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Hi! My GP sent me for MRI the other day as I’ve been having cough/Valsalva headaches and she’s a bit concerned about increased intracranial pressure. She didn’t specifically mention Chiari, but said that she was concerned there might be a neurological involvement.
History: Earlier this year I was diagnosed with both fibromyalgia and interstitial cystitis (which is what GP diagnosed me with, urologist is diagnosing as painful bladder syndrome in line with the new nomenclature, as my symptoms are more consistent with myofascial trigger points, hypertonic pelvic floor dysfunction and neuralgic pain, rather than bladder wall sensitivity – although there’s a bit of that there). I’ve had TMD for about 20 years now, and have had chronic headaches, neck pain, shoulder pain, and pretty much everywhere pain. Am now being investigated for hEDS, which my physio believes is more likely than fibro (no full dislocations, multiple subluxations, chronic joint pain, bursitis, patellofemoral dysfunction, osteoarthritis in feet and hands, etc, etc). Also diagnosed with adenomyosis. Suspect possible PoTS or dysautonomia but getting properly assessed for it where I live is nigh on impossible. Also suspect IBS and/or gut motility issues, but that’s pretty low on the list of priorities at the moment.
Current symptoms: For a while now I’ve been getting cough headaches, and I just put it down to TMD, but in the last few weeks they’ve worsened – both in frequency and intensity. They’re different to the normal cervicogenic headaches that I get and don’t improve if I take anti-inflammatories. Also, they’re worse on standing, and increase steadily throughout the day (I get relief when lying down). Also dizziness has increased, tachycardia has increased, swallowing difficulties have increased (have always had some difficulty in that respect, and often choke on absolutely nothing at all, which is really embarrassing LOL). Tinnitus has increased, and is occasionally pulsatile. Tingly, numb hands. Vision has blurred (I did start amitriptylene about 8 weeks ago, but this seems different, and it’s especially bad in the mornings). Increased eye artefacts; visual snow, floaters. Increased urinary frequency and retention (I do have IC/BPS, but this seems different to normal flares, which I’ve pretty much got under control through a combination of physio, diet and amitriptylene).
I’ve had a look at my MRIs, and gone through all of the radiological diagnostic criteria for Chiari, and it’s not a huge descent, but it looks to be below the foramen magnum. The MRI was supine, and there’s a number of resources which suggest that for EDSers, a supine MRI doesn’t always show the extent of descent, only an upright MRI will do that. I can’t tell whether it looks like it’s within the realm of normal or whether it qualifies as low lying tonsils or even Chiari. Doctor hasn’t got the report yet – they put the images up on the patient portal straight away but don’t load the patient report until 14 days later, so that you have time to discuss the results with your doctor before seeing the report, but is spectacularly unhelpful when the earliest I can see my doctor is three weeks away.
The last image is a lower spinal MRI I had a few months ago (checking for SBO and/or tethered cord, which were both negative, although I have both a sacral dimple and lumbo-sacral naevoid hypertrichosis and had been previously told that it was SBO but nothing to worry about on the basis of those signs), does this look like a syrinx, or just part of the spinal cord? Do syrinxes even go that far down?
Any advice would be greatly appreciated, I’d like to be as well informed as possible. Thank you!
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