MUA It's been a long time.....

[NatalieMeadows]

So I've seen the new surgeon and he's offered me 3 choices an it's my decision and mine alone which one I decide to take.

1. Do nothing carry on as I am probably get worse every knee replacement I have the knee cap will become more unstable etc.

2.Fusion which will mean the leg is straight forever but this operation is one where they can remove all if the synovial lining so almost certainly all the chondromatosis but the mobility will be a nightmare getting around with a straight leg wouldn't be easy and I may not get rid of all of the pain.

3. Above the knee amputation drastic I know but if I don't suffer from a huge amount of phantom pain I could be fitted with a prosthesis which would able me to walk,drive take days out and holidays with the kids without always thinking about how I will manage first because of the pain I'm in now.I could go back to work for the first time in 10 years.
His advice was to go to a rehab unit and speak to people who have had a similar situation to me who have been in pain for years and got to the end of the line and there's nothing more that can be done.

So finally someone's letting me make the decisions!!!


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[Celle]

Well Natalie, he put it on the line for you! At least, he was honest and treated you like an adult.
Here, have a hug! ((((((((((Natalie))))))))))

You've got a lot of thinking to do. I seem to remember Josephine telling of a nursing colleague who had a fusion, but managed to do all her nursing duties. Is that right, Josephine ?

 

[Knitter4444]

Was he able to tell you why this was all happening?

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[Jamie]

I wouldn't make any final decision until you see Dr. Maale, Natalie. But after meeting with him, at least you will have some options. I know only you can make a choice as to what to do next. You know we'll support whatever you decide to do.

 

[RunA42K]

Wow Natalie, some choices you have. I know this, I would never want my leg straight for the rest of my life. I've imagined these scenarios not thinking really that I'd rather face one, but then I never thought I'd be getting a revision either. Of course you have to talk to many people, professionals, those that have gone through this and your family. When I left the hospital on Wednesday after learning that I should have a revision, it was across the street from a beautiful park where I used to run many fun miles with my friends, also its part of the Houston Marathon route. Well, the point I am getting to was that the first runner I saw was a man with one leg and one spring blade leg. I said out loud to my husband "good for him!" I wondered if was a sign for me...my husband totally dismissed that but what I saw in that man was that he took what was a really negative situation and turned it into a big positive. He was functioning as well anyone else out there in the park with him. I felt admiration for him.

 

[NatalieMeadows]

Was he able to tell you why this was all happening?

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He said it was a number of things,numerous surgeries will have put my knee under so much strain and caused more and more pain each time,the knee disease I have will have caused lots and lots of pain and damage and obviously some of it is coming from my brain,the brain will have started to register I've been in this pain for so long and now it instantly just keeps giving me pain.


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[NatalieMeadows]

Wow Natalie, some choices you have. I know this, I would never want my leg straight for the rest of my life. I've imagined these scenarios not thinking really that I'd rather face one, but then I never thought I'd be getting a revision either. Of course you have to talk to many people, professionals, those that have gone through this and your family. When I left the hospital on Wednesday after learning that I should have a revision, it was across the street from a beautiful park where I used to run many fun miles with my friends, also its part of the Houston Marathon route. Well, the point I am getting to was that the first runner I saw was a man with one leg and one spring blade leg. I said out loud to my husband "good for him!" I wondered if was a sign for me...my husband totally dismissed that but what I saw in that man was that he took what was a really negative situation and turned it into a big positive. He was functioning as well anyone else out there in the park with him. I felt admiration for him.

Yes I agree I think it was a sign for you we have to be determined to put ourselves through these things and I'm sure our paths are all mapped out for us and despite what we all go through there is an end story for us all.

Amputation may seem drastic to some people but when a surgeon tells you that you are only going to get worse every surgery you get not better it's hard to think of yourself going through numerous more ops and 10 years down the line having an amputation anyway.
He said I could have another replacement with this special replacement that Sonja has I could have pins put in up my thigh and down my calf to try and keep my replacement in place more than this one is BUT each op will cause more damage and more pain and even less mobility than I have now each op could reduce my flexion and extension and I could end up with about 25 degrees flexion which would mean I would struggle even more than I am now!!The thought of all that truly terrifies me as does amputation but I could end up with a good outcome.


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[leejaa]

I have no advice to offer as your choices are so hard and personal - I can only keep you in my thoughts and hope whatever you choose comes out the best in the end at improving your life.

