|Name Of Column||Author||Title||Article Type|
|Musings From The President||Murray Allan||Dutch||News & Events|
|Voice Points||Dr. Jeff Searl||P2 Neck Tissue Changes||Education-Med|
|Between Friends||Donna McGary||Our Tribe||Experiences|
|Jambalaya||Jewell Hoffman||New Orleans & Katrina||Experiences|
|Vicki's Midnight Train||Vicki Eorio||Med Pros Need Help||Experiences|
|Bits, Buts, & Bytes||Dutch||Computer Tips||Experiences|
|New Members||Listing||Welcome||News & Events|
PART II: Neck Tissues that Change Over Time
The May VoicePoints column focused on changes in neck tissues in the months or even years post-total laryngectomy. The primary focus was a presentation of the more likely tissue changes that speech-language pathologists (SLPs) are likely to see including changes in stoma size, unusual healing along suture lines, and development of unwanted openings (fistula), among others. I had alluded to a particular patient who experienced a host of unfortunate and unusual changes in her neck that forced all involved to be persistent and flexible in the speech rehabilitation process. Her name is MJ and what follows below is her story. My hope is that her experiences can serve as a learning opportunity, and also and inspiration for SLPs and laryngectomees alike. I listed my Lessons Learned at the end. You might see several others.
MJ was 47 years old when she underwent a total laryngectomy to manage her laryngeal cancer. This was a recurrence of laryngeal cancer that was first identified three years early. At the initial diagnosis she underwent a fairly routine course of radiation therapy that appeared to have taken care of the problem. When I first met MJ, she was two years past her total laryngectomy, having been followed by another SLP prior to that. She was using an artificial larynx held in her right hand with placement on her left cheek. She was not particularly good with the artificial larynx (AL) — frankly, she was downright poor at it. Cheek placement of an AL is usually not as conducive to good intelligibility with an AL in my experience (although there are exceptions) and crossing the midline of the body with the right hand to the left cheek is something that I would have avoided, but I thought perhaps there was a reason. As it turned out, there wasn't, but we learned that subsequently and fixed it quickly. However, what struck me more than the cheek AL usage was the presence of a trach tube in the stoma. As most here know, a trach tube is not routinely needed in the stoma unless there have been some particular problems such as a stoma that shrinks. The more striking thing than just the presence of the trach tube, was that it appeared to be pointing not straight out from the stoma but at about a 45 degree angle toward the left shoulder. So we backtracked to get the full story.
Immediately following the laryngectomy surgery she experienced difficulty breathing because of significant stoma shrinkage. A trach tube was placed at that time (now 3 years ago). She started with AL training shortly thereafter. I don't have all of the details, other than from MJ, but it sounds as if neck placement never resulted in a good sound. Cheek placement was trained, as were some bad habits including "pulsed" speech (AL on/off for each word produced) and less than ideal articulatory precision. In fairness to the prior SLP, MJ did not regularly attend therapy and the AL outcome may have been compromised because of that.
Six months after surgery, weaning from the trach tube was underway and the stoma issues had stabilized. The doctor pulled out the trach tube. Shortly thereafter, she underwent a secondary tracheoesophageal (TE) puncture and MJ got decent voice immediately. She apparently went about her way with useable speech, but not any additional therapy. Unfortunately, just two months after the TE puncture, the size of her stoma started to shrink, getting as small as 2-3 mm in diameter. Stomoplasty — a surgical procedure to increase the size of the stoma in this case — was completed. The surgery worked for about 4 months when some slight stoma shrinkage was noted again. A stoma button was attempted with success — she could get good hands free speech and the button also served to help keep the stoma open. But her darn stoma just wouldn't comply. After a few months, the button was not rigid enough to keep the stoma from shrinking again and the trach tube was placed once again. The TE prosthesis apparently was left in pace also. Unfortunately no further modifications to the trach tube (i.e., fenestration — poking holes in on part to allow airflow into the TE prosthesis) or other types of tubes were attempted, so she was unable to use the prosthesis that was in place.
