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"Discovery of Tarlov Cysts on emergency MRI scan"

About: Royal Shrewsbury Hospital / Accident and emergency Royal Shrewsbury Hospital / Trauma and orthopaedics

(as a service user),

Last year I had been suffering sudden onset excruciating lower back pain, numbness and weakness. I was admitted to hospital via my GP. An MRI showed Tarlov Cyst disease. 8 months later I am struggling with nerve pain etc caused by this disease. But because it is a rare disease I feel like I'm hitting my head on a brick wall with the health professionals who wrongly assume they are asymptomatic.

Yesterday I attended an online meeting with Dr. Jan Warnke leading neurosurgeon in Germany. Over 350 attendees mostly patients with Tarlov cyst disease, all with similar stories as mine. Dr. Warnke was clear that Tarlov cysts are the cause of pain. They are a real organic disease with pain. If the CSF flow can be improved and Tarlov cysts treated with thecaloscopy and valves reconstructed it will have positive outcomes for patients. But the majority of GP's & healthcare professionals are wrong to assume they are asymptomatic.

It is a battle fighting this disease, but on top is another more insidious battle with the people who should be treating this disease. It's a form of medical gaslighting. I'm just so glad I attended Dr. Warnke's meeting yesterday, as I will have more evidence to show my GP that my pain is real and that this disease has at its main core -pain as a symptom.

Left untreated these cysts will grow. It's an ongoing disease not a norm of nature. I have received no treatment for the cause of this disease, which will over time erode my sacral canal and cause irreparable damage to nerves and bone and blocked vessels in the area. All in all not a very good outlook. The narrative that Tarlov cysts are incidental findings and asymptomatic needs to change. This is a very real organic disease with severe pain.

In January I was in a car accident. Since then my pain in the area affected by Tarlov cysts (S2) has been exacerbated. I have spoken with my GP on several occasions and also been seen by my GP. Each time I have asked for treatment or an MRI to see if the Tarlov cysts have been damaged, as such accidents can cause the cysts to grow. My GP said last time if I mention it to a clinician they would want to operate so best say nothing!

All I want to know is if the accident has caused my cyst to grow and what damage is occurring as a result. I don't think this is too much to ask. I have increasing difficulty in doing simple things - sitting, walking, lifting all cause pain and an increase in the CSF pressure which causes further leaks to occur causing intense headaches as well. If the medical profession are mostly choosing to ignore the fact that Tarlov Cyst disease is a real organic and painful disease what hope is there for patients struggling with this rare disease? ...

I feel utterly abandoned. Instead I'm in the position where I will have to pay to have a private consultation with one of only two expert neurosurgeons in the UK who are expert enough to interpret my MRI from last year and give me their medical opinion. It's not good enough that I have been told the cysts are asymptomatic when each day I live with increasing pain and disabling functional effects of the cysts such as; not being able to go the toilet normally and other symptoms in this area....

There are thousands of others in the same position as myself. We are the unseen, unheard warriors who live each day with pain and chronic disabling ability to even go the toilet normally, yet we are consistently told these cysts are not the cause. I'm not sure why this is their response. Because if they (GPs, Orthopedics, Rheumotologists, neurologistsetc) took the time to sit and watch the meeting that DR. Warnke did yesterday, they would be in no doubt whatsoever that Tarlov Cyst disease is a very real organic and painful disease. Causing untold pain and misery for the many thousands of people affected by it and living with it. We don't need to be told its asymptomatic or incidental. We do need to be heard and treated.    

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