Diastomatomyelia, Tethered cord & Arachnoiditis — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.

Diastomatomyelia, Tethered cord & Arachnoiditis

almatz Member Posts: 1 Listener
Hi everyone 

I hope everyone is doing ok! I just found this forum on an exhaustive search for help from others like me!

I was diagnosed split spinal cord at the age of 8, operated on at 11. I managed well up until about 5 years ago after a spinal tap from a c section.

My nuerosurgeon has advised against any further surgeries as the risk for paralysis is too high. I was even told by one nuero to “put up and shut up” as there was nothing more they could do.

Right now, I try to get on with life and not let it stand in the way of things, but the pain and constant pulling is just at the forefront of everything. Sitting, standing, lying down isn’t comfortable. It’s just pulling . Like someone is stretching an elastic band so far that it would snap at any second! I get such burning pain in the fluid build up over my frayed nerves and it’s just miserable.

At the moment I’m trying to manage with dihydrocodiene, but I have a call tomorrow with my GP to try and figure out what I can take when I hVe an extremely bad pain flare.

I have tried NSAIDs, duloxetine, amitriptyline, oxycodone, tramadol (Allergic to it for some reason?!), gabapentin, buprenorphine patches, carbamol.Physio, counselling, deep tissue, yoga, hot water bottles, ice packs.

I just want to be able to manage the pain but not create a whole host of other problems with stronger medicines. Does anyone have any tips or advice that helps them if they suffer with the same issues?

whenever I call my GP it is always so rushed and I barely have time to explain everything I want to, so I’m trying to right it all down so I don’t forget :( 


  • janer1967
    janer1967 Member Posts: 16,311 Disability Gamechanger
    Hi and welcome 

    I cant advise much as I'm not in this situation 

    All I can suggest us try book a double appt with your gp so you get longer and yes write down b4 what you want to discuss 

    Is there anyway you could email them prior to appt what you want to discuss so they have time to prepare 

    Good luck for your appt 
  • Audinut70
    Audinut70 Member Posts: 122 Pioneering
    I would suggest the email option also, i have the same problems with appointments about my conditions, mostly side effects of my meds. But they've got the majority of your information, its just a case of them going through it with you, and them giving you their diagnosis. Takes a lot of worry/stress away from yourself as you know that they know what you need them to know. Sorry about the tongue twister.?


Complete our feedback form and tell us how we can make the community better.