TechWife Posted February 14, 2023 Share Posted February 14, 2023 (edited) I’ve had an ongoing medical issues for six years. For about the past two years I’ve been asking if “x” could be the cause of problem #2 and had been assured by five different specialists and two GP’s that it is not. Guess what? Specialist #6 read a CT scan and said, out of the blue, said “I see this” about an area that wasn’t the target of a scan but was visible on the scan. I take that scan back to specialist #2 who says “yes, that might be the source for problem #2, it’s specialist # 1’s area, go back”. I go back to #1, who says it might be “x”, but beyond their expertise, go to #7, who is new to my little party. #7 says yes, it’s “x” but he can’t help, past his capabilities, go to #8. I went to #8, also new to the party, who said beautiful words to me today. He said - “x is the problem and I can fix it. Here are the complications from it going unaddressed for so long. I will do procedure “A” which will fix the problem and your body should heal itself. If this one complication doesn’t heal itself, I can fix that by doing “B” six weeks after “A.” I expect this will also clear up problems 3 & 4 because they are often caused by “x.” The time elapsed from first GP contact with the problem to being told by specialist #8 that there’s an end in sight - six years. For the past two I have asked about “x.” The one specialist that I didn’t have an opportunity to ask was #6, the one that said “I see this.” Time from revisiting #1 specialist this second time to being told there’s an end in sight by #8 - 3 weeks. If GP or #1 had been more informed up to six years ago & if they hadnt dismissed my question about “x” two years ago, I could have been done & maybe without complications. I have a procedure scheduled for March 3 - 19 more days and problems 2, 3 & 4 should be taken care of unless “B” is needed. Problem #1 is likely chronic at this point, but it’s cause is unknown, just dozens of scary & not as scary things ruled out, which is good. I am exhausted, but hopeful. Edited February 14, 2023 by TechWife 40 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted February 14, 2023 Share Posted February 14, 2023 @TechWifeI am so impressed with your diligence and persistence. I've had similar experiences and I hate it. You are absolutely right. They should listen to the patient. So often, they don't, and the patient just has to keep dealing with stuff. I'm glad to know you can get this addressed, and I pray all goes well. Keep us posted. 8 Quote Link to comment Share on other sites More sharing options...
footballmom Posted February 14, 2023 Share Posted February 14, 2023 I feel what you shared so deeply. I don’t want to derail your post with my own experience. I’m rejoicing with you that you finally have hope and a plan and the right person quarterbacking this. 4 Quote Link to comment Share on other sites More sharing options...
footballmom Posted February 14, 2023 Share Posted February 14, 2023 I would also feel that I could help Doctor 1’s current and future patients by notifying #1 that they dismissed you when really, it was x all along. 4 Quote Link to comment Share on other sites More sharing options...
TechWife Posted February 14, 2023 Author Share Posted February 14, 2023 9 hours ago, Harriet Vane said: @TechWifeI am so impressed with your diligence and persistence. I've had similar experiences and I hate it. You are absolutely right. They should listen to the patient. So often, they don't, and the patient just has to keep dealing with stuff. I'm glad to know you can get this addressed, and I pray all goes well. Keep us posted. It hasn’t been easy by any stretch - navigating the medical system while dealing with complex health issues feels like a punishment for having the health issues. I’m someone who knows how the system works and it was hard. Thanks for the encouragement! 7 Quote Link to comment Share on other sites More sharing options...
TechWife Posted February 14, 2023 Author Share Posted February 14, 2023 8 hours ago, footballmom said: I would also feel that I could help Doctor 1’s current and future patients by notifying #1 that they dismissed you when really, it was x all along. I’m planning to do this once I’m in my recovery period. I have a previously scheduled primary care appointment today and I plan to talk to her as well. I’m not going to bother with my previous primary care provider, though. 1 Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted February 14, 2023 Share Posted February 14, 2023 11 hours ago, footballmom said: I feel what you shared so deeply. I don’t want to derail your post with my own experience. I’m rejoicing with you that you finally have hope and a plan and the right person quarterbacking this. This. ^ I am so glad you have answers. 1 Quote Link to comment Share on other sites More sharing options...
alysee Posted February 14, 2023 Share Posted February 14, 2023 Good for you!! I'm not sure if American healthcare facilities have a quality of care person who you can go to if you feel like youre being brushed off but here in Canada whenever I have felt unheard about a complaint I always put in a request to speak with the quality of care person and they always make it right, really quickly. I had hyperthyroidism(all the symptoms) and the er doctor told me it was anxiety and refused to give me a blood test. I called the quality care person at the hospital and told her my complaint and they got me into the lab to get my blood drawn the next day and of course, I ended up with hyperthyroidism. 1 Quote Link to comment Share on other sites More sharing options...
klmama Posted February 14, 2023 Share Posted February 14, 2023 I'm happy for you that you finally got the diagnosis and help you need! 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted February 14, 2023 Share Posted February 14, 2023 I am so happy for you. Having answers and a plan is more than half the battle! What a relief. Wishing you easy procedures and speedy, uncomplicated healing. Quote Link to comment Share on other sites More sharing options...
