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Online groups & forums
There are a variety of forums and groups on the internet whose aim is to facilitate discussion of CSF leaks, the exchange of information and to provide peer support for leakers and their families.
Although none are currently managed or overseen by our charity, the CSF leak world is a relatively small one and many of the people involved are also members of the CSF Leak Association.
We have found all of the online communities to be very welcoming to new members and there are fantastic, compassionate people active in these groups, from all across the globe, with plenty of experience of living with a CSF leak or supporting those who are.
In the past, Braintalk Communities used to be very active on the topic of CSF leaks, however, as other platforms such as Facebook have taken off, it has become far quieter. We have included a link to their forum below as some of the older threads contain a wealth of historic information.
The CSF Leak Association is not responsible for the content of any community websites, groups or forums linked to from this website. It is possible that information distributed by or expressed within these communities may be contradictory to the advice on this site, at odds with medical opinion, misleading or even harmful to you. Where there is any doubt, you must always seek professional healthcare advice.
As a charity run entirely by unpaid volunteers, we have to focus our limited resources on areas where we can have the biggest impact for the most amount of people, such as the development of diagnostic and treatment guidelines for the NHS.
While we aspire to work towards CSF leak-focused counselling and support in the future, we are not trained counsellors and that is not something we are currently able to offer.
However, our friends at the Brain & Spine Foundation have an excellent free helpline providing support for a wide range of head and spine conditions, including CSF leaks.
Brain & Spine Foundation Helpline:
0808 808 1000
Talking with someone independent of a situation can also play an important role in making matters easier to cope with, both for CSF leak sufferers themselves and their families.
Counselling allows you to talk with someone who is trained to listen attentively and to help you deal with things, and has been of great benefit to many CSF leak sufferers.
Talking therapy is a very person-specific service, so it's not possible to recommend any specific counsellor or psychotherapist, but we have provided the following links in order to help you find someone with right experience and qualifications:
We are a health advocacy charity, but we are not clinicians, and as such we are unable to offer bespoke one-to-one medical advice.
If you wish to discuss or explore your health problems, or those of friends and family, we would always suggest that you make contact with your GP or other healthcare professional in the first instance.
If you are not already registered with a GP, you can find a local practice here:
You can also speak to 24/7 non-emergency medical advice by calling 111 from any UK telephone or visiting the following websites:
General healthcare information can also be found on the following NHS websites:
Last reviewed: 2021