Help & Support

There are a wide range of support options available in order to help you to understand your condition, or to help you through a recent diagnosis and knowing what to expect. We would encourage you to read through all of the information on this site to increase your general understanding. We are a small charity, run entirely by volunteers who are a group of patients, healthcare professionals, their families, and friends. We are not a government agency and are not part of the NHS.  We endeavour to assist people living with syringomyelia &/or Chiari but, at times, may be unable to provide comprehensive support, for which we apologise.  We will post additional notices, from time to time, relating to our various services.

Professional Help

Both Chiari and syringomyelia are relatively uncommon conditions. As a result, family doctors will seldom suggest them as a primary diagnosis, when confronted with the variety of symptoms that they may produce. Instead, patients will usually be referred to a neurologist or other hospital specialist. Once suspected, the diagnoses of syringomyelia and/or Chiari malformation are then usually confirmed with MRI scanning.

The question then arises as to what treatment, if any, is required. This is when the affected individual needs professional advice. The Ann Conroy Trust cannot and does not offer such advice, to individuals. This is the job of appropriate healthcare professionals. The Charity does, however, provide a list of UK specialists who have declared an interest in treating syringomyelia, Chiari and related conditions.

The Hospital Experience

We’ll talk about what you can expect to experience during your hospital visits. Here’s what we’ll cover.

Seeing a neurosurgeon

We will advise you of what questions you could ask, whether you will be offered surgery and what to do about second opinions.

Undergoing surgery

Otherwise known as a "craniovertebral decompression" and what to expect from it. We provide surgeon answers and insights.

In-patient experience

A real insight with FAQs based upon one of our patients fairly extensive experience as a hospital in-patient undergoing surgery.

Therapy Options

Chiari malformation can cause a range of symptoms. Some patients may undergo surgery to help alleviate some of these symptoms, but those who do not can be supported in other ways, to manage these symptoms conservatively.

Please help keep this information free

Our charity relies on financial support to allow us to keep our resources available to everyone, at all times of the day, for free. We are run entirely by the support of our wonderful volunteers, who help us in their own time. If you find this resource useful, please consider donating to help us to fund further research, events, and other helpful & related activities.