Other Treatments
side effects
AFTERMATH OF SURGERY
Because there are so many physical changes, our bodies react protectively by producing excessive amounts of mucous and, at first, we cough a lot. The stoma, being newly formed, needs moisture to keep from drying out and there will be post operative edema around the front of the neck. All of these aftereffects of surgery get better at varying rates of speed.
SMELL
Because we no longer breathe through our noses and our odor receptors are in the nose, we lose much of our ability to smell. We get whiffs of odors. Either we get accustomed to the fainter odors, or we learn to move in such a way that we get more "whiffs", but it does seem to get better.
TASTE
Taste depends partly on being able to smell and is also affected by dry mouth. Some people never have a problem with this and others either lose a good bit of the ability to taste or find a difference in the way foods taste. This gets better or even disappears over time. For an article that might help, read "Shadow of a Taste."
CAROTID STENOSIS
Several of our members have had carotid artery stenosis, a partial blockage of the carotid artery. One possible cause is the radiation we received in past years.
It may be found due to a "bruit" or different noise when the doctor listens to the artery with a stethoscope. It can also be found by other symptoms: TIA (Transient Ischemic Attack)--numbness on one side of the body anywhere, unexplained dizziness, vision disturbance (a plaque may have broken loose and lodged in your eye), a stroke (plaque going to your brain).
They are able to find the amount of blockage with a Doppler or CT scan. It can then be corrected with a stent. This is a procedure where the MD inserts a catheter in the groin artery using a balloon with the stent inside and a sort of umbrella over it to make sure no plaque flakes off and heads to the brain. The hospital may keep you overnight just to make sure all is well. You may also be put on meds such as Plavix and low dose aspirin prior to and after the stent placement. (Vicki Metz)
EATING AFTER STOMACH PULL-UP
After having a stomach pull-up, I was having difficulty eating because my stomach would only hold 4 oz. at a time, then I would have to wait an hour. This meant to gain or maintain weight, I had to eat or drink almost every hour and would eat one hour, drink the next. I was told that gravity would cause the stomach to drop down a bit and expand and now, 5 weeks after surgery, I can finally consume over twice as much and not feel as full. This also allows me to drink something with my meals, which I couldn't before. (Roger Scharmen)
WEDGE PILLOW TO ELEVATE HEAD
For elevating my head to avoid reflux, I use a wedge pillow about 12" high at the thickest end. I put a pillow on top of that. I prefer this to a tilted bed as we have no foot board and the mattress doesn't slide down toward the foot of the bed. Also, since I am the only one affected--my husband can lie on a flat bed. I just take this with me whenever we go away from home for the night where getting an extra pillow isn't always easy. See the descriptions and photos of pillows in Everyday Living. (Vicki Metz)
HYPOTHYROIDISM
One factor frequently overlooked by laryngectomees (and in many cases their doctors) is the possible damage done to the thyroid as a result of surgery and radiation therapy. The symptoms of hypothyroidism may include lethargy, weakness, cold intolerance, mental slowing, weight gain, and depression. They are not only associated with aging, but may be confused with chronic-fatigue syndrome and anemia. A laryngectomee should be sensitive to the possibility of under active thyroid and should ask about a simple blood test for the four main constituents of thyroid output on a yearly schedule. If your test ever shows you to be hypothyroid, a single pill a day will take care of restoring the balance but will have to be monitored for changes needed in medication. (Bob Hopkins)
SITES FOR THYROID PROBLEMS
Medicinenet.com has a Thyroid Forum with a great deal of information.
COUGHING
If you feel a scratching or like something is in your throat or you have a dry constant cough, squirt some saline solution into each nostril. You will feel it go down and this can be repeated as often as necessary to stop the cough. I have found this to be wonderful and get almost instantaneous relief. (Carole Rabin)
DEPRESSION
Any serious medical procedure is a trauma to your entire system. Concerns about having had cancer, about being able to return to work, worries about your lifestyle and personal relationships all take a toll. Do not hesitate to get whatever help is needed from your doctor.
