Emma and David Browne
Donation protected
Emma Browne is a qualified play therapist and psychotherapist. She is employed by the CAMHS team in Bradford and works with traumatized and vulnerable children. Emma also works with adults who have experienced trauma to help them build their lives. She has dedicated her career in helping others and feels passionately about aiding sustainable recovery. Her husband David is a qualified Substance Misuse therapist and worked with men with addiction for year. He has managed healthcare in a busy remand prison since April 2016.
On 8th February last year Emma woke in the middle of the night with a thunderclap headache and debilitating dizziness. Fearing a brain bleed, she was given a lumbar puncture (LP) at A and E and her symptoms then got significantly worse. Following the LP she was unable to lift her head, sit or stand without excruciating head pain, dizziness, and severe hearing and sight issues. After a couple of weeks of attending A and E nearly every day trying to find answers to her sudden debilitating symptoms, she was diagnosed with a cerebral spinal fluid leak (CSF). This is a very rare but serious and incapacitating medical condition stemming from a tear or hole in the membrane that contains the fluid surrounding the spinal cord and brain. The leaking fluid causes the brain to sink in the skull causing crushing head pain as well as lots of other neurological symptoms.
During the following 9 months, Emma underwent several prolonged stays in hospital and various invasive procedures and scans to try and find where in her spine she was leaking from. However, it is like looking for a needle in a haystack and despite exhausting all the current NHS imaging expertise; we still do not have any answers.
Although there is no medication than can seal a CSF leak, Emma has also undergone 4 epidural blood patch procedures, involving the surgeon injecting Emma’s own blood back into the epidural space in the hope that the blood travels along the spine, finds the hole and seals it. Unfortunately, despite some improvements in some of her symptoms, the latest scans show she is still leaking CSF and she still battles with severe brain fog, memory and concentration issues, vertigo, head pain, severe tinnitus and blurred vision on a daily basis.
Following her latest invasive myelogram in October as a last attempt to find the leak, Emma’s neurosurgeon told her she had now developed another very rare condition called adhesive arachnoiditis, which is described as an incurable and progressive spinal cord injury and pain disorder caused by inflammation of the arachnoid, one of the membranes that surrounds and protects the nerves of the spinal cord. The damage may occur due to irritation from chemicals; infection; direct injury to the spine; chronic compression of spinal nerves; or complications from spinal surgery or other spinal procedures. For Emma, it is likely that all the spine procedures she has gone through last year has caused scar tissue and adhesions, where her spinal nerves are becoming “stuck” together. It is already causing symptoms such as numbness, tingling, and a stinging and burning pain in her lower back and sometimes spreading to her legs. As it progresses, it may affect the bladder, bowel, and sexual function. In its severe stage it can result in paralysis of the legs.[1]
Unfortunately in the UK, NHS treatment only aims to relieve pain and symptoms that impair function. Emma has been told that any further invasive treatments in her spine may cause the arachnoiditis to advance further. She is now feeling very stuck as she has 2 very rare conditions and UK specialists are now unable to offer any real hope of fixing her CSF leak or treating the arachnoiditis. Emma is reluctant to become dependent on heavy duty pain killers that only serve to increase the brain fog and cognitive decline she is experiencing. She is desperate to get back to her work in as a psychological therapist in NHS with children who have experienced trauma and after nearly a year of being unable to function properly as a wife and mother she is trying everything she can to heal and get some of her life back.
Emma has done extensive research into her conditions and there are a few treatment options she feels are available including hormone and stem cell treatment for the arachnoiditis and seeking advice from top CSF leak experts at Duke University hospital in USA. All of these treatments are of course self-funded and the potential cost could be around £20,000.
Emma, Dave and their 2 daughters would be so grateful for any contribution to these costs no matter how small. We do know the sooner the treatment for the arachnoiditis can happen, the better the possible outcome might be to stop progression or even reverse some of the damage.
On 8th February last year Emma woke in the middle of the night with a thunderclap headache and debilitating dizziness. Fearing a brain bleed, she was given a lumbar puncture (LP) at A and E and her symptoms then got significantly worse. Following the LP she was unable to lift her head, sit or stand without excruciating head pain, dizziness, and severe hearing and sight issues. After a couple of weeks of attending A and E nearly every day trying to find answers to her sudden debilitating symptoms, she was diagnosed with a cerebral spinal fluid leak (CSF). This is a very rare but serious and incapacitating medical condition stemming from a tear or hole in the membrane that contains the fluid surrounding the spinal cord and brain. The leaking fluid causes the brain to sink in the skull causing crushing head pain as well as lots of other neurological symptoms.
During the following 9 months, Emma underwent several prolonged stays in hospital and various invasive procedures and scans to try and find where in her spine she was leaking from. However, it is like looking for a needle in a haystack and despite exhausting all the current NHS imaging expertise; we still do not have any answers.
Although there is no medication than can seal a CSF leak, Emma has also undergone 4 epidural blood patch procedures, involving the surgeon injecting Emma’s own blood back into the epidural space in the hope that the blood travels along the spine, finds the hole and seals it. Unfortunately, despite some improvements in some of her symptoms, the latest scans show she is still leaking CSF and she still battles with severe brain fog, memory and concentration issues, vertigo, head pain, severe tinnitus and blurred vision on a daily basis.
Following her latest invasive myelogram in October as a last attempt to find the leak, Emma’s neurosurgeon told her she had now developed another very rare condition called adhesive arachnoiditis, which is described as an incurable and progressive spinal cord injury and pain disorder caused by inflammation of the arachnoid, one of the membranes that surrounds and protects the nerves of the spinal cord. The damage may occur due to irritation from chemicals; infection; direct injury to the spine; chronic compression of spinal nerves; or complications from spinal surgery or other spinal procedures. For Emma, it is likely that all the spine procedures she has gone through last year has caused scar tissue and adhesions, where her spinal nerves are becoming “stuck” together. It is already causing symptoms such as numbness, tingling, and a stinging and burning pain in her lower back and sometimes spreading to her legs. As it progresses, it may affect the bladder, bowel, and sexual function. In its severe stage it can result in paralysis of the legs.[1]
Unfortunately in the UK, NHS treatment only aims to relieve pain and symptoms that impair function. Emma has been told that any further invasive treatments in her spine may cause the arachnoiditis to advance further. She is now feeling very stuck as she has 2 very rare conditions and UK specialists are now unable to offer any real hope of fixing her CSF leak or treating the arachnoiditis. Emma is reluctant to become dependent on heavy duty pain killers that only serve to increase the brain fog and cognitive decline she is experiencing. She is desperate to get back to her work in as a psychological therapist in NHS with children who have experienced trauma and after nearly a year of being unable to function properly as a wife and mother she is trying everything she can to heal and get some of her life back.
Emma has done extensive research into her conditions and there are a few treatment options she feels are available including hormone and stem cell treatment for the arachnoiditis and seeking advice from top CSF leak experts at Duke University hospital in USA. All of these treatments are of course self-funded and the potential cost could be around £20,000.
Emma, Dave and their 2 daughters would be so grateful for any contribution to these costs no matter how small. We do know the sooner the treatment for the arachnoiditis can happen, the better the possible outcome might be to stop progression or even reverse some of the damage.
Organizer and beneficiary
Maxine Wrightson
Organizer
David Browne
Beneficiary