stephanier.1765 Posted February 14, 2023 Share Posted February 14, 2023 Ugh, and on top of it all they make you feel stupid for even suggesting "x" in the first place. Good for you for staying the course! I hope A is all you need to start healing. 2 Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted February 14, 2023 Share Posted February 14, 2023 I hope that this puts you solidly onto the road to recovery! Quote Link to comment Share on other sites More sharing options...
kbutton Posted February 14, 2023 Share Posted February 14, 2023 I am glad you have answers!!! It shouldn't be this way, but it is. Sigh. 17 hours ago, footballmom said: I would also feel that I could help Doctor 1’s current and future patients by notifying #1 that they dismissed you when really, it was x all along. I am glad you're planning to speak up about it. I hope they listen. I think one of the reasons that medicine gets pigeonholed and defensive is that there is not enough follow-up for the purposes of learning. Doctors often don't know if their patients are dissatisfied and why. If the outcome is that the doctor takes a learning posture, I would leave a positive but honest review--something along the lines of, "Missed my issue the first time, but when I came back later with a diagnosis, used it as a learning opportunity." 5 hours ago, alysee said: Good for you!! I'm not sure if American healthcare facilities have a quality of care person who you can go to if you feel like youre being brushed off but here in Canada whenever I have felt unheard about a complaint I always put in a request to speak with the quality of care person and they always make it right, really quickly. I had hyperthyroidism(all the symptoms) and the er doctor told me it was anxiety and refused to give me a blood test. I called the quality care person at the hospital and told her my complaint and they got me into the lab to get my blood drawn the next day and of course, I ended up with hyperthyroidism. I have not heard of patient advocates being able to do that here, but it's still worth reaching out. Sometimes it facilitates institutional change; sometimes they double down and CYA but still change. It's all over the map. Quote Link to comment Share on other sites More sharing options...
TechWife Posted March 4, 2023 Author Share Posted March 4, 2023 On 2/13/2023 at 9:34 PM, TechWife said: I’ve had an ongoing medical issues for six years. For about the past two years I’ve been asking if “x” could be the cause of problem #2 and had been assured by five different specialists and two GP’s that it is not. Guess what? Specialist #6 read a CT scan and said, out of the blue, said “I see this” about an area that wasn’t the target of a scan but was visible on the scan. I take that scan back to specialist #2 who says “yes, that might be the source for problem #2, it’s specialist # 1’s area, go back”. I go back to #1, who says it might be “x”, but beyond their expertise, go to #7, who is new to my little party. #7 says yes, it’s “x” but he can’t help, past his capabilities, go to #8. I went to #8, also new to the party, who said beautiful words to me today. He said - “x is the problem and I can fix it. Here are the complications from it going unaddressed for so long. I will do procedure “A” which will fix the problem and your body should heal itself. If this one complication doesn’t heal itself, I can fix that by doing “B” six weeks after “A.” I expect this will also clear up problems 3 & 4 because they are often caused by “x.” The time elapsed from first GP contact with the problem to being told by specialist #8 that there’s an end in sight - six years. For the past two I have asked about “x.” The one specialist that I didn’t have an opportunity to ask was #6, the one that said “I see this.” Time from revisiting #1 specialist this second time to being told there’s an end in sight by #8 - 3 weeks. If GP or #1 had been more informed up to six years ago & if they hadnt dismissed my question about “x” two years ago, I could have been done & maybe without complications. I have a procedure scheduled for March 3 - 19 more days and problems 2, 3 & 4 should be taken care of unless “B” is needed. Problem #1 is likely chronic at this point, but it’s cause is unknown, just dozens of scary & not as scary things ruled out, which is good. I am exhausted, but hopeful. Celebrate with me! I had cause "x" addressed yesterday with procedure "A." Specialist #8 doesn't expect any complications, so procedure "B" likely won't be necessary. Problems 2, 3, & 4 were cleared up by the end of the day yesterday. Problem #1 is likely unrelated and chronic at this point, so I have to come to terms with that. I'm relieved and more energetic today than I have been in a while. 30 1 Quote Link to comment Share on other sites More sharing options...
Soror Posted March 4, 2023 Share Posted March 4, 2023 Wonderful news!!! YA!! 1 Quote Link to comment Share on other sites More sharing options...
Kassia Posted March 4, 2023 Share Posted March 4, 2023 That is really great news! Definitely something to celebrate. 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted March 4, 2023 Share Posted March 4, 2023 Fantastic!!! Thanks for sharing. 1 Quote Link to comment Share on other sites More sharing options...
Grace Hopper Posted March 4, 2023 Share Posted March 4, 2023 Yay yay yay!!! Such good news, thanks for sharing. Wishing you a speedy and full recovery! 1 Quote Link to comment Share on other sites More sharing options...
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