Guest guest Posted April 22, 2001 Report Share Posted April 22, 2001 I too would like to thank all of you for welcoming me in the group. It really helps to know people out there dealing with the issues of this condition, tethered cord. I appreciate all of your responses to my first post ( a couple of weeks ago) is having another period of loss of bladder control. The best news is that two days ago our insurance company revised their decision and are allowing us to go ahead with the procedure(tethered cord release). We will now go back to the nuerosurgeon to discuss options. I had a question and was reading some of the posts about headaches. often gets headaches in the back of her head especially when riding in the car. Is this common with any of you? Kristy ('s Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2002 Report Share Posted February 7, 2002 I think we all have had this Choice to make and will continue to make those types of Choices throughout the rest of our Lives. I am happy to hear that 's Dr. is listening to her wants and needs. In my Opinion, that is the best way to go about it. I do understand though that Parents have a feeling that they need to protect their Children. Adults are scared of Surgery too. Just my Opinion(s). Me mymocha@... had her follow up visit at the NS yesterday. He had said that he is willing to de-tether her but wants to decide when she wants it done. His opinion is that only she knows how much pain she is getting and how much she feels she can cope with. Has anyone else had this sort of choice to make? Although is a sensible child she is still scared at the thought of surgery. I'm really worried that she is going to say the pain isn't so bad just to avoid surgery. I think it would be best for her to have it done but I don't want her to feel that I'm pushing her. I really don't know what to do. Does anyone have any suggestions? ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.313 / Virus Database: 174 - Release Date: 1/3/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2002 Report Share Posted February 7, 2002 Leigh...I would weight the facts, you know pros and cons, then make the decision together. Janice.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2002 Report Share Posted February 7, 2002 I just wanted to say thank to all those who have shared their thoughts on 's situation. It's good to hear other peoples opinions and we will be bearing them all in mind when deciding what to do. said that it so nice that other people have taken the time to give her advice. Thank you all. Leigh Mum to 10yrs (lmc-tcs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2002 Report Share Posted February 7, 2002 Hi Leigh I've always been given the choice. This surgery, as far as I can tell is never life or death such as heart surgery. Yes, we can and sometimes do lose function if we don't have it, but I don't think anyone has ever been told they have to have it to save their life. My first surgery and third was to save function and hopefully to help the pain. My second and the one up-coming is for pain and for some function loss. I've always been given the choice though. However, in saying that...when the pain is bad enough, you know there's "no choice." When it interferes with so much of your life as it does with mine and others, you know it's time. You also get to a point (and maybe your daughter isn't there yet), that you just can't tolerate the pain levels anymore and you'll do pretty much anything to lower them. (This is where I am...I've come off some of my narcotics in preparation for my surgery and my pain is through the roof almost non-stop.) My suggestion is to talk with your daughter about what she's missing out on because of the pain (you didn't say what it's keeping her from.) Ask her to maybe to list what she did before the pain started and which of those she no longer does, or doesn't enjoy anymore. This may help her and you come to a decision. Quality of life is so important and if pain is stopping that...it may be time to think about surgery. Kathy Update on had her follow up visit at the NS yesterday. He had said that he is willing to de-tether her but wants to decide when she wants it done. His opinion is that only she knows how much pain she is getting and how much she feels she can cope with. Has anyone else had this sort of choice to make? Although is a sensible child she is still scared at the thought of surgery. I'm really worried that she is going to say the pain isn't so bad just to avoid surgery. I think it would be best for her to have it done but I don't want her to feel that I'm pushing her. I really don't know what to do. Does anyone have any suggestions? Leigh Mum to 10yrs(tcs) Quote Link to comment Share on other sites More sharing options...
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