Giselle Carnaby, PhD, MPH., CCC-SLP, F-ASHA, Professor of Speech Language Pathology and Internal Medicine, Director Center for Upper Aerodigestive Functions at the University of Central Florida talks about swallowing disorders and they are treated.
Interview conducted by Ivanhoe Broadcast News in February 2019.
What is a swallowing disorder and what causes it?
GISELLE CARNABY: Swallowing is probably one of the most complex neuro motor tasks a body can do. It takes about 26 muscles and nine cranial nerves, all integrated and synchronized to allow a swallow to occur. Swallowing occurs in less than a second, this is a very rapid, highly precise action. When we get injured from some area of the brain, through surgery that might disturb some of the muscles or nerves, or from accidents that might do the same thing, that precise timing and execution of swallowing can be altered. Sometimes it’s altered because of the direct damage and sometimes it’s altered because, as a patient starts to recover they try to help themselves, and the pattern isn’t as correct as it could be. That sort of inaccuracy can lead to difficulties with swallowing or generalized weakness that has resulted from not using the system the way it’s designed for a period of time. It can also cause a problem executing the swallow.
Can you give me some specific examples of causes?
GISELLE CARNABY: Stroke, Cancer, Neurological diseases, , and anterior cervical spine fusions sometimes cause this problem. Sometimes you will see it in patients who have had head trauma, patients who have are very old and debilitated. It affects people from the cradle to the grave; it affects babies as well. Different developmental syndromes, yes. There’s a whole host of reasons. It is often a sequelae or a result of multiple different disorders and/ or surgical interventions in diseases.
And how common is this?
GISELLE CARNABY: Very common. One in 17 people in the U.S. will have a swallowing problem. We estimate somewhere around 200,000 a year in the central Orlando area.
Can people drink at all or does it vary?
GISELLE CARNABY: It’s a spectrum of severity. It could be as simple as when I eat and drink, I have a strange feeling in my throat or it makes me cough every now and then, to I can’t swallow my own saliva.
If the case is severe, do they have to use feeding tubes?
GISELLE CARNABY: Yes. Most of the time there is some kind of alternate feeding system set up whether that’s a tube through your stomach or your nose.
How does this affect a patient’s day-to-day life?
GISELLE CARNABY: That’s the million dollar question but it’s also the part that is most concerning to us. Eating is an integral part of our human species; we eat to join friends and family, for celebration, comfort, or boredom. We eat for a range of different reasons and a lot of them are connected to who we are and our perception of health and well-being. When you can’t eat, it isolates you socially, emotionally, and physically. You feel that you don’t want to be in front of other people while you have to eat alternatively through your stomach tube, so it can encompass a range of embarrassments. I once had a family tell me when their young daughter had this kind of problem they felt so bad eating in front of her that they had a whole outdoor kitchen made; the family would eat in rotation outside of the house in order for her not to be exposed to eating or to smells associated with cooking food that she couldn’t swallow anymore. It completely destroyed their family feeding / eating environment. This can be devastating.
What is the standard treatment for this?
GISELLE CARNABY: The standard treatment varies from place to place. There is large area variability in what speech language pathologists and others do for people who have swallowing problems. Traditionally, we are encouraged to protect the patient at all costs and keep them safe and that meant changing what they ate and the way that they ate it on the whole. That was early on in the ’80s and ‘90s however, as we moved on in time, people started to add different techniques, maneuvers, or exercises that might assist but there wasn’t anything systematically going on in terms of treatment. A lot of patients weren’t getting the best benefit they could get out of treatment. Recently there has been a real change in advocacy for exercise-based interventions that make the patient work muscles and nerves that were previously not activated.
Could you give some examples of the exercises?
GISELLE CARNABY: In the literature you can find a range of different exercises that look weird and include lying on your back and raising your head to look at your feet. However, at the University of Central Florida and in our clinic, we use swallowing as an exercise for swallowing. We alter the properties of resistance and load upon the system to try and work the muscles of swallowing like you would work your arms and legs at a gym. We no longer view foods and fluids as a source of nutrition in that regard; we view them as barbells in the gym. We offer people different kinds of barbells at different rates and at different speeds and they require different efforts to swallow them as a way of manipulating the angle, direction, speed and effort of the muscles. Much like a physical therapist or personal trainer would do.
- And is this like a team approach? I know you work with your husband. So like who does what for the patient?
GISELLE CARNABY: It started out many years ago when we were working at University of Florida and this was a research-based project. We wanted to see if we would make a difference, if we could do these things, and after a lot of research, we found out that we did make a difference. When we took that approach, my husband Michael Crary did the primary assessments and I was blind to the results of the assessment except for two key pieces of information; I carried out the therapy. However, now that we’ve moved from research into generalized clinical practice that has changed; we will both be involved in the evaluation of the patient and identifying what strengths the patients still have left that we can leverage in therapy. Then predominantly, the daily therapy will rest with me and with the other speech language pathologist that we have working in the clinic here.
Can you talk to me about your research and what you found?
