Hope for Dylan
Donation protected
Hi my name is Penny,
My son Dylan has had medical issues since he was a young boy, and as a result has had multiple surgeries and almost passed away in 2009.
He was just finally starting to get back on his feet after years of being ill when he had to have yet another sinus surgery in 2013. He had the misfortune of having his Nasal Turbinate’s removed during this last surgery. The result of which is a condition known as Empty Nose Syndrome (ENS). ENS is a highly debilitating and disabling condition caused by overly aggressive surgical damage of the vital nasal structures.
Nasal turbinates are organs of the nose within the nasal cavity, turbinates are the most important mucosal and moisture secreting structures of the nose, they serve to heat regulate, humidify, filter, pressurize, elevate and streamline the air that flows through the nose. The unique air-conditioning and processing conditions that the turbinates supply are not important only for proper lung function but also for keeping the health, function and integrity of the rest of the nasal mucosa. The turbinates, in particularly the inferior ones, also play a crucial role in protecting the pharynx and larynx from the effect of direct insult of airflow and dryness.
The turbinates are also heavily innervated with pressure sensing receptors that sense the airflow and thus notify the brain that enough air is traversing the nose to sustain life. If too much of these receptors are gone nasal breathing becomes unsatisfying. This is called ‘paradoxical obstruction’ and is very common in ENS. This lack of airflow sensation causes much distress and morbidity to the sense of well being.
The turbinates, especially the inferior ones, also provide most of the nasal resistance to the lungs. The lungs need some resistance to allow them to reach their proper inflation and deflation rates during inhalation and exhalation. The nose supplies 50% of the entire resistance to the lungs. The turbinates supply most of these 50%. Too little nasal resistance can cause similar pulmonary breathing difficulties and shortness of breath as too much resistance. Healthy nasal breathing is essential for maintaining all aspects of physical and mental health.
When turbinate’s are excessively resected or in my sons case nearly 100 percent removed, normal nasal physiology is lost. With the destruction and loss of nasal mucosa, the nose is left in a chronic state of painful dryness lacking necessary aerodynamic features, without the ability to sense air, motion, and temperature. Primary breathing difficulties are central to this condition with feelings of suffocation and shortness of breath.
Primary symptoms of Empty Nose Syndrome include paradoxical obstruction, suffocation, nasal dryness , bleeding, crusting, lack of sensation/ airflow, breathlessness, neuropathic pain/ nerve damage, difficulty sleeping, extreme fatigue, etc.
A 100% complete cure will only be available if and when the situation is reversed and the actual real tissues of the resected turbinates are regenerated or returned to the nose through means of regenerative medicine and/or tissue-engineering.
Until then other sufferers have had relief by having injections of PRP/ Matristem. These treatments are costly and will have to be done until there is a cure for this condition. This ENS treatment/therapy is not available in Canada.
My son has been suffering endlessly with this for almost four years and there is no escape! He battles everyday with this, one of the worst symptoms that he has is the suffocation because breathing is a 24-hour function of the body, so this is present with him everyday, every hour, every second.
He has been through more than most of us will ever see in a lifetime, with all that he has had to endure he always remained extremely strong and has always fought to keep going. He is now 24 and has yet to have a life, his sickness has taken him away from everything he has ever loved or wanted to accomplish, all he wants is to live and have a life!
As a mother to watch your child suffer year after year has been truly agonizing, there are no words to discribe the pain I feel on a daily basis. My heart aches for him every single minute of everyday, I'd give anything to trade places with him, and to take all the pain and suffering away.
It is extremely hard to ask for help but we have run out of options and cannot afford these treatments as we are still struggling trying to pay for the past medical bills. It would mean the world to me if I could give my son the gift of life, that he so desperately wants and deserves. I can see that his light is finally going dim and that he has had about all he can take, he needs help right away.
Thank you from the bottom of my heart for helping my son, we are eternally grateful to you all, without you there would be no hope.
Penny
Links:
http://www.emptynosesyndrome.org/what-is-ens/post-surgery-treatment-options/
My son Dylan has had medical issues since he was a young boy, and as a result has had multiple surgeries and almost passed away in 2009.
