Information in one place

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The internet has a lot of information available to you to access on arachnoid cysts. We have tried to pull relevant forums and charities in the UK and around the world on arachnoid cysts in to one website to save you searching. However, if there is more information you think we should add, please let us know.

Newly Diagnosed: What to expect

What happens now?

You have, or someone you know has, just been diagnosed. 

There are a lot of fears, a lot of concerns, and probably a lot of questions.


Our suggestions are based on our and many others experience, but may be different to yours.


1. Waiting

Most likely there will be a lot of waiting. In the UK, unless you have already been told, you will be waiting to find out if you will need surgery of some sort, or if you will be seen by a neurosurgeon and where. Dpending on the need for action, you could wait up to 3 months for an appointment with a neurosurgeon.


2. Neurologists and Neurosurgeons

You probably have seen a neurologist, who specialises in area of the brain, but generally across the brain. A neurosurgeon is someone who does surgery on the brain and therefore tends to have more knowledge on arachnoid membrane and cerebral spinal fluid and cysts.


3. Referral

You may be waiting for a referral to a specialist who will be able to assess the best course of action for your condition. It is worth reading our FAQs or Information pages for a balanced view. Waiting for your referral can be an anxious time. Read our FAQ's for information prior to meeting a specialist. A list of questions to ask a neurologist is on the Forum page.

What can I do?

We would recommend dealing with your diagnosis personally. Share details with friends and family for support and inform them of your diagnosis.


1. Legally

Legally you dont have to inform your employer but it could help with understanding and time off for appointments. Likewise, your child's main care givers will need to understand the condition whilst your child is in their care.

You must inform the DVLA if you drive (see here).


2. Emotionally

Yours or your families diagnosis may make you feel emotional or anxious. This is normal for any life long condition but it is important to remain calm and research your own condition. Speak to your neurologist for more information until you are clear with your understanding. Most Neuro teams have PA's you can contact inbetween appointments.


3. Research

We created this website to put research and information in one place. The more you understand about arachnoid cysts the more confident you will feel. A list of questions to ask can be found on the forums.


4. Record

If you havent already started, start to record every symptom you have. This will give you a better picture of your condition, and will outline areas to discuss with the specialist. It will also help the specialist see a deeper view of how your cyst could or could not be affecting your life.

Rare Condition Information

Information and Forums on Arachnoid Cysts

UK - Brain and Spine Foundation

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Limited information on arachnoid cysts, but do have nurses available to offer signposting.

https://www.brainandspine.org.uk/

UK - The Arachnoid Cyst Foundation

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This website ensures you know what questions to ask, provides support, and symptom information.

http://acyst.org/

Arachnoid Cyst UK Support Forum - Facebook

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Independent from this website, the AC Support Forum offers support in the UK for families and people with Arachnoid Cysts

https://www.facebook.com/ArachnoidcystsupportUK/

Arachnoid Cyst UK Awareness - Facebook

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This site also provides information on arachnoid cysts, advice and awareness of arachnoid cysts. independent from this site. (Charity organizations)

https://www.facebook.com/arachnoidcystawarenessadvice/


Paediatric Arachnoid Cyst Foundation - USA

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Family run, american based website and facebook page. Incredibly helpful for parents of children with arachnoid cysts.


https://www.pediatriccyst.org

Arachnoid Cysts Around the Globe

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A useful site for research and experiences

https://www.facebook.com/groups/128873917125083/