Then MJ went away. From looking at her ENT chart, it looks like she was simply "lost to follow-up". This can mean lots of things: the patient chose not to keep appointments, the clinic cancelled one appointment for some reason and failed to reschedule another, the patient moved away, etc. In MJ's case, she felt a bit hopeless and she described feeling a sense that nothing positive was happening at her visits, so she gave up for a bit. I can't say that I blame her after all she had gone through.
Fortunately, she rallied — laryngectomees are known for this in my experience — and returned to the clinic after about 9 months. This is when I was asked to see her. Trach tube was in place, but now canted off to the left. She said it happened gradually. So gradually, in fact, that she wasn't really even aware of it even though I, the nurse, and the ENT saw it right away. At this visit she wasn't sure if the TE prosthesis was in place and the cheek-placed AL was her sole form of communication. Her knowledge of what was in her neck was not great and at this appointment she spoke of the TE prosthesis and the trach tube interchangeably. Educating her about her own neck was one of our very first goals in the therapy that followed.
She came back because she wanted to get the trach tube out of her neck. We obliged her at least so that we could see what she had in there. Lo and behold, we didn't see a TE prosthesis, but she insisted she had never pulled it out herself (and there was no note of having it taken out during a past ENT or speech visit). I asked her to lay back in the exam chair and extend her neck. There was a TE prosthesis in there but it was just barely visible on the back wall of the trachea about 1 1/2 inches below the lower edge of the stoma! We thought perhaps the trach tube might have been putting some constant pressure on the prosthesis and the tissue tract that it sits in, causing it to go south over time. Or maybe there was some continued healing or other tissue breakdown in the neck since she was last seen but her medical review did not highlight anything of interest (no more radiation, no diabetes, no blood supply issues, no strange sensations or lumps or bumps, no dysphagia, (swallowing problems) leaving us to think more strongly towards trach tube pressure as the culprit.
The migration of the prosthesis was so great that we could not really evaluate it visually to see how it had held up or to attempt cleaning it in situ (that is, while still in the neck). Attempts at getting voice with the trach tube out and the digital occlusion of the stoma did not result in voice after repeated trials. The easy decision was to pull the TE prosthesis out. Even assuming that the trach tube could be removed for long periods of time (or permanently), the TE puncture site was so low that routine care would not be possible. We had a difficult enough time trying to get a hemostat clamped onto the prosthesis and pulled out that we had little hope of re-inserting one (although I admit I tried it anyway).
So we had a puncture site migrating south possibly because of chronic pressure from the trach tube (though that was a guess) and a stoma that had turned to the left. We weren't sure why but moved ahead with a plan that would address her goal of getting rid of the trach tube. We also convinced her of the need to refine her AL speech and/or consider esophageal speech. She continued to hold out hope for another TE puncture but knew that the ENT's resolve was firm, that no more holes would be poked into her neck until her neck tissue remained stable.
With the TE prosthesis removed, the puncture site was allowed to close as MJ was enrolled in SLP therapy. We were able to clean up her AL speech to the point where she was understandable in face-to-face communication (nearly 90% intelligibility on most days we formally measured it). We never did find a better sound producing spot on the neck or under her chin so we settled for adjusting her position on the cheek, sharpening up her articulation and eliminating the on-off pulsing of the AL on each word.
After a month we also convinced her to try some esophageal speech (ES). Turns out that she was a pretty fast learner and within another 2 weeks MJ could produce 3-4 syllables per injection of air — she used a press maneuver with her tongue to force air into the esophagus. Throughout the now 6 weeks of therapy she had been taking the trach tube out for increasingly longer periods of time. After 6 weeks, she was at the point were she could leave it out for most of the day and only put it back in at nighttime. Things were looking up as she got closer to her goal of "no more trach" and her speech was better than it had been for the past two years.
But, her neck wouldn't sit still in all sorts of ways. Because we were seeing her regularly again, we could track things more carefully and here is what happened following the 6 weeks of speech therapy:
1. Her success, with trach tube weaning, did plateau for about two months. She was OK with this as she was tube free during the day. But stoma shrinkage started again and it came on quickly, necessitating an emergency room visit because of trouble breathing one day without the tube in place. We've tried two more courses of weaning her in the past year without success and another stomaplasty is planned.
