the soft plastic top of the water bottle. I just played with it till it fit, trimmed a little on both of them. If you leak a little moist air around the seams of your new connector, it doesn't matter. It works fine.
(Pat Sanders)
AIR PURIFIER
Some laryngectomees invest in the purchase of an air purification system, especially if they have pets. Depending on the size of your living space, you can use one large unit, or purchase several smaller ones for use in different rooms. You might just prefer one in the room where you spend the most time.
RESPIRATORY SPRAYS
Any lary needing a respiratory aerosol spray of any type should ask their Dr. about an aero-chamber. Drs. routinely receive them as samples and will likely provide one at no cost. An aero chamber is a plastic tube with a trach mask on one end and an opening on the other to receive the aerosol dispenser and disperses the medication more effectively. Mine was prescribed by a pulmonologist for emphysema.
(Stan Mruk)
STAY AWAY FROM AEROSOLS
Try to eliminate aerosol sprays from the house. Remember you are breathing directly into your lungs without the normal filtering system. If hair spray stiffens your hair, imagine what it does to your lungs! Try a stick, rather than a spray deodorant. Don't use aerosol air fresheners or aerosol cleaning products and avoid strong smelling products of any kind.
NECK BREATHER MEDICAL BRACELET
A stainless steel bracelet is available that will let anyone know you are a Neck Breather. Cost is about $9.00 from Luminaud..
MEDIC-ALERT
Residents in Canada and the US have another alternative and that is to order a MedicAlert bracelet. MedicAlert provides a 24-hour toll-free emergency hotline which allows health care professionals and emergency workers instant access to your medical conditions, medication, allergies, special needs, personal requests, physician phone numbers and emergency contacts. Medical information can be updated and changed at any time free of charge. The cost is $35 for bracelet and first year, $15 per year after first year.
NOTIFY YOUR "911" DISPATCHER OF YOUR "CONDITION"
It may well be a good idea to contact your local "911" dispatcher's office about your "condition", so that they are prepared to act if and when you call.
LET GRAVITY WORK FOR YOU
When the larynx is removed, so is the sphincter at the top of the esophagus so it is not a good idea to bend over after eating or drinking. This is particularly true in the early days following the operation. If you raise the head of your bed, you will let gravity work for you at night to keep the acids in your stomach where they belong.
POST-SURGERY DRAINS
Because of additional surgery, I am having to leave the drains in for a while. My daughter, Jane, made Kangaroo pouches , large sown on pockets on some t-shirts to hold the drain bulbs - pretty neat idea from an 11 yr old and really very comfortable when moving around.
(Bill Snowden)
TAKING A SHOWER
In the laryngectomee supply catalogs, you will find several varieties of shower guards that fit around your neck and have a half cone shape over the stoma area. This protects the stoma area from the direct blast of the shower. A few drops of water splashed in the stoma will not hurt you, but you will be more comfortable with a shield. Later, you may not need it. With a well healed stoma, you can take a breath, put your finger or thumb over the stoma and step into the stream of the shower long enough to rinse your face.
HAND HELD SHOWER HEAD
One of the hand held replacements for your regular shower head will make it easier to direct the flow of the water around and away from the stoma.
ATTITUDE
Most of us find that the better the attitude, the faster the recovery. Apply yourself to learning the new ways of living and keep your spirits up.
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Ed Chapman, VP Web Site Information