The Ann Conroy Trust is the UK's only educational organisation.
For those living with Chiari Malformation, Syringomyelia, and associated conditions
The Ann Conroy Trust is the UK's only educational organisation.
A message from the chairman.
Welcome! If this is your first visit then you have probably been diagnosed, recently, with syringomyelia or Chiari malformation. If so, we hope that you will find useful information that will help you understand something about these uncommon neurological conditions, with strange-sounding names, of which you had never heard before. If you have visited us before then we trust that, in our various pages, you will find additional material of value or general interest. We aim to help people “live with”, rather than “suffer from”, these unusual neurological disorders.
Please note, however, that we are a small charity, run entirely by volunteers, being 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 on our news page.
Importantly, the Ann Conroy Trust does not give medical advice. Instead, we aim to help those diagnosed with syringomyelia, Chiari malformation, or related conditions, to understand what their hospital specialist is saying to them. Any decisions that you may make, about surgical intervention, medical treatment or otherwise, must be based on your discussions with qualified health professionals. The Ann Conroy Trust Charity does provide a list of UK-based hospital specialists, who have declared an interest in treating the conditions with which the Charity is concerned.
We like to keep you up to date on news & developments as soon as we can. Here’s a few of our latest posts.
To increase knowledge and understanding of SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more & Chiari MalformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described – see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms. and associated conditions,
and to provide support for patients, relatives, and carers.
The Ann Conroy Trust (ACT) was established in 1980 by Ann Conroy. As a SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more patient herself, Ann realised others living with the conditions and their carers needed support. Raising funds to enable research into the condition of SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more and its associated disorders was very important to Ann. Our charity is run & supported entirely by our wonderful volunteers. We are the only organisation in the UK providing educational material about SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more and Chiari MalformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described – see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms..
We share updates, awareness posts and useful information on Instagram. Here is a selection of our most recent posts.
A hospital stay is rarely something anyone looks forward to, but thinking about your comfort as well as the essentials will make the experience more pleasant 😌💭
Bringing extra nightwear and underwear can help you feel more at ease, especially in the first few days. Lip balm, moisturiser and mouth sweets will help with dryness, while your favourite drinks and light snacks can keep your energy up if your appetite is low.
When you have a bit more energy, having something simple to pass the time can help you to relax. Magazines, music or audiobooks are often easier to manage than books, and a phone or tablet can help you stay connected with your family and friends.
Our member Lynne created a helpful guide based on her own experience as an inpatient for craniovertebral decompression surgery, and later a revision operation. If you would like to know more about what to expect during a hospital visit, send us a DM and we will send the link to you!
#AnnConroyTrust #ChiariMalformation #ArnoldChiari #Syringomyelia #Syrinx #neurologicalhealth
Receiving a diagnosis can feel overwhelming, but you are not alone.
At The Ann Conroy Trust, we’re here to help you understand your condition and feel more confident about what comes next.
We offer a wide range of support and information to help you learn about your diagnosis, manage symptoms, and know what to expect. Our website includes detailed explanations of these conditions, a glossary full of medical terminology to help you make sense of complex terms, and even a list of UK specialists with experience in treating Chiari and Syringomyelia.
We encourage you to explore our website and take time to read through the information available. Building a clearer understanding of your condition is an important first step in living well with it. Link in bio.
#AnnConroyTrust #ChiariMalformation #ArnoldChiari #Syringomyelia #Syrinx #NeurologicalHealth
Finding the right medical support can make a real difference when living with Chiari Malformation or Syringomyelia 🫱🏾🫲🏼
Because these conditions are relatively uncommon, it can sometimes take time to be referred to a specialist who understands them. That’s why we’ve created a list of UK specialists who have declared an interest in treating Chiari, Syringomyelia, and related conditions.
While The Ann Conroy Trust does not offer medical advice or vet individual professionals, our list is designed to help you find the right support through your GP or care team. All listed specialists work within the NHS and have the appropriate qualifications and experience in their field.
We regularly update this information to make it easier for you to take the next step with confidence and find care that’s right for you.
Click the link in our bio to explore the full list available on the ACT website.
#AnnConroyTrust #ChiariMalformation #Syringomyelia #PatientSupport #RareConditionAwareness #NeurologicalHealth #ChronicIllnessCommunity
If you have been offered craniovertebral decompression surgery, it is completely natural to have questions about what to expect.
From how long the operation takes, to recovery time and follow-up care, there can be a lot to take in. Everyone’s experience will be different, but having the right information can help you feel more prepared and confident in the decisions ahead.
