Anyone diagnosed with tethered spine in adulthood?

[Thisoldheartofmine]

If so could you share your experience?
Friend in this position and has not found medical practitioners helpful or knowledgeable.
She has an upcoming telephone appt with a GP who seems interested and she is wondering what questions to ask .
In the past she's been told that she'll be in a wheelchair in later life and dismissed.

Really concerning your friend was told she was guaranteed to become a wheelchair user (not that there’s anything wrong with joining our number, but if you can keep on your feet life is vastly simpler, frankly) & that she feels the condition wasn’t explained properly when she was diagnosed.

A GP being interested & supportive is always good, but their knowledge base is perforce, as a generalist (& I’m not knocking GPs, who are a vital resource & often excellent at managing complex conditions/factoring in how they’ll impact even simple things) limited. Their ability to help will also be limited by things like access to your friend’s notes & scans.

Good questions would be whether there are activities to pursue & ones to avoid; where treatment for any comorbidities (eg scoliosis) falls in the risk/benefit analysis; & what to look out for in terms of worsening symptoms that would indicate a neurosurgical referral was warranted.

If it helps your friend at all, in some adults tethered cord really doesn’t progress in the way she’s been told to anticipate. It’s not a degenerative condition so while it may progress, HCPs have been less than helpful with that prediction. Nobody needs a Damoclean wheelchair.

@RosaMayBillinghurst That's really helpful , thank you !
Damoclean wheelchair. I have such a clear picture in my head now, that did make me laugh!
She's had such a bad time with it not being recognised- parents who were less than sympathetic when she was in extreme pain as an adolescent. Made her lie on a plank, thought she was being.dramatic.
Dx in her 30s (! She's now 65 )after birth of child but she's been treated so dismissively by medical profession - see w/c remark and another asked how sex life was - that's she's avoided them since .
She doesn't say much about it but I think it affects her bladder and bowel function quite a lot.
And she's worried about progression.
I don't really understand the distinction between it not being a degenerative condition but one which could progress?

I was 30 when I was diagnosed. I did prior to surgery end up in a wheelchair, but I had the surgery to have my spinal cord released and despite some significant complications (an abscess at the surgical site that burst to give me meningitis then the site not healing so needing 7 weeks of a lumbar drain) I had some unexpected improvement and with about 18 months of physio therapy I moved from wheels to walking frame to stick to independent walking.

The surgery was 15 years ago and I have been stable since. It's painful and I have some continence issues I need to manage but I am hopeful of remaining on my feet.

Oh your poor friend @Thisoldheartofmine - that sounds as if she should really have been diagnosed as a child; & also as if she’ll have racked up damage from “pushing through” (& the plank!!!).

The easiest way to think of degenerative vs progressive is the first will get worse, & often there’s a predictable pathway & no - or only very limited - mitigation possible. Progressive means that it may get worse, but there’s literally no set pattern to it, though in some conditions you might be able to identify [vague] trends. Does that help?

If it’s impacting bladder & bowel function significantly now’s probably the time to consider surgery, especially given her age. As in, it’s better to do it younger - easier to rehab, better bone density, lower anaesthetic risk.

@OddBoots I’m sorry you’d such a rough go with your surgery, but I’m so pleased for you that things have been stable for so long: long may you stay standing/walking/dancing/playing hopscotch & generally bipedal-powered 😊

Oh you're such a sweetheart @RosaMayBillinghurst to show such kindness and sympathy to strangers.
Especially as it seems that your path has not been an easy one , what with that Damoclean wheelchair falling on you.
My friend has always tried to stay well with swimming , carefully judged yoga and walking.
I'm not sure she'd consider surgery. 😕.

@OddBoots what a time you've had !!
Thank you so much for posting. I'm adding my wishes for an all singing, all dancing oddboots .

@Thisoldheartofmine
That’s very kind of you to say, but I feel that I’m incredibly lucky in lots of ways (I don’t have to worry about paying for my medical care; I receive disability benefits which simply aren’t a thing in much of the world; I have a support network of family & friends & know that I am loved; & while there are things I have lost to disease progression, I’m so very lucky to have done them at all… 😊). My life could be vastly worse - & if I were to focus on the bad (& to be fair, there is plenty to choose from there 😁) I would just be thoroughly miserable, very poor company, & gain nothing useful/helpful from it. I let myself feel my feelings & then let go of them. They may sometimes launch a sneak attack, but I don’t sit in them. That’s more than enough about me though 😶

Your friend having reservations about surgery makes sense, especially given her past experiences. The GP probably wouldn’t have sufficient knowledge to talk your friend through the improvement she personally would be likely to see if she had surgery; but they would probably be able to give a more general idea that hopefully she’d find useful in deciding if she’d consider it now/be willing to consider it in future.

@RosaMayBillinghurst , what an amazing outlook. I'm lost for words , you must be a great person to know in RL and what a role model to friends and family .
It's not related I think , but I have learned so much about having a cheerful and positive outlook from the friend I'm referring to here.
Now I'm older I've come to realise how important role models and mixing with different personalities is.
What a world we live in .

@Thisoldheartofmine
Again, you are too kind 😶

My mother died very suddenly when I was 10 & my sister was 7 so I’ve long been aware that life is a gift & not a given; & also that, as Dumbledore puts it:
Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.

How is your friend? Has she had her GP appointment yet? Was it helpful? I’ve been crossing my fingers & holding my thumbs for her.

@RosaMayBillinghurst , not being too kind .I stand by my belief that you are an exceptional person😀
My friend seemed very happy with her appointment although in my book it didn't yield much help.
I think she's mainly thrilled to find a sympathetic doctor who isn't dismissing and trivialising.
She asked about a new drug that inoculates against constant bladder infections but apparently it's still only at the trial stage.
But he gave her a prescription for infections and talked her through how to get it on repeat.
And he confirmed that yoga ( which she does) was a good approach.
I'll have to check whether she asked about any referrals which is what I had suggested.

@Thisoldheartofmine
Having a good & responsive doctor, someone she feels able to trust - that in & of itself is a huge positive. As is timely access to treatment for UTIs. I’m so pleased for her: even if it’s not huge progress, it’s progress.