2. While the stoma wanted to close, her old TE puncture didn't. After pulling out a TE prosthesis most folks' necks will close the puncture site spontaneously within a few days. In MJ's case, that seemed to have happened. No leakage was seen into the trachea at the puncture site during water swallows (we slipped a flexible scope a bit inside the trachea to get a good view); no coughing during meals; looked like we could see the site were tissue had closed. But a few weeks after getting to the 3-4 syllable stage in esophageal speech training, MJ reported that she was starting to cough during meals, usually when drinking. Sure enough, we watched her take a drink — she coughed. We watched her drink with the small scope peering into the trachea. We could see drops of liquid squeezing out of the back wall of the trachea. We suspected that maybe the esophageal speech training might be partly to blame. Perhaps there were higher air pressures being generated in the esophagus during ES that put undue pressure on the puncture site tissue that was trying to heal (again, we were just guessing). A little silver nitrate stick was used to chemically burn the pin hole opening, causing it to scar a bit and hopefully plug the hole. It did but only for a few days. Eventually MJ had to go in for surgical closure of the small tract. As a precaution, we halted ES training and have not yet re-initiated it.
3. Her stoma not only kept wanting to shrink shut, but it also turned even further to the left from the time that therapy was initiated for AL and ES training through the next 6-9 months. It finally settled in a spot projecting about 75 degrees off to the left shoulder. There were no breathing problems or swallowing trouble. There wasn't much of anything that the doctors could specifically point to that explained the shift — prior radiation, unusual tensions from the initial suture lines and scars, neck tissue breakdown from disease, etc. The doctors continue to watch her closely. MJ continues to not worry too much about it because there isn't a lot to be done (and perhaps not a lot of reason to do anything). She just wants the trach tube out for good.
Where we stand at the moment is that MJ is breathing well with a trach tube in place but another stomaplasty scheduled. Hopefully the next reconstruction can take care of the shrinking stoma issue. Some keratosis/scarring on the neck might also be reduced, if the surgeon is feeling brave, more because of MJ's concern about the looks than anything else. The extra scarring on the outside of the neck made us wonder what was happening on the inside though. She has much better AL speech than she did previously and she holds out hope for the possibility of another TE puncture in the future. This seemed to have been a good voice for her in the past and might be again with some assurance that the puncture site won't slip down again. She also knows some esophageal speech although we have been reluctant to turn her lose using it since the TE puncture site leakage. We may ease our way back toward that in the future.
MJ wasn't a tough case from a disease control standpoint. She has been healthy throughout this whole process. While she had a lengthy dip in her motivation to keep up with medical care, she has since found new resolve to keep on top of everything related to her prior surgery and her neck. She has a strong spirit and a willingness to keep pushing ahead. All of this makes her easy to work with. But her presentation in the clinic and course of care forced me, the ENT and MJ to do a lot of thinking (and guessing). I can't say the three of us always felt the brightest as we worked through the issues. Hopefully though we have tucked away a few nuggets that might serve us as we care for future patients. Here are some that come to mind:
LESSONS THAT MJ's ORDEAL HAVE DRIVEN HOME FOR ME:
1. "Lost to follow-up" is not an option for laryngectomees. Routine care, even when things appear to be going well is a must. As an SLP we have to stress that to folks and make strong attempts to keep everyone "in the fold".
2. Always train good AL speech! MJ needed to learn each of the three primary alaryngeal speech options somewhere along the way. SLPs have to be ready to teach any or all of the three to a given patient.
3. Some stomas will always shrink — this is an ongoing battle, for certain patients, which takes teamwork between the patient, SLP and ENT. Communication becomes even more critical when a laryngectomee is having medical concerns such as stoma shrinkage.
4. Neck tissues can change in a number of ways, even within the same patient. These changes usually happen early on, but not always. MJ's neck was still shifting several years after the surgery. We only wish we knew why in her specific case.
