Ana

When the Headaches Began 

I would like to share my experience in case it may help someone else. I started experiencing severe headaches at the beginning of October 2025. The pain would ease when I lay down. After going to the emergency department on one of the days when the pain was unbearable, I was diagnosed with “cluster headaches”.  

“The pain would ease when I lay down.” 

Seeking Answers Abroad  

As I had a planned trip to Spain, (I am Spanish) I decided to see a doctor and check whether the diagnosis matched the one I had been given in England. The neurologist who saw me, after the consultation and a contrast-enhanced brain and spinal MRI, determined that I was suffering from intracranial hypotension. 

A Difficult Search for the Leak 

From that moment on, I contacted a specialist doctor, Head of the Neuroradiology Department. The first procedure was an epidural blood patch, which unfortunately did not work in my case. Afterwards, three myelograms were performed (in prone, left lateral and right lateral positions), along with the corresponding dual CT scans for each of them, with the aim of locating the source of the leak. Due to a congenital connective tissue defect, I have dural ectasia, which made detecting the leak more difficult, as I have numerous diverticula along my spine. None of these tests were able to detect the origin or cause of the leak. 

A Breakthrough with Advanced Imaging 

At this point, after discussing it with my doctor, we decided to proceed with a Photon Counting CT scan, a technology that is much more precise than conventional CT scans and provides higher-resolution images. Thanks to this test, it was possible to diagnose that the leak was caused by a venous fistula located at the C7–T1 level of the spine. Without this test, it would have been very difficult - or in fact almost impossible - to reach a diagnosis, as my dural ectasia complicated the flow of contrast along the spine, preventing it from reaching the cervical region in time. I believe that many people who, like me, have great difficulty identifying the source of their leak could benefit enormously from having access to this type of Photon Counting CT scan. 

“Thanks to this test, it was possible to diagnose” 

Treatment and Expert Care

The leak was treated on the 8th of January through a spinal embolization. In this regard, I would like to highlight the professionalism, empathy and excellence of the professionals who treated me both at Fundación Jiménez Díaz and at Hospital Quirónsalud Madrid, where the Photon Counting CT scan was performed. 

Life After Treatment  

“I now enjoy every moment and don’t take feeling well for granted.” 

I now enjoy every moment and value the days and the normal routine much more. It has been only four months since I had the surgery, and while I am still recovering, I am in a much better position than before. I live and appreciate every single moment on a daily basis, as I am feeling very well but I do not take this for granted. For anyone who is currently suffering from a CSF leak, if you would like to ask anything about my experience; please email contactus@csfleak.uk and theywill pass your message on to me.