NYSTATIN AND YEAST
I just got back from my semi-annual visit with Dr. Blom to have my in-dwelling prosthesis changed. As he gave me my new prescription for Nystatin, he also gave me some new advice, which I think merits passing on. If you have a yeast problem that you treat with Nystatin and have to take antibiotics, do two things: 1. Double the time you swish the Nystatin in your mouth. This means go from a minimum of 5 minutes to a minimum of 10 minutes. Use a clock, minutes take longer to pass than you think. 2. Use the Nystatin swish 3 times a day rather than 2 times a day.
Antibiotics favor the growth of yeast. Therefore, the upping of the Nystatin when taking antibiotics is advised. Also, remember, if you have your own teeth, wait at least 5 minutes then brush your teeth after swishing with nystatin. This will remove the sugar in the nystatin from your teeth. (Terry G Duga)
A NEW WAY TO USE NYSTATIN
After I swish a few drops of Nystatin once daily for several minutes and then swallow it, I put a few drops on my prosthesis brush and run it into my Provox 2 daily to kill the yeast. If you are using the InHealth indwelling instead of the Provox 2, you can dilute the Nystatin with a bit of water and use the pipette to squirt it into your prosthesis instead. (Sydney Gartenberg)
PEG TUBE (PERCUTANEOUS ENDOSCOPIC GASTROSTOMY)
TIPS FOR SITE CARE
(Be sure to check with your MD/Nurse regarding specific procedure for you)
CLEAN AND CHECK AT LEAST TWO TIMES A DAY
* Clean around tube at insertion with soap and water
* Rinse and pat dry
* Check the area for any changes such as redness, swelling, discharge, warmth or soreness.
* Notify your MD or Visiting Nurse. (It is important that you are familiar with your insertion site and the area around it. You will then be able to detect if something is not "normal" for you. Never treat the inflammation yourself).
* Cut a 1 1/2" slit in a 4x4 gauze sponge
* Place gauze on abdomen and around tube. Secure with tape.
* Coil feeding tube and secure with tape
* Be sure to leave 4-5" free as this will make it easier to access
FEEDING TIPS FOR PEG
(Check with MD/Nurse for your specifics)
* Flush before feeding (Minimum of 60cc of tap water before and after feeding. I used 120cc for each flush. Use large syringe or run through feeding bag).
* Make sure roller clamp is closed (down) on the feeding bag.
* Put formula in bag
* Prime tubing to purge air if needed (place end of feeding bag tubing over sink or trash can. Open roller clamp and allow formula to come to the end. Close clamp)
* Connect feeding bag tubing to PEG Tube
* Open clamp and administer feeding as ordered.
* Flush feeding tube after feeding.
* HINT-Rinse feeding bag and tubing with water and allow to air dry.
MEDICATION FEEDING TIPS FOR PEG TUBE
* Get supplies together (syringes, medications and tap water for flushing)
* Crush medicines that are not in liquid form. If capsule can be opened, empty contents in small amount of water and do the same to crushed pills and let dissolve. (Use pill crusher or mortar and pestle to crush pills)
* Flush, put liquid medications into syringe and then put into the feeding tube, flush again
NOTIFY MD/NURSE IF
* You cannot *flush tube
* You see formula leaking from insertion site
* Formula will not flow through tube from feeding bag
*(Flush - use warm water and large syringe. Make sure syringe fits securely at the end of tube. Gently push and pull plunger in syringe)
* Redness, swelling, warmth or discharge at insertion site.