5. Sometimes we can't pinpoint why the tissues move and change, but we still have to deal with the consequences.
6. If the patient wants to keep getting better at their AL speech, keep working with them; if they don't want to get better but they really need to, convince them to keep working with you. MJ wasn't necessarily interested in improving her AL speech when I first saw her. However, she really needed to. Even she would admit that now. I do not usually condone badgering a patient into more therapy, but some heavy handed encouragement might be needed at times.
When I was a Girl Scout many years ago, I learned that song - meant to be sung as a round. It was best done around a campfire at sleepover camp where you did make many new friends and fortified old ones. I did not love school - I did well enough but always felt just a bit out of place. I was not one of the "popular kids" but I wasn't unpopular, either. Nor, thankfully, was I picked on- which has to be one of the worst fates ever to befall a child. But at summer camp, I was in my element! I was free to re-invent myself—to be bravely non-conformist—even a bit rascally! During the school year I was the Superintendent's daughter, at camp I could be the "Merry Prankster". There is camaraderie in the conspiracy that we feel when we break away from our everyday lives with other people who are doing the very same thing.
My home in New Orleans sat in 10 ft. of water for almost 3 weeks. I lived in an area called "Lakeview" which was near Lake Pontchartrain. The 17th Street Canal broke and thus........the water. I had only moved back to New Orleans by then, for 8 months. I lost all of my personal belongings, much memorabilia, all of my clothes, and things I haven't even realized yet. I was able to save china, crystal and many what-nots, although many things were broken from things floating around and banging against things. I lost all my phone numbers and addresses, and am still gathering together those kinds of things. After Katrina, we stayed on my good friends house boat in Belle River, LA for over 3 weeks. Two of my daughters that were still in college, were there also, and my Mother. My Mother lost everything also, many family members and friends in Mississippi, including my father who was living in Bay St. Louis and was hit by a 32 ft. wave. We found out my father was alive on CNN days later. I had been constantly trying to call my brothers to see where my Dad was. The day before Katrina, he had taken his 48 ft. steel boat from Back Bay, Bay St. Louis to put it in Back Bay, Biloxi for protection. Unfortunately, he had gotten bad gas, and during his trip across the Gulf to Biloxi Bay, he ran out of filters, which rendered his boat inoperable. My Dad rode out the hurricane on his boat, with his two dogs, and landed across Hwy. 90 on the Biloxi beach across from the Hard Rock Casino. Fortunately for my 80 year old father, he is tough and had been a seaman since he was 14 and a River Pilot. He told me he spent 26 hours at the wheel, and when the boat kept slamming into the Casino and throwing him down, he knew if he didn't get up, it would be over for him. The name of my Dad's boat is the "Luna Sea" and Katy Couric and all of the interviewers teased him about this. His boat is almost restored now, because of all his hard work. He is testifying for the Hard Rock Casino, that if it were not for the WIND, there would be NO water. Many people are fighting with the insurance companies about this exact thing.
To continue, while waiting to find out the fate of New Orleans, our family and friends - because communication was terrible - my daughters joined my dear friend Jeanne, who is a nurse, in helping those people rescued from New Orleans. They were at the LSU football field, where the helicopters brought in survivors. My daughter Christina was helping all the elderly. She said they came in covered in mud, and she helped to get them cleaned up, and to get something to eat. My daughter Tricia was helping all the orphans that were brought in, that could not find their families. She played with them, and said that it was very sad to see how alone they were, not knowing if their families were dead or alive. I spent most of my time "trying" to get in touch with family, friends and FEMA and Red Cross.
