Medical Costs - Neurosurgical Consult & Upright MRI

I never do this type of thing but I have resorted to asking my friends around the world for help to allow me to afford a consultation with a Neurosurgeon and an Upright Full Spine MRI scan.

Let me tell you my story. In July 2021 whilst working at a cosmetics factory as a Multi-skilled Operative, I injured my back for the first time. I worked while injured for 2 months, then took 4 months off work during which time I did start to recover and I thought the issue went away after 6 months.

Fast forward to 26th June 2023. I had been in Shropshire for a friend’s birthday doing activities like gorge trekking, bouldering and horse riding - most of you know I have ridden horses for most of my life and is really the only hobby I ever had. On the day of checkout, I was meant to have one final riding lesson before driving back to Lowestoft, however, when setting down a light carry bag at reception while checking out, my back slipped out again and I have been in pain ever since. I had to cancel my riding lesson and drive 4 hours back to Lowestoft in agony and discomfort.

After complaining for months and having been to physio multiple times (including a private session in Jan 2024) which was unsuccessful in making anything better, in March 2024 I was finally sent for an MRI which showed multiple disc prolapses and compressions, the most serious being the Cauda Equina nerve roots. The radiology report noted that a “neurosurgical consult” was advised, however this was either not flagged correctly by James Paget Hospital, or was not picked up and actioned by my GP. This is now with a medical negligence ‘no win-no fee’ solicitor who reached out to me offering their assistance. (This is ongoing while I continue to struggle to get appropriate answers and treatment for my specific issues.) When I went in for the results with the Musculoskeletal team in May, I was given a Cauda Equina Syndrome emergency red flag card and was told when my symptoms get worse or I develop new ones stated on that card, to present myself at A&E. They referred me to physio yet again. I kept telling them that the exercises hurt me too much to do and always left me laid up in pain for days afterwards so they stopped sending me to physio. I then presented to A&E again in June at James Paget and in September at Ipswich Hospital hoping a different hospital might have more competency in CES and the spinal issues I was having. I was sent away each time saying to come back when it’s worse because I did not have full onset or “complete” CES, symptoms which include bladder and bowel incontinence, numbness in the saddle region or bilateral sciatica/complete loss of leg function. However, if you research CES medical articles (like I have done over the last 2 years) and the experiences of others who have been diagnosed, you will see that not all patients present symptoms the same way, and that CES can be present without incontinence or numbness. Also, there is such a thing as “incomplete CES” where if you are “lucky” like me, you present with blue flag warnings such as urinary or bowel disturbances and altered sensations in the nether region, both of which I had developed and still have to this day. This is a widely misdiagnosed condition and unless you exhibit the red flag symptoms which are unlikely to be reversed with emergency surgery, no one wants to help.

I had another MRI done in June 2024, then a third in October 2024, after which I was given a cane to use for balance issues and placed on a Spinal Surgery waiting list. I had a final assessment in March 2025 with Orthopaedics at the Norfolk and Norwich Hospital (because I refused to go back to the incompetency of James Paget or Ipswich) before waiting ever so patiently for a surgery date and the hopes I could finally have some relief, although I was worried that none of my reviews or consultations previously involved neurology, which I felt was important, given that I have clear neurological deficits and of course, the first MRI had advised “for neurosurgical consult” which I had not forgotten.

Now at this point, I cannot walk without teetering off to the sides, the grip and dexterity in my hands has declined since 2021 so cannot even hold the cane steady enough to brace myself for balance, meaning I fall all over the place like I am drunk when I walk. Being upright at all, whether sitting or standing, puts so much pressure and pain on the entire curve of my back. I am having increasing difficulties cleaning my flat, standing to the sink long enough to wash dishes (also my hands cramp up and I drop dishes), prepping food, cooking, taking care of myself (ie showering) and my cats. Any small bit of activity exacerbates the pain and I am laid up for days afterwards. I have been largely housebound for months and mostly bedbound for weeks. More recently, I realised that if I do not get relief soon, I will need to start looking into getting a social worker or hire someone to help clean my flat each week and have meals cooked or delivered to me but remained hopeful that the pain and discomfort would soon be over…

Last week, I receive a letter from the N&N Hospital that there is nothing they feel they can do surgically to help my symptoms, and recommended my GP send me back to pain management. I am already on opioids for the pain! I am terrified that I am now being left to suffer and will soon enough become paralysed or incontinent because with spinal injuries, things can only get worse, not better and I am already declining so nothing has “resolved itself”. They never did a recent scan to compare to, they made that judgment based on 6 and 10 month old scans. I don’t believe that nothing can be done surgically. Something has to relieve the pressure and pain in the curve of my back and not just painkillers. In most cases with prolapses and compressions in the Real World, people are offered discectomies and fusions to relieve pain and pressure. I don’t know if it’s just the region of the UK I am in where the NHS just isn’t knowledgable about CES, or if it’s the whole of the UK trying to save money by not cutting people open until it is an emergency, however other people with my exact issues around the UK have gotten treatment and relief. If they didn’t get offered timely treatment, they ended up in wheelchairs for the rest of their lives. I believe the opportunity for me to get better sooner was missed along with the chance of seeing a neurosurgeon.

I would like to fundraise enough money to see a consultant neurosurgeon and get an upright MRI scan, since being upright at all hurts me so much that all I can do for minimal relief is lay in the foetal position all day and night. I have not been able to work for 2 years and am currently on benefits which only just pay for my bills and food. I do not even get enhanced rates for my disability. Before anyone asks, no my family are not able to help me.

I have requested a quote for a full spinal upright MRI, however they start at £575 and the only locations which offer it are London and Birmingham. The nearest consultant neurosurgeon is at Spire Cambridge Lea Hospital 2 hours away and the initial consult is £275 (follow up appointments are £200). If after the consultation with a neurosurgeon, I am still being told there is nothing which can be done surgically, I will accept it. However, my gut tells me that this is my last chance to see the right people and get the right treatment.

All donations will go towards the private medical care mentioned above, anything extra will go towards possible care/cleaner/prepped meals and keeping my 17 year old car running so I can get to these appointments easily, as they are all outside of my town and I cannot walk easily in order to use public transportation. I also do not have much help, I have less than a handful of friends that are not always in town anyway to help, plus I do not want to burden friends by going out of their way to keep helping me.

I thank you from the bottom of my heart in advance for any help you can give. Whilst this is embarrassing to resort to, this is honestly my last ray of hope.

Terrilyn