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MUA It's been a long time.....

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That's just not right!!!!! OMG! I hope someone comes to their senses! Best of luck to you Natalie!:wubroses:
 
:console: Unbelievable, that is all they did.:sigh:
Sending you all positive thoughts and prayers, there has to be an alternative.
:friends:
 
Oh Natalie I felt sick when I read the update. What on earth were they thinking! I feel so sad for you. I hope and pray that maybe what they have done just might help you. Words fail me at the moment........
Lots of love and hugs, Dawn xxx
 
I will pass along the outpouring of sympathy and empathy and love from you guys her awesome friends and supporters.
xoxoxo
Linda
 
I wish I could, Jamie. But the fact is this is an under-research, little understood condition that is also outside most surgeons' interest radar. I just spoke to a lady yesterday who was passed onto me via another agency and she has much the same history as Natalie. Odd thing, she had both knees done and one is right as ninepence but the other is crocked and she is now permanently disabled and on crutches. She is also an academic and knows how to research a subject. She has researched this extensively and found very few papers on the subject and even fewer that are in anyway current. All simply stated that it was a very rare condition, that no causative factors were known and just detailed case histories and how effective (or not) any attempts at treatment were. I have also noted that in the various conferences I have attended it hardly got a mention.

It's a really tragic situation that such a disabling and incredibly painful condition isn't being research at all.
 
Here's some more of what she typed me - I'm trying to use her words but not forgo her confidentiality or embarass her in any way....

"Been discharged and I'm at home now even though I'm still numb from nerve block I'm in a bit of a mess I've had no sleep my BP is low and I've got a lot of pain.The fluid they took out of the knee was bloody I read my notes whilst no one was looking.not sure if that signifies anythingCant have any Physio until my pain is under control and got to go back in 2 weeks."

I feel utterly terrible for her as many of you do too - I'll keep the updates coming until she's ready to come back herself...

xoxoxo,
Linda.
 
Natalie,
All support for you and what you are going through.:flowerysmile:
linda, thank you for the updates.
 
Hi guys just letting you know I'm home I promise I'll update more when I'm feeling better I've had no sleep for 2 days and my BP is low so I feel very strange thankyou do much for caring it means the world to me xxxx

Jo it's such a shame that there is no research and I'm sorry that there is others going through this awful disease.I am very sure this is the end of the line for me now.Do you think that the blood in the aspiration fluid is anything? @Josephine:

I will post more soon cxxx
 
Hi Natalie, its great to hear from you. I am really upset for you, I know you have been plodding on in the hope today was the start of a new beginning. If this is all they can do for you, don't give up, keep pushing on and try finding a surgeon who is sympathetic towards your condition. Maybe write to some. Keep strong, keep fighting. Love 'n hugs Dawn Xx
 
:amen1: Natalie
This is the beginning of the fight not the end. You have been strong all along and now you will just continue to fight the good fight. You have me behind you and several hundreds more of the strongest people on earth the mighty BS team.

Take care :ATT637464:
 
Hi Natalie! I don't believe I've ever posted in your thread before. I have followed your whole story though, since we were new on Bonesmart around the same time. I wish you all the best and I do hope you get a break soon. You certainly deserve it!

I'm going to tag @Josephine: so she'll see the question you asked above in #572 as soon as she comes back.
 
Natalie,

No, this is NOT the end of the line! I will need some info from you, and then when I see Dr. Maale I am going to ask him about the cases he has worked on! Don't give up! :friends:

You will find that there are answers out there, we will just have to keep digging on "both sides of the pond!"

God bless you!

 
Natalie, I feel so badly for you--I agree it does not seem fair, but I think you are going to have to be your own advocate and do some research on your own. Perhaps Jo can hook you up with the other woman with the same condition. It does always help to have a friend who understands.

The doc gave me a drug called Ativan for pain--he said it works with opiods to increase their pain relief effects. I could not take them, but maybe you can get some and try them. I know that a lot of drugs have different names in the UK--they are similar to Valium which is also a muscle relaxant. Let us know if you want us to start researching for you--with everybody working we might have some luck! Kelly[/B][/SIZE][/COLOR][/FONT]
 
I'm sat here in tears you guys are amazing :) :)

I feel blessed to have you all thanks so much for taking the time to reply xx

I have done lots of research and we have a forum set up for the disease and there is about half a dozen people who post regularly on it.2 that come on here too who have had hip and knee replacements.For some the disease has finally burnt but for others it causes as much trouble as mine does.I have struggled to find any recent cases like Jo says the main things I've found are all before replacements I can't find any cases about those who have had issues after replacement.
I had a specialist at Birmingham who treated me for 6 years so after my appointment in 2 weeks I'll ask him what he thinks and see if he has dealt with the disease after TKR.

In the meantime if anyone else can help in anyway that would be totally amazing xxxx your support means the world to me.
I've asked for Occupational Therapy to become involved as I am struggling around the house making drinks etc and the whole family needs help too my husband has to work a 45 hour work and then come home and do everything in the house if I could somehow do the household stuff without being in pain and using my crutches or some support life would be easier for everyone.
I am in a lot of pain today and feel really exhausted but I have had a GA and they did move my leg around a lot and there is lots of swelling and the PT said going in to aspirate will have caused a flare up inside.
 
skigirl said:
Natalie, I feel so badly for you--I agree it does not seem fair, but I think you are going to have to be your own advocate and do some research on your own. Perhaps Jo can hook you up with the other woman with the same condition. It does always help to have a friend who understands.

The doc gave me a drug called Ativan for pain--he said it works with opiods to increase their pain relief effects. I could not take them, but maybe you can get some and try them. I know that a lot of drugs have different names in the UK--they are similar to Valium which is also a muscle relaxant. Let us know if you want us to start researching for you--with everybody working we might have some luck! Kelly[/B][/SIZE][/COLOR][/FONT]
Click to expand...
Kelly I think I will go and see my GP and see if there is anything else that is similar to this thankyou xx I would love the help too xx
 
Hi Natalie!
I'm so sorry you are going through this. I don't have much to offer as far as advice goes, but I'm here to listen and pray. I also sent your request to a friend's prayer group. I asked them to pray for some pain relief for you and I have to tell you what they said! "Why stop there? We will pray for a full recovery for Natalie!" From our lips to God's ears!
I hope today is a better day and you get some much needed relax and cuddle time with your hubby.
 
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