Tethered Cord - A Personal Story
| Name of Visitor | Location of visitor | Comments |
| Jenny Bunton |
Bristol, UK |
Your site looks really good - clearly laid out and a good combination of personal details and advisory sections. Of course people must go to their medical professionals but this is a good starting point for a layman's view of the problem. |
| Mr Ian Pople (neurosurgeon) |
Bristol, UK |
December 2002: Well done! I am very impressed with all the work that you have put into this site. I am also glad all your hard work has paid off. It looks as though it will become a very useful resource for patients with TCS. May 2003: Keep up the good work on the website - it was obviously sorely needed |
| Mr May (neurosurgeon) |
Liverpool, UK |
March 2003: Thanks for the good work! August 2003: Keep up the good work on the tethered cord resources site |
| Mr D Thompson (neurosurgeon) |
London, UK |
Very well done on your excellent webpage |
| Mr R Ashpole (neurosurgeon) |
Nottingham, UK |
May I take this opportunity to compliment you on an excellent and informative site. |
| Jonathan
Dore Freelance editor |
Vancouver, Canada |
It's an act of great bravery to take something so personal and so painful and make it public, and an act of great generosity to use your own pain to give something positive to other people. By writing about pain with such matter-of-factness and detachment, you'll give other people in your situation courage to face it with the same attitude. Good on you! |
| Mary |
Brussells |
I'm grateful to have made these useful contacts, mainly thanks to you. Your website really is an invaluable resource, bravo and thank-you. |
| Carey Kenchington | Suffolk, UK | The first thing I looked up was tethered cord - your webpage is wonderful! I share so many issues with you. It was the first time that I didn't feel alone in dealing with the confusing daily changing symptoms. So a BIG BIG BIG thank you goes to you. |
| Brian Jenkins | Bristol, UK | This website is amazing - a great achievement. I think it is the basis for a book. Hope to see it published in the next year or so! |
| Anna G | London, UK | I found your site while desperately looking for UK sites to help my son. I thought it was so helpful and am going to pass it on to all our families. Nobody really knows what he has, but once they have read your site they will, I'm sure |
| Steve Smith | Edinburgh, UK | Just a wee note to thank you and well done for taking the time and effort to put your site together ... I've found it very useful and can't wait to show it to my wife. |
| Dr Angela Caney | Frenchay Hospital, Bristol UK | I had a look at your website and found it very interesting and informative. You have obviously spent a considerable amount of time setting it up. Please see the Pain Management site at Frenchay. |
| Jim Bishop | Plymouth, UK |
I must thank you for publishing your website which I found recently. It has eased my nerves and know that I will be in the best hands possible with Mr Ian Pople |
| Monika Sabor |
South Wales, UK |
I am facing the same surgery as you had in a couple of weeks time. Your account helped a lot in terms of what to expect. Thanks for posting your story. |
| Catherine McCree |
Milton Keynes, UK |
Sorry to hear about your back surgery, but you have created something very positive about it. |
| Sarah Lake |
Grantham, UK |
Thank you so much for sharing your experiences, and thank you for shedding a bit more light on this condition |
| Sarah Woods |
Lincoln, UK |
Your site describes M to a T and it's a great reference point for me. I have no-one to talk to and can't find anything for tethered cord in children or other support groups |
| Letitia Patrick | Kent, UK | I wish I had been able to read your website before my operation |
| Yvonne Rauchtenberg | Ely, UK | I found your article very informative and thank you for writing it |
| David Carpenter | Nottingham, UK | Congratulations on your UK site for tethered cord information |
| Elizabeth Bullen |
Lincoln, UK |
It is so nice to speak to someone with this condition, and not feel you
are the only one |
| Emma Hunter |
Northern Ireland, UK |
Thank you for placing your personal story on the internet.
