Fundraising for private medical internvention & rehab

++ Update: My Condition is More Complex Than We Thought ++

I want to share an important and unexpected update regarding my health journey. Recently, I saw a private spinal surgeon, Mr. Dare, at Wessex Nuffield. After carefully reviewing my scans and hearing the full timeline of my symptoms, he has revealed some shocking news: I do not have a spinal issue.

Contrary to what I have been told by the NHS for the past four years, there is no sign of a herniated disc or any previous herniations. In fact, my spine is very healthy, with no evidence of a degenerative disc. Mr. Dare believes that my severe symptoms are neurological in nature, not spinal, and that the NHS has been "leading me up the garden path to fit me in a box." He has strongly recommended that I see a private neurologist and neurological surgeon at Nuffield and will be referring me for further evaluation.

Additionally, my radiology notes from Conquest Hospital were recently amended to mention a "possible anterior cord lesion at T6-5." This could be the underlying cause of my symptoms, but it’s also not a good outcome and raises new concerns.

To make matters worse, on Friday, I experienced a frightening seizure-like episode. I suddenly lost all power in my legs and collapsed to the floor, accompanied by extreme nerve buzzing and pain. I was rushed to A&E, where a CT scan ruled out a blood clot or stroke, but I need an urgent MRI to get more answers. The MRI is scheduled for tomorrow, Tuesday, 27th August. Until then, I have been advised to stay in bed.

The realization that this is a neurological issue is daunting. It is far more complex and costly to treat than a discectomy, and the potential treatments are much scarier. We are now looking at possibilities such as chemotherapy, radiotherapy, plasma exchange, and long-term rehabilitation. There’s even a chance I may need a wheelchair if I don't regain strength in my legs.

Given the complexity of this new diagnosis, I am more determined than ever to continue fundraising. I cannot rely on the NHS for the swift and comprehensive care I urgently need, especially given the past delays and misdiagnoses. Your support remains crucial as I navigate this challenging path ahead.

Thank you from the bottom of my heart for standing by me during this difficult time. Your kindness and generosity are making it possible for me to pursue the care I need, and I am deeply grateful for every contribution.

With heartfelt thanks

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Dear Friends, Family, and Kind Strangers,

My name is Toni, and I’m reaching out in sheer desperation. For the past four years, I have been living a nightmare due to a severe and progressively worsening spinal condition. Despite my persistent efforts to seek help through the NHS, I have faced countless delays, denials, gaslighting, and a lack of appropriate care. This has resulted in irreversible damage to my body and a drastic decline in my quality of life.

In 2020, I first reported numbness in my leg and back pain to my healthcare providers. An MRI revealed a disc damage but instead of receiving a treatment plan, I was left to manage the symptoms on my own. In fact, the A&E neurosurgeon told me to stop coming in to A&E for help. My condition has since worsened. I have herniated the same disc a further 3 times and experienced severe nerve pain, and debilitating symptoms that now threaten my ability to walk and manage basic bodily functions. Some of my poor friends have experienced one of the major herniations and it was incredibly traumatic for them.

Most recently, in July 2024, I suffered the most recent herniation of my L5-4 disc. The pain has been excruciating, with bilateral nerve pain radiating down my legs, and I now experience severe urinary issues that suggest nerve damage. Despite the clear severity of my condition, my requests for specialist care have been ignored or denied repeatedly. The ongoing neglect has left me with permanent weakness in my left leg, damage to my sciatic nerve, and a bladder and bowel that barely function.

A urologist has confirmed that my nerve damage is directly related to the herniated disc, and support from a spinal surgeon is now crucial to prevent further deterioration. Unfortunately, after years of inadequate care and delays, I can no longer afford to wait for the NHS to provide the treatment I urgently need. I also don't trust them with my care anymore.

This is where I need your help.

Why I Need £15,000

The funds raised through this campaign will go directly towards:

*Discectomy Surgery: This procedure is urgently needed to relieve the pressure on my nerves and prevent further irreversible damage.

*Post-Surgery Rehabilitation: Intensive physiotherapy and rehabilitation to help me regain strength and function in my legs, bladder, and bowels.

*Ongoing Medical Expenses: Including consultations with specialists, follow-up care, and necessary medical equipment.

I have always been proactive about my health. I follow an anti-inflammatory diet, go to the gym regularly 3 times a week, and invest in private osteopathy, massage therapy, supplements and tools to support my ability to hold down a job. But despite all my efforts, I cannot do this alone anymore.

Your Support Means Everything

The past four years have been a relentless battle against pain, frustration, and fear. The thought of losing my independence terrifies me, but with your support, I believe I can get the treatment I need to regain my life. Any contribution, no matter how small, will make a significant difference.

Please share my story with your networks and help me reach my goal. From the bottom of my heart, thank you for taking the time to read my story and for any support you can offer.

You can help improve my quality of life, and I trust my community of friends far more than the crumbling NHS.

Toni x