He was just finally starting to get back on his feet after years of being ill when he had to have yet another sinus surgery in 2013. He had the misfortune of having his Nasal Turbinate’s removed during this last surgery. The result of which is a condition known as Empty Nose Syndrome (ENS). ENS is a highly debilitating and disabling condition caused by overly aggressive surgical damage of the vital nasal structures.
Nasal turbinates are organs of the nose within the nasal cavity, turbinates are the most important mucosal and moisture secreting structures of the nose, they serve to heat regulate, humidify, filter, pressurize, elevate and streamline the air that flows through the nose. The unique air-conditioning and processing conditions that the turbinates supply are not important only for proper lung function but also for keeping the health, function and integrity of the rest of the nasal mucosa. The turbinates, in particularly the inferior ones, also play a crucial role in protecting the pharynx and larynx from the effect of direct insult of airflow and dryness.
The turbinates are also heavily innervated with pressure sensing receptors that sense the airflow and thus notify the brain that enough air is traversing the nose to sustain life. If too much of these receptors are gone nasal breathing becomes unsatisfying. This is called ‘paradoxical obstruction’ and is very common in ENS. This lack of airflow sensation causes much distress and morbidity to the sense of well being.
The turbinates, especially the inferior ones, also provide most of the nasal resistance to the lungs. The lungs need some resistance to allow them to reach their proper inflation and deflation rates during inhalation and exhalation. The nose supplies 50% of the entire resistance to the lungs. The turbinates supply most of these 50%. Too little nasal resistance can cause similar pulmonary breathing difficulties and shortness of breath as too much resistance. Healthy nasal breathing is essential for maintaining all aspects of physical and mental health.
When turbinate’s are excessively resected or in my sons case nearly 100 percent removed, normal nasal physiology is lost. With the destruction and loss of nasal mucosa, the nose is left in a chronic state of painful dryness lacking necessary aerodynamic features, without the ability to sense air, motion, and temperature. Primary breathing difficulties are central to this condition with feelings of suffocation and shortness of breath.
Primary symptoms of Empty Nose Syndrome include paradoxical obstruction, suffocation, nasal dryness , bleeding, crusting, lack of sensation/ airflow, breathlessness, neuropathic pain/ nerve damage, difficulty sleeping, extreme fatigue, etc.
A 100% complete cure will only be available if and when the situation is reversed and the actual real tissues of the resected turbinates are regenerated or returned to the nose through means of regenerative medicine and/or tissue-engineering.
Until then other sufferers have had relief by having injections of PRP/ Matristem. These treatments are costly and will have to be done until there is a cure for this condition. This ENS treatment/therapy is not available in Canada.
My son has been suffering endlessly with this for almost four years and there is no escape! He battles everyday with this, one of the worst symptoms that he has is the suffocation because breathing is a 24-hour function of the body, so this is present with him everyday, every hour, every second.
He has been through more than most of us will ever see in a lifetime, with all that he has had to endure he always remained extremely strong and has always fought to keep going. He is now 24 and has yet to have a life, his sickness has taken him away from everything he has ever loved or wanted to accomplish, all he wants is to live and have a life!
As a mother to watch your child suffer year after year has been truly agonizing, there are no words to discribe the pain I feel on a daily basis. My heart aches for him every single minute of everyday, I'd give anything to trade places with him, and to take all the pain and suffering away.
It is extremely hard to ask for help but we have run out of options and cannot afford these treatments as we are still struggling trying to pay for the past medical bills. It would mean the world to me if I could give my son the gift of life, that he so desperately wants and deserves. I can see that his light is finally going dim and that he has had about all he can take, he needs help right away.
Thank you from the bottom of my heart for helping my son, we are eternally grateful to you all, without you there would be no hope.
Penny
Links:
http://www.emptynosesyndrome.org/what-is-ens/post-surgery-treatment-options/
Organizer
Penny Nielsen
Organizer
Cochrane, AB
