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MUA It's been a long time.....

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Nat,

I went back and read and it is still the kneecap. OK, I need a picture of the brace that they have you in. I will print it and take it to my PT Katie. We may be able to give you some ideas about how to slide it in place. When I first started my knee was very swollen underneath and the kneecap would move on me. It moves now, but I can put it back in place! Katie has already told me if there is anything she can do to help you she will! So will the rest of my T-Star family!:happydance:
 
NatalieMeadows said:
The surgeon said he can't take on my case its too tricky :(
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I think this may be a blessing in disguise, Natalie. If you remember, I did a bit of research on this chap and he looks like just a regular knee surgeon much like MP is. At least he's been honest and is not about to start messing with your knee if he brings nothing new to the table. Now your way is clear to contact Dr Maale.

And for all US members reading, in the UK patients get pain meds from their GPs so they are not cut adrift completely.
 
Thanks Jo! That is reassuring to know about the pain meds! Natalie doesn't need any more pain than she already has! Dr. Maale wants his patients to be comfortable, so NatalieMeadows, you won't have to worry while your here and I'm sure he will consult with your GP! Dr. Maale is very picky about the way things are handled! He has to be though, dealing with only high risk cases! He loves to talk about the knee he helped invent, the HK Smith and Nephew, and I can see why! That sucker can do things the other one can't and recover! :happydance: By the way I own the distinction of being the only patient who has turned that sucker upside down when I was right side up! He was on the phone with the manufacturer right after my story! Aww bless his heart, he probably wanted to give me something special for testing it so well! :heehee: He told me according to specs there is only supposed to be an 18 degree radius of turn, before it rights itself. I told him add over 100+ and he would be in the ballpark! :rotfl:
 
Wow. I just found this thread today and have spent hours reading all of it. I'm so frustrated I could scream and cry! You have been through so much!

I definitely think you should keep fighting for a cure, but I am curious about recommendations if this disease still causes terrible pain. Would taking the leg above the knee be an option? My daughter always tells me only half jokingly that she wants a chain saw for her leg which has RSD (Complex Regional Pain Syndrome) but RSD can spread, so that would never be a good idea. I'd never heard of your disease before today.

Are you taking vitamin D3, magnesium, K2, and a multi-vitamin? There is no way you can get enough vitamin D otherwise, even in the summer in a rainy climate it might be difficult. Be sure to get lots of protein and lots of water, too.

I know you are strong and you can get through this. I'm sure things will get better eventually, but I sure wish they would hurry up!
 
Pat, SC can be completely eradicated with the right surgeon! She has been through the mill, but Dr. Maale is anxious to help! He is probably one of only a handful that can do what needs to be done in her revision, and he has explained the process to me. We are praying that Nat will have answers soon! :angel:
 
I think I understand why the family has backed off. I can hardly stand to see my daughter in such pain some evenings. If I dwell on it, I start feeling depressed. Sometimes the family has to put up a bit of a wall or they risk being consumed by the disease, too.
 
Pat, Nat needs a support system. It is so hard for her to go through this, and the prospect of coming all the way to TX has to be daunting!
 
Josephine said:
I think this may be a blessing in disguise, Natalie. If you remember, I did a bit of research on this chap and he looks like just a regular knee surgeon much like MP is. At least he's been honest and is not about to start messing with your knee if he brings nothing new to the table. Now your way is clear to contact Dr Maale.

And for all US members reading, in the UK patients get pain meds from their GPs so they are not cut adrift completely.
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Jo it wasn't Mr Hodgkinson that told me this sorry I didn't make it clear it was the OS at Blackpool Vic well actually 2 chatted to me together Mr Alberto Elbo and Mr Mcloughlin they both started off as my team 10 years.
I see Mr Hodgkinson Monday I'm expecting much of the same :(
 
RestAssured said:
Nat,

I went back and read and it is still the kneecap. OK, I need a picture of the brace that they have you in. I will print it and take it to my PT Katie. We may be able to give you some ideas about how to slide it in place. When I first started my knee was very swollen underneath and the kneecap would move on me. It moves now, but I can put it back in place! Katie has already told me if there is anything she can do to help you she will! So will the rest of my T-Star family!:happydance:
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Can I take a picture straight from my IPad and put it on here?Or even email it as my laptop is in for repair in the mean time I will try and find one from the Internet.
It is far more stable in the brace than out as soon as I remove it the kneecap moves sometimes only millimetres but enough to make me scream!!!
 