For my age, I have survived a lot. At the age of 11 we lost everything to Hurricane Camille. I grew up in Long Beach, Mississippi. 12 years ago, my home in Slidell got flooded in the "100 year flood". All seven of us had to live outside of the house, while I worked with contractors to repair our home, for 9 months. My 5 children were troopers. And now, with Katrina, we were fortunate in that we had NOT sold our home yet in Slidell. It was not the same one that got flooded years ago - Thank God. So our house in Slidell only had roof damage. The house was empty, but at least it was a house, and NOT a trailer. We bought furniture, and that is where I am today. Luckily in the back yard, we have a pool, and so I had my husband clean the pool - it was full of roof tiles, branches and trash - so that we could use it to clean the stuff we brought in from the house in New Orleans. I figured we could put the glassware and such in plastic laundry baskets, lower them into the water so that the chlorine would kill the germs, and scrub them. From that point, the baskets were put by the back door, where I brought them in, and again washed them in the kitchen sink. This process went on for 4 1/2 months on a daily basis, before I had enough. I also spent my days trying to save cloth heirlooms from several generations, that had rust on them, and had been eaten away at by the water. Patchwork quilts, tablecloths, needlepoint, crewel work, things like this were difficult to try to save. Some things made it, some did not. It is very sad. But I was determined to save what I could for my children, since most all of my family heritage had been lost in Camille. I cannot tell you all the old photos that have been lost forever. So very sad.
Today, my house sits in the quiet, vacant neighborhood, along with many others. Many people still don't know what to do. Some have moved forever, and will be selling their property. Property that was once worth $450,000 is now only worth $150,000 for the land value. Since the neighborhood is highly desirable, a lot of Yuppies are buying the property, tearing down the homes, and will be rebuilding. There were many people that were elderly here in this neighborhood, who will never return to their homes. By the same token, they have lost the value of their homes to put towards their retirement, and so their plans for their final days have changed dramatically. We are still working on a loss of contents list, that is now already 100 pages long. I am still looking for a lavaliere that my mother had just given me for my birthday, that had been given to her by her godfather, who was a jeweler, and had made it for her when she was a child. Things are melted together - meshed. It is difficult to purge through things. It will be years before we really realize what has been lost. We have decided to bulldoze the house and rebuild higher up - about 10 to 12 feet - and put in an elevator. I personally am tired of losing things to water. This will be the last effort in my life to save things. I'm finished now. I turn it over to my children. Although I am fine, and have endured, it is painful. This time, in Mississippi, I lost my childhood home, church, schools, landmarks and memories are stripped - gone. The Gulf Coast looks like an atomic bomb went off.
I took a lot of photos that would render one speechless. The devastation will take many years to repair and rebuild. So many of us have losses, that we are really able to console one another, and even make jokes about things. You cannot lose your sense of humor. We will rebuild. We are survivors. Life will go on. One day, this will all be, just an old memory. We have each other, and that is more important than anything. We support, we commune, we joke, we play, and we work together to rebuild. Life goes on.
I do need to let everyone know, that the city of New Orleans, the French Quarter, the antebellum homes were all spared devastation. Please come to New Orleans and visit, and party and have fun. We need our tourists to come back and help us by enjoying themselves, and our great cuisine. Many casinos on the Gulf Coast have reopened too. LOL!! The South will rise again! God Bless!
Do Medical Providers Need Our Help?
A community that is a big part of my life is that of my medical providers. They cover the spectrum from Primary Care Provider to specialists to outpatient facilities. And they vary in their skills, communication style, and attitude toward me as a lary.
An awareness, that needs to be accepted by us, is that we don't have the type of cancer that has a lot of fund raisers or spokespersons but since we have visible and permanent body changes, we can not be ignored. If we resist the temptation to become self absorbed and, instead, focus on acting as living, walking, highly visible representatives of the effects of cancer we need to do it even if we find it difficult. I have many stories to share with you about returning to the work place that I'll be writing about in the future.
Although I live in a metropolitan area with excellent health care facilities and since I used to be a caregiver, I know the system. But I am too frequently surprised and frightened by the lack of knowledge about larys on the part of health care providers and allied professionals. Two things happened in the last two weeks that reinforced those concerns.
The previous owners of our home had children who are now adults and have had problems functioning within the law. The previous owners went so far as to warn us about them, saying that the children would be upset that the house had been sold and they had not gotten any money. Bottom line, in our mail box, there were two letters addressed to two of the children from a credit card company. So obviously the children had used our address and must have planned to access our mailbox (out on the street) to check for their mail. My husband called the police. During their discussion, my husband said that I was a neck breather and should we contact the local fire station or ambulance service about putting a flag on our phone number and address. The response was that it would not make any difference. We needed to rely on the sticker on the door, on our refrigerator, and on the car (thank you Mr. Lauder and Dutch!). He said that if I was in an accident and unconscious, the first responders would not necessarily look for a bracelet but would notice the bright orange sticker on the car window and also on the visor.
