Maybe 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.
I'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.
• 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)
• 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
