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"I was aware that the recovery from this rare life changing and challenging condition was also a rollercoaster recovery."

Kiki profile

Kiki

@Kiki_CSF_Journey

Kiki suffered a spontaneous cerebrospinal fluid leak (CSF leak) causing signs and symptoms typical of IIH. Her presentation of signs and symptoms puzzled doctors for over 8 months which put her on a long and arduous road of multiple hospital admissions, multiple tests, misdiagnosis, all while her health declined.

Kiki does not fit the typical demographics of a patient with IIH. She is past her fertility years, is not overweight, and has no associated medical problems.

In the fall of 2022 Kiki began to experience an achy neck, pain between the shoulder blades, and a headache. She was not sure if these symptoms should just be tossed up to her recent diagnosis of  fibromyalgia. On September 21st her above symptoms worsened as she began to experience a whooshing sound in her head that she describes as popping candy (pulsatile tinnitus).

On Saturday morning October 2, 2022, Kiki awoke with the worst headache she had ever experienced, bright red eyes, and very blurred vision. No over-the-counter medications could alleviate her excruciating pain. The next day with an increased heart rate, she was admitted to the hospital for 3 days only to be told that it was a flare-up of her fibromyalgia, despite no resolution of her horrendous head and neck pain.

After discharge she experienced difficulty in everyday tasks such as writing, driving, holding utensils, was unbalanced, and her pulsatile tinnitus worsened with associated vertigo. As her speech became slurred and delayed she silently worried that she had Parkinson’s or a motor neuron disease. She felt so scared and alone trapped in this new body.

She saw her primary care doctor (PCP) who blamed these symptoms on menopause. This was unlikely as she had a total hysterectomy 18 years before and had been on hormone replacement therapy ever since. With persistence and several visits to her PCP,  she finally underwent an MRI of her spine which revealed spondylosis. She saw an orthopedic doctor who performed a nerve block but resulted in no improvement of her neck and shoulder pain. Unfortunately her vertigo and pulsatile tinnitus continued to worsen.

Kiki finally met a neurologist, Dr Lambru, who ordered an MRI and MRV of the brain with contrast which had revealed complete brain sag, a bulging pituitary gland, three subdural bleeds all caused by a tear in the dura with an associated cerebral fluid leak.

With the diagnosis of a CSF leak, she had two epidural blood patches in an attempt to cover the area where her CSF was leaking from. In November, she underwent a CT myelogram which discovered a thoracic 8 (T8) CSF fistula and underwent a repeat procedure the following month to reconfirm findings and  to place a fibrin glue patch at that level of her CSF leak with no resolve.

With persistent symptoms, on February 2nd, 2023 she underwent a 4 hour surgery to repair the CSF fistula with an incision of the thoracic area of her back by neurosurgeon Dr. Zebian in an attempt to seal off the CSF leak. She stayed in the hospital after surgery for seven days to rehabilitate.

Over a month after her surgery, Kiki still experienced occasional headaches, on and off blurry vision and intermittent pulsatile tinnitus but kept a great mindset. She even named her lower back scar Carrie the caterpillar.

About 6 weeks after her CSF leak repair, Kiki began to experience temple pain and facial numbness along with blurry vision and floaters in her eyes. As you can imagine her anxiety had set in as her first thoughts were that her surgery failed and is leaking again.

“I was aware that the recovery from this rare life changing and challenging condition was also a rollercoaster recovery”

Fortunately a repeat MRI of the brain did not show any evidence of a CSF leak and her pressure was normal but requires treatment now for trigeminal neuropathic pain.

As of today, Kiki has bouts of fatigue but is grateful to be on selfcare mode. She continues to be a fashion stylist, a wife, mother, and fun-loving nana.

Thank you Kiki for sharing your medical journey with the IIH community.

You can continue to follow her story and recovery on Instagram @Kiki_CSF_Journey 🦋

Kiki profile

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