When it all started
Hi, my name is Gaby. My leak symptoms started in 2013.
I had a lot of back pain throughout my 20s, 30s and early 40s, that I put down to my scoliosis and old age. I was practicing Bikram Yoga and I think a backbend may have caused the issue.
Around the same time, I was having issues with my monthly cycle and had a small procedure to help this. I remember after the procedure, I felt this dragging sensation in my eyes and I was getting regular headaches and blurred vision. I felt very tired and my back was agony all the time, unless I was lying down. My GP put the problem down to low iron levels, even though my iron levels weren’t really that low.
I could only manage a few hours at work and then had to go back to bed. My company wasn't thrilled with this, so I went back to work full time, but never felt very good at all. My life soon became a cycle of going to work and then bed.
I left that company and started working for another, but I still felt dreadful and often went to the toilets to cry with pain. I put the headaches, dizziness and blurred vision down to the back pain - in particular, it hurt just under my rib cage.
I went to see my GP again and he sent me to hospital for X-rays and said it could be my gallbladder! I had an X-ray and the doctor said my gallbladder was fine, but that I had a very bad scoliosis. The X-ray revealed that the scoliosis had worsened since my last scan, which had been taken approximately 30 years before. I was put on very strong painkillers and told I should see a specialist. I booked to see a specialist, who then recommended to have physio. I travelled for miles to see various physios. I started seeing an osteopath in my hometown, who suggested that I was hypermobile, so I then saw a rheumatologist, who diagnosed Ehlers-Danlos Syndrome.
As time went on, I didn’t feel any better, but still put it down to the scoliosis and my newly diagnosed Ehlers-Danlos. I was spending a fortune on physio, osteopathy and acupuncture treatments. I gave up my job to become freelance and work from home, as sitting in an office chair was so painful. I then worked for a company I loved and they convinced me to work full time for them – back in an office chair from 9-5! I began seeing a physio there and he told my boss that he was surprised I could function upright, so I just thought all my symptoms were down to that.
Rushed to A&E
In June 2018, I was sitting at my desk and all of a sudden I had this sensation like having fainted temporarily. I felt very dizzy and my headache was much worse than normal. I went to bed as soon as I got home, as we were going to a family member’s birthday the next day. I decided to drive to my family, but I felt dreadful. I had to get a taxi home as I felt very dizzy and couldn’t tell the depth of the floor… it was all pretty frightening.
By Monday, I lost most of the sensation in the left side of my body. I got a taxi to see my GP and he called an ambulance for me, as it sounded like I was having a stroke. I had all the tests needed to rule out a stroke and stayed there for three days. I was diagnosed with hemiplegic migraine. This happened a further three times and I was also having ongoing trouble walking around the office. I couldn’t tell the depth of the floor and my head was really sore. I was back screaming in agony and had extremely blurred vision. When reading up about hemiplegic migraine, it just didn’t seem to fit with what I was experiencing.
I kept talking to my GP about how I was feeling and he just switched my pain meds, thinking it could be that. A previous neurologist had dismissed my problem as an ‘EDS thing’ and so I went to see a rheumatologist to see if they could shed any light on this. By this time, I had already read a lot about CSF Leaks and really did think it was that, but who was I to question a doctor? When I mentioned it, he said he thought that it wasn’t that, but a Chiari Malformation. So, I went down that route which cost us thousands in scans. I paid to see a private neurologist and a private ENT specialist who couldn’t help me, but got me in for further scans – even more money down the drain. I found Dr Ian Carroll’s video from a few years ago and emailed him, and he suggested I look for a spinal leak and not a cranial leak. That’s when I stumbled across the CSF Leaks group on Facebook.
As soon as I could, I booked in to see a CSF leak specialist, who then diagnosed intracranial hypotension caused by a possible CSF Leak. I was so happy to finally be heard and taken seriously. The specialist booked me in for a blood patch, but unfortunately it didn’t work, so booked me in for another one.
I had been working from home since February 2019 out of necessity, as if I went into work I would be unable to read the words off the screen by 11am. Then a devastating blow came in September 2019, when I lost this job that I loved.
Then Covid-19 happened and the NHS Trust I was under took a massive hit, with all procedures halted - I had no other option but to stay put in bed. The months went past and there was no sign of a blood patch. I spoke to my specialist and he said he would change the status to urgent, as I was now very poorly. I waited and waited, but no date came. My husband said that it was getting ridiculous and suggested I see someone else privately.
I contacted Professor Choi and within three weeks was seen, scanned, had a CT Myelogram and told a blood patch wouldn’t work and that I needed an operation. He put me back on the NHS list, as we couldn’t spend any more money on medical procedures. I thought I would be waiting for at least a year, but received a call in the last week of April 2021 and was operated on on May 5th! The operation was pretty tough – well, afterwards was, because I had to lay flat on a lumbar drain for five days, but I could definitely notice an improvement.
Recovery has been slow, and I have caused a mini leak on four separate occasions. I have recently been on strict bed rest. I have now gone into rebound high pressure and have been this way for a few months now. I am very deconditioned, but hope to gradually build up my strength without creating any further leaking.
I have written to all the doctors that have seen me from the beginning, to share with them that my CSF Leak was eventually sealed with surgery. I have done this so that it will help them in the future to speed up the diagnosis and treatment for people that present with the same symptoms as me. The Stroke team at my local hospital are now aware to look out for the fact that a CSF leak can present like a stroke or a hemiplegic migraine. My GP replied to me to apologise and say that his staff have now been trained to look out for symptoms of a CSF leak, so that is very positive on a local level. I have really tried to help promote awareness in the medical profession that I have seen, so that patients now and in the future with CSF Leaks do not have to suffer the way that I have.
On a national level I realise that the length of my suffering has been prolonged by the perfect storm of CSF leaks not being very common, therefore doctors aren’t trained to look out for them, by long NHS waiting lists and budget shortages and from medical procedures being cancelled because of Covid. This distresses me greatly because a CSF leak must be one of the most life-draining conditions to have - I have lost my job and my friends don’t contact me as much as they did before. I am lucky, however, as I have the most amazing family who have helped me through this mentally.