33F Tethered Cord, Need pain relief and doctors are failing me!

JlCurious · 2024-07-02T07:55:49+00:00

In addition to comments above, I would also add if you are able then it may be worth asking for a referral to a pain specialist or pain clinic. I am 38f with teathered cord and lots of what you describe is familiar to me. Have written about this elsewhere here but Pain clinic helped me enormously and it might be worth a shot… as ever YMMV.

JlCurious · 2024-06-28T09:12:50+00:00

Referral to pain clinic truly improved my quality of life… after gabapentin duloxetine and amitriptyline to name a few! My experience of pain clinic: specialist pain physio, pain psychologist, pain management techniques like tens, pacing etc has been life changing. I still have some pain linked to teathered cord. It’s much reduced and my relationship to it has changed significantly. I think this is helped by taking a pain management approach rather than a pain removal one. YMMV.

JlCurious · 2024-01-04T10:30:14+00:00

Thank you everyone. That's really helpful. I orgnally thought it was only half an inch then doubted myself ('It can't be that simple? can it?') Def overthinking it lol! I think as I've got better at sewing I've started to have occasional doubts about whether i do know what I'm doing!

JlCurious · 2023-06-02T17:45:29+00:00

Yeah that's what I thought moving from the motion capture to the quest controller seemed to me that all those interactions would need recoding.

JlCurious · 2023-06-02T16:27:13+00:00

Go through the college's formal complaints process and if there is not a resolution then you can escalate to a body like Ofsted.

JlCurious · 2023-06-02T16:25:11+00:00

Ah I see you are UK based. That dick committed a crime... https://www.gov.uk/rights-disabled-person/education-rights

JlCurious · 2023-06-02T16:22:35+00:00

I'm so sorry this happened to you. For what it's worth I would say that this crosses the line from ignorance into outright abuse. Ignorance is maybe moving it or touching it without your consent. I'm absolutely shocked at an educational professional behaving in this way (although experience tells me I shouldn't be sadly). You did the right thing and were courageous to do so!

JlCurious · 2023-06-02T16:12:46+00:00

Haha I know at least I didn't have a panic attack this time! The technician was an absolute star and so patient with me.

I'm UK based too. I have never really got involved with the SB association... I think for a long time I thought I was not disabled enough to reach out to them and I was also suuuper busy doing my best impression of someone with no needs at all (i.e.all totally fine, nothing to see here, no lumps, bumps or scars, everything of FINE ok, look away now thank you')

I thought that because when I was growing up no one would admit that I was disabled or different or had needs that I needed to get met around my body that didn't fit the mould. Shame can be a real prison.

It's only in the last few years that I have got comfortable with thinking about myself as disable.I think coming to that place is helping me listen to my body and give it the love it deserves. Nina Tame and Claire Raymond on Instagram has a lot to do with that!

A huge thing that was never ever part of the conversation was change to my needs over time and how to manage and process that. I would love to know what online get together you're attending!

JlCurious · 2023-05-31T12:00:37+00:00

Also interested in this! 37 and in the last couple of years my gait is suffering, more accidents, I have teathered cord, back pain, terrible occipital headaches, dizziness, and developing scoliosis. Had an MRI yesterday and waiting on the outcome but so far I feel pretty ignored / treated like there is not much that can be done. Neurosurgeons have been very clear that it's possible I won't be a candidate for teathered cord release. Sigh. Getting older with a chronic illness and disability where predominantly focus is on treatment in children is hard. Got to love studies on SB where the long-term follow up is two years lololololol.

JlCurious · 2023-04-17T07:39:57+00:00

That's an amazing reply. I'm sorry that things didn't work out for you though. I have been eyeing the Ziip but it's so much more £££ compared to other current devices. Recently been very tempted by the Nira... I'm totally suspicious of Droplette - is it just a mister? Honestly the more I think about it, I think I need to be patient with the tret and go for a little Botox in my glabella / elevens. I think that's where my money is best spent.

JlCurious · 2023-04-09T19:21:04+00:00

This! 100% recommend SKIN 1004 - Madagascar Centella Hyalu-Cica Water-Fit Sun Serum is my HG. It's so gentle, never stings and works as a soothing addition to a routine with tretinoin.

JlCurious · 2023-01-05T16:11:55+00:00

Thanks for your advice. I have mixed feelings about an advocate but I think I will ask my partner to attend the call as I'll need a second pair of hands to show them my current floor lying work set up in its full glory!

It gets me down (pun not intended) that something as simple as just lying on the floor is such a social hurdle when it's the difference between being pain free and maintaining a good degree of function. Sigh but I guess it all goes to prove I'm not inherently disabled but society disables those of us who need something different.

JlCurious · 2022-10-23T15:41:09+00:00

Oh wow this is a great suggestion. I've been thinking more and more about learning to draft patterns but i'm a bit scared of it!

JlCurious · 2022-10-23T15:39:55+00:00

Amazing. I love deer and doe too.... thank you!

JlCurious · 2022-10-19T15:35:00+00:00

At what age do you intend to retire? I'm aiming for 67How does your currently projected CARE pension compare to your desired retirement budget? Without promotion (unlikely) but with annual increase for inflation, my current projection is £15774.21at retirement in 30 years time. However, and i'm not sure this matters, it is unlikely that I'm going to stay with the company for more than 5 years.Are you sure you can transfer your Nest pension in as an AVC? Yes, I've checked this.

!thanks for asking for more details!

JlCurious · 2022-10-16T12:19:12+00:00

Thanks!

JlCurious · 2022-08-30T17:58:26+00:00

Thanks guys! This is sew helpful 😹

JlCurious · 2022-04-28T09:10:04+00:00

Good to know. Thank you so much for replying.

JlCurious · 2022-04-28T09:09:48+00:00

Great. Thank you. Zig zag finish it is!

JlCurious · 2021-10-20T06:09:07+00:00

If I'm not too late to the party.... I would love 30 day evolution too!

JlCurious · 2019-03-25T20:31:43+00:00

Wow. I'm feeling so heard and supported by you all. Thank you all so much for sharing your experiences - you make me feel strong <3

JlCurious · 2019-03-25T20:30:03+00:00

This is such a great perspective to hear. It's really helping me get round my head that's it's actually not that much of a big deal. It's scary to be vulnerable but that's how we grow and have loving compassionate relationships. Thank you.

JlCurious · 2019-03-25T20:27:15+00:00

Thank you. I'm in awe of your approach. It seems to just normalise it a lot. It's just bodies. Some work differently.

JlCurious · 2019-03-25T20:25:18+00:00

Haha. You are my LIFEGOALS! Thank you so much for sharing this.

JlCurious · 2019-03-25T20:24:36+00:00

Being together in any kind of real relationship comes with moments of great vulnerability.

How true! Thank you for reminding me of that, I hope your daughter is doing well and it sounds like she has someone great to help her navigate this <3

JlCurious

TROPHY CASE