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MUA It's been a long time.....

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Yes step families test your relationship dont they I had 3 boys aged 12, 10, and 8 when i met my husband. He was so brave to take us all on . We went on to have 3 girls togther. Now we are one big happy family. Boys are all married with children and think the world of their sisters. The girls are 18, 20 and 22. Never in a million years in those early stages would i have believed we could all get on so well now. So hang in there. It does get better x
 
You won't believe this the transport still isn't here and we only have 35 minutes till the appointment and its 30 minutes I have rang the hospital and warned them and they said ok but who is to say that he will wait for me I feel so stressed now :(
 
Oh no Natalie, they are causing you so much stress, you don't need that on top of everything else. Praying you get to your appointment and get the answers you need and get the help you deserve.
 
Natalie, I hope to god that transport showed up! It's been such a long wait for you and your family.:console2: We'll all be here waiting your return!:friends:
 
Hey all just a quick message I'm on way home via another hospital to pick up another patient I could be up to an hour yet so just wanted to give you a brief rundown.
He said there was nothing more he could do and he will send me to a colleague of his for 2nd opinion and peace of mind that he hasn't missed anything but it is highly unlikely.I will explain more later when I get home.
I'm not in a good place but wanted to let you all know thanks again for your continued support xxxc
 
Natalie I am so sorry you are going through this! I want to go get you and bring you here and get you a brand new knee. Bonesmarties...is a knee considered a failure if it gives out constantly like Natalie's does? Have Natalie's xrays been okay?
Also Natalie I really think you need to get your walker back out so that you don't fall anymore! That is so frightening! I think the children are so much more difficult to deal with when your physical and emotional strength has been compromised by something such as this unfortunate orthopedic complication. Remember that teenage brains are not fully developed yet! I work with high school kids and some of them really can't help themselves. Many teens have a lot of inner turmoil, constantly wondering if they are okay, worrying about their looks, whether other kids like them, whether their bodies are ok. And of course all the angst about the opposite sex. Their bodies are surging with hormones and their body parts are growing, or NOT growing. This turmoil may be more about how the teen feels about themselves than how they feel about you and hubby.
I hate thinking of you out there getting shuttled around with other patients to other hospitals! Yikes!
We are all anxious to hear more about your doctor visit.
 
So this is how the day went I was 45 minutes late and he was on ward rounds when I arrived and the nurses paged him and he came with his team within 5 minutes he read my letter and then called us in.
He straight away apologised for the last few months and how sorry he was that he hasn't seen us sooner.He said he had read my letter and looked at all my results,blood tests scans X-rays aspirations etc and there was no sign of infection and no 100% evidence of SC but knows there will some that hasn't ossified therefore won't show on scans.
He doesn't feel however that this is causing all my problems.He said my problems were awful and wished he could find a solution but doesn't think there is one,operating isn't the answer.He will do a bone scan but all tests show no infection.Knee replacement is fine.I have just got an incurable problem and no matter what they do I will never be fixed.
He feels that one day I will learn to cope and live with this disability and thinks I should come off all narcotics as they are doing more harm than good.
He wants me to see a colleague of his Mr John Hodgkinson for a 2nd opinion in case he has missed something but he thinks its very unlikely.He doesn't want me to wait so that will be ASAP.
We discussed the Smith and Nephew knee and he knew all about it and said as there is nothing wrong with my TKR he doesn't think it will make any difference but he would hope I could get that one when I need a new one.
He wasn't keen on me seeing Dr Maale as he is worried I'm getting my hopes up and thinks I need to stop pinning my hopes on things and move forward.He also said he doesn't think any surgeon is ever going to be able to fix me.
He said he will do anything to help me he will refer me to whoever I want he will help get me to Dallas if that's what I want and once I have seen the new surgeon I can have all my records etc.
He was very upfront and sympathetic but that's the end of the line as far as he is concerned.
 
Natalie I don't know what to think of this, so therefore I can only imagine how you're feeling right now.
Did you get you xrays and test results and reports before you left?
 
Good lord these people are unbelievable!:headbang: My heart goes out to you, my dear!:console2:

How long will it take to see the other doctor?
 
