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Other Platelet Disorders

TOPIC: Mistrust of doctors

Mistrust of doctors 4 years 7 months ago #53043

  • Aoi
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It's the concentrating on math that lets me block the MRI noise, which admittedly is quite noisy.

I know what you mean about not wasting time. I'm acutely aware of the few good hours I have per day and am very protective of them. I ignore my phone, don't check email, and often won't even go out during those hours. And I tend to go to the market, library, movie theaters, and other places during the off hours precisely to avoid crowds. I get better parking spaces, fewer people to navigate around or wait in line behind, and better service if I need it. Mostly though, I can simply get stuff done faster. I'm pretty obsessive about all this, but it does work quite well. Hope you can find good music for your 45 min. in the MRI.

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Mistrust of doctors 4 years 6 months ago #53171

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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MRI done. Only took 11 songs.

I have a copy of the MRI and if I'm reading it right, looks like three disks are in trouble.

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Mistrust of doctors 4 years 6 months ago #53189

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An MRI playlist? Good idea.
I hope you're misreading your scan, but you do seem to know what you're doing. I hope the trouble can be addressed without surgery.

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Mistrust of doctors 4 years 6 months ago #53207

  • momto3boys
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Thinking of you Sandi. At least you managed to jump through all the hoops to get some more answers. Hope you get better news than you are expecting.

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Mistrust of doctors 4 years 6 months ago #53227

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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It wasn't my playlist, it was the hospital's. Old rock. Not the best songs, but that didn't matter. B)

I Youtubed how to read an MRI. Guess I'll find out in the morning.

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Mistrust of doctors 4 years 6 months ago #53245

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Ha ha. I guess I can't read an MRI. Not three disks, just one. It's two levels up from the last one that I had done.

Surgery is Monday, March 7th. He wanted to do it this coming Monday, but it's not possible to change scheduled things around so quickly.

So all in all, it's about what I expected.

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Mistrust of doctors 4 years 6 months ago #53249

  • Melinda
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Just sent you an email since I couldn't get in here - kept telling me can't display.

But now I'm in and you have no idea how glad I am your Youtube Educational Course in reading MRIs wasn't accredited and that you only have 1 messed up disk and not 3 !!
Also glad to hear you have surgery scheduled and will be getting relief soon!

(PS - Stay away from Youtube classes!)

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Mistrust of doctors 4 years 6 months ago #53254

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Eh, Youtube did no harm. It was my misinterpretation. I've learned many things from Youtube, including how to give myself injections. I got one lesson at the doctors office and forgot by the time I got home. Youtube saved me.

I'll check out your e-mail.

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Mistrust of doctors 4 years 6 months ago #53273

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Glad to hear you overestimated your neck issues. Hope the surgery goes smoothly.

Also, I regularly find wonderful materials on YouTube to satisfy my endless curiosity. Keep learning, and let's hope you don't have to practice on yourself again.

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Mistrust of doctors 4 years 6 months ago #53276

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Youtube is quite handy. I learned how to use a Dremel and my daughter learned how to replace a dryer belt. Very useful!

I may have overestimated the disks but didn't overestimate the damage or severity. The Neurosurgeon did say that there is a shot I might get some muscle back, so that was good news. I hope so. I like things that can be fixed.

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Mistrust of doctors 4 years 6 months ago #53287

  • momto3boys
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I'm happy to hear there is some hope for muscle improvement and 1 is definitely preferable to 3 :)

Good luck with the surgery and be sure to update us here (I'm sure you will, we are all so spoiled by your consistent and reassuring presence)

Sometimes I wonder how we learned things that require that visual component before youtube. I learned knitting and crochet and my husband has used it for car repairs. Gotta love it!

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Mistrust of doctors 4 years 6 months ago #53289

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I agree. My grandmother taught me to crochet when I was 14 years old. I did it for about 10 years and quit. Last year I wanted to crochet again, but forgot how to do it. Youtube! Everyone I know now owns a scarf and they all love them.
The following user(s) said Thank You: cindyfrye

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Mistrust of doctors 4 years 6 months ago #53303

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Wow I've never heard of liking an MRI before. It sure takes all kinds.

I am so claustrophobic I have to take meds and so heavy they have to grease me to get me in the "open" machines. :pinch: Had spinal fusion on L5/S1. In 2011. No instant relief but better after PT.

It is so hard if you have multiple conditions that can overlap and cause the same or similar symptoms. The bottom line is you know Something is wrong. Lots of "Not my Specialty" answers will be received. There IS no other person to be your advocate but you.

Hope you get answers and relief soon, Sandi.

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Mistrust of doctors 4 years 6 months ago #53327

  • Melinda
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My opinion [and you know I have way too many] is a medical type video on youtube or anywhere else should not be able to be misinterpreted, it should be made so that there is no question. The consequences of a medical video being misinterpreted by a lay person could be dire. I've had a number of MRIs and CATs for various reasons and have always waited until I'm sitting in the office looking at the results being shown on the computer screen.

As you said cindyfrey, it takes all kinds :) I can handle an MRI because I know I can get out, but I couldn't handle crawling down into the pyramid in Giza probably because there were people in front of me and behind me.

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Mistrust of doctors 4 years 6 months ago #53330

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Melinda:

Although I did misinterpret the Youtube video, there was no harm done. I had the Neurosurgoen to make the diagnosis. No one is basing the actual surgical procedure on my opinion. ;) I wasn't using my interpretation as fact, only a guess. It really didn't matter to me how many disks were affected since I knew that I'd need surgery anyway. I only care about the damage and getting that stopped and possibly reversed.

