Big Stoma Dilemma For Tracheoesophageal Speaker
This article is focused on the problem of having a stoma that is big. Big is a relative term. In the case of tracheoesophageal (TE) speech, the concern regarding the stoma is its size (or shape) relative to the speaker's finger or thumb, or relative to hands-free valve or heat-moisture exchange (HME) housing units that must be adhered to the neck on top of and around the stoma.
Size Might Matter
For several reasons, stoma size is one parameter that the speech-language pathologist (SLP) should routinely evaluate on every laryngectomee patient, regardless of the method of communication being attempted.
First, the SLP can help to identify potential airway concerns in the event that the stoma size is small or "shrinking."
Second, placement of a housing unit for an HME device is generally considered to be a good idea regardless of the method of communication. The HME housing unit must be able to adhere to the neck over the stoma; a large or irregularly contoured stoma could make this challenging (although in many other cases a housing unit is just the right answer to improve coverage over a large stoma! More details are offered below).
Third, a small stoma size may create additional "noise" or be more prone to do so with somewhat more forceful breathing, even if air exchange is adequate. This added noise could serve as a distracter to the listener or even be severe enough that it competes and interferes with the speech being produced.
Fourth, a laryngectomee patient may opt for more than one method of communication, or want to shift the method of choice at some point. Stoma size could be a limiting factor — one that is too small may make it difficult to care for or have room to change out a TE prosthesis, one that is too large could pose coverage issues, making TE usage, at least, more challenging.
So with a TE user, stoma size and shape can play a direct role in the TE speech production process. One that is too small could pose problems with changing a prosthesis or performing daily cleaning. One that is too large or irregularly shaped could pose troubles that will be described below.
In most cases where stoma size is an issue, the SLP, laryngectomee, and ENT are dealing with a "shrinking" stoma that is becoming too small. In some folks, the body simply is intent on not allowing a particularly large stoma. Surgical revision and placement of a tracheotomy or lary tube to serve as a stint within the stoma are common approaches to dealing with the stoma that is too small. Although perhaps less common, a large stoma, or one that is irregularly shaped, poses its own issues. But how large is too large for the TE speaker? It all comes down to whether the individual is able to occlude the stoma digitally or whether a housing unit for an HME or hands-free valve can cover the stoma for either digital occlusion or use of a hands-free valve. If the SLP hears air escaping around the stoma during voicing attempts, the stoma can be inspected visually and the act of occluding the stoma can be carefully observed to note whether there is a mismatch between the size of the stoma and the digit or housing unit seal.
Dealing with a Large Stoma in a TE Speaker
A large stoma can create several problems for the TE speaker. If they are unable to occlude the stoma completely, air escaping around the thumb or finger can create significant noise. This noise could distract the listener or possibly be loud enough to interfere with speech intelligibility. In some cases, the air escape is great enough that the individual is unable to generate sufficient air pressure to overcome the resistance of the TE prosthesis and pharyngoesophageal segment (this is the muscle tissue at the top of the esophagus that is set into vibration by the air flowing from the trachea to the esophagus through the TE prosthesis). If the pressure loss is great enough, no TE voice will be produced.
Why might a person have a very large or irregularly shaped stoma?
1) Some folks may naturally have a trachea that is of large diameter. When this trachea is turned to the neck during the surgery, the tracheostoma that results may simply be large. In other cases, the trachea might be fairly normal in its diameter, but the surgical reconstruction is such that the stoma remains large after the healing is complete. Surgeons are ever cognizant of the fact that nearly all stomas that are created will tend to shrink over time. It is not unusual to see a patient soon after the total laryngectomy procedure who has what appears to be a fairly large size stoma (perhaps larger than a quarter), but just a few weeks later the stoma has reduced substantially. In fact, the surgeon may count on this shrinkage when they are in the midst of creating the stoma. However, there is the rare patient whose body doesn't follow the usual trend and whose stoma does not reduce in size very much or at all. Depending on their thumb/finger size, digital occlusion could be problematic.
2) Although even rarer, some folks may experience breakdown of the surgical repair shortly after the surgery. This might occur as a side affect of radiation therapy or perhaps another disease state that does not promote good healing (e.g., diabetes, etc.).