In this post, we are sharing answers to some of the most common questions people ask before surgery. These are all questions you may wish to discuss with your neurosurgeon or a Clinical Nurse Specialist, so that you can fully understand your options and what lies ahead.
If you would like to explore this topic in more detail, you can read our full guide on undergoing surgery via the link in bio.
#ChiariMalformation #Syringomyelia #PatientSupport #HealthInformation #Neurosurgery #ChronicIllness
It’s not uncommon to leave a specialist appointment feeling unsure, especially when discussing complex conditions or possible surgery.
If something doesn’t feel quite right, it can be helpful to ask for another appointment and go through any questions you may have. This can give you the chance to better understand your diagnosis, your options, and whether treatment is needed.
Not all Chiari malformations or syringomyelia require surgery, and recommendations can vary depending on individual circumstances. If you still feel uncertain after asking questions, you are entitled to seek a second opinion. This can often be arranged through your specialist or GP.
Making decisions about your care is important, and feeling informed and confident matters. To learn more, read our FAQs on seeing a neurosurgeon via the link in our bio.
#ChiariMalformation #Syringomyelia #PatientSupport #HealthInformation #NeurologicalConditions
Chiari Malformation happens when part of the brain pushes down into the spinal canal, placing pressure on the brain stem. This pressure can affect many parts of the body and lead to a wide range of symptoms.
Some people notice problems with balance and coordination, while others experience blurred or double vision, sensitivity to light or ringing in the ears. There can be difficulties swallowing, stiffness or pain in the neck, and severe headaches that are often triggered by coughing, sneezing or bending over.
Because many of these symptoms are also linked to other conditions, it is important not to self-diagnose. We encourages anyone experiencing these issues to speak to a qualified and accredited medical professional who can carry out the right investigations and offer expert advice.
By raising awareness, we hope to help people spot the signs, seek timely medical support and feel less alone in their journey. So, if you would like to gain a better understanding of Chiari Malformation, click on the link in bio to visit our website or send us a direct message.
#ChiariMalformation #ChiariAwareness #InvisibleIllness #ChiariWarrior #PurpleForChiari
Today we are sharing a personal account of living with Chiari 💜
Like many people, Lynn`s journey to diagnosis was not straightforward. At one point, her experiences became particularly challenging, as her symptoms were not fully recognised and were even thought to be psychological. This left her feeling unheard and uncertain at a time when she needed answers most.
Finally, with some support from her GP and a second opinion from a neurologist, Lynn was finally listened to and taken seriously. From there, she continued to move forward with a greater understanding of her condition.
This story reflects both the difficulties that can come with seeking a diagnosis and the importance of advocating for yourself. By sharing her experience, she hopes to raise awareness and support others who may be facing similar challenges.
To read Lynn’s full story, visit the link in our bio.
#ChiariMalformation #ChiariAwareness #InvisibleIllness #ChiariWarrior #ArnoldChiari
Did you know there is more than one type of Chiari Malformation? 🧠
Types 1 and 2 are the most commonly discussed, but Chiari malformations are also recognised in some cases as types 0, 1.5, 3 and 4.
Chiari malformations happen when parts of the brain sit lower than they should. This creates pressure and affects the flow of fluid around the brain and spine.
For some people, symptoms may not appear until later in life. Others are diagnosed from birth, often alongside related conditions.
Understanding the different types can help make sense of the condition and the experiences that come with it - whether you’re living with Chiari yourself or supporting someone who is 💜
For more information or some further support, please explore the resources available on our website. Link in bio.
#NeurologicalHealth #ChiariMalformation #ChiariAwareness #ChiariWarrior #ArnoldChiari
The Priority Services Register is a free service that offers extra support if you’re living with a long-term medical condition such as Chiari Malformation or Syringomyelia.
Many people find that joining the register brings added reassurance. If you are chronically ill, you may be eligible for additional help from your energy or water supplier, especially during power cuts or service disruptions.
Being on the register can give you access to a direct phone number for quicker support, allow you to nominate someone to speak on your behalf, and agree on a password system so you feel safe when someone visits your home. You can also receive updates during power cuts, be informed about planned interruptions, and sign up for free 24-hour power cut alerts.
If you would like to know more about the register, we’ve put together helpful information about who can apply, what support is available, and how to sign up.
Click the link in bio to visit our website for further guidance.
#PriorityServicesRegister #ChronicIllness #ChiariMalformation #Syringomyelia #DisabilitySupport #AccessibleLiving
