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

[Josephine]

I can't add to what's already been said but as you say, Natalie, if the NHS won't provide, there are other ways to get things!

 

[NatalieMeadows]

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

Caryl

Thankyou so much if your open and honest account of how life has been if means a lot to me to her from someone's direct experience


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[NatalieMeadows]

I have already been to the States Sonja we were there 6 weeks ago and we couldn't get to Dallas as we didn't have enough money to fly then get transport to Dr Maales office the best way to do it would be to have a video call with Dr Maale.
I do realise he's not mentioned any of the things that my new surgeon Mr Turner has advised but I worry that it is going to take a miracle to get me to Dr Maale it cost me a lot of money for travel insurance to fly out to Florida so I enquired through a special charity who deal with helping people get abroad for treatment and they said the insurance home once I've been operated on would be thousands of pounds :(

My GP is going to speak to Mr Turner and they are going to try and arrange something.


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[RestAssured]

I do understand Natalie, but I have been following different people. One who had her leg fused, is in worse shape than before the knee replacement as far as pain goes and it was over two years ago! The other one had an amputation due to infection, and now wishes that she had tried the antibiotics route to have a revision like mine.

Nat as I said before, what Dr. Maale is able to do compared to so many other doctors is astounding! He is constantly researching better ways to do everything. I have been his "prize" student, because I am so alive and vibrant! My case is brought up in every lecture he does! I am humbled because God made everything fall into place that I was referred to Dr. Maale in the first place! He is one in a million, and if something happened to the left knee, I would be in his office in a heartbeat!

 

[RestAssured]

I have already been to the States Sonja we were there 6 weeks ago and we couldn't get to Dallas as we didn't have enough money to fly then get transport to Dr Maales office the best way to do it would be to have a video call with Dr Maale.
I do realise he's not mentioned any of the things that my new surgeon Mr Turner has advised but I worry that it is going to take a miracle to get me to Dr Maale it cost me a lot of money for travel insurance to fly out to Florida so I enquired through a special charity who deal with helping people get abroad for treatment and they said the insurance home once I've been operated on would be thousands of pounds :(



My GP is going to speak to Mr Turner and they are going to try and

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What will the charity pay for? That would be a great start!

 

[Jamie]

Natalie, if you can get that videoconference with your doctor and Dr. Maale, and he thought there might be something he could do, it's possible that then we could finally get some good estimates of cost for you coming here and giving it a try. That would be really helpful.

Somehow I thought you were coming to the states in November. I'm so sorry that you weren't able to get to Dr. Maale when you came. I understand the cost burden, though. I do hope help can come for at least some of that for anything you want to do in the future.

 

[NatalieMeadows]

The charity don't pay for anything they just help with arrangements with special flights and insurance and ambulance transport to and from the hospitals but it is all something you have to pay for yourself or with fundraising.
They feared I wouldn't even be able to get insurance to fly me home.

Mr Turner and my GP have said they will set up a video call but Mr Turner doesn't feel any surgery would help me but he's happy for me to have more opinions from other people.




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[Pumpkin]

What ever you decide we will support you in your decision. You are the only one in the position to decide what is best for you and your family once you have gathered all the information you need.

When you say ambulance here in the US we are thinking a vehicle with 3 paramedics 1 to drive, and two to tend to the patient, sirens, flashing lights, IV's, oxygen, heart monitoring, electrocardiograms, electric shock to restart your heart, and other intensive medical interventions to get you to the hospital before you suffer major consequences of your conditon.

Medical transport is provided by other companies for stable patients, and is much less expensive, you can be in a wheel chair or on a gurnery and be transported pretty much anywhere at a reasonable cost.

Handicap taxis are also available in all large city's that have wheel chair lifts, or ramps, the cost is the same as a regular taxi.

Wishing you all the best in your journey in your quest for a pain free, full life with your loved ones.

 

[Jamie]

I agree. I think the logistics would be something we could all help with, Natalie, if and when the time came. I know it's hard not to be concerned about all that. But the very first thing to do is to find out what, if any new options Dr. Maale might offer. Good luck, hon!!! Hope the conference is soon.

 

[kneeper]

I hope you can get this conference call arranged and get the minds consulting each other on your case.

 

[RestAssured]

Nat,

I am wishing you the best in whatever decision you make! I am not in your shoes, so I don't have a right to what I "think" you should do anymore! We have given you advice for a long time; I will now leave it up to you to decide. I wish you well and I hope whatever decision you make will turn out to be the best for you!

 

[NatalieMeadows]

Thankyou so much for all your help and caring words I've no idea what I will so and everything is very daunting both the prospect of going to another country to have surgery and even more so losing my leg.My family are my main concern right now and they are so unhappy having to watch me every day not knowing wether it will be a bad or no so bad day and having to care for me when it's bad and do all the household chores and stuff when I'm having a not so bad day so I don't make it any worse.
I'm sick of leading my life in a bedroom mostly waiting for the next time to take meds because the pains so crazy I'm a 34 year old mum and wife and I feel like a 90 year old granny I need to get a way to try and fix me to try and lead a normal life whatever normal can be for me.
Thank you for always being here.

Xxx


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[RestAssured]

Hi Nat,

We haven't heard from you in awhile. Just wondering what you decided to do?

 

[NatalieMeadows]

I've made no decisions at all my family aren't behind me in any way at all so I have just taken a step back from everything,dealing with the pain on a daily basis is enough and I can't cope with much more than that just now :(


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[leejaa]

Sometimes this is the best thing for one - just to let go and let the decision and questions percolate naturally till you know what you want to live with or try. Many good thoughts being sent your way.

 

[Pumpkin]

Natalie,
I am behind you in any decision you make, and agree with leejaa to let it percolate until you know.
Sending positive thoughts and prayers your way,

 

[Knitter4444]

Oh Nat.. so sorry you are not getting the support you need at home. We can't replace your family but I think we would all agree that you have a family at BS that is here for you.

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[Celle]

I agree. You'll decide when you are ready, Natalie. It's a good idea to not make a quick decision. You need time to assimilate all you have been told.

Meanwhile, we're all here, wishing you days when the pain is bearable and offering you ears to listen if you want to sound off.

((((((((((Natalie)))))))))) - big hugs!

Caryl

 

[NatalieMeadows]

Thanks so much for your kind words it's my parents and sibling that are struggling to come to terms with everything and don't understand why I'm in so much pain despite numerous operations and treatment.
My husband is being my rock as usual


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[leejaa]

Very happy that you have your husband to lean on and share your feelings with.