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What happens when they say they can do no more…?

By Kathryn Willis

The beginning...

In 2013, I was diagnosed with spontaneous intracranial hypotension. The diagnosis itself was easy - I had no spinal fluid, and no known cause.


Treatment in 2013 for SIH was unknown. Typically, intracranial hypotension can be treated easily with a blood patch (injection of your own blood into your spinal column, to form a scab over any holes). It is not talked about, but a lot of women get intracranial hypotension during or after pregnancy. Either because the pressure of the baby causes a breach of the spinal dura, or because the epidural during delivery creates the hole. In these circumstances, a blood patch works in 99.99% of cases. The patient isn’t genetically predisposed to holes in their spinal column, and the hole had a cause. When you cut your skin, a scab can help new skin grow underneath, and so, when injected into your spinal column, it could heal a hole in the dura.


But what if, like me, the hole had no cause? First, they have to find the hole. Assume they do. How do they then fix it? Or prevent it from happening again?


I was treated through blood patches initially. Multiple attempts at this caused me to have a spinal stroke. So, they tried to find the leak. I was lucky - they did. It was in my thoracic spine. I also had a slipped disc in my neck. In 2014, a surgeon removed my slipped disc, and injected fibrin glue over the hole in my spine. This worked and for a short time, I felt great. But then, as my body had been so used to insufficient spinal fluid, it overreacted to its presence. I developed intracranial hypertension (too much spinal fluid) causing vascular compression in my brain. To counteract this, in 2015 a stent was placed.


Still, something wasn’t right.

'Live with the pain'

In 2016, the surgeons decided there was nothing more they could do for me. I remember the moment. I had attended the appointment alone, not knowing that I would get bad news. Following it, I sat in the park crying on the phone to my sister for the loss of the life I thought I could have.

I was told to learn to live with the pain. I was transferred to the chronic pain clinic. I was given drugs and told to do yoga and therapy. I did. To a point, it worked. I lasted, living with my pain. Until 2021.


Something new...

In 2021, something new happened. Every time I stood up, I could feel my spinal fluid draining, and my brain sinking. I hope none of you know that pain. It was debilitating. It was the type of sudden pain to make you sick or pass out.


I raised it with the pain clinic. I was told it was just a new type of pain. To live with it. Try these new drugs. They called them ‘postural migraines’.


But I knew my body. Since 2021, I have been fighting to be heard. I’ve written emails, made calls, attended appointments. Pleading for help. My GP intervened. When we continued to meet resistance (in that I was just in chronic pain), my GP tried to refer me to another hospital but my hospital is one of the world centres for expertise in neurology, and so no other hospital would accept me as a patient. I was too complex.


COVID happened...

All my appointments at the pain clinic became telephone calls. I started to develop other symptoms other than pain. I developed tremors so bad I couldn’t hang baubles on my Christmas tree. My body jerked for no good reason. I lost control of my bladder. I sent videos of my tremors to my pain consultant. They agreed I should be seen in person. That never happened.


I was getting nowhere. By now it was 2023. And then, my 6 monthly appointment was delayed by another 2 months. By the time it happened in August 2023, something else had happened. My consultant had left. A new, interim consultant had taken over the pain clinic. So, when at my (telephone) appointment, I tearfully went through everything that was going on, they agreed it wasn’t normal. They referred me back to the main neurology team and ordered an MRI of my brain and spine.


It’s now April 2024.

My MRI was in February, and I haven’t had my appointment yet for the main neurology team. It is scheduled for May. But this week, I received news no patient wants to ever have. Not in person, not over the phone, but by being copied into a letter to my GP detailing the results of my MRI.


My condition has returned. There is significant evidence of low spinal fluid pressure. I have vascular compression in my brain stem. I need urgent brain and/or spinal surgery.


But this isn’t the point of this story. There was something else. Something worse. Something that will change my life forever. Since my last MRI in 2016, I have developed siderosis. My brain has been bleeding so much (by being pressed against my skull) that I have toxic levels of iron build up in my brain and spinal column. The condition isn’t reversible. It’s degenerative. It will only get worse. Worse than the fact I have been living through the pain of my brain bleeding being told that it was just chronic pain.


The condition was PREVENTABLE.

If someone had listened to me and scanned me, my brain wouldn’t have continually been pressed against my skull causing intracranial bleeding.


And so, the point of this story. The doctors not listening to me has changed my life forever. While they can fix my spinal leak, the siderosis is going to cause degenerative changes, such as hearing loss, dementia, and the inability to walk. At some point, death.


I always knew my body, I always knew it wasn’t chronic pain. And so my message to anyone reading is don’t give up. Don’t let it take years to be heard. Whether you are chasing a diagnosis, or trying to get help with an existing one, you deserve to be heard.

You DO know your body. Fight for yourself. Please.


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