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MUA It's been a long time.....

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Well that's it he has left primary school and goes to secondary school in September he's so grown up and I did cry I am very emotional at the moment!:blush:
 
I am afraid it will be one of many milestones where you get teary eyed. I visited my grown up son in March. He took me to see his classroom (he is a high school teacher in the US). Got all teary big time. So proud of my "baby".

The hard part of being a parent is watching them grow and leave the nest!
 
I remember the day my oldest graduated middle school. He looked so young. He got married last year... I feel old again...
 
Natalie,

I am so sorry that you are having to go through all of this! You are such a young woman and this just isn't fair! I hope that the pain meds are giving you some relief at least! You are such a wonderful person and you have a very sweet spirit!:biggrin:
 
Good luck today Natalie! Sending you good ((((((((((((((((vibes))))))))))))))) for a positive outcome! :thumb:
 
Hey everyone I'm back but not with great news I'm afraid I have been discharged as there is no longer anything that they can do.

My replacement is fine I do have hyper-extension and a lot of clunking and moving but he says this is due to my muscle wastage and all the trouble I have had over the years he said he could go in and make it steadier but he would need to put rods in down my shins and in my thighs and he would never recommend this kind of surgery and as soon as he starts opening me up I am open to infection and lots more trouble and it won't get rid of the pain I am in as this is coming primarily from my synovium and this according to my consultant is the worse place to have problems,he said he did get rid of all of the chondromatosis but the synovial part still exists as you can never remove it all so that is why I get so much pain and lack of mobility and where most of my symptoms come from he described it as looking very grey and it shouldn't be like this.

He said I could send you back to PT and they could help a bit but not enough to be life changing,he could send me to Rheumatology for investigation into the soft tissue problems I have but again this won't eradicate all my pain and would only be giving me false hope.

He said the best thing to do would be to give me control of my knee and I learn how to manage it,learn my limitations,know that I will always walk with a stick for the majority of my time learn that if I push too hard I will end up in bed for several days and live my life with my knee disability instead of around it.

I am totally gutted but I do understand where he is coming from,when I was diagnosed 8 years ago a consultant told me that I would always have mobility issues and I would always have pain and he was right....

He said he replaced the knee because it needed doing he knows it didn't help as such but it slowed things down.

I feel pretty shocked right now but wanted to let you all know so thankyou for listening xxx
 
Natalie, I am so sorry for all you are going through. I can't really offer you any constructive advice but please know you are in our thoughts and prayers. :console:
 
Natalie,

I'm glad he was honest and straightforward with you. And I'm glad there aren't any problems with the implant. So, it looks like you are back to managing the SC.

But please do not think that things will never get better. From everything I've read, the SC does "burn out" at some point. My surgeon is pretty sure mine had burned out (after 21 years), but who knows for sure? I do think there will be a point when the SC is no longer active, and they will be able to remove all the pieces and you will be much more comfortable. I don't think either one of us will ever be "normal," but comfortable is pretty good.

I guess now it's time to focus on what can be done for the SC. Are there pieces that can be removed arthroscopically? What can they do for you in regards to pain management? At least you won't be pushing yourself unrealistically with knee exercises and PT. That alone should help reduce the inflammation.

I know you are disappointed, and you should be. You will have a period of mourning as you let go of some of your hopes. I remember being so hopeful after my previous surgery, thinking this will be it, and I will finally be pain-free. I quickly knew that was not going to be the case.

It's also very hard to be young and not be able to do all the things young people are supposed to be able to do. But, with adequate pain management and limitations, you can still have a good life and do a lot of things you want to do. We are both very lucky to have wonderful husbands and children. I really try to focus on the good things in my life and the things I can do.

I'm so sorry about this.
 
Thankyou Rebecca xxx

For now there is nothing that can be done surgically for the knee and he has given me an open door policy meaning I can go back to see him anytime I wish,I think only if things got a lot worse would I go back and regards to the TKR I will have it Xrayed every 4 years to see how it's doing.

He did say I may have good and bad periods and to expect this that I could end up in very little pain for months but to be very aware that it will come back just as quickly as it left!

I need to re assess my life and think about the things I would have liked to have done,have another baby go back to work full time being 2 main ones and think about things I can do,voluntary work maybe that way I am not letting a boss down or staff when those really bad times happen,I can explain to a voluntary service what my limits are.

I do have an amazing husband and children and I am very very thankful for that xxx

Hubby has taken today's news a lot harder than me and he hasn't said a word since we left the appointment I am giving him some space to come to terms with it.

I hope one day in the future I may have days where I don't think about my knee but if that doesn't happen then I will deal with it as and when I could be a lot worse off.
 
Natalie I am literally in tears! I am so sorry - this is not the news you needed.

I guess it's a matter of taking some time to decide what to do next. Can you get referred to a good pain management clinic?

Gosh Natalie - I just hope you know we are here for you. Please take care and do come back and keep us update won't you. :console:
 
Awwww Jaycey bless you xxxxxx It means so much having such amazing support xxxx

There is a pharmacist at my GP's who has also been dealing with chronic pain patients and she is really good so I think I will go and see her in a few weeks and see what she can do to help with my pain,it's hard to come to terms with being a long term chronic pain patient.

And of course I will update you all you are stuck with me now!!!!
 
Nat - I am sick for you - praying xoxoxxoxo
 
Well, I am gutted too for you, Nat. It's a real bummer when you find that medical science has its limitations and you're quite literally told to 'live with it'. I can't even begin to imagine what that must feel like. But you know we will always do our best to support and care for you. Once a BoneSmartie, always a BoneSmartie! :thumb:
 
Real sorry to hear that. As the husband of someone with chronic illness' and continued weakness and many other issues, I hope you r husband does come around soon. I know its not easy for you at all. If he feels so inclined, he could contact me if that might help. Of course, I type this sitting in a chair next to my wife in the hospital, again... I do wish you could have had better news.
 
Natalie....I am in total shock. I will hope and pray every day that medical science will come up with something that may offer help for you at some point. Even though right now you must accept that nothing can be done....people are working on solutions all the time and you just never know what the future holds.

But....knowing what this diagnosis is, I think you are very wise for taking stock of where you are and what you might like to do in the near future. God bless you and your wonderful husband. You both will have a lot of challenges in the coming months, but I believe you will come through them stronger than ever.

You have my support in whatever I might be able to do from afar. My heart is with you.
 
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