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Post by Leofwen on Dec 7, 2013 16:18:47 GMT -6
Hi Tom
I think you are being too hard on yourself as the reality is that you were caught between a rock and a hard place. Hindsight is a wonderful thing! If we made all of our decisions with the benefit of hindsight life would be great, but we don't have that luxury. From what I see, you made the best decision, with the best information at the time. Your intentions were pure and I would think that we would all make the same decision. The thing with these tumours is that we are all different and they behave in extraordinary ways, this is something you will see from posts on this site.
The thing is to try and move forward, and that is clearly difficult, but as Leah and others have said, 10 months is still early days in recovery for these conditions and nerves can take time to repair. Give it time and ease up on yourself. You seem to be doing the best you can and thats all anyone can ask.
Keep posting and hope things get better for you and your wife.
Sue x
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Post by gordy1 on Dec 9, 2013 0:32:44 GMT -6
Gordy 1... Thank you for sharing your story. I wish you and your son the best life can offer you. I'll check out the websites you recommended. Out of interest, if you feel OK answering this question... You said you put your full faith in medical personnel but you shouldn't have... and that the NS said he'd fix the problem. "Did you feel mislead? Were the surgery risks not explained? Were you given false hope? Was your sons outcome a total surprise to you?" I really interested in the competence of NS addressing this issue- whether or not they try to correct a problem that they have little experience- or know how- in what to do. Perhaps these NS should have referred the Spinal Cord Tumor patients to someone else by saying "this is beyond me, here's who you should see." I'm interested in your response to these questions. Again- all life's best to you, your family and your son. He's ten years old now and what a special age. I'm sure he loves his parents so very, very much. Hi Tom, Yes, I do think that we were misled (not only by the NS, also by the many "specialists" that my son was taken to in the two and a half years leading up to a correct diagnosis). The surgery risks were outlined by the NS's 2ic, not by the NS himself. And the probability of a bad outcome was never discussed (in fact, according to the NS, my son should have had a few days of weak muscles in his legs, nothing more). I do think that the 2ic was a lot more aware of the risks than she was letting on, but that it was difficult for her to say too much when the NS had significantly more years of experience. I did sign a form agreeing to my son's surgery, which said something along the lines of "have you been informed of the potential risks associated with this surgery", but I do not recall the risks being written down on that form...which is something I believe should be done. Otherwise there is no proof one way or the other of what was said by the NS (or 2ic). Do I get the feeling that NS's like the challenge of a difficult operation rather than being honest with a patient about their lack of experience? Yes. Do I think that the NS was negligent in his surgery? No, I don't believe so. I should also add that we live in the remotest state capital city in the world (Perth, Western Australia), where there is (and was) only one paediatric NS, so had we decided to get a second opinion (and/or go somewhere else for surgery), it would have cost us a lot of money (which we would have paid, had we understood the outcome...). But, as I said before, when a medical professional says that they are going to fix something, you believe them.... As you can imagine, any doctor that our son is taken to nowadays gets 1001 questions asked by us, and we rarely accept an outcome before researching fully ourselves (which we've usually done beforehand...and it is worrying when the doctor doesn't even know the subject as well as we do after a bit of research!!). Whilst my recommendation to you is to move on, accept what has happened and get your wife increasing her ability as much as possible, I know from experience that it is easier said than done! But good luck for the future.
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Post by samuridude on Dec 9, 2013 12:47:25 GMT -6
In the world health care rankings America (#32) is ranged lower then Australia and Canada. I’m not sure what the ranking are for specialized health care like neurosurgery, but the good old U.S.A isn’t what it used to be. Now if your looking for weapons of mass destruction, look no further the America the beautiful.
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Post by gordy1 on Dec 9, 2013 20:42:02 GMT -6
In the world health care rankings America (#32) is ranged lower then Australia and Canada. I’m not sure what the ranking are for specialized health care like neurosurgery, but the good old U.S.A isn’t what it used to be. Now if your looking for weapons of mass destruction, look no further the America the beautiful. When you speak with your local paediatric radiotherapist/oncologist (and, by local, I mean the only one within 2,500km of where you live), and she has a different opinion to a team of specialists at Johns Hopkins in Baltimore, yet refuses to pick up the phone and discuss the situation with anybody at Johns Hopkins (who were more than willing to talk), then you know you have a problem with local "specialists"!
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Post by samuridude on Dec 10, 2013 11:46:05 GMT -6
The 2012 Program for International Student Assessment shows that U.S. teens ranked 26th in math, 21st in science and 17th in reading. Most U.S. students are 3 years behind in education, another 10 more years and Doctors and veterinarians will be one of the same again.
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Tom
Junior Member
Posts: 11
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Post by Tom on Dec 12, 2013 13:14:24 GMT -6
Gordy 1: I will quote a sentence you wrote in your post. "Do I get the feeling that NS's like the challenge of a difficult operation rather than being honest with a patient about their lack of experience? Yes." This is sad commentary about the ego of some NS's and perhaps other medical experts. If your answer is true it confirms what I've been thinking all along... that our NS proceeded based on ego and not in the best interest of my wife. I could be wrong but I again quote a sentence you wrote- "the probability of a bad outcome was never discussed (in fact, according to the NS, my son should have had a few days of weak muscles in his legs, nothing more)." We were told 3 days to 3 months to get back to normal. It makes my stomach knot when I think my wife would be better had we not trusted the NS. I need to forget, look at the positives and move on. Yet...is it truly possible that a NS ego is larger than helping a patient- particularly when a bad outcome is life long disability? I don't recall signing release forms but when I looked at my wife's medical records- there they were- the risks clearly outlined- all the horrible things that could happen- signed by my wife. Had I read all of these awful things- I would have stopped the surgery until I received more clarication/information. My wife says she has no recollection of signing these- makes me think (and I know this sounds perhaps too much like a conspiracy) that she signed them on her way into the surgery ward- after she'd left my side because I accompanied her on each and every visit with all medical personnel prior to surgery. I apologize to anyone reading this post if I sound disillusioned and angry- mostly I don't think about it- I hug my wife above the lack of sensation line- I see her sitting in her recliner and try not to think about what's happened. What is the truth about my NS? Perhaps Gordy1... And I hope not... but perhaps we were duped.
