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NatalieMeadows
post-grad
Thanks so much Marina
MUA It's been a long time.....
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NatalieMeadows
post-grad
I haven't Pumpkin but it is definitely worth asking
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NatalieMeadows
post-grad
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!
Thankyou so so much ill write all this down
Could you give me a brief rundown of the Smith and Nephew HK I'm sure he knows all about it but if I had a bit of background knowledge that would be great I remember you saying it was a hinged replacement?
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NatalieMeadows
post-grad
You would all be very proud of me I have just been very firm and assertive with patient transport and told them how much I need to take an escort and they said I could So no need for 2 trains and a bus!!
So no need for 2 trains and a bus!!
OP
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NatalieMeadows
post-grad
I feel that I have been left with no choice available to me but to write this letter. I have had to wait nearly 2 months to be able to ask question and I feel no one is taking my concerns, feelings or the impact my condition is having on my life seriously.
I am 32 years old, married and have 2 active teenage children; yet every day I feel like a frail & helpless 92 year old.
During the day I am unable to walk around the house without the aid of crutches even then I am severely limited to the duration & distance I can do. If I go out, I can’t go unaccompanied, as I now have to use a wheel chair.
I am in pain all day every day. On a good day it is a 5/6 on a bad day 9/10 and unfortunately for me the bad days by far out weight the good days. I am unable to join in normal every day family activities because of my pain and sheer exhaustion. The emotional impact of both the pain & the exhaustion cannot be underestimate and not just for me but for my husband and children as well. Along with my wider family & friends.
My knee gives way every day, every day it does it more frequently & with greater intensity. Recently I have been unable to put my standing weight through it and on my next step I end up crumpled on the floor in an undignified heap & that’s with using the crutches.
I barely sleep 3 hours is a good night and that is never in one go, due to the pain. On top of the daily pain I have, I feel unwell most days due to the cocktail of medication that has been prescribed for me to try and combat the pain. It is a very vicious circle. On an average night I take 4 lots of medication & a sleeping tablet and the pain still keeps me awake. I am currently taking so much medication that my GP is concerned that eventually I’ll become immune to it and what them?
So far this year these have been my major falls:
March
I fell down the last 4 stairs after my leg gave way, This was during a very bad period when my knee flared up for no reason and I didn’t recover until July 2012, I was however on higher dosage of medication that prior to the fall.
14th September
Fell down stairs again, I was in complete agony back to using crutches again, which is now permanent situation, I was barely able to move my leg for 2 weeks and my medication was upped again.
4th October
Fell in the kitchen, my leg gave way and the crutches slipped. I landed awkwardly on the hard floor with the crutches on top of me. Thankfully my husband was home, it did however still take him over 30 minutes to be able to get me up off the floor due to the pain. Medication increased again.
24th October
My knee gave way on the landing; again I could only get up with my husbands help.
I am waiting for the day it happens and I am on my own in the house and could spend 8 hours on the floor or in the back garden on my own in a heap.
As I have previously mentioned my knee gives way every day and also locks every day. The bend of my knee is also being affected. I have no quality of life at all.
This a rough draft of a letter I am going to take what do you think?
I am 32 years old, married and have 2 active teenage children; yet every day I feel like a frail & helpless 92 year old.
During the day I am unable to walk around the house without the aid of crutches even then I am severely limited to the duration & distance I can do. If I go out, I can’t go unaccompanied, as I now have to use a wheel chair.
I am in pain all day every day. On a good day it is a 5/6 on a bad day 9/10 and unfortunately for me the bad days by far out weight the good days. I am unable to join in normal every day family activities because of my pain and sheer exhaustion. The emotional impact of both the pain & the exhaustion cannot be underestimate and not just for me but for my husband and children as well. Along with my wider family & friends.
My knee gives way every day, every day it does it more frequently & with greater intensity. Recently I have been unable to put my standing weight through it and on my next step I end up crumpled on the floor in an undignified heap & that’s with using the crutches.
