Cauda Equina Information

[Mymysonlyone]

Hi I am writing to enquire if anyone can provide advice to my daughter who was recently diagnosed with Cauda Equina and is suffering excruciating pain in her tailbone. She has tried a variety of neuropathic painkillers but nothing has touched the pain so far. She also suffers from fecal impaction- partially due to the fact that she has no sensation in in her bladder or bowel- but she also has contamination OCD which impacts on her ability to take laxatives. We both wondered if the tailbone pain might be due to severe constipation or is it a known feature of CES? We would appreciate any replies from sufferers with personal experience as the doctors and specialists are attributing it to bowel issues!

[ChrisColumbus]

Most of the posts about this condition are in the Pain Concern Forum rather than here in Restless Legs. It might be worth joining that forum and asking there (link below):

healthunlocked.com/search/c...

[Mymysonlyone in reply to ChrisColumbus]

Thanks- just new to posting here!

[ChrisColumbus in reply to Mymysonlyone]

Good luck!

[Mymysonlyone in reply to ChrisColumbus]

Thanks a lot!

[Rachmaninov2]

Sorry to hear about your daughter Mymysonlyone. I’m not sure this is relevant, but my neurologist made me aware of the possibility of developing Cauda Equina when I was diagnosed with spinal stenosis. I also experience pain in the lower spine area but not sure it’s the same as your daughter experiences. I hope you are able to find the answers you need. I have just found the website Cauda Equina UK, I don’t know if you have contacted them for more information.

[Mymysonlyone in reply to Rachmaninov2]

Yes I have thanks. They are now part of SIA - Spinal injuries Assoc!

[Rachmaninov2 in reply to Mymysonlyone]

I hope you and your daughter are able to find the support you need. Best wishes to you both.

[Mymysonlyone in reply to Rachmaninov2]

Thanks a lot!