Honestly. It’s like ‘my business’ is none of my business.
I requested to see them on the NHS app, and they told me they couldn’t do this from the surgery and to refer to the NHS guidlinrs. I did that, and the guidlines say that my surgery is the one who needs to sort it. When I replied and told them as such, they just ignored me.
Phoned my GP and can’t get past reception. They say I need to contact the neurologist. Contact the nuero and can’t get past the receptionist - get told I already have an appointment in June.
Apparently the NHS has a 4 week embargo on imaging results. Mind-boggling.
I sympathize, when I had my last MRI even the two-day waiting period for the evaluation felt too long. They handed me the raw images on a pendrive right after the exam automatically, and I opened them at home using a FOSS DICOM viewer but of course could not make sense of it.
@martbetz Like I said, Mart, I had to be very assertive in requesting information. I went to the clinics and hospital in person to follow up. Forced to wait day-long each time often with no progress. It was a pain. In fact, one nurse got so worked up and offended that she was balling for no reason. Like I insulted her and her specialist deeply and irreversibly just by requesting information. Incredibly confusing drama.
@Tamas_Papp Yes, that is the another problem; we do not have the expertise to interpret the information. In some ways, AI could be helpful in this situation; someone here will probably murder me for saying that. What I mean is that there is more information available than previous generations. It takes plenty of research and effort to verify though, and of course, specialist confirmation, to ensure we are not loony.
I’m in the US military health system, and about a month ago they announced that all test results and clinical notes were going to be made available immediately in the user-facing website. They used to hold certain results until a clinician reviewed them, but no more, I now can find out about all my lab results in plenty of time to get wrapped around the axle with WebMD research before bursting into their office with angst at my next visit.
This, in a rather secret-protecting sort of organization, in a country in turmoil over various freedoms. I just can’t characterize the world into my normal buckets anymore…
Unfortunately, any surgery is likely to be progression-slowing rather than fixing anything - I’ll know more when I have the neurosurgery appointment next month, but that was my GP’s general opinion.
Sure, the whole issue is probably sign of general wear and tear. But I’d be optimistic that Surgery on the spinal canal stenosis might help with your issues. But I get you probably feel deflated after all this time. Sending you positive thoughts and feels!
Thanks for the update Mart. That’s indeed a lot to take in. Hard to imagine. Hope that the neurosurgery appointment will bring more clarity and allow you to get more answers from the specialists.
Mart, I agree that having knowledge is empowering - not knowing can be very dis-empowering and it is easy to fear the worst.
Not all spinal surgery is successful, but if a neuro is prepared to recommend it, they are likely to have good hope for a positive outcome. Treating stenosis, whether by micro-distectomy or otherwise, can lead to a dramatic, immediate improvement; alas, some nerve damage is irreversible. I have lost forever my kick reflex when hitting the left knee - I can live without that. But no one can definitively tell you what your outcome will be.
I was lucky (or blessed) enough to have most functionality recovered when I had surgery on L2/3 in 2020. Pain is my daily companion, but there’s analgesia for that: at least I can walk properly again.
So it is my hope and prayer that your prospective surgery does more than slow progression, but actually gain some improvement in functionality.
I’m very glad you now have some clarity. The things we do to our backs over time…
Your MRI and the whole discussion about the right to information prompted recollection of a recent experience with immediate feedback. Had pain in my neck, GP sent me to radiology for an x-ray. So, doing all the poses and shots, then just standing there for a bit while the technician perused the captures. He calls over the other person working in the room, they look at it for a bit, then they summon their supervisor from the hallway. He comes in, looks at the screen, then asks me, “Have you ever been in a car wreck?”
Immediate, yes, but I could do without feedback like that…
My wife had two lower back surgeries. She suffered a lot of pain, did a ton of physio and used a lot of anti inflammation mediction trying to stave off the surgery… One night she literally peed her pants…strait in to emrg and strait in to surgery…Her sciatic nerve had a dark spot on it in the imaging from the bulging disc and it lead to some lasting damage. Her surgery took her pain away and she was good for a couple of years and the next disk up herniated…so surgery 2 this time strait away and again success…She hasn’t had back issues in a few years now touch wood… These are not equivalent to your issues Mart but if there is any chance not acting will lead to permanent nerve damage then I think given the advances in techniques the surgery might not be something to put off but you will get that picture when you have your appointment… I wish you all the best…
I have my appointment with neurosurgery in ten days time - so not much longer to wait.
As it stands right now, I can still walk, though there is an obvious decline.
I know rhe issues I have are both serious and complex, and it’s the thoratic disc that’s indented my spinal cord that worries me the most - there is evidence that the cord has been effected by this at some point.
It’s all extremely scary, but I should know more soon and will keep you updated. I am so much missing getting out and about with the camera as it’s coming up to the time of year I’d normally be out doing my thing.
My T8 issue (the very, very scary herniated disc with signal change) wasn’t, after all, the main focus. I asked about it, and it seems this is an old issue that isn’t showing any signs of causing current problems. It may be something that would require attention in the future, or it may not - there was no mention of ‘keeping an eye on it’ or anything else for that matter. I have another neurology appointment next month, so I’d imagine I’d get another round of UMN tests done just to confirm (both times previously, everything was fine).
As for my lumbar issues, this was the focus. I have two disc herniations severely squashing my nerves. The plan is to surgically decompress the area and remove the offending parts of the discs. The surgeon was confident this is the cause of all my symptoms. Surgery should take place sometime in the next few months.
After two horrific years of indescribable trauma (suspected MND and a whole bunch of other scary things, and then this scare over my absolute car crash of a spinal MRI), I am mentally done. But I hope that, at long last, everything is moving in the right direction, and I hope I’ll finally be able to get some normality back… and start worrying about other things again… like exposure, framing, and where the heck my lens cap has disapeared too…
I hesitate to call this good news but it seems like it might have been worse and at least now it seems there’s some clarity and a programme for improvement. Thanks for keeping us up to date Mart.
What I mean is that there is more information available than previous generations. It takes plenty of research and effort to verify though, and of course, specialist confirmation, to ensure we are not loony.