GISELLE CARNABY: The research started out testing patients who had been unsuccessful at all other forms of swallowing therapy. In other words, to get into our research and looking at this particular therapy mode, you had to have been unsuccessful more than once in the community or elsewhere. They were the patients most people had given up on and we thought if we could take the worst of the worst and make a difference, then this therapy had some teeth behind it. The theory was if we took chronic patients who were treatment refractory from all other types of treatment, and we worked the muscles in the system in this new manner, we could advance their ability to eat and drink independently. That’s where we began and people who thought they might never swallow again came to us from all over the world, so we proceeded to work with them. After we had done four different studies looking at different groups of chronic refractory patients, we noticed it was working and our results were more surprising than we expected. We then decided to try it on subacute stroke patients to see if we took a lot of patients, who weren’t chronic refractory, but were in the rehabilitation pipeline, could we make the same changes? In the end it was more successful in this mild to moderately impaired group than we had thought it might be.
How long does that take from the moment that someone comes to you and towards the end of the process?
GISELLE CARNABY: It depends on the patient’s difficulties. The program we originally tested was three weeks with the assessment being either side of that timeframe . It’s about three weeks and two days in total. The reason we pinpointed three weeks was that it was the average length of stay in a rehabilitation setting, so we wanted to mirror that and ask can we make a difference in three weeks? That’s what our research has been based on. Clinically, of course, that isn’t always the case; there are some patients who will take longer than three weeks, and there are other patients who take a lot shorter. Cynthia is one example of that; from the time we saw her, we evaluated her and brought her back. She only took a week, or just over a week, in daily intensive treatment to achieve a normal diet and be able to get to the point where she could have the PEG tube taken out. Other patients might take a little longer than three weeks, but we’ve never had anyone that’s been months and months.
I talked to Cynthia before her initial surgery. Can you tell me about how was she when she came to you?
GISELLE CARNABY: When we first saw Cynthia she was having difficulty with her voice because one side of her vocal cords was not moving as well as it had been prior. She had what we call a paretic true vocal cord. She also had weakness across the swallowing system, but in particular more one side than the other in the pharynx and further up in the system. When we evaluated her we noticed that she still had a lot of residual movement in the swallow system and that’s one of the key things we look for if a patient is a candidate. Is there enough residual movement? Can we leverage that movement through exercise to make a difference in her swallowing?
What is the success rate?
GISELLE CARNABY: For us now in our practice, we’ve had close to 90 percent success rate. We’ve had occasional patients we can’t help; patients whose doctor or God took away so much that there isn’t any viable muscle tissue left. If you’ve had surgery that takes away those kind of structures (such as head and neck cancer patients who’ve had major repairs done, whereby that is no longer viable muscle left), then we can’t replace that at all. In other words, there is a small section of the community where any kind of exercise-based intervention isn’t going to be successful. However, for those patients who have some residual movement in the swallow system, that have what we call some kind of form of a swallow, then this kind of therapy is very successful in that group.
From what you’ve seen how has this changed lives?
GISELLE CARNABY: The patients tell us that it has completely changed their life; that they have gotten their lives back. I think in particular, a young lady we saw from Australia who was previously an EMT. She was 28 and flew across to have this therapy; she had had therapy elsewhere and she’d been told that she would never swallow again. She came to us, so we treated her, and I remember having dinner with her and her family at the end of treatment, on the day that she left us. Her father was crying and said “you’ve given us our child back”. They were thrilled. She has gone on to get married and have a baby and a life that might not have been open to her, had she still been attached to her tube.
Is it life changing for you as well?
GISELLE CARNABY: Yes, that’s why we do it.
What are some of the exercises that you do?
GISELLE CARNABY: The beauty of the program is that the burden on the patient is very low. The patient will come to therapy thinking all they are doing is swallowing different kinds of food at different times. And their therapist is going to tell them when they can move to a different food and when they have to back off. So, if you think of the foods as barbells, it’s like going to the gym and lifting five pounds, then 10 pounds. Maybe your form wasn’t good on 10 pounds and the trainer will tell you to go back and try that form on five pound weight That’s exactly what we’re doing in therapy with food and fluid.
What are the foods?
GISELLE CARNABY: It’s a hierarchy of foods and it’s based on research that shows that different movements and different effort and timing is required with different materials. Some materials like liquids move quicker than materials like pudding. We leverage those different kinds of materials and as we go through the program and as the patient progresses, they start to choose their own materials. They choose things they like to eat that fit within certain categories, which we have researched that show it’s an increasing challenge to their swallowing system. The program is based on challenging the patient, pushing them to the point where their motor system has to recalibrate in order to manage, and if they can’t recalibrate, we step back. We let patients work at a different level and an easier level, and then we push them forward again. The best analogy is like learning to ride a bike. You fall off the bike, you get back on, and you make it a little bit easier; maybe you put your feet down for a while until you get your balance and you go again, and then you fall off so you make another adjustment. It’s exactly the same thing. The foods and fluids aren’t anything special; the research has identified which ones create more of a challenge to the system and therefore, the introduction and timing of that is the important part.
Is there anything that I did ask you that you want me to know?
GISELLE CARNABY: This particular therapy that we use has come out of 14 years of long hard research; It’s not an overnight thing. In that regard, it’s very heavily founded in the research data that we put together many years ago. As we see new cases, we have tweaked things and advanced it, and now we spend a lot of our time trying to get others to learn to do this particular technique. It’s not magic and it’s not outrageously different from what we do, but the way that you approach the patient, the way you evaluate them, and the way that the evaluation meshes with the treatment is different. Most of the speech pathologists we teach get it now and understand it is simple. It’s not that difficult, it is just a different way of thinking about things and approaching the patient in a slightly different mindset.
END OF INTERVIEW
This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.
If you would like more information, please contact:
Giselle Carnaby
407-823-3537
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