3) Occasionally, we see patients who start out with a fairly normal size stoma that gets "stretched" or pulled in ways that change its size or shape. As the neck heals there may be significant scarring (particularly if there has been surgery beyond a standard laryngectomy). If the scarring happens in just the right location(s), it could place a pull on the stoma in one direction or another, deforming the shape. We have had experience with a very small handful of individuals over the years who had to wear a tracheotomy tube because of a small stoma that eventually caused the stoma to change shape or size. One woman in particular had to wear a trach tube for an extended period of time because of stoma shrinkage. Two years post her laryngectomy - and about 20 months of wearing her trach tube - she reappeared in the clinic after having moved away and being lost to follow-up. She indicated she had not been going back for care to any SLP or ENT for at least the 12 months prior to her reappearance in our clinic. Her trach tube was still hanging in what was now a very large stoma. She had it tied tightly in place with the neck strap, stating that it "fell out" frequently when she coughed or moved her head, but she just "popped it back in." She was under the assumption (a false one at this point) that it still needed to be there. She did not have any unusual scarring or any other medical conditions that would appear to have created the stoma enlargement. Based on her description of the way she managed the trach tube (fairly forcefully, often taking it out and putting it in), we speculated that the stoma was enlarged by constant manipulation of the tube within the stoma site. Looking at the stoma, it appeared that it was stretched inferiorly into somewhat of a long oval, or almost tear-drop shape. When questioned further she indicated that she often times had to hold the trach tube in place. We speculated that she may have been putting fairly constant, but low grade pressure on the tissue as she held the tube in place, creating the change in size/shape.
4) In addition to the overall diameter and the shape of the perimeter of the stoma, it deserves mentioning that excessive elevations or depression in the tissue comprising the edge or lip of the stoma could also cause difficult in getting good stoma seal for TE voice. Suture lines that heal into a groove or crevice can cause a depression around the edge of the stoma that is difficult to fill with tissue from the thumb or finger. It might be possible to create a seal with additional digital pressure, but, in itself, that can cause trouble (blocking the tracheal end of the TE prosthesis as the thumb/finger pushes in deeper, pushing the prosthesis posteriorly within the fistula tract causing the esophageal end to be obstructed by the back wall of the esophagus, etc.). In other folks, scarring can create tissue elevation such that flush coverage with a digit is not easy. This is more likely to happen with folks who scar easily or excessively (e.g., keloid formation which is seen more often in African Americans).
What to do, what to do, what to do?
Fortunately, there are usually options for trying to deal with a stoma that is too large relative to the coverage abilities of the speaker. The solutions fall into two broad categories: surgical revisions and changing the method of occluding the stoma.
Surgical revisions could be appropriate for any of the above situations. Surgery can be done to reconstruct a smaller stoma, rebuild a stoma if tissue has broken down, reduce scarring around the stoma, or release the tension from scars that are pulling the stoma into an unusual configuration. The decision to do so and the methods by which the revision is done falls to the ENT surgeon. However, they are likely to look toward non-surgical means of dealing with the problem as a first choice.
The SLP and patient, in most instances, must look for ways to more completely occlude the relatively large stoma. There are several options to consider. The one that I usually try as a first alternative is use of a HME or hands-free valve housing unit, assuming that the patient is not already using one. The housing unit has a fairly small elevated opening that is designed to be centered on top of the stoma. The housing unit has a broad enough adhesive base that it should be large enough to cover just about any stoma while still having sufficient adhesive surface to stick to the surrounding neck tissue. With the housing unit in place on the neck, the speaker can use a finger or thumb to block the elevated opening on the housing unit or they can place an HME or hands-free valve in the housing unit. In very rare instances the adhesive base on the housing unit does not have enough surface contact with the patients neck (because the stoma is so large) making it hard to keep the housing well sealed. If the seal breaks, then we are still left with air escaping and creating unwanted noise. However, I think that this approach is worth a valiant and persistent effort in many cases.
If a housing cannot work or the patient does not want to use it, there are other options to try. Some folks can cover the larger stoma by using two rather than one finger. The use of the fleshy part of the palm of the hand also is worth a try. This part of the palm has a large surface area and the flesh is usually soft and deformable so that it can more easily conform to irregular contours.
