|
|
I said to myself, "There is something happening here." Johnny, 51. Stroke
Chattanooga, TN
At first I did not know I had had a stroke. On the day it happened, I suddenly could not walk and would get dizzy and fall every time I would try. I couldn't swallow anything, not even water.
At the hospital, where they told me what had happened to me, they put a tube into my nose to give me food. Then, before I was transferred to Chattanooga Rehabilitation Hospital for therapy, they put a tube in my stomach to feed me.
The doctors told me that there was a chance they would have to do surgery to stretch my throat so that I could eat by mouth again, but they also told me I should try the VitalStim first.
I didn't believe it because I didn't think that a machine would work. But they convinced me it would, so I went along and had therapy for 30 minutes a day, every day for two weeks.
When they put the electrodes on my throat it felt like someone was grabbing my throat and moving it up and down for me. I started eating ice and swallowing during the first session.
I said to myself, "There is something happening here."
It got better and better. I drank water. I tried pureed food and I swallowed it. Then bread. Salads. Crackers. Ice cream. A little bit of this. A little bit of that.
Now I am off the tube. There are some things I still can't eat. I can't get French fries down. Cheese gets stuck at the back of my throat.
But other than that, I am getting back to normal. It's a miracle.
|
|
We have seen more progress in just a few months with VitalStim than in all the previous five years with other therapies. Jordan, 6 years. Choroid plexus carcinoma.
Father, Willie - Lynnwood, WA
When Jordan was only seven-and-a-half months old he had surgery to remove a highly malignant brain tumor. For the next three years he battled the disease through two recurrences, a second operation as well as several courses of radiation and chemotherapy.
At one point we were told he had only nine months to live and even took him to Disney World on a trip sponsored by the Make-A-Wish Foundation.
His cancer eventually disappeared, but it left him with a terrible legacy: During his first surgery his vagal nerve was nicked, depriving him of his ability to swallow.
From almost the moment he emerged from that first operation he has been on a feeding tube. During the five years following his surgery he had speech and swallowing therapy, but with little effect. Every swallowing test showed that he was aspirating food.
We were left to wonder if he would ever eat normally again.
Then, a few months before his sixth birthday, we received a newsletter from the Medalia Medical Group, which is part of the Providence Everett Medical Center in Silver Lake here in Washington, announcing that Medalia had started to offer VitalStim Therapy.
Under the supervision of Marcy Freed, who had joined the Medalia Group, Jordan went through 15 treatments. At his sixth birthday he was able to eat ice cream and cake frosting without any problems.
Jordan still does not have the chewing thing down yet and is still getting most of his nutrition through the feeding tube. But he continues with VitalStim Therapy once a week to retrain his swallowing muscles and build up their strength. Recently he has gotten to the point where he can drink chocolate milk.
He is excited about that, but he still does not ask for food, because it is still a lot of work for him. We think it will take another year before he is totally comfortable with eating normally. However, we have seen more progress in just a few months with VitalStim than in all the previous five years with other therapies.
|
|
It was difficult to be around people who were eating. It got to the point where I did not even want to walk into a grocery store with its aromas and all the food you see you want to eat. Ed, 59 years. Brainstem Stroke.
Pittsburgh, PA
I had gotten to Bruges, Belgium on a Sunday in October 2002 to start a three-to-six-month business trip and headed right out to see what is one of the most picturesque medieval cities in Europe. I had Belgian waffles and tried three different kinds of beer.
Reading in bed that night I started sweating, getting nauseous. I thought I had food poisoning. The doctor sent up by the hotel thought I had a virus. It turned out to be a stroke that left me numb on my right side and robbed me of the ability to swallow.
When I left the hospital in Belgium and came home, I was swallowing liquids and some pureed foods. But when I entered the hospital in Pennsylvania, tests showed that I was aspirating while eating. I was told to stop swallowing foods and liquids, then referred for traditional swallowing therapy.
I had to be hospitalized twice. Once because I developed pneumonia. Once because I developed a stress ulcer, largely the result of not being able to eat because I was not making progress with my swallowing. My muscles atrophied. My weight dropped from 240 to 160.
Psychologically, I was not doing well either. It was difficult to be around people who were eating. I did not even want to walk into a grocery store with its aromas and all the food you see you want to eat.
I tried swallowing therapy again, but in February 2003, after two months I was told that I was not responding and could not be helped.
Unwilling to give up, I went to another swallowing expert who injected Botox into my throat and dilated my esophagus. That helped me get some liquids down about half the time. But even that little progress came at a price. I was still aspirating and was on the verge of getting pneumonia twice.
