Tethered Cord Syndrome; Thickened Filum Terminale; Detethering Surgery

Site Map

A Personal Story
Feedback Page
UK neurosurgeons with special interest in Tethered Cord Syndrome
Association for Spina Bifida and Hydrocephalus
Online Resources, Journals and links to other webpages

Tethered Cord Syndrome
Neural Tube Defects
Spina Bifida Occulta and Spinal Dysraphism
Neuropathic Pain and Chronic Pain
Erythromelalgia
Spondylolisthesis
Complex Regional Pain Syndrome

Acupuncture

Pain Management Programmes
Medical Procedures and information
Medical Dictionary

Disclaimer at end of page

All these terms were just words to me in 2000. I didn't understand fully what was wrong with my deformed feet, and I had no idea about, or understanding of, tethered spinal cords. Of necessity, I have become very familiar with many aspects of tethered cord syndrome and Erythromelalgia since then.

The condition of my tethered spinal cord began to deteriorate in early 2000. After recovering from the shock of diagnosis and facing huge fears of disability, I tried to find information on the internet to learn more about the problem but very few UK sites with relevant information existed. Any details I could find were from US sites (universities and medical centers) which were wholly aimed at the fully informed medical professionals and were very technical indeed. The medical establishment in the US also varies from that of the UK and therefore some of the information had to be read very carefully.

This website originated in my search for information and is based on my own experiences of this condition and successful detethering surgery. It also consolidates information and resources I found in my internet search. I hope it will become a useful resource for people with tethered spinal cords subsequent to spina bifida occulta. I welcome feedback, advice, and personal stories that you feel happy about publishing.

I make no apologies for it being a "wordy" site with no fancy gizmos, but it is always under review.

Thanks must go to

Mr Ian Pople, MD FRCS, Consultant Neurosurgeon at Frenchay Hospital, Bristol, UK, who carried out my surgery and who advised me on the details for this site.
I must pay tribute to Mr Pople's inestimable medical skills which ensured I experienced no immediate post-op complications. I also have to say that he is the kindest person I have ever met in the medical world. The qualities of compassion and understanding are invaluable.

Jason Davies, Acupuncturist, who has used his outstanding knowledge of Traditional Chinese Medicine, as well as his training in Western medicine to help alleviate the pain and discomfort of living with the worst aspects of Tethered Cord Syndrome, Erythromelalgia, and Complex Regional Pain Syndrome.

and above all to my sister Jenny and my Mum Audrey, who have always been so supportive, encouraging and caring. I cannot express so many thanks.

If you have any comments or suggestions on the content of this site, or advice for other readers, please email me on nina.bunton@bristol.ac.uk

Disclaimer
These pages are for the use by children, their parents, and adults who have been diagnosed with Tethered Cord Syndrome.

All medical references MUST be used for information only.
A medical specialist MUST be consulted in all cases.

Last updated February 2006