General anesthesia may be necessary for undergoing surgery. Some of the drugs used in anesthesia may cause serious problems in patients with myotonic dystrophy: some drugs need to be avoided; others need to be given in lower dosages than usual. Therefore, it is extremely important to tell the entire medical team, especially those responsible for the anesthesia, that you or your family member has myotonic dystrophy. Precautions also are necessary in children with myotonic dystrophy. Surgery usually can be safely undertaken with careful monitoring of cardiac and respiratory functions before, during and after the procedure. If possible, the anesthesiologist and the neurologist or other central health care provider should communicate long before the surgery.
In case of doubt, do not hesitate to contact your treating physician, or the Myotonic Dystrophy Centre the Netherlands in Maastricht or Nijmegen.
An SOS-identification (card, bracelet of necklace) can be used to notify medical doctors of your condition in case of emergency. This SOS-identifications can be ordered through Spierziekten Nederland (www.spierziekten.nl).
Currently, several health apps for your mobile phone exist. Essential information can be shown without unlocking your phone. This can also be used to notify health care providers about the presence of myotonic dystrophy in an emergency situation.
More information can also be found in the brochure ‘Myotonic dystrophy and surgery‘ (in Dutch).