PATIENT STORIES


Bahareh Nourbakhsh Cloutier - Toronto, ON

I am one of the co-founders of Spinal CSF Leak Canada and a spinal CSF leak “survivor”. Prior to my leak I was managing my own interior design company while raising my two daughters.  I had no prior medical history and I was healthy.  On October 3, 2016, I was afflicted by a sudden debilitating headache which soon was accompanied by a series of other neurological symptoms that left me completely disabled.  I was unable to care for myself and my family. 

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I bounced from one ER to another, begged to see a neurologist and to lie down. Instead, I had a lumbar puncture to rule out meningitis that made my headache and my symptoms even worse. It felt like my brain was being pushed down my throat, but little did I know, my brain was sagging towards the base of my skull. I was told repeatedly it was just a bad headache; and this despite all of my symptoms (positional headache, felt better when lying down, brain fog and feeling disconnected from the world, extreme fatigue, tinnitus, metallic taste in mouth).  I was eventually successful at self-diagnosing myself with the help of a physician in the family and after discovering Dr. Carroll’s video online.    With some strong advocacy from my family, a blind blood patch at the lumbar area was performed during one of my visits at the hospital.   I had no relief from this blood patch and my symptoms persisted.   

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I was turned away by two other neurologists and was finally believed by a third neurologist, in large part thanks to efforts by my family doctor. At that stage, the battle was by no means over.  My original imaging did not reveal any signs of spontaneous intracranial hypotension and all my tests were considered unremarkable.   It was only through further detective work that we discovered that images do not always show a leak despite there being one.  A second high-volume blood patch, this time at the T8 area of my spine was performed.  I had immediate relief of symptoms and I was told I could resume normal activities. My symptoms retuned less than 24 hours later.

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Finally, after a repeated brain MRI with contrast showed signs of intracranial hypotension, a CT myelogram and DSM were performed in Toronto and the site of my leak was finally located by Dr. Farb.   The CT myelogram also confirmed that I have nerve root diverticuli (perineural cysts) on my spine .  Perineural cysts are formations of fluid-filled sacs that grow on the nerves at the base of a person’s spine.  One of the cysts at the T10 level of my spine had burst and was seeping csf. Following a fibrin glue patch treatment, as well as a targeted blood patch performed by Dr. Peng in Toronto, I was still not cured, and my long journey in the US began. I underwent spinal surgery at Cedars Sinai hospital in Los Angeles but my symptoms persisted following the operation.  I underwent further multi-level blood and fibrin patches at Stanford, and later I received further testing and treatments at Duke with Dr. Linda Gray. Finally, after a total of 9 patch procedures/surgeries, my leak was finally sealed.  

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I am now suffering from rebound intracranial hypertension which can be a side effect of being patched. It requires management and post-care by knowledgeable physicians.  Despite all this, I consider myself one of the lucky ‘leakers’. Many if not most people affected by a spinal csf leak are completely bedridden, in severe pain and unable to have the slightest semblance of a normal life. 

While being bedridden for 9 months and unable to care for myself or my children, I fantasized about carrying out normal tasks which were simply impossible, like packing a lunch box before school. As I laid on my back, staring at the ceiling in agony, I made a promise to myself that if ever my condition improved, I would do my best to raise awareness and help others facing the same challenge. 

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This is a horrible disease that leaves patients totally disabled and families in pieces. My early symptoms could have been a giveaway: a positional, blinding and pressure-inducing headache, severe fatigue, tinnitus, a metallic taste in the mouth, severe nausea when elevated or standing for a short period of time, and many other neurological symptoms. So, education is obviously key.  This is why the Spinal CSF Leak Canada was established. Keep persisting and don’t ever lose hope.



Have you or a family member been affected by a spinal CSF leak? If you have a story that you’d like to tell, please email us.