I barely sleep 3 hours is a good night and that is never in one go, due to the pain. On top of the daily pain I have, I feel unwell most days due to the cocktail of medication that has been prescribed for me to try and combat the pain. It is a very vicious circle. On an average night I take 4 lots of medication & a sleeping tablet and the pain still keeps me awake. I am currently taking so much medication that my GP is concerned that eventually I’ll become immune to it and what them?
So far this year these have been my major falls:
March
I fell down the last 4 stairs after my leg gave way, This was during a very bad period when my knee flared up for no reason and I didn’t recover until July 2012, I was however on higher dosage of medication that prior to the fall.
14th September
Fell down stairs again, I was in complete agony back to using crutches again, which is now permanent situation, I was barely able to move my leg for 2 weeks and my medication was upped again.
4th October
Fell in the kitchen, my leg gave way and the crutches slipped. I landed awkwardly on the hard floor with the crutches on top of me. Thankfully my husband was home, it did however still take him over 30 minutes to be able to get me up off the floor due to the pain. Medication increased again.
24th October
My knee gave way on the landing; again I could only get up with my husbands help.
I am waiting for the day it happens and I am on my own in the house and could spend 8 hours on the floor or in the back garden on my own in a heap.
As I have previously mentioned my knee gives way every day and also locks every day. The bend of my knee is also being affected. I have no quality of life at all.
This a rough draft of a letter I am going to take what do you think?
Debbie_joints
post-grad
Natalie, I really didn't know what was all going on with you and only now catching up. Your letter tells me that you have had a very rough road to walk. I think the letter is very good and having your surgeon have to read it will hopefully get the point across. Good luck to you.
RestAssured
alpha
Excellent Nat!
You are concise, you put your feelings in, as well as the danger of more and moe frequent falls! Your family life is affected as well as your quality of life in general!
You spoke from the heart! That is the best way to go. I will try to get info for you about the knee, all I can say at this point is it is not the typical hinged knee joint. I am already at 130 ROM!
I will get back to you as soon as possible, but take this letter, have your questions ready, and don't leave that place until you have notes and scans in hand! Be assertive my friend. Not pushy. Just say, I need my scans and notes for a second opinion, and they have "been lost in the mail once already" so we will wait for them this time!
(((((((Hugs)))))) to you my friend! You are one terrific lady!
You are concise, you put your feelings in, as well as the danger of more and moe frequent falls! Your family life is affected as well as your quality of life in general!
You spoke from the heart! That is the best way to go. I will try to get info for you about the knee, all I can say at this point is it is not the typical hinged knee joint. I am already at 130 ROM!
I will get back to you as soon as possible, but take this letter, have your questions ready, and don't leave that place until you have notes and scans in hand! Be assertive my friend. Not pushy. Just say, I need my scans and notes for a second opinion, and they have "been lost in the mail once already" so we will wait for them this time!
(((((((Hugs)))))) to you my friend! You are one terrific lady!
Motorcycle Meemaw
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Good luck Natalie! I know you are at your wits end. We are praying for you!
speccybecky
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Good luck
karmigirl
post-grad
Natalie,
The letter sounds great, and if they don't get the message from that, I don't think they ever will. Ad Sonja has said don't take n for an answer and do not eave until you have all your information in hand. Please do not go to the extreme measures right yet, there are still options you have to exhaust first. We are family and we will do what ever it takes to get you help. Try and Google the exact name of the knee that Sonja has to read up about it, I don't know the exact one that it is or I would look for a link for you.
The letter sounds great, and if they don't get the message from that, I don't think they ever will. Ad Sonja has said don't take n for an answer and do not eave until you have all your information in hand. Please do not go to the extreme measures right yet, there are still options you have to exhaust first. We are family and we will do what ever it takes to get you help. Try and Google the exact name of the knee that Sonja has to read up about it, I don't know the exact one that it is or I would look for a link for you.
Campervan
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Hi Natalie, I think your letter is well written. When I studied Communication Skills and we had to write a complaint letter we were taught to use SCRAP and I find it works for other types of letters too. Basically the letter follows the format:
1) S - state the Situation
2) C - state the Complication
3) R - Resolution you want
4) A - Action required by them
5) P - be Polite
And I think unknowingly you followed this really well. I wish you all the best on Friday. My heart goes out to you.