I had my pre-op tests and pre-op physical. They found a UTI and are all concerned about it. My GP already gave me a script for an antibiotic, so I should have enough time to get that cleared up. Good thing I didn't wait until the last minute for those things or I'd have to reschedule. That would have been difficult because my husband had to reschedule his trips around me and would have been hard to do all of that again. Plus I just want this done already. It's been 9 or 10 very uncomfortable months!

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Mistrust of doctors 4 years 6 months ago #53338

  • Melinda
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Oh Sandi I know you - and that you wouldn't panic or do something dire - but I guess that's what bothered me, a video that you could misinterpret cant' be a good video because you do know what is going on. But some poor schmuck who doesn't know anything...

Fingers crossed the antibiotics have the UTI under control - will they test morning of surgery?

Break a leg my friend!

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Mistrust of doctors 4 years 6 months ago #53339

  • Sandi
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I doubt they will test again. The antibiotic should do it.

The video I watched was probably valid. Those things are hard to read. My Neurosurgeon had mine on the screen and was pointing it out to me. He said, "Do you see it"? I said no. I went closer. He said, "It's right there! Don't you see how the blah blah....?" I said, uh, yeah. I didn't see anything. I believe him though because I can sure feel it.

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Mistrust of doctors 4 years 6 months ago #53400

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Surgery is over. No complications. Taking some good drugs that aren't doing a thing so I am happily miserable. Hopi g to go home today. I'd rather be cranky in my own home.

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Mistrust of doctors 4 years 6 months ago #53402

  • Melinda
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Glad to hear all went well! Yeah, bet you can't wait to get home.

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Mistrust of doctors 4 years 6 months ago #53406

  • CindyAnn
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You are amazing Sandi - I pray healing is fast and the need for "good drugs" soon is all but a distant memory.

My thoughts are with you, Cindy Ann

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Mistrust of doctors 4 years 6 months ago #53407

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Excellent news. Sorry that the good drugs aren't doing any good, but hope you get to head home soon.

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Mistrust of doctors 4 years 6 months ago #53409

  • momto3boys
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So happy to hear that there were no surprises! Wishing for a quick recovery for you and hopefully your "new normal" will be better than the "old normal!"

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Mistrust of doctors 4 years 6 months ago #53413

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Any updates on Sandi's surgery. I hope it is done and went well, some relief would be good too.

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Mistrust of doctors 4 years 6 months ago #53420

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I got home yesterday. Took a shower today....aha that was fun. They actually told me to wrap saran wrap around my neck to keep the sutures dry. I have a separate neck collar for showers. It's impossible to wash your face and hair with a collar that covers the back of your head and all of your neck up to the chin. My entire throat got soaked including the suture tape. The water went into the saran wrap somehow.

I should explain that even though this is a spinal surgery, they go in through the front. There is a 3 to 4 inch cut across my throat. He was going to try to use the same area as the last time and cut through the scar. I'm not sure if he did because it's a mess there right now and I can't tell. It didn't matter enough for me to ask.

Still cranky and uncomfortable but I guess that's normal. I found that two Percocet work much better than one, so I did finally get about 5 hours of sleep last night. One day at a time.
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Mistrust of doctors 4 years 6 months ago #53421

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Oh, and my Neurologist's office just happened to call to remind me that I had an appointment today. I totally forgot about it. I told them that I wouldn't be coming and she asked if I wanted to reschedule. I said no, I won't be coming back and told her why. She basically hung up on me. I'm sure that will not be relayed to the doctor. They will be getting a letter from me.

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Mistrust of doctors 4 years 6 months ago #53422

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Glad to hear you're home. That's generally a much more comfortable place to be when recovering. I've had to wrap limbs to protect wound sites from water, and it never works. If you've ever had physics or fluid mechanics classes, you know it's virtually impossible.

I don't imagine your ex-neuro will hear about your comments, but I hope your letter is given due consideration. It'd be nice to think that physicians are interested in improving.

P.S. Nice photo.

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Mistrust of doctors 4 years 6 months ago #53434

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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No, I've never had physics or fluid mechanics classes. I'm more of a creative writing or legal brief/research sort of girl.

The last time I had this surgery I did keep it dry with some sort of patch and tape. I can't remember what I used though. I should take notes because I already know that I'm going to have this surgery again at one point.

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Mistrust of doctors 4 years 6 months ago #53436

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I gashed my hand years back and was told by well-meaning ER staff to keep the six stitches and surrounding wound site completely dry for a week. I managed it, but only by encasing my hand in a plastic bag taped with duct tape at the wrist, and holding that high above my head whenever using water. Naturally, this approach won't work in your situation.

Maybe you can keep videos of what you do and review them as needed in the future. But I doubt posting them to YouTube would be a good idea. Hope you're feeling better.

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Mistrust of doctors 4 years 6 months ago #53439

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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LOL! Your entire post cracked me up. I got vivid visuals of both shower scenarios!

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Mistrust of doctors 4 years 6 months ago #53440

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I'm laughing so hard I'm crying.

My husband bought me some Nexcare waterproof adhesive pads. They are pretty big and should cover the area. I think that's what I used the last time. Tomorrow will be the trial.

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