Sometimes, if the stoma is just slightly bigger than what the digit is able to occlude, one only needs to ask the patient to do the finger occlusion on top of a stoma cover or garment rather than directly on the stoma tissue itself. If the fabric or cover is thick enough, it may allow for a more air-tight stoma seal. Finally, the speaker could use another larger object held in the hand to block the stoma. For example, we have used round, deformable, stress relieving balls (those kind that you are supposed to squeeze when you get frustrated or just need something to do with your hands) to block the stoma. The speaker simply holds the ball over the stoma with slight pressure when they want to talk and pulls it back to take a breath. Of course, care must be taken with the device chosen. It must be large enough that there is absolutely no chance of it falling through the stoma and into the airway. It must be deformable enough so that it can closely fit the contour of the stoma itself (the shape as well as the elevations and depressions on the stoma edge). It also must be made of material that will not flake off or break. Fuzz on the ball is not a good idea as this could be inhaled or stick around the stoma site. I have had one patient whose skin appeared to be sensitive to the device that we initially chose, suggesting that one must be alert to skin reactions or allergies to whatever is tried. We ended up covering her stress relieving ball with a cloth slip-cover (washable!) which took care of the problem. As a side note, we also have used the stress relieving ball as a stoma cover for those with other problems affecting stoma coverage such as significant arthritis in the fingers/hands, various neuro-motor diseases affecting finger/hand control, and so forth. For many of these other folks, the larger ball can result in more complete stoma coverage despite the fact that finer finger/hand control is diminished. A large stoma can create trouble for the TE speaker. Fortunately, there are viable alternatives that the SLP and patient can try, often with great success. The surgeon also can play a role if needed. Patience, trial and error practice, and persistence are called for to ultimately solve the problem.
Some days, I open my personal mail and laugh at some silly or funny comment a friend has said to me. Sometimes, I find a message from a WW member with a problem or question. The following message took me totally by surprise because I had not heard from this old time WW member in a long time. I love that he filled me in with what he is doing now with the group he has been working with and I think you will find it interesting.
Since my operation in1997 left me, an old salesman, with a real handicap, I have volunteered a lot and found it very rewarding.
I'm a veteran of the Korean war so, after I got my WebTV, I started searching for my overseas buddies. What started with finding 2, has ended with 900. I have been attending reunions since 1999 in Las Vegas when we formed a full regiment reunion committee with 2,000 Vietnam vets. Three years ago, I joined my Legion's "Honor Guard".
Since then we have given more than 450 local veterans their final send off. We do the firing and flag ceremony at the cemetery, averaging 1 burial every 2 days. We are thanked by the families at the cemeteries and receive "thank you" notes for our bulletin board. We receive a stipend from the funeral homes, which many times is $75 to $100. That pays for our uniforms and a drink at the Legion for a toast to our fallen comrade. We are thanked often.
As I get older, I find it is good to say "thank you" and "I love you" to the folks that do good things for others in our world. You are one of those. I hope you will accept my sincere and heartfelt "thank you" for all that you do.
With my Love ------------ Jer
Jerry Guinn-Korea 52-53, Observer 4.2 Mortar Co., 35th Regiment,. 25th Div.
Pat what a lovely story that was! Talk about a shaggy dog tale. OMG I don't mean 'shaggy' in the way it is used now, but as the great humourists like Thurber did. Regards, Rosalie
1. Charles and I discovered one day at our support group meeting that we went to the same high school, at the same time, but neither of us remembered the other.
2. As he said in his story, he was head of security for DCH Hospital in Tuscaloosa, AL and their guard service company was Pinkerton. In about 1990, I went to work as the Sales Rep for Pinkerton in Alabama and, one day, I called Charles to talk with him about renewing his contract with us. We never met during that time.
Might you have a problem with Candida Yeast?
You can try this simple test to find out.
First thing in the morning, before you put ANYTHING in your mouth, fill a clear glass with room temperature Bottled Water.
Work up a bit of saliva, then spit it into the glass of water. Check the water every 15 minutes or so for up to one hour.
If you have a potential problem, you will see strings (like legs) traveling down into the water from the saliva floating on the top, or "cloudy" saliva will sink to the bottom of the glass, or cloudy specks will seem to be suspended in the water.
If there are no strings and the saliva is still floating after at least one hour, you probably have Candida under control, and have nothing to worry about.
What can you do if the test shows positive?
Talk this over with your health care provider, as soon as possible.