1) S - state the Situation
2) C - state the Complication
3) R - Resolution you want
4) A - Action required by them
5) P - be Polite
And I think unknowingly you followed this really well. I wish you all the best on Friday. My heart goes out to you.
RestAssured
alpha
It is called the Smith and Nephew HK
Campervan
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Hi Natalie, when you're in the consultation and you think you're starting to lose courage I want you to imagine all of us Bonesmarties sitting on your shoulder saying "now come on Natalie, use all our combined strength to help you knock down that brick wall you seem to be up against"
Marina blue
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Love this Margaret...good job!!...We are with you Natalie!!!!!!!
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NatalieMeadows
post-grad
Excellent Nat!
You are concise, you put your feelings in, as well as the danger of more and moe frequent falls! Your family life is affected as well as your quality of life in general!
You spoke from the heart! That is the best way to go. I will try to get info for you about the knee, all I can say at this point is it is not the typical hinged knee joint. I am already at 130 ROM!
I will get back to you as soon as possible, but take this letter, have your questions ready, and don't leave that place until you have notes and scans in hand! Be assertive my friend. Not pushy. Just say, I need my scans and notes for a second opinion, and they have "been lost in the mail once already" so we will wait for them this time!
(((((((Hugs)))))) to you my friend! You are one terrific lady!
Thanks so much Sonja and 130 ROM is amazing!!!!!!!!!!!!!!
OP
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NatalieMeadows
post-grad
Thanks to each and everyone of you for your continued support and good,luck wishes they mean the world to me and hopefully will give me the strength to get through the appointment on Friday It's at 1030am UK time and I hope and pray it will be a good outcome but if not I will get those scans and move on!
It's 27 months since I had my knee replacement and 9 years next week since I found out I had the dreaded disease its been a long haul,and I would like some closure!
Margaret I love the picture and I will certainly be imagining you all right behind me
I will google the Smith and Nephew knee and print some information off too.
It has been a rough few days I have an upset belly,nerves and anxiety.hubby is stressed nerves for him too I think and my knee is not happy!!
It's at 1030am UK time and I hope and pray it will be a good outcome but if not I will get those scans and move on!It's 27 months since I had my knee replacement and 9 years next week since I found out I had the dreaded disease its been a long haul,and I would like some closure!
Margaret I love the picture and I will certainly be imagining you all right behind me
I will google the Smith and Nephew knee and print some information off too.
It has been a rough few days I have an upset belly,nerves and anxiety.hubby is stressed nerves for him too I think and my knee is not happy!!
OP
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NatalieMeadows
post-grad
Well my surgeons secretary has just rang and requested I come at 2pm instead of 10am as he has told her he will be very busy in the morning and doesn't want me to sit around waiting and then only be able to see him for 10 minutes where as at 2pm he can see me for half an hour!
So I just need to speak to patient transport now and see if that is ok with them.
So I just need to speak to patient transport now and see if that is ok with them.
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NatalieMeadows
post-grad
I would love to Jaycey but its a £100 fare.
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NatalieMeadows
post-grad
I have been thinking a lot about my ROM lately I've read a few stories on here too.
I'm between 70 amd 80 and struggle with the stairs I can't go down them well it's just one at a time,I cannot sit in the back of a car because I can't get in as I cannot bend it back enough I have to sit at a table with it outstretched I can't sit on a bus or a train or plane properly :(
Surely this is a huge issue that should be right?After the MUA in April the CPM got me to 110 but that was with a nerve block.
I'm between 70 amd 80 and struggle with the stairs I can't go down them well it's just one at a time,I cannot sit in the back of a car because I can't get in as I cannot bend it back enough I have to sit at a table with it outstretched I can't sit on a bus or a train or plane properly :(
Surely this is a huge issue that should be right?After the MUA in April the CPM got me to 110 but that was with a nerve block.
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