About the treatment
The first response to diaphragm paralysis in neuralgic amyotrophy (NA) is often to 'treat' yourself, for example by raising the head of your bed or sleeping in a sitting position. However, this does not solve the problem for everyone, and does not alleviate the symptoms during the day. If you have obvious problems with lying down and sleeping, we strongly advise you to be referred to a center specializing in home ventilation (Centrum voor Thuisbeademing – CTB).
Following an interview and examination, the specialized center can provide you with good advice about the improvement that can be expected with a non-invasive nighttime respirator. This advice is intended not only to enable you to sleep better at night and without interruption, but also to give your diaphragm a 'rest'. This will improve your endurance during the day. Not everyone can use a respirator, but if you can, this often results in a strong improvement in the quality of your sleep and your functioning during the day.
What can you do yourself?
If you have diaphragm paralysis, you can take some practical steps yourself. For example, you can wear an SOS badge or a USB stick with information about your paralysis. In case of an accident, this enables ambulance personnel to see why you breathe poorly when lying down.
Regarding swimming underwater, it is strongly advisable to try this out with solid ground under your feet. If you observe that you are unable to continue breathing when the water is at chin level, make sure you never go swimming - or at least not unsupervised - at locations where you cannot get out of the water quickly by yourself.
Exercise and diaphragm paralysis
Although your physical condition is often worse than before your diaphragm paralysis, there is no reason why you cannot continue to exercise. However, you may have to exercise at a considerably lower intensity. Pay attention to your body and do not force yourself. Breathing exercises may be effective for strengthening your diaphragm if you have NA, but only if you breathe in a normal pattern using what is called abdominal breathing.
Prognosis of the paralysisAt Radboudumc, in collaboration with the CTBs in the Netherlands, approximately 100 patients have now been diagnosed with diaphragm paralysis caused by NA. Approximately one-third of these patients recover within a few months, sometimes even before the diagnosis has been made. lees meer
Prognosis of the paralysis
At Radboudumc, in collaboration with the CTBs in the Netherlands, approximately 100 patients have now been diagnosed with diaphragm paralysis caused by NA. Approximately one-third of these patients recover within a few months, sometimes even before the diagnosis has been made. Another one-third of the patients recover very slowly over 3 to 4 years, and the final one-third do not recover at all. You will know your prognosis only as time passes. The examinations described above can help track your recovery (or lack of recovery). This can be useful information for determining the best type of treatment