With the eventual diagnosis comes a combination of relief and further anxieties. Numerous new questions arise and answers are not always forthcoming. It is at this stage that the hospital specialist has a vital role to play, in gaining the patients confidence and trust. Unless and until the individual is adequately informed about their condition, he or she will not be able to make a rational decision about the most appropriate course of treatment to follow. Surgical intervention for uncomplicated Chiari is seldom essential and even the presence of an associated syrinx does not necessarily make an operation mandatory. The patient needs time to come to terms with matters, with careful explanation and guidance from the specialist. If an operation is the chosen route then the surgeon must give clear information about the procedure.

A frequent concern amongst patients and carers is the lack of general support available to them. Often, before deciding to submit to surgery, the patient may look to a fellow sufferer for some counsel. An increase in social networking sites and mobile communication technology has meant that patients can do this online. Small local support groups may also be set up, and these certainly have a role to play, provided that they are well run and do not become a forum for propagating complaints and negative attitudes. Running a support group is, however, not an easy task. Quite apart from the time commitment and the need to be available as often as possible, the volunteer has to develop counselling skills, often without the benefit of any formal training. For the caller, however, the opportunity to talk, at last, to somebody who seems to understand what they are going through, is a great relief.

Different callers have individual needs, of course, but there a number of common themes (Table 18.2). Gaining access to specialists with sufficient expertise and experience in treating syringomyelia and Chiari is a common concern amongst patients. Many will be seen initially by their local neurology or neurosurgery service, and not all units will have an individual with a special interest in managing these conditions. The initial consultation may very well leave the patient confused and frightened, particularly if the prospect of brain or spinal cord surgery is raised at the outset. Patients commonly resort to the Internet to gain some further understanding about these conditions with the strange-sounding names. All too often this “research” adds to the patient’s fears, raising the spectre of progressive, painful deterioration, to a state of physical helplessness. Patients, therefore, should be guided by their own professional health-care advisors and use information from other sources simply as a means of better understanding what their medical advisors say to them. The patient desperately needs to be listened to and to know that the specialist understands something about the problem and what the patient is going through. The patient wants to know which symptoms are likely to be caused by the Chiari or the syrinx and which are not. Is there a risk of coming to serious harm? What other treatment options are available? He or she then needs time to consider matters and to read an intelligible, lay account which does not overdramatise matters. The patient will probably then come back with further questions and may well ask if there is a fellow sufferer to whom he or she can talk. Above all the patient wants to be believed and not left feeling that the doctors regard him or her as suffering primarily from stress.