I was sitting at home one day, watching TV and saw something on the local news about VitalStim. I immediately called Denise Dougherty, who had been interviewed on the program. Even though at that point my throat muscles had been at a standstill for months and had atrophied, she thought they could help me.
Between October 2003 and late February 2004, with the VitalStim exercises and some throat dilation, she got me to a point where I could swallow thin liquids at home without aspirating at all. And when I am on the VitalStim at the hospital I can manage hard cookies, if I take them with coffee.
I am still undergoing therapy. I am still on a feeding tube because I can't swallow enough to sustain life and I get my medications through it.
But the improvement has been marked. I have a lot of hope that eventually I will be able to get off the tube.
|
|
To celebrate, my daughter took me to a restaurant where I had a good, long drink of water and ate ice cream. Della, 67. Stroke
Ford City, PA
After my stroke in April 2003 I could eat regular food, but the doctor saw that I was having trouble drinking thin liquids. He told me I could aspirate and develop pneumonia.
While I was still in the hospital, he suggested I have VitalStim Therapy to learn how to swallow thin liquids again. After the second treatment I said, 'That's it, no more!' I didn't like how it felt, as if someone were grabbing me by the throat.
After I went home I was allowed to have tomato juice or soda because those did not give me trouble if I swallowed them. But before I could drink water or coffee I had to mix them with powder to thicken them.
Don't ask what that tasted like. Bad enough that I stopped drinking water.
After three months of drinking only tomato juice and soda, I decided to try the VitalStim again. It was nothing and the hour -- during which I licked lollipops to help me learn to swallow liquids quickly - went quickly.
After 12 treatments I failed a barium swallow test, so I had another 12 or 13 treatments. After that set, I finally passed the swallow test.
To celebrate, my daughter took me to a restaurant where I had a good, long drink of water and ate ice cream.
I'm fine now and glad I decided to try VitalStim.
|
|
During the first session I was able to orally ingest ice chips and pieces of cookies. My wife's jaw dropped. Lee, 62. Cancer of the tongue.
New York, NY
I am an athletic guy who never smoked. But on April Fool's Day, 2002, an ENT specialist I consulted about a throat problem told me I had a cancer at the base of my tongue.
In quick order I learned that I would have to have radiation and chemotherapy, that I would have to have a stomach tube inserted in my stomach in case the radiation to my throat were to affect my ability to swallow and that I might have to live with it for the rest of my life. That was a serious blow to someone like me, a serious eating and cooking enthusiast.
The prediction came true.
After just 10 days of radiation, I lost my ability to swallow. I continued to cook tasty dinners for my wife - whose patience, cheerfulness and courage helped me through my cancer ordeal - but could not share them. When we went to restaurants, I had to make excuses to the waiter and watch others eat.
The stomach tube saved me from malnutrition - or worse--but I wanted desperately to be off it and eating like a human being again.
The prognosis, though, was grim. Exercises that had been prescribed to strengthen my swallowing muscles were of no help. Six months after the end of treatment, I was still unable to take anything by mouth.
At that point it dawned on me that I had to become aggressively proactive. Consultations with a cancer surgeon and a speech pathologist at Yale-New Haven Medical Center lead me to University Hospital in Cleveland in search of VitalStim, a new therapy that had just been approved by the FDA.
During the very first one-hour session with Marcy Freed, who developed the therapy, I was able to swallow ice chips and pieces of cookies. My wife's jaw dropped.
Around me, as I went through additional sessions, I watched other patients, one by one, finding that they were able to eat again. Among them was one young kid who was eating again within three days - and whose own doctors had also told his parents he would never eat again.
Still, because the cancer therapy had severely damaged my esophagus, I did not progress much further, even though I went through 10 hours of treatment. Freed and a gastroenterologist at the University Hospital suggested an esophageal dilation. That and my newly strengthened swallowing muscles allowed me to drink thin liquids. Progress at last! Soon after, I was able to start on foods such as eggs and cereal.
Gradually, I was weaned off the stomach tube and then finally had it removed.
I've put 10 pounds back on, and that's as much as I want - or need. The docs are pleased with what they see, and one calls my recovery from severe dysphagia to normal diet in four months "remarkable."
True, the esophageal dilation, as well as some medications prescribed to reduce swelling of the esophagus and to get rid of mucous in the canal all contributed to my recovery.
But the VitalStim was key. VitalStim started me on the road to recovery. It showed me that it was possible to swallow again, even if all the odds seemed against it.