I feel you described the emotional implications very well and it was great
to know I am not the only one. As you say, there is little support for people
with SBO so at this time of darkness and uncertainty your webpage was a
godsend. Thank you. I also printed off your personal story for my parents to read; they found it a great help to understand what I am going through |
| Andrew Peel |
Manchester, UK |
Congratulations on your excellent website. This really must be publicised and broadcast wider |
| Sharon McAllister | Glasgow, UK | I am so glad to speak to someone who has been through it. |
| John Payne | Somerset, UK | Many thanks for the website. It was good to know that I was not alone with this unusual condition. |
| Alexandra Woods | USA | Thank you so much for posting your personal story online. I have experienced almost all the symptoms you listed ... and we seem to have had similar experiences with SB or tethered cord. But for the first time in my left I don't feel so alone and so misunderstood. |
| Christine Teasdale | Tennessee | I think you have done a most excellent job on your website. Very informative and it does allow people to know that TCS sufferers are not alone. I think that your site surpasses all of the search engines sites that I have tried to get any information from. |
| Marianne Bennett | Baton Rouge, Louisiana, USA | I thoroughly enjoyed your website. |
| Samantha Morse | USA | I found your website by chance and am thankful I did. Reading your site today really helped me. |
| Karyn | USA | I read your website before surgery and was very impressed. |
| Alexia Gosp | USA | Great website! You really did a wonderful job providing all this valuable information for others |
| Sue | Canberra, Australia | After hours of searching for information on Adult Tethered Cord Syndrome I came across your website. I have just found out that I have a tethered cord and may need surgery, and I wanted to find out more. There is a lot of information around about children but little about adults with TCS. Your pages are a much needed resource and very informative. I was encouraged by the positive comments made by neurosurgeons. Keep up the good work. |
| Laura Vadney |
Tennessee, USA |
It looks great!! Good work. Please list the two email support groups here: www.lfsn.org and www.tetheredcord.com |
| Amanda J | Colorado, USA | I wanted to thank you for your terrific website. It is incredibly informative. I hope that you continue to update your site. It gave me a starting point for my research. Additionally, the personal story makes your site invaluable. |
| Kaci King |
USA |
Thanks so much for sharing, especially through your emails and your website. It so helps in our journeys to know we are not alone. So many of the tethered cord sites give very little information. You've been so thorough in yours with each subject and type of it. It's been very helpful. |
| Hazel | USA | I was so glad to hear from you and your courageous story. It takes a very special person to help others the way you do and I know you are helping hundreds. |
| Shelley Hays | UK | This link is wonderfully informative and explains the different
types of tethering. Thank you for sharing your experience and insight with all of us. |
| Bernadette Kutufaris | USA | I was inspired by your homepage. |
| Amy Scheele |
USA |
Thank you so much for sharing your experiences, and putting forth such research and effort to make the site. You did a wonderful job. You should feel a great sense of accomplishment and know that you are helping others by your efforts. |
| from LuLimom429 |
USA |
Good website. Wow!! You aren't kidding!! This is a great site. I learned the most from that site, than any other. Thank you so much for sharing! |
| Wendy B |
USA |
Thank you so much, this was fascinating. It is the best information I have been able to read. I can't tell you how much I appreciate it! |
| Janell D |
USA |
Thanks so much for all the information. My husband is really worried about the surgery so I am trying to find as much about it as I can. |
| Christine Holcomb |
USA |
I also wanted to let you know I have been visiting your site. I am still checking the internet to see if I can find one as good as this one has been for the tethered cord and SB information |
| Susan Fenley |
USA |
I actually read your website before by typing tethered cord. I was in awe of your story and your kindness to share it on a website |
| Carolyn Hartley |
Alabama, USA |
You seem to have been through enormous challenges and pain. Other cannot realize the extent of the type of pain we've had. Thank you for sharing your story. I just wanted to let you know how I appreciated your story and the information you had. |
| Nancy Stewart |
USA |
Your website is wonderful. I am still wandering round on it and reading as I go, but wanted to tell you that I have learned more in 1 hour than I have in months. I just had to tell you how pleased I am to find something I understand!! |
| Nancy Van Luven |
Ontario, Canada |
Your website was one of the first ones I visited when I started
my quest for knowledge. October 2003: I just visited your website again last week, it is so good. July 2004: please see Nancy's contribution to the tethered cord page |
| Grace | Canada | At Nina's website you will read much about the realities of TCS. You should keep in mind there are many causes and degrees of tethered cord and you need to educate yourself before making your own |
| Kim Shaffer | USA | I read your article and it was very informative |
| Neeti Kabra | India | Thank you so much for the support. It means a lot to me |
| Debbie Griffiths |
USA |
You have given me more information in one website than I have ever received from any doctor. Thanks for the great advice and for your strength and belief. You gave me courage to say what I felt, and thanks for the website for confirming things that I felt and experienced. |
| Sarah Smith | USA | Happy to find your site |
| Sarah Graham |
Oregon, USA |
When I read your story it really helped me understand and realise what is going to happen after the surgery. I really could relate to your story |
| Terri Lynch |
Connecticut, USA |
Thanks so much for all the great information, you are surely a wealth of knowledge and it's so nice that you can help others. I found all the information reassuring |
| Dee |
USA |
Just got done reading your site and all I can say is THANK YOU!! Reading your story has helped me already |
| Douglas Sorocco |
Oklahoma, USA |
Thank you for your personal account of your TCS surgery. It has helped me tremendously to get into the mind frame for a possible surgery |
| Jignesh Shah |
Gujarat, India |
Thanks for your valuable and precious reply. It was certainly very informative and encouraging. |
| Mary Dolnick |
Arizona, USA |
Your web site is great, very informative and at this time that is what I need, lots of information. |