* Fever
(Carole Rabin and Debra Rabin Abraham, MSN, RN, C)
FEEDING TUBES
I have had feeding tubes through the nose, through the TEP puncture, and of course the PEG or stomach tube. I found the tube through the nose to be the worst of all and I would never let them do that again if I had a choice. I have had a variety of stomach tubes, some easy to live with and others very difficult. The gravity fed tube: I found to be very slow and cumbersome. Of course you can vary different types of foods this way but since you can't taste it, I could not see any benefit is using soft foods over just Ensure. It takes longer with this type of feeding than any other and requires a lot more cleanup. At other times I used a syringe with a plunger for feeding. This is ok but I found that I forced the food in too fast at times and it made me ill. Presently I use the syringe without the plunger. I pour the liquids in and let gravity do the rest. If the tube is clogged I use an air bulb the clear the obstruction. (You can also pour coca cola in the tube and it will clear about most anything). I have found this the best method of feeding for me. It takes me a total of 5 minutes to feed myself and the gravity keeps me from forcing it in too quickly.
Types of Stomach tubes
There are a wide variety of stomach tubes and I think I have tried them all at one time or another. I have found that the MIC-G, Gastrostomy tube is the best choice and the easiest for me to maintain. Some tubes are sewn to your skin; others have a hard rubber ridge inside that keeps the tube intact. The ones with the ridge hurts when installed or when they come out. The MIC tube has a bulb inside that is filled with water after insertion. It is no more than just discomfort when it comes out or when it is installed. In fact I install my own tube and do not need any assistance to do so. The instructions on the MIC tube recommends using 5-15cc of water. At first I used 15cc of water and the tube would last about 3-4 months before the bulb would burst and need replaced. I now put 5cc of water in the bulb and the tube lasts about 5-6 months before it needs replaced.
Care of the stomach tube
I went to the Mayo Clinic for 3 years before I found out they had a PEG Nurse who specialized in the care of stomach tubes. Until I talked to her I had no idea what to do to maintain my tube. Of course the doctors never tell you anything. The nurse showed me how to care for my stomach tube and even taught me how to change it out myself.
1. Wash the perimeter of the tube daily with mild soap and water.
2. Nearly all tubes will leak stomach acid a little. If the tube starts leaking more than normal, the nurse should be made aware and a larger diameter tube should probably be used.
3. Stomach acid will cause the skin around the tube entry to become red and irritated. Apply Calmoseptine to the reddened area and it will combat the stomach acid. If it becomes infected or real sore call the nurse and let her know.
4. A 4x4 gauze should be worn for protection until the incision for the tube is healed. Once the incision is healed a covering is no longer a necessity but can be worn if a person chooses to go to the trouble. Personally I haven't worn a covering over my tube for 4 years now.
5. The biggest problem with a tube is it always seems to get in the way. The MIC tube has a round, plastic circle to keep the tube from going too far into the stomach. The large circle makes the tube stick straight out and it is bothersome. The nurse and I trimmed the circle and made it smaller to where the tube will hang down and not be so bothersome, yet it still is large enough to maintain it's purpose. You can also get a belt made specifically for a stomach tube. It is an elastic belt with a pouch attached to put the tube in. I use it sometimes when I go hunting or fishing to keep the tube out of my way.
Important: When you have to live on a feeding tube ALWAYS make sure you are putting enough water into your system. I make sure that I always put enough water in when I feed myself that my urine maintains a clear color.
I am not a doctor and am only passing on what I have learned and my experiences.
(Bill D. Hathcock)
MOUTHWASH AND TOOTHPASTE
My Dentist recommended a treatment, basically a Sodium fluoride mouthwash that I have found it quite refreshing and it would appear has kept my gums and mouth in good order. Recommendations also included the use of a toothpaste which is made up with the same ingredients as the wash but unfortunately this information came to late to help my teeth which were in the latter stages of decay. Both the mouthwash and toothpaste are used once or twice a week and therefore the outlay is not expensive in the long term if it helps to avoid radiation and chemo dental problems incurred by laryngectomees. The wash and toothpaste are Colgate products, Duraphat. Talk with your dentist. (Jim McDougall)
THICKENED SALIVA
For thick saliva - I was given this bit of advice by my dentist - keep some pineapple squares in their own juice in the fridge and eat one now and again - it works. (Liz UK)
Moisture, Moisture, Moisture! Use your humidifier, drink lots of water. Sometimes tart drinks or hard candies stimulate production of saliva, but your body needs the water to thin it. Try both hot and cold drinks to see which works better for you. Cold bubbly club soda may cut it loose. (Suggestions from the WW Email list).
