Shortness of breath or a dry cough that just won’t go away? You know something doesn’t feel right — and you’re ready to understand what’s behind it.
These symptoms appear in many common respiratory conditions, like asthma and chronic obstructive pulmonary disease (COPD). They can also point to less common conditions, like diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH). Early on, DIPNECH can look a lot like asthma or COPD, which can make it harder to get clear answers.
Cleveland Clinic is one of the first academic medical centers with dedicated specialists focused on diagnosing and treating DIPNECH. Our team works to truly understand what’s going on in your body, using advanced tests and treatments that may not be widely available. From the moment you reach out, through every step ahead, you’ll get the expert support and guidance you need.
Our approach to treating and managing DIPNECH focuses on you. Together, we find the tests and treatments that make the most sense. Some go beyond the usual care used for common lung conditions. For example, while inhalers may still be part of your plan, we sometimes also use injections (somatostatin analogs or SSAs) as part of your treatment.
If you have DIPNECH, maybe you feel like you haven’t been heard, or you’ve tried treatments that haven’t helped. Our team is here to listen. We’ll make sure you get a clear diagnosis and care that fits your needs. We’ll work with you to manage and understand your condition. Meet our team.
As we treat more and more people with DIPNECH, we’ve been studying and analyzing treatment methods and results even more in-depth. We also work closely with other medical centers to publish research articles.
We believe DIPNECH treatment works best when specialists from different areas of medicine work together. From pulmonologists to pathologists, our coordinated team meets regularly to go over your test results, confirm your diagnosis, plan your treatment and keep an eye on your progress.
Not all appointments with your providers need to be in person. You may be able to schedule virtual visits for some follow-ups and quick check-ins. You’ll get the same great care online from the comfort of home.
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When you’re diagnosed with diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH), small growths called nodules can form in your lungs, causing shortness of breath, constant coughing and other symptoms.
This happens when cells called neuroendocrine cells grow out of control — a process known as hyperplasia. DIPNECH is often first mistaken for asthma or COPD. We don’t know what causes it, which is why the condition is called idiopathic. It’s more common in women, typically in their mid-60s, who’ve never smoked.
Because DIPNECH symptoms can resemble more common respiratory conditions, diagnosis may take time — especially when standard treatments don’t provide relief. Our providers diagnose and manage these cases and can help you get answers and ongoing care.
The benign nodules rarely lead to respiratory failure or death. But in uncommon cases, the nodules can develop into cancerous carcinoid tumors. That’s why it’s important to see providers who regularly treat this condition.
For years, providers could only diagnose DIPNECH by doing a lung biopsy. Now, we’re able to work as a team to look closely at your symptoms through evaluation and test results.
Your provider will begin by asking about your symptoms, how long you’ve had them and how they’re affecting your life. You’ll also have a physical exam, including listening to your lungs and checking your overall health.
We’ll do tests to help get a clearer picture of what’s been happening in your lungs. You may have some of these tests during your first visit, but you may also need to schedule others for a different day.
Some tests, like a CT scan, give us a closer look inside your lungs to check for nodules. We may also do pulmonary function tests to see how well your lungs are working. In addition, we have special tests that don’t cause coughing. These tests can help us rule out other conditions, like asthma.
When diagnosing and treating DIPNECH, we bring together providers from different specialties into a single team to plan and manage your care. Led by our pulmonologists, your team may also include:
Our healthcare providers see patients at convenient locations throughout Northeast Ohio.
If you’ve already had your cough checked, you’ve probably tried treatments for conditions like asthma, including inhalers with beta-agonist bronchodilators or corticosteroids. If those don’t bring relief after six weeks, it may be time to start treatment focused on DIPNECH — especially if tests show nodules in your lungs.
Our team will help you understand the next steps, so you know what to expect and can feel confident in your care.
These medications mimic the hormone somatostatin and can help improve your symptoms while potentially slowing or stopping nodule growth. You’ll receive SSAs through injections. We’ll start this process in the office and will eventually show you how to give the injections at home.
Surgery usually isn’t a main treatment for DIPNECH, but we may consider it if you need a lung biopsy or need to have nodules removed. We may also recommend surgery if any nodules are found to be cancerous. In rare cases, we may suggest a lung transplant, though this is uncommon.
Even with improvement, you’ll likely need regular check-ups and tests to make sure DIPNECH isn’t progressing or becoming cancerous. Our team will keep an eye on your condition and begin treatment quickly if we notice new nodules or changes in existing ones.
A nagging cough and shortness of breath can be more than frustrating. Living with them can be exhausting, especially when usual treatments aren’t effective. That’s when it’s time to reach out to experts. Our DIPNECH team is here to help you understand what’s happening, create a treatment plan that meets your needs and get you back to feeling more like yourself.
Getting an appointment with our DIPNECH experts is easy. We’ll help you get the care you need.
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