Pat29627 said:
Wow. I just found this thread today and have spent hours reading all of it. I'm so frustrated I could scream and cry! You have been through so much!

I definitely think you should keep fighting for a cure, but I am curious about recommendations if this disease still causes terrible pain. Would taking the leg above the knee be an option? My daughter always tells me only half jokingly that she wants a chain saw for her leg which has RSD (Complex Regional Pain Syndrome) but RSD can spread, so that would never be a good idea. I'd never heard of your disease before today.

Th

Are you taking vitamin D3, magnesium, K2, and a multi-vitamin? There is no way you can get enough vitamin D otherwise, even in the summer in a rainy climate it might be difficult. Be sure to get lots of protein and lots of water, too.

I know you are strong and you can get through this. I'm sure things will get better eventually, but I sure wish they would hurry up!
Click to expand...

Thanks so much for taking the time to read my thread its very long :blush: we have discussed an above the knee amputation but the risks of phantom pain and me struggling to recover with a prosthesis is high.
I don't take any vitamins as I take that many painkillers then things to keep the symptoms at bay I feel like I'm constantly popping pills!!I do however eat loads of protein and drink plenty of water :)
 
Yes you can take a picture with your iPad and email it to me. I will give you my email in private email since they frown on that in he forum! :wink:
 
Thankyou as always for your kind words and support :puppysmooze: :angel:

I have good and bad days I am struggling a lot with mobility sleep and pain and some days it's an effort to even get up.The knee is more painful than its ever been since the dislodging of the knee cap I see the surgeon Wednesday regarding this I think he will just say to keep the brace on.
Then Monday I see the 2nd opinion a waste of time if I'm honest but I'm being respectful to my surgeon.

It's been a very quiet christmas and new year is the same I'm hoping one day my festivities will be slightly livelier :thankyou:
 
Natalie, one thought that might help with your kneecap.. Sit on the bed with your legs in front of you if possible. Relax the muscles, maybe pain killers 30 minutes before to help muscles relax and then slowly start jiggling kneecap around. When it starts to loosen do a little more, and so on, until you can put it back in place. I have found that mine will still pop out without the brace and I have pain. There are times I have to sit and jiggle the darned thing yo get it to move. One difference is it sounds like you have a piece of SC interfering though, so it would be a lot more painful for you! Come to TX and Dr. Maale will take great care of you! :happydance:
 
Sonja I've tried it with heat and painkillers and I honestly cannot bear to touch It i get sort of electric type shock pain through it and the pain is insane I can just sort of wobble the leg like you are saying and it shifts but like you say sometimes gets stuck on a piece of SC or maybe scar tissue.
I forgot to say I am picking my scans up Monday xx
 
[Bonesmart.org] It's been a long time.....
Praying for you that the New Year will bring you an answer and solution for your knee so that you may begin a pain free life.
 
Natalie, you are on my mind so much these days. Please let us know once you have your films and history in hand. Do you have a plan to get them to Dr. Maale? I'm like Sonja....I really feel as though he could help you if you could just get here to the USA to see him....or if he somehow could see you in Great Britain. I know he went there once on a speaking engagement, so perhaps he might do that again and could see you in conjunction with the trip. You know, once you can chat with him on the phone about your case or via email, it would never hurt to ask about that. I pray for you every day.
 
Thanks so much Jamie I don't know where id be without you behind me.
I hope to email the scans and I can also scan my films and notes and email them too.
We are currently saving for a US trip!
 
Hi Nat,
I am sorry to see that things have gotten even worse for you.
I hope that you see some sort of progress forward in the coming year.
Cyber hugs and prayers coming your way!
xx
Sandy
 
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