SALIVA STIMULATING LOZENGES
I have found a product that really makes saliva. It is called Salix and is made by a company called SalivaSure, http://www.scandinaviannaturals.com . I put one between my gum and cheek and just let it dissolve. It is good for 30 minutes to an hour. I can do an hour of aerobics now without having to wet my mouth. I have had a lot of cavities and my teeth stain real easily but otherwise not much trouble except for the lack of saliva. (Janet Pounds)
HINTS FOR DRY MOUTH
I discovered Biotene products, made by Laclede, at the IAL Convention held in Toronto. They have a chewing gum, which I like a lot! Although, it breaks down in my mouth after chewing it awhile, it does last longer than the other chewing gums that are on the market. I still have most of my teeth and since I had extensive radiation, it is very important that I keep my mouth moist. I didn't have much success with the "sprays" that are on the market but I find that lemon drops, or other hard bitter candies, help generate saliva. I carry a small water bottle at all times, otherwise I lose the quality of my "TEP" voice, since late in the day my saliva becomes very thick, and I am unable to swallow it easily.
XEROSTOMIA
This after effect of radiation therapy or medications can be temporary or permanent. In response to requests for information and recommendations about xerostomia, remedies include the following:
1. Sip water frequently. Use a humidifier regularly to moisten air. These will both help to decrease thickness of salivary secretions.
2. Stimulate flow from salivary glands by using sugarless candy and gum or chewing fibrous foods, such as celery or carrots, between meals (if tolerated).
3. Alternate solids and liquids during meals. Use sauces or gravies to add moisture to dry foods. Take small bites and chew well.
4. Saliva substitutes are available in sprays, liquids and, I believe, in gums, and gels. Ask your pharmacist to recommend products (i.e. Salivart, MouthKote). Be aware that saliva substitutes are a temporary solution and many patients consider them ineffective.
5. If xerostomia is severe, consider the use of medications, such as Pilocarpine and Bethanechol (Urecholine), which stimulate salivary production. Talk to your physician to determine if these are appropriate in your individual circumstances.
6. Prevent dental decay that may be associated with xerostomia by visiting the dentist more frequently and not eating sugar between meals.
Good luck. From my own personal experience, many of the patients that I have worked with have just learned to live with it. (Laurie R. Sabol, SLP)
TAKE YOUR VITAMINS
Dr. Kagan, who is is world famous as a wound specialist, says that whenever there is a healing problem, the patient should be on Centrum Silver Vitamins. I bought the store brand with the same ingredients (1/2 of the price) and have been taking them.
Carole Rabin
HEAD AND SHOULDER STIFFNESS
The number one rule for pain. See if there is a medical reason for it. If there is not and your doctor clears you, then the recommended treatment is "use it or lose it". Physical therapy, massage therapy and/or an exercise guru can help you with this but you can do it on your own and feel much better. For the people who have devoted a little time every day, the benefits have been great. It is not that time consuming. Some of this can be done when you are in your car and stop at a traffic light or when you are watching TV. Try it. You may love it or love the way it makes you feel after! You can read these articles by going to the past issues of HeadLines. The Self-Massage articles start in June 2002; Stretching article is from August 2003
Download an Adobe.pdf file of Self Massage and Stretching.
Download a Word file with the series of articles on Self Massage and Stretching.
(Pat Sanders, Editor HeadLines)
For suggestions, contributions or questions about this section, please contact:
Ed Chapman, VP Web Site Information