Wow that was brutal. There is always hope and you are going to get this fixed but you are going to have be assertive! I hope his "colleague" can look at you without any prejudice from your current doctor having given up. Just have to see him and see what he says but don't give up! There are orthopedic surgeons doing research all the time. My own doctor is involved in some research about placement of implants into legs that have tumors. My first os was going to drill right through an enchondroma and the next one had a custom implant made so that he would not touch the tumor. One told me I could have the partial, the others said I needed the total. My point is that you need a few sets of fresh eyes on your leg! So it may take a few more consultations. I think it is too early and you are too young to just accept your current condition.
What is SC? Sorry I don't know all the shortcuts!
 
Natalie,
Please don't give up on the fact that maybe Dr. Maale can do something for you. And I am so sorry that you didn't get any real results today. How soon will you get to see the second Dr. You really need to get the ball rolling and get those results. If it were me I would take him up on the offer to see Dr. Maale and as soon as possible. Just don't give up at this point anything is worth a try and just because one Dr. wants to give up on you you never know what another will say. Hang tough my friend you have a whole army behind your efforts.
Seems like the Dr told you everything it is Not, but did he offer any advise as to what it IS?? I can not believe that soemthing isn't wrong that needs to be address with all that you are going thru. There just has to be someone that can help.
 
I am so shocked about your not being able to walk out of there with ALL your records. You have given them enough time in advance to prepare them. Is there a patient advocate available for you? I would like to know if a radiologists report also said that your knee implant looks fine.
Also your docs attitude about living with the pain...GRRRRRRRR that is soooo wrong of him. Do you have a rheumatologist that you see? They are so helpful. Mine has sort of overseen my knee journey with me. She doesn't believe in patients living in constant pain.
I am so sorry you are going through this.
 
Brownie SC is Synovial Chondromatosis its a benign tumour disease.I really hope a fresh set of eyes will help eventually the surgeon I am seeing now isn't a SC specialist but he seems to think the disease alone isn't causing all my probkems though.I don't have a Rheumatologist but I was saying to my husband I need someone who will deal with the referred pain too.

Jacky I should see the 2nd doctor within a fortnight my surgeon was adamant that I would get fast tracked.

Rose he gave me no answers to what it is or what he thinks is causing it.
They have said I can have the records etc as soon as I have seen this new doctor I'm pretty sure he will say the same as obviously my doc will have already told him what he thinks.So I think a doctor else where may help but I'm so scared of getting another knock back :(
 
Ok Natalie!

I think "rubbish" to what Mr. Porter said! I called Amy, Dr. Maale's Medical Assistant and explained everything! She said as soon as they receive your scans and reports, she will get them to Maale ASAP. Natalie, Dr. Maale is the one that people from all over the world come to when there doctors have said "There's NO hope!" I am shy as you know, :heehee: , but I make my rounds in the waiting room talking to people from all over the world whose doctors had given up on them! They tell me they were in excruciating pain, that the doctor said accept your position in life, but they refused! You could see the gleam in their eyes as they talked about Dr. Maale. He WON'T give up on you! Neither will the BoneSmarties, and we refuse to let you give up on yourself! You are too important to do that! Have a pity party tonight, snuggle with your hubby, and cry it out! We have a big job ahead of us, but with a nation of BoneSmarties at work, it is doable!
 
Please listen to Sonja Natalie. No words can say how awful you must feel at the moment. Sleep on it, see your doctor then plan what you are doing next. You have so many people here wishing you well, wishing you some solution. Keep going Natalie. Its not the end of the journey. Perhaps the start of the most important jorney of your life x
 
NatalieMeadows said:
I'm in shock devestated angry confused I don't know what to do anymore :(

I can have them as soon as Ive seen this new surgeon.
Click to expand...
How in the world can they hold YOUR records HOSTAGE! You paid for them! I can't believe what I am seeing. In the US, you sign a medical release form, and they tell you how much you owe, and sometimes you can wait while they run them off, or come back the next day! It makes me sick to hear that he "is sending you to a colleague so two doctors can basically try and beat you down saying, yep, Dr. Porter was correct, nothing can be done." Heavens, in the US, I don't let the doctor tell me about one of his colleagues if I don't like his opinion, because I know, the next doctor will agree with the first. I have to find someone outside of their circle! Sorry Nat, but I am mad! How dare they treat my friend like this! I wish I lived up where you are, and I would have a little "visit" with medical records people and Mr. Porter!
 
Natalie, I agree with all the other Smarties here. Never give up!! The journey to recovery is just about to get started and we all are hoping and praying for the best for you! We love you girl!!
 
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