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Post by gordy1 on Dec 12, 2013 18:52:03 GMT -6
Gordy 1: I will quote a sentence you wrote in your post. "Do I get the feeling that NS's like the challenge of a difficult operation rather than being honest with a patient about their lack of experience? Yes." This is sad commentary about the ego of some NS's and perhaps other medical experts. If your answer is true it confirms what I've been thinking all along... that our NS proceeded based on ego and not in the best interest of my wife. I could be wrong but I again quote a sentence you wrote- "the probability of a bad outcome was never discussed (in fact, according to the NS, my son should have had a few days of weak muscles in his legs, nothing more)." We were told 3 days to 3 months to get back to normal. It makes my stomach knot when I think my wife would be better had we not trusted the NS. I need to forget, look at the positives and move on. Yet...is it truly possible that a NS ego is larger than helping a patient- particularly when a bad outcome is life long disability? I don't recall signing release forms but when I looked at my wife's medical records- there they were- the risks clearly outlined- all the horrible things that could happen- signed by my wife. Had I read all of these awful things- I would have stopped the surgery until I received more clarication/information. My wife says she has no recollection of signing these- makes me think (and I know this sounds perhaps too much like a conspiracy) that she signed them on her way into the surgery ward- after she'd left my side because I accompanied her on each and every visit with all medical personnel prior to surgery. I apologize to anyone reading this post if I sound disillusioned and angry- mostly I don't think about it- I hug my wife above the lack of sensation line- I see her sitting in her recliner and try not to think about what's happened. What is the truth about my NS? Perhaps Gordy1... And I hope not... but perhaps we were duped. Tom, if you can't vent here, then where can you vent??? The trouble is, as I see it, when people are faced with a SCT, it is often the first time they have dealt with doctors, and surgeons in particular. People instinctively put their trust into medical people, and only learn later, through bitter experience in our cases, that perhaps more questions should have been asked (but then would you have had the confidence to challenge the surgeon at that time?). Unfortunately it's a vicious circle after the event, but perhaps it should be high up on the list of priorities on this forum for people who have just found out they have an SCT.... Like you, mostly I don't think about it either, it's just that the thoughts are in there somewhere! Changing the subject a bit, what's you're wife doing in a recliner? Best thing my son does is exercise (whenever I can get him off minecraft, that is!). Keeps him healthy, independent, and ensures that he maximises his ability to do everything possible. And my "hobby" these days is fiddling around with equipment to keep him active / having fun (for example I've just converted a noisy petrol engine go-kart into an electric go-kart with hand controls). Just wanted to point out that I'm not sitting around feeling sorry for our situation, and neither is our son!
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Post by samuridude on Dec 13, 2013 10:08:53 GMT -6
"the probability of a bad outcome was never discussed (in fact, according to the NS, my son should have had a few days of weak muscles in his legs, nothing more)." The probability of a bad outcome is all my NS would discus, 50/50 chance of paraplegia, incontinence, bowl, etc. Looking back I would of appreciated a little sugar coating.
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Tom
Junior Member
Posts: 11
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Post by Tom on Feb 16, 2014 18:30:22 GMT -6
I've been away from this forum for awhile... the reason is that when I read the posts here I feel great emotional pain and turmoil. Today is Sunday and it's 5pm. My wife is just now getting going after sitting in her recliner watching TV all day. She's NOT lazy. She just hurts from chronic muscle spasms and is dreary from her drug regimen. Gordy- I do try to get her to walk outside around the city block with me and occasionally she does. She also has a home exercise regimen- developed by a Physical Therapist- she is faithful in doing these. I think both of us are in a state of denial. I try not to think of our situation at work but when I return home I have to deal with it. I am trying to accept that life as we knew it is over. We loved to hike outdoors, bicycle and ski. We enjoyed breakfast at a restaurant but now she has difficulty sitting in a booth. We used to drive the eight hours to visit my parents but she can't sit in the car that long. So we watch TV together. That's it. We also go to church together every Sunday which is our only outing. I don't think anyone really understands how limited our lives have become. I know we have it better than many, many others but still I grieve for us. My best technique to manage this situation is to simply not think about it- which is why I have such difficulty reading the posts here. As for me I have stopped hiking, exercising at a health club, doing the things I used to enjoy... I'd rather be home with my wife than be out doing things that she can't enjoy. We are one year and one month post surgery. I was hoping for improvement but I don't see it. I just wish it were all different and that I'd gone elsewhere...
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Post by gordy1 on Feb 17, 2014 22:28:37 GMT -6
Hi Tom, Sorry to hear about the way things are going for you (both) at the moment. And I'm sorry if my previous post implied laziness, that was not the intent at all, I just wanted to assure you that things do get better. I mentioned the CareCure forum in an earlier email. The problems they were having with their hosting platform seem to be sorted now - have a look in some of the forums (and/or post an introduction yourself). There is a huge amount of information there, and people should be able to provide advice regarding muscle spasms, drugs, exercises, etc. (My son only has minor leg spasms, so I can't provide any advice myself). sci.rutgers.edu/forum/forum.phpHope that helps a bit.
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