I had to have an endoscopy last week. Not the first and probably not the last. Based on past experience of the staff never having seen a laryngectomee, we assumed that we would have to do an "in-service" for the staff at the outpatient facility. So my husband put together a mini-book with the diagrams of a TEP that show where the prosthesis is located, the instructions about how to deal with a neck breather if oxygen would be needed, and an overview of the challenges of being a neck breather. Well, we were correct. The staff was outstanding but clueless about neck breathers and of course had no idea about a TEP. So I did my now routine in-service. And much to my surprise, the nurses brought in other staff including the supervisor of the unit and a respiratory therapist. I haven't had folks look at me and my stoma that intently since I had my last check-up at M D Anderson! We left the educational materials and my phone number with them if they have questions or similar patients and need a refresher session. I can only hope for a trickle down process where they discuss what they learned with families and friends and that chain of communication continues.
So where am I going? Well, hopefully, if you follow the advice from Pat Sanders and Dutch and other key folks on the website, you will be miles ahead, as contrasted to doing it alone. I signed on WW when I was 3 days post op, still in the hospital, and have tried to keep up but with mixed success for the last 6 years. My fault.
Some of the themes they consistently communicate and I believe are valid because I have practiced them with varying degrees of success (based on my energy level) include:
1. Learn how to do everything related to the care of your stoma, your health status and everything related to your ability to function and to promote better outcomes. Dr. Jan Lewin from MDA, a speech pathologist, said that repeatedly. It was not until we were forced to acknowledge that few, if any, of our health care providers knew more than we did about the stoma and any speech aids. We have found ourselves educating them about laryngeal cancer and neck breathers. Every time that happens, we remember her words. This includes continuing to educate yourself and your caregiver by following the informational articles and the tips published on the WW site. Try surfing the Web on your own! If you find something new or controversial, sent it to Pat. She is like a dog with a bone, if it helps us, she will track it down and validate it.2. Doggone it, be assertive! I know how difficult this is. We feel we are at the mercy of our health care providers but, folks, it is time to get out of that way of thinking. We are educated, smart, hurting patients who know more about our bodies and how our bodies react to things and what state of health we are in, better than anyone else! Ask the question of your doctor, "Do you know about my stoma, how my Servox works, my fistula, my reflux, my TEP, my struggle"? If he says yes, ask him to give it back to you so you can valid it. There are quirks like our susceptibility to yeast, our difficult with allergies, the hours involved in doing stoma care, our inability to smell, the lack of our natural filtering system (called the upper respiratory system), and our propensity to suffer from reflux. Remember, the provider works for you and you MUST be involved. Your tax dollars (Medicare, Medicaid, or a combination) or your insurance (something you and your employer fund) pay for a medical professional to give you care. YOU are the consumer. YOU are directly or indirectly paying the bill. THEY work for you. So please do not just accept care recommendations—orders for tests or prescriptions without asking "Why"? If you are too tired or too ill, have your care giver do this. Have that caregiver get on WW and get educated. Have them write an email to the email list to ask for assistance.
Use any opportunity that is comfortable for you to educate health care professionals, children, neighbors, Church members—the population needing to understand us is unlimited. We get back in care what we expend in education.
More POSITIVES that result from a POSITIVE outlook!!!!
Hopefully enjoyable for not only those who took part in this magnificent Alaskan Adventure between 1 and 12 June, but also for those who did not, we have just posted a good number (over 130) of marvelous pictures to our web site. All the photos were taken by our cruise participants ... no professionals ... yet the beauty and majesty of this Northern Wonderland shines through in all of them. You can access this superb collection of photographs beginning at: http://www.webwhispers.org/pages/cruise/2006CruisePix_1.htm . Because of the large number of photos on each page, these pages take a while to fully load on your computer ... so, be patient ... your patience will be rewarded!!
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