Be aware that a Candida Yeast problem can be pretty difficult to deal with, especially after it has had enough time to get established and be causing you problems.
It may not be easy, and it may take a while to impact the situation, be patient, and work on it everyday.
Anchor and Rudder
I have just learned that my 81 year old father needs heart bypass surgery. When he told us (my brother and son along with their wives - by speaker phone from Maine to Florida during a routine "Hey Folks" telephone call) I think all our hearts stopped for a moment. Dad has been the glue that holds our family together for as long as any of us can remember. My mother is highly intelligent and wonderfully talented and has loved my brother and me with a desperate passion that confused us kids sometimes—but it never confused my father. He understands and loves her in a way that is the stuff of fairy tales. It's not easy to see but I have come to think, as I get older (along with her) that she knows this, even if she can't come right out and say it.
When I got sick, she just fell to pieces — but with Dad she shrugs it off. That used to make me crazy! She has a nearly pathological fear of weakness and dependency and yet my father is her anchor, something she is loathe to admit. Without his steady dependability we would have all floundered. It is also true that without her fierce ambitions we might never have left the harbor.
This is not about a marriage of over 55 years - although that certainly is noteworthy. It is about role-reversal and sickness and health and growing old. When I was first diagnosed with cancer I was a graduate student in Gerontology. I was 47 years old and felt I had finally figured out what I wanted to do when I grew up. At first I believed my illness was just a bump in the road - something easily negotiable. It has turned out to be a major detour and a pretty bumpy one at that. But it has brought a close family even closer. We are all great talkers and when I couldn't talk on the phone, the computer became a welcome resource. Even my mother and brother, until then resolutely resistant to its technology, became proficient in e-mail. I doubt that any of us take our family for granted anymore.
When I first found out I was sick, I told everyone I was fine. I did not want sympathy and I nearly forbade commiseration. In retrospect that was a mistake. When someone you love gets sick, you need to be needed. Because you are so powerless in the face of this illness, making soup can be important. My parents keep saying, "Oh, Honey, we are fine. We have lots of friends down here to help us out—Dad will be OK" These are the same people who used to drive three hours each way just to bring me home-cooked food when radiation treatment complications had laid me low.
I appreciated the food then and, of course, the love that brought it, but now I recognize their need. Now, I need to fly down to Florida and drive them to the hospital. I need to help my Mom go grocery shopping for the foods he will need when he comes home. I need to help her set up the bed so he doesn't have to climb the stairs. I need to be there to hold his hand and tell him jokes because she simply can not. In other words, I need to take care of them the way they have always taken care of me.
While we are on the subject of family, I want to say we have just found out that my darling daughter-in-law's brother is being deployed to Iraq. She and my son were just married in September and her brother was able to surprise her by getting leave for the wedding. Needless to say we are worried and proud and heartsick and confused. It has been an emotional week.
I didn't sleep well last night. But in the long run disease and war and old age are not what will do us in. It is loss of heart that we must rail against. Michael will come home safe and sound, my father will live to see his great grand-children and my mother and I will celebrate her birthday with an authentic Mexican dinner party on my patio.
There may be some of you who are wondering what this has to do with the lary life. I understand. It has nothing to do with being a lary. It has everything to do with plain old regular life. And we need to remember that we were plain old regulation issue human beings long before we were larys.
Although much has changed in our lives, the way we manage our daily routines requires adaptations and adjustments to activities, that most people take for granted. We are much less defined by the sound of our voices and the way we breathe than by our personalities, our intelligence and attitudes, our sense of humor (or lack thereof, in some cases), our style and hopefully joie de vivre!
When I spoke to Dad last night and told him I would be on a plane tomorrow, I could hear the relief in his voice. He doesn't care about the sound of my voice as long as he can hear it! So I told him a good joke.
What's the difference between God and a surgeon?
WHAT'S IN IT FOR ME?
Let's face it. Whether we like it or not, we are essentially living in a world where the general attitude is "What's in it for me?". Unfortunately, this attitude thrives even in our little "laryngectomee world". By that I mean that too many larys feel no need to belong to a support group, do hospital and post-op visits, or get involved in a tobacco education program. They feel they are doing quite nicely on their own and, besides, there's nothing in it for them.
Above courtesy of Mike Reed
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