 

[karmigirl]

Natalie,
I see Jamie saying that you will be seeing Dr Maale, how soon? If it were me I would hold off on any decision at this point and see what Dr. Maale has to say, see if the 2 agree, and take it from there. It just may making the decision easier on your part if more than 1 is telling you the same thing. Your choices are pretty scary, and to be honest I would not want to be in your shoes right now, but please know that we are all behind you on what ever you decide and will always be here for you in what ever way we can. You will be in my thoughts and prayers during this mentally and physically trying time for you, and will be praying for you to make the right decision for yourself. At least you can now make your own choice for your OWN life, that must be somewhat a releif for you. And at least it is not the same old same olf there is nothing we can do for you and it is all in your head, been there done that and really I don't deal with that very well.

 

[Josephine]

I seem to remember Josephine telling of a nursing colleague who had a fusion, but managed to do all her nursing duties. Is that right, Josephine ?

She had a hip arthrodesis.

Amputation may seem drastic to some people

Not to me - I've wondered when somebody was going to bring that,and the fusion, up as an option.

I could end up with about 25 degrees flexion which would mean I would struggle even more than I am now!!

And being pretty much like a fusion anyway.

People do adapt to fusions/arthrodesis just as amputees adapt to that. There's so much technology in the treatment options for amputees now - just look at the athletes in the paralympics! Amazing!

And I must tell you this,Natalie, a few weeks ago I was in M&S and there was a young man, probably ex-military by the looks of him, walking ahead of me wearing Bermuda shorts. For a while something kept nagging at me about him but it wasn't till I got to the self-service check-out where he was too, and could see the whole of him, that I realised he had a prosthetic leg! Granted it was a below knee amputation, but his prosthetic was the usual flesh coloured soft thing with a metal post at the back of it. That metal post was about 4" long and went into a wooden 'foot' which was in an ordinary pair of trainers! His gait was totally normal though and had I not been what I am (okay - yes I know - a nosy parker!) I'd never have noticed anything different.

So you have some deep thinking to do but I'm with the others, use Maale as your second opinion before you make up your mind about anything.

God bless you, it's an heck of a choice to make.

 

[Knitter4444]

My own physician is an amputee (one leg). She wears all kinds of pretty shoes..walks like someone without issues. She was in the Peace Corp and hit by a bomb. Technology is amazing. Bet that there are some good forums on the net..well not like we have here but perhaps you can find some strength from others. I hope you feel our love.

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[NatalieMeadows]

Thanks so much everyone for your good wishes and advice and as ever continued support

Jo it's amazing how good so many prosthetics are nowadays sometimes like you say its hard to even realise they are an amputee.

Mr Turner did speak to someone from Dr Maales office regarding what his options would be and he said if I would like we could maybe have a conference call and discuss what his ideas are.


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[Jamie]

That sounds like a good plan, Natalie. Was he saying he could set up a conference call now? I'd push for that.

Josephine .... does the NHS allow for the new high-tech spring legs? It is truly amazing what people can do with them.

 

[Celle]

Natalie, my son had an above-knee amputation about 10 years ago. It was due to trauma, not planned.

At first, the thought of him being "less" than he had been consumed us all. But gradually, as time has gone by, he has adapted and he is living a normal life. His prosthetic leg has very fancy knee and ankle joints and he walks without any aids - although he couldn't go on any long hikes, he does everything needed for his everyday life. He does have a handicapped parking permit and he is frequently challenged about this, because he does not look disabled. Occasionally, his stump gets sore and he has to have a few days without the prosthesis, during which time he uses crutches.

Nowadays, we have got so used to the loss of his leg that I almost forget about it.

I just wanted to reassure you that, should you choose to take that path, it is possible to still live a normal and fulfilling life.

Best wishes,
Caryl

 

[NatalieMeadows]

That sounds like a good plan, Natalie. Was he saying he could set up a conference call now? I'd push for that.

Josephine .... does the NHS allow for the new high-tech spring legs? It is truly amazing what people can do with them.

Yes he was Jamie

I'm not sure wether ill get the high tech spring legs but I could certainly do some fund easing to try and get the best types.


