Specialists rely on the radiology reports
28 September 2026
Funding Surgery After Years of Dismissal and Gaslighting by the NZ Medical System
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Original 2022 CT scan Amended in 2026
28 September 2026My largest cyst was 20mm x 14mm in 2022.
My largest cyst is 38mm x 14mm in 2026.
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MRI Inconsistencies
26 September 2026So I challenged the radiology report I just got, which had no cyst measurements whatsoever.
The radiologist is adamant that the cysts are stable vs my 2025 scan where they stated "No cause for symptoms evident. Unchanged sacral nerve root perineural cysts which are very unlikely to be the cause of the patient's symptoms.". In 2022, my report stated my largest cyst (left S3/S4) was 14mm x 20mm. Today, the same cyst measures 14mm x 38mm. If you will also notice from the image, that there are FIVE cysts, not four bilateral ones which are "unlkely to cause my symptoms".
Stable definition - "a finding such as a nodule, lesion, or fracture which has not changed in size, shape, appearance, or number compared to a previous imaging study".
By printing the word "stable" on every single sequential report, the reports create a false illusion of flatlined growth since day one.
It's sad how much pushback and dismissal I get when I challenge these things, but I sincerely hope after seeing this, you can understand why it is so important to self-advocate.
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NZ radiology "findings" and perpetual specialist referrals
23 September 2026I've just had my followup appointment with my American Tarlov Cyst Specialist, who has confirmed that my cysts are not "stable" but are steadily increasing in size. He has also reconfirmed that in fact there is anterior bone erosion.
I currently have 7-8 outstanding referrals from early 2025 forward, which have yet to be scheduled. All other specialists have promptly labeled me "out of scope". I am still fighting with ACC Insurance for any actual resolution but have only received a lifetime supply of adult diapers. To be continued..
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New MRI Results
2 September 2026I've received my MRI radiology report back and it states "Stable Tarlov cysts. No new growth or boney erosion. Slight progression in arthritis." The radiologist did not give me measurements on the cysts (the whole reason I had the MRI done), so this seemed highly suspicious. How does arthritis cause saddle anaesthesia exactly? I genuinely don't understand the firm denial of the existence of Tarlov Cyst symptoms. Studies state that symptomatic Tarlov Cysts are rare, not non-existent.
I forwarded the MRI images to my Overseas Tarlov Cyst Specialist and my response was "From my initial review, it does appear that the Tarlov Cysts have increased somewhat in size. Overall, I do see some growth but no new areas of concern. We will certainly go over all of this in detail at your appointment next month." Funny that.
My followup is in 3 weeks, so I'll make sure to post another update then. Thank you all so much for your support!
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I'm off to have another MRI!
18 August 2026Maybe I'll get support from the Radiologist. Maybe not. Regardless I am happy to see if anything has changed since the last one in June 2025. Maybe they'll finally acknowledge my symptoms now that I have an ACC document from a Neurosurgeon clearly stating my injury. Maybe not. It should take a week or so to get the results back.
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MRI finanly scheduled - YAY!
14 August 2026I've been scheduled for an MRI again next week to check on the growth of the cysts. Hopefully they can tell me if there has been anymore bone erosion. My last MRI was in June 2025. I'll upload my new imagery once I receive it.
I've also been referred back to the same public health system Neurosurgeon that misdiagnosed me in 2022 and didn't understand why I was "bothering him". I'm not too thrilled about being forced to go back to him, but with the public system I don't get a choice of doctors. Back into the hamster wheel I go.
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My Symptoms
9 August 2026• Crushing pain from cyst location when rectum/bowels contain volume that presses against the cysts on the way out, as well as after my bowels are emptied (I must lay on stomach with pain until it subsides)
• Uncontrollable urine/ faecal urge incontinence (urge sensation replaced by PGAD/ horseshoe shaped dysesthesia on bum and down backs of both legs)
• Unable to sit at 90-degree angle without crushing pain on the cysts
• Numbness / dysesthesia at top of bum crack and down both buttocks to back of thighs (horseshoe shape)
• Persistent dysesthesia on bum/backs of thighs and bottoms of both feet
• Increase in sacral pain with sitting or walking
• “Abrasive” pain inside deep inside left hip with breathing
• Dystonia in toes and feet
• Anaesthesia and dysesthesia of perineal and saddle area
• Dyspareunia
• Urine Retention up to 750ml as recorded in hospital clinical notes
• Syncope due to severe sacral pain when emptying bowel
• Long periods of constipation (up to 16 days with normal, healthy diet) (fibre and laxatives make the pain unbearable due to crushing pressure against cysts)
• Haematuria
• Persistent feeling of full bowel
• Persistent feeling of irritation in bladder
• Currently on restricted diet of simple carbs to minimize crushing pain when full bowels move past cysts
• Foot pain on soles of both feet like walking on broken glass (pressure on foot pads while stepping increases the pain)
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Medications I've tried
9 August 2026• Topical Amitriptyline
• Gabapentin
• Nortriptyline
• Amitriptyline
• Celecoxib
• Laxsol
• Molaxole
• Oxybutynin
• Solifenacin
• Intravesical Botox injections into inner walls of bladder delivered by cystoscope
• THC oil
• CBD oil
• Medical marijuana
• Simethicone
• Series of Pudendal Nerve Blocks
• Ketamine iv drip
• DIAGNOSTIC CT Guided Caudal epidural (epidurals are contraindicated for Tarlov Cysts patients)
Alternative pain management:
• 2 years of listening to the "Mindful" and the "Headspace" app to help with my "unresolvable idiopathic" symptoms (as prescribed by the Pain Team after my surgical injury), with no change in pain level or symptoms, no benefit to sleep quality, no improvement in mood regarding ongoing medical issues.
• Hot or ice pack pressed firmly against sacrum
• TENS Unit (maximum intensity (100hz) on sacrum at S2/S3) - provides a nice distraction, helps soothe sacral pain somewhat; INCREASES incontinence frequency and urge intensity
• TENS Unit (low intensity (10hz) on sacrum at S2/S3) - improves incontinence frequency slightly; overall less accidents throughout the day; does not help with sacral pain at all on lower setting
• Electric massager helps pain area somewhat but increases dysesthesia symptoms and can hurt sometimes
• Video gaming as a distraction
• Pelvic Floor Physiotherapy for 1 year - no improvement, worsening symptoms
• Acupuncture – served as temporary distraction but no longer helps
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