Hi my name is Kathryn and I'm mom to Elliot who is now 24 years old.

Elliot was diagnosed at 14 years old with Chiari malformation and syringomyleia and a brain cyst at the back of his head . This caused numerous neurological difficulties seizures and severe headaches. It affected his schooling and home life as symptoms escalated Elliot had an intercranial pressure monitoring device drilled into his skull for 24 hrs in Birmingham children's hospital then craniovertebral decompression surgery was performed 3 days later in 2014 at Birmingham children's hospital. Elliots recovery was less than smooth as he suffered a major seizure at the end of the operation where air was trapped inside the basal system of the brain known as pneumocephalus which was life threatening and Elliot had to be on humidified oxygen and at a 30 degree angle while this dissipated during this period his bladder stopped working for a while and a catheta was needed and he suffered a major allergic reaction as his brain was causing delayed issues after surgery.

Elliot made it home after 12 days and we hoped this would be the new start he was hoping for. However after 3 weeks he started having headaches again only these were different to before not at the back of the head but more centralized crushing headaches. we alerted medical staff and on his checkup he was scanned again and we were reassured that everything was ok. However his headaches continued and Elliot started to have more and more pain relief. Elliot was sent to the neurology clinic where he was tried on medication after medication 8 weeks at a time for each medicine to build in his system in an attempt to control the head pain. medcines such as carbamazapine, topirimate, epilim, sumatriptan, amytriptiline, pregabilin, gabapentin, noratriptiline, zomitriptan, eletriptan, candesartan. This was a very long road and nothing seemed to help and the crushing headaches continued to escalate with other symptoms such as rining in the ears nausea memory issues neck pain pain behind eyes like an ice pick to name but a few.

Elliot was sent to the pain clinic at GOSH and although he tried even GOSH thought it wasn't the perception of pain being the problem but more his medical condition and sent a report back to the hospital. After this failed to help elliot was sent to a neuropsychologist who tried to suggest that it was the anxiety that was causing his worsening symptoms and as such was refered to CAMHS. They assessed Elliot and blatently sent a report back to the hospital stating that it was not mental health causing his symptoms but the unidentified medical issue not being addressed. when the hospital received this Elliot was discharged from neuropsychology and sent back to neurology and labelled with chronic migraine. They then stated we may never find the reason for these severe headaches so we asked for a second opinion. he tried to refer to another children's hospital but Elliot wanted to see prof Goadsby in London.

I took Elliot to London where he was assessed and Prof Goadsby stated that indeed he has chronic Migraine but the positional element of his headache suggests that he may have a CSF leak and half of his symptoms correlate to this. He sent a report back to Birmingham children's hospital where he stated that Elliot need a MRI with Gadolinium contrast for better image.

We attended the scan appointment Elliot went in and came out and when i asked how did the contrast feel he said he didn't have any and to my amazement and disbelief they hadn't done it with the contrast required. I was furious for Elliot as this was yet more wasted time without the correct diagnostic tool being used whilst Elliot still suffered with crippling headaches.

Elliot had already lost so much he couldn't attend the school he loved he couldn't manage the referral Centre he was sent to the local authority couldn't get a home tutor to him either as they hadn't any available before Elliot was due to leave school. So Elliot became one of these children who's complex health needs resulted in him falling through an educational gap where he wasn't able too finish school take any exams or go to prom like so many enjoy.

Meanwhile the crippling positional headaches continued and he was transferred care to the QE before his 17th birthday. but he was referred the wrong way round so had to wait 18 months for his first appointment. This hospital gave Elliot some hope as they said they had an interest in conditions like Elliot's.

Then the pandemic hit so lockdowns started and all hospital appointments slowed which meant only 1 telephone appointment during that period as the NHS was under immense pressure with the devasting consequences of COVID.

When the pandemic ended Elliot was recalled to the hospital where they referred him to a neurosurgeon to place a wireless intercranial pressure monitor in his brain this was done in June 2023. he's attended several readings and they have been reported as inconclusive as they are slightly low but apparently not severe yet on his clinic notes his diagnosis is intercranial hypotension.

During 2023 he had 13 admissions to hospital as his pain was out of control and being violently sick . During 2024 he had just as many and 2025 was even worse as the episodes lasted longer and landed him on the stroke unit last October for 10 days.

his Neurosurgeon last week stated that there is nothing that can be done for Elliot at this hospital as they cannot find the leak site or why he has low pressure. They have stated that Elliot has the right to a second opinion elsewhere and they will help in any way they can with this.

Its now time to think outside of the box CSF specialists in this country are few and far between and sometimes the techniques and scans they use here just do not show the leak . Countries elsewhere like The united states have dedicated center's of excellence for conditions like this and are able to give the answer needed for correct evaluation treatment

Elliots had to live lying down 95% of the time for the last 10 years to even get to this point and diagnosis but this shouldn't be the case should it? its a crippling condition that no child or young man should have to suffer with. I just think that first he was told he may never find an answer then he was told we have found the cause now to be told we cannot do anything about it. No ones hope should be taken away .

But we are desperately going to need to raise substancial funds to facilitate the test and stay over in America. We are working hard to try and raise as much as we can but are going to have to ask any kind hearted people to make this possible. Every donation will make this possible for Elliot who has been nothing short of really brave considering how much he has been through already.

CSF LEAK DESCRIPTION

A key characteristic of many CSF Leak symptoms is that they are generally orthostatic. That is to say that they occur principally when standing or sitting, but are often significantly relieved when lying down.

Symptoms may present themselves immediately upon sitting or standing, or increase gradually over a period of time. A common pattern with many CSF leak sufferers, particularly those with a small or intermittent spinal leak, is that symptoms may only become noticeable or severe later in the day.

Many CSF leak symptoms are common characteristics of other headache disorders, such as migraine, acute sinusitis, severe tension headache and post-traumatic headache. Research shows that these similarities routinely result in the misdiagnosis of a CSF leak.

The orthostatic characteristic is, however, a key indicator of a CSF leak and whenever this is present, a CSF leak should not be ruled out. Due to the perceived rarity of this condition and the lack of diagnosis experience in GP surgeries and A&E wards, it may be necessary for those experiencing CSF leak symptoms to specifically raise it as a possibility with their GP or emergency medicine practitioner.

Head

Headaches (frontal, parietal and occipital)

Heaviness of head

Feeling of pressure within the head

Sensitivity of, or tingling sensations within, the scalp

Dizziness or loss of balance

Ears/Hearing

Tinnitus (ranging from ringing and buzzing to pulsatile tinnitus)

Pressure sensations in the ears/ear popping

Feeling of liquid in the ears

Hearing loss (sometimes similar to Meniere’s disease) and dulled hearing

Eyes/Vision

Blurry vision

Double vision

Pain behind eyes

Pain when moving eyes

Facial

Facial numbness

Jaw pain/toothache

Temporomandibular joint pain and stiffness

Back, Neck & Limbs

Neck pain and stiffness

Back pain (area-specific and general)

Tingling sensations and spasms in the spine, back, arms and sometimes legs

Other Symptoms of CSF Leak

Rapid heartbeat, particularly when sitting or standing

Nausea and, in extreme cases, sickness

Cognitive decline (including memory loss and loss of concentration)

coma and death