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[RestAssured]

Nat, I haven't been getting updates on your thread nd I just happened to find you on new posts! Before you make any decision, look at the outcome of my leg now! It has been a long road because of the kneecap, but that was self induced by not being careful! The conference call with Maale would be of tremendous benefit to you! I'm sorry Nat, but at one time I had to find someone who did Lymphedema quickly to save my leg! The knee and lower leg were turning black! I did not give amputation a chance, I found who I needed. Nat, now is the time to reach out to Dr. Maale in a conference call. The knee that I have is unlike any other being produced for revisions at this time! I can promise you that it is stronger than the original replacement! I love it, and I know you will too! Dr. Maale has already said they didn't get all the SC when they went in, so he knows what you are facing! I wish we could get you over here!

 

[NatalieMeadows]

Natalie, my son had an above-knee amputation about 10 years ago. It was due to trauma, not planned.

At first, the thought of him being "less" than he had been consumed us all. But gradually, as time has gone by, he has adapted and he is living a normal life. His prosthetic leg has very fancy knee and ankle joints and he walks without any aids - although he couldn't go on any long hikes, he does everything needed for his everyday life. He does have a handicapped parking permit and he is frequently challenged about this, because he does not look disabled. Occasionally, his stump gets sore and he has to have a few days without the prosthesis, during which time he uses crutches.

Nowadays, we have got so used to the loss of his leg that I almost forget about it.

I just wanted to reassure you that, should you choose to take that path, it is possible to still live a normal and fulfilling life.

Best wishes,
Caryl

Wow Caryl that's amazing thankyou so much for sharing your story May I ask if he gets any phantom pain and how long his recovery was please?
Thankyou x


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[NatalieMeadows]

Nat, I haven't been getting updates on your thread nd I just happened to find you on new posts! Before you make any decision, look at the outcome of my leg now! It has been a long road because of the kneecap, but that was self induced by not being careful! The conference call with Maale would be of tremendous benefit to you! I'm sorry Nat, but at one time I had to find someone who did Lymphedema quickly to save my leg! The knee and lower leg were turning black! I did not give amputation a chance, I found who I needed. Nat, now is the time to reach out to Dr. Maale in a conference call. The knee that I have is unlike any other being produced for revisions at this time! I can promise you that it is stronger than the original replacement! I love it, and I know you will too! Dr. Maale has already said they didn't get all the SC when they went in, so he knows what you are facing! I wish we could get you over here!

Hi Sonja

My surgeon is willing to try everything and is happy to go for a conference call but his main fear is that they've already done far too much damage to the leg for any new replacement to help at all.He said he's been studying my case notes scans x rays and chatting with all my doctors for the last few weeks and he wishes there were more answers than what he can offer me but he has said he will continue to discuss other options with anyone.
He doesn't want to put me through several more surgeries and for the outcome to still be the same :(
It's just so very difficult to get the surgery you've had done for me over here xx


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[Celle]

Hi again, Natalie,
My son used to still feel as if his amputated foot was touching the floor. When he was lying in bed, he often thought that his leg was bent, with the foot and lower leg going through the mattress and pointing towards the floor. That seems to have stopped now and he says he just doesn't feel it any more.
Immediately after the operation, he had a catheter inserted into the femoral nerve, which gave him pain relief. Gradually he moved onto oral painkillers. He doesn't need them any more and he doesn't experience phantom pain. He still dreams that he has his real leg.

He was in hospital for about 2 weeks, then had to go to physio, where they bandaged and shaped his stump. They also gave him exercises to prevent contractures, which can occur.

Once his stump was fully healed, he went to the Limb Centre, where he was fitted with his first leg. That was a very basic prosthesis, aimed mostly at getting him used to balance and weight-bearing. It was held on with a belt around his waist.

Later, he got the prosthesis that was held on by suction, and that had the fancy knee and ankle joints. He's worn out two legs already and each new version has had more refinements. He goes back to the Limb Centre once a year, more often if his weight changes, or if he has any problems.

I won't kid you, he's doing OK now, but he did have some dark days and I know he used to cry in the shower (so did I).

Now, just because I've told you all that, don't you go choosing amputation until you have fully explored all your options!! As Sonja says, do talk to Dr Maale.

Best wishes,
Caryl

 

[RestAssured]

Nat,

As you recall, Dr. Maale has looked at your records also. He did not say
1. Leg too far gone
2. Need Amputation
3. We need to do a fusion!

When are you coming to the states, for your Disneyworld vacation??? Dr. Maale is going to start flying into Florida!!!!