Victoria’s urgent CSF leak treatment

Hi there, this is something I never thought I’d have to do but as some of you may know Victoria has been suffering for four months now. Victoria has been diagnosed with a cerebrospinal fluid leak (CSF Leak). This is a relatively rare and unheard of condition. In basic terms, it means the fluid around her brain is leaking causing her brain to rest on her skull. This causes excruciating pain which can only be relieved by lying flat. Lying flat allows the leak to slow and helps the body to build up fluid in the brain again. As you can imagine this is not really a long term solution. The treatment for a CSF leak is called an epidural blood patch and it requires Victoria to have blood injected into her spine to heal the tear. 

Victoria first suffered a CSF leak as a result of a spinal injection given for an emergency c section during the birth of our daughter in January 2020. This initial CSF leak was treated successfully three days later with a blood patch however when the leak returned in October 2020 healthcare, both privately and through the NHS, denied access to treatment.  We have been advised by several medical professionals that Victoria is suffering as a direct consequence of the on-going Dr Watt investigation. This investigation has caused treatment for CSF leaks to be inaccessible. This has left Victoria severely debilitated for four months unable to care for herself, let alone our 1 year old daughter. She can only be upright for 1-2 hours and then has to lie flat to let the fluid build back up again to relieve the pain. Victoria is normally an active person, always out for walks with our daughter and simply loves being outdoors. The past four months have been torture for her, mentally and physically, and as her husband it has been hard to watch. She cannot shower without help, she cannot lift Charlotte as heavy lifting can worsen the leak and she cannot bend to even put her own socks on, as this too can affect the leak. She feels heartbroken as she has missed out on so much time with our daughter and wants nothing more than to be a healthy mum again.

Following a diagnosis from a CSF leak specialist in London and a further diagnosis from a Consultant Neurologist in NI, healthcare in NI has applied for funding to send Victoria across to mainland UK, where this procedure is accessible. With NHS waiting times remaining uncertain, we are left with no option but to seek costly private treatment in the hope that Victoria can get her life back. A Consultant in Aberdeen, who is a CSF leak medical advisor and who has carried out this treatment many times, is willing to treat Victoria. This comes at quite a cost as on top of the procedure, there is also the cost of travel and accommodation in Scotland. We are desperate for Tori to get treatment so we can get back to our normal lives with our baby girl.

I know these are hard and uncertain times but we really appreciate any help that we receive and will be forever grateful

**update ** 

Thanks to peoples generosity it means we are nearly in a position to be able to access full treatment if its required. It can take up to 3 blood patches to seal a CSF leak however we really hope it works first time. It’s difficult to know how well it will work and what the overall costs will be, but if we don’t need all that is raised we will be donating it to the CSF Leak Association charity which has helped us so much with resources, fighting for a diagnosis and finding consultants.