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MUA It's been a long time.....

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Campervan said:
Hi Natalie, would you be allowed to use a digital voice recorder, even on a smartphone, so that you have a record of what they tell you. Then you can listen again later. I like your idea of writing a letter and handing it to him. I always take a little notebook in with me and have my questions written down with gaps between and then write the answers underneath the question. I've had my little white spiral bound notebook from the day I was admitted to hospital and its amazing what you forget that they have told you.
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I have thought about this many times But I'm not sure if I am allowed too would I be breaking some kind of data protection act?I will ask when I arrive though I have a voice recorder on my phone so will have it with me anyway and it would help so much!I have a little book too I take it to every appointment and write like a crazy woman on the way home trying to remember everything!
 
Martha said:
Hi Nat-
I like the idea of a recording. I also take my list of questions but I don't think I could write down the answers very well. I'd be too hurried so a recording sounds great. I find myself in the doctors meetings often missing some important information. He might start out with something of interest and I get caught up in that thought and don't hear the rest of what is said. And I know how important these meetings are too us. Alot of emotion goes into that room when we walk in and we want and need our questions answered. Lord knows you have waited long enough for his answers. We are all anxiously waiting to hear what happens. Be calm and be strong.
Martha
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Hey Martha lovely to see you over here :) I updated SC forum too.I am dreading the appointment I was saying to a friend last night I don't know wether I will shout or cry and she said do both make them understand how emotionally and physically exhausted you are.I am counting down the days,the anxiety is making sleep even worse and I'm averaging 2 hours a day/night :( Thanks for always being here Martha xxx
 
RestAssured said:
Natalie! :friends:

I hate to hear about all of the pain you are going through. Someone I met recently decided to try to get a phone consult with Dr. Maale and the nurse said that he wouldn't do that. I will contact Amy, and let her know that Dr. Maale and I have already agreed on your case that a phone consult was acceptable, after he sees the scans. (Not everyone who knows me can just use my name and bypass Amy!) :heehee:
Amy is a sweetheart, and she knows me well! As soon as I call, she will say " well what did you do this time?" :shrug: :whistle: :heehee:
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Thankyou so much Sonja I hope one day I can return this huge favour you are truly a great person xxx
 
So are you, and remember YOU are worth it! I know that pain is depressing, but with an army of BoneSmarties out here cheering you on, something WILL happen to give you a quality of life again! Never give up! :angel:
 
Natalie, Sonja is right we are all in your corner and a lot of us are learning through your experience!

Try and stay positive my friend! :console2:
 
Yes we will be there in spirit, and praying for you as well! Stay strong Nat! Write down your questions, have hubby take notes, and double up with the voice recorder! Remember this Consultant is treating you, and you should have the right to record, write down, and ask anything you need to in order to get answers! YOU are the patient, and patients have a lot of rights! Be assertive, but cordial, and you will get farther. I have found " because I am shy" :blush: that doctors will not only listen to me about my problems, but are willing to help other people. I don't get mad, I am just very well prepared! :wink:
 
I struggle so much in the appointments Sonja,I always go to pieces I either cry or get really angry and find myself not saying anything because I'm scared of being rude and saying the wrong thing.
I always think I'm prepared but I'm not :( I'm not sure what I even want to say this time
 
Natalie, you can never be rude or say the wrong thing regarding anything to do with your health!!
Will be thinking of you tomorrow:console2:
 
Natalie, understand the frustration!

Think about what questions YOU want answered! Put the most important to you at the first of the list, have a copy that you hand to the consultant, and have hubby ready to write. I know it will be emotional, but try to keep your emotions in check as much as possible, until he says that he CAN'T help you! If that comes out it is time to get the scans, records, and let Jo help you get them ready to send to Dr. Maale.
 
Thanks Jan xx my appointment is Friday thankyou so much for the good wishes :)

Sonja that's a good idea I'm so stressed I feel like I'm losing sight of everything,my main objective is reducing pain and gaining back some of my mobility but he and many other doctors have said so many times that its not possible I wonder if I'm aiming too high?
I would like him to consider going back into the knee and seeing if there is disease and maybe adhesions he could remove and also like him to consider the possibility of a similar knee to yours.
I would like to ask him what his opinion on amputation would be too.
I'm almost certain he will refuse all these things and tell me we are at the end of the road though....
 
Nat..you have a copy of my letter that I wrote to my OS. And he read it before my appt. If he hadnt I would have read it out loud to him.
 
Hi Natalie..I have just read about your situation and want to say that I am so sorry all this is happening to you. I think sometimes we feel like we're the only one who has problems til we hear about someone else. I will be praying for you and hope you can get the answers and help that you need. Try to stay strong, have faith, and know that we do care for you!
Hugs my friend!!!!
 
Hi Natalie,
We're all here for you. Have you considered asking about fusion?
Merry and Sonja have given you great advice,
 
Nat,

Ok,

Let's see,

1. Can you do anything to get me out of this pain and regain mobility?
2. Do you think you have exhausted all of your options?
3. Are you willing to go back in and explore the possibility of adhesions or remnants of SC that might exist?
4. Would you be willing to do a revision using the Smith and Nephew HK that Dr. Maale in the US is having great success with?

Nat, NO to amputation! If he is unwilling to help you, the BoneSmarties are going to find a way! Trust us! We care about you and you are a valued member of our family! :console2:
 
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