Op was off - and then on again!

[NatalieMeadows]

Natilie,
Sorry about your continue problems. Can they not use radiation to treat your disease? When I was trying to get a diagnosis for my condition one of the Oncologist told me that if it turned out to be synovial chondromalacia they would do a synovectomy and if that didn't get it all they would do radiation. I was diagnosed with Lipoma aroboresence and have had two synovectomies, one artho and one open with a pkr.
I hope everything heals well and you won't have to just live with it.

They did offer it a long time ago when I was at a different hospital but it has never been mentioned since worth asking then though thanks davrunner

I've had several synevectomies too.

 

[NatalieMeadows]

Thanks so much Jamie xxx

Maybe one day this pain will leave fingers crossed

 

[rerodriguez]

Natalie,

Well, this really stinks! I am so sorry. But I also think that you could find someone who can go in and remove the pieces, especially as they get larger. Even if the disease is still active right now, at some point it should burn out. How long have you had SC symptoms? I've had it longer than anyone else I've heard of (21 years), and it looks like mine has burned out (I sure hope it has!). It might just be a matter of time for you.

I know the frustrations of dealing with SC. You get so hopeful that this will be the surgery that will take care of it, that this will be the time you can get back to having a normal life, that you might get to feel like a young person again. And then, the hopes get dashed once again. You will need to make accommodations for now, but please remain positive. I still believe that at some point in the future, you will be better. After you heal from the replacement, you may want to find some other doctors to see and get some other opinions.

If you need to vent, I'm always available!

 

[FaithNZ]

Oh Natalie, I am so sorry to hear the bad news about the SC, but I guess it's good that the replacement is OK. I know nothing about SC so cannot comment, in fact I have learned all I know from this thread! However I do so hope that in the not too distant future your pain will decrease and your activity levels will increase. It seems a crying shame that you have travelled such a terrible journey and come back to square one. I am two months ahead of you and still have some soreness, but your story puts that into perspective and makes me very thankful for what I have. You are such a beautiful and courageous person, and much too young to be coping with this. I wish you all the best for the future and send hugs.

 

[Jaycey]

Aw Natalie - so sorry to hear this. But I completely understand what you are feeling. My THR was totally successful but I am still suffering from the back problems that were there before the op. It's so frustrating when you hear other say how great they feel and you are still trying to cope!

Please don't stray too far away from us. Anytime you want to rant - we are here to listen and offers hugs! :th_console:

Take care Natalie!

 

[RestAssured]

Natalie,

You and I have been down the path together, and so I think of you quite often! I am sorry that they have told you that you may have to just "live with it"! Pain is hard to deal with on a constant basis, and having a "clunking knee" because of your condition only adds to the frustration! You are so young! Can't you get a 2nd opinion? You have a long life ahead of you!

 

[ladydi8676]

Natalie, I am so sorry to hear that you have SC and that there is nothing they can do. Have you tried to get second opinions or even check over here in the US and see if there is any options here ? I myself am not familiar with that disease but I bet there is something out there to help. You are so young and my heart just breaks reading your story. i am sending you (((HUGS))) If you need to chat, vent I am here.

Diane

 

[NatalieMeadows]

Natalie,

Well, this really stinks! I am so sorry. But I also think that you could find someone who can go in and remove the pieces, especially as they get larger. Even if the disease is still active right now, at some point it should burn out. How long have you had SC symptoms? I've had it longer than anyone else I've heard of (21 years), and it looks like mine has burned out (I sure hope it has!). It might just be a matter of time for you.

I know the frustrations of dealing with SC. You get so hopeful that this will be the surgery that will take care of it, that this will be the time you can get back to having a normal life, that you might get to feel like a young person again. And then, the hopes get dashed once again. You will need to make accommodations for now, but please remain positive. I still believe that at some point in the future, you will be better. After you heal from the replacement, you may want to find some other doctors to see and get some other opinions.

If you need to vent, I'm always available!

Thanks Rebecca yes I may need to go back to the surgeons who specialise in SC at some point I think for now I'd just like to have a break from all the doctors and hospitals and physio,it feels like all I ever do is live my life from appointment to appointment and my surgeon actually said sometimes I tell my patients to take a step back and have a break of all things medical and you look after your knee as you know it best I thought that was really great advice.

I have had SC symptoms since I was 13 but I wasn't diagnosed until I was 21 so ten years ago.I hope one day it will just burn out :thmb:

 

[NatalieMeadows]

Natalie,

You and I have been down the path together, and so I think of you quite often! I am sorry that they have told you that you may have to just "live with it"! Pain is hard to deal with on a constant basis, and having a "clunking knee" because of your condition only adds to the frustration! You are so young! Can't you get a 2nd opinion? You have a long life ahead of you!

Hi hun how are you?

Yes I can go and see my SC specialist I think when my 1 year TKR anniversary comes round I will see how I am and arrange to see him and go from there :thmb:

 

[NatalieMeadows]

Thanks so much for all your continued support guys having this place and all of you has helped me get through this tough journey.

I think for now I will be just glad to have more good days in a week than bad days that would definetly make life a lot easier.Today is a bad one but I am going to get a good book and a hot water bottle and rest

 

[Jaycey]

Good idea Natalie! Rest easy!

 

[davrunner]

synovectomies are no fun. I feel for you. I've had two OS's tell me they are the bloodiest op that they perform. This last one seems to be healing so much better then the previous and hoping this takes care of the constant swelling and draining and injections.
I am praying you find an answer and don't ever settle on "you just have to live with it" There is an answer for you somewhere, I pray either you find it or it finds you. Take it easy.

 

[Jamie]

Natalie, hope tomorrow finds you feeling much better than today. I'll keep you in my prayers, hon.....you are such a sweetie!!!

 

[NaNaKnees]

Just popped in to say Hi Natalie. So sorry you're having so many issues with that darn knee! You absolutely don't deserve any of this. I feel some of your frustration as my other knee and severe spinal OA are not really allowing me to enjoy my new knee at all just now. I will be having my other TKR in June, so hope my back starts to behave itself a little.

I often think of you and I am going to say some special little prayers for you tonight. Take care and God Bless. Maggie