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Lynne

Very upset!

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Hi everyone,

I’ve not been able to post for a while, as I have been so upset and very depressed.

My revision surgery has been a disaster! :o

The reason for my revision was to have the excess tissue removed from the end of my stump. I am LAK. There were at least 5 inches of tissue on the end, which twisted when I donned my prosthesis and whilst I had it on, this was very painful.

It was more painful again when I didn’t have the prosthesis on because the tissue dragged and pulled over the bone ending whenever I moved.

My original amputation was April 2005. We gave it 9 months to see if the tissue would shrink but unfortunately as it shrank in width it actually got longer. The weight of the excess tissue pulled it down further. It was decided to do the revision this January.

Following the surgery I immediately thought that there still seemed to be a lot of soft tissue present and the hamstring was extremely tight. As soon as the dressings came off I knew there hadn’t been very much taken off. My stump is like a picture, made up of previous scars. Guess what…….they are all still there.

It appears that very little tissue was removed but instead it was all stitched up and tightened inside, as well as the hamstring being shortened andscrewed to the bone.

The stump is actually longer than before, and falls well below my other knee. Because the hamstring is so short the excess tissue now curls under. A friend likened it to an elephant’s trunk! When I tense my muscle it curls under quite a lot, I will soon be able to pick things up with it!

Seriously though, this has been very upsetting for me and I now face problems getting prosthesis on.

My GP has arranged for a meeting to take place with the surgeon, the limb centre consultant and myself so we can try to sort something out. Boy am I looking forward to that! NOT

The general feeling is that it’s a mess and will only get longer as it shrinks in width, due to the now heavier mass on the end. Which is what happened last time.

I am so angry with the surgeon; he should have got this right! :unsure:

My GP’s answer was of course is to throw a load of anti-depressants in my direction, which I declined. I want this sorted and I want some support in getting it sorted. I don’t want to be filled with happy pills.

Sorry this is such a miserable post, even writing about it makes me tearful. I really don’t know if I have the strength to sort it out. I’m all out of fight!

A very disheartened…………………Lynne

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Hi Lynne

I really don't know how to reply, and if I get it wrong here, please forgive me, but I must say something. Reading your piece brought all of this to the front of my mind. I hope that sharing this at the least lets you know that all of us here share your pain.

I am sure that you have heard me mention my 43 operations. The majority of them were to correct the problems - created by, correcting the problems.

Things do go wrong, and I do not mean this as an off hand comment. I should never have lost my leg. I should never have been left alone with pulminary edema to the point that the next day a doctor told me that he had no idea why I was still here - I should have been gone 45 minutes before they got to me.

I should never have lost the kidney that a 3rd year intern tore up, and then left to fill with urine for 3 weeks, until my lungs were collapsing and another couple of interns found the problem over a long weekend.

(I am crying now. I do this when I re-live things too accurately).

My attorney brother looked into it and told me that he couldn't find where anybody did anything wrong - it was just that what they did went wrong.

I have parts and pieces today that are missing, or just don't work anymore - all because of complications during or after surgery. Things that "went wrong".

My circulation is worse today than when they went in to fix it 18 years ago.

They cancelled our insurance after 15 years of paying without a claim after the third operation. The rest cost us our home and contracting business and bankrupt us. My wife and I spent a year in our little camping trailer (17 foot) with my open wounds in the groins (femoral arteries), and sores on my new stump from a prosthesis that didn't fit.

Just this last fall, a simple angiogram went wrong to the extent that left my right arm black and blue and the bicep muscle torn where it felt like someone had shot a 16 penny nail in my arm. This was supposed to be a simple test, but it - went wrong.

If I were Catholic, I would have had last rites, six different times. One of them in our own home when a doctor rather than take a chance on operating on me when I only had 5% chance of making it, sent me home to die with a 104 degree fever because - and I quote here, "I don't want you dying on my table. End Quote.

I am just skimming the surface here, but this is enough.

Inside I have an anger, but it doesn't do me any good, so I keep it locked in a room in my mind and move on. Life is too short and I'm going to make the best out of what I have left, with what I have left. But I strill cry now and then and get angry when I think too deep about it. That's just natural. I'm not a Pollyanna.

I tell people that the good Lord doesn't know what to do with me all at once, so he is going to take me piece by piece.

I am just trying to say that I genuinely feel your anger, and will cry right with you. Then we'll dry the tears and go on. Life may be a b**ch sometimes, but it still is worth having.

I have no advice at all. I make it now, one day at a time. Without the support of my wife, my attitude would be entirely different. She definitely is my anchor. However, I find something every day to smile about and be grateful for.

I'm not going to say false things like, "it will be all right" and on and on. You know the drill. One way or the other though, it will be all right. Look at me - I'm back out building buildings again and enjoying life to the fullest.

I think what I'm trying to say, is that the Lord didn't just pick on you. I look around me and say - "Yes, but I've still got the other leg, my knee, and my life. Dont look back, Jim. Move on".

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bear-chinup.jpg

Hang in there :) Maybe find new doctors to put your trust in, this bunch blew it. Use your power and your voice and allow yourself to imagine a future with this situation behind you.

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Hi Lynne

I am so sorry that your surgery hasn't worked out. I can understand why you are so angry.

I haven't gone down the route of revision surgery but I have had a series of limbs made for me which I haven't been able to wear and been unhappy with. I have gone to a few of these meetings which have been set up to try and sort things out. What I would advise is to, if you can, take someone along with you, and get them to try and write down what is said (so you have a record afterwards), also to take in with you a prepared set of questions and issues you are concerned over.

Let them know how important this is to you, how it is affecting you and the people around you. Even though you may feel really angry with them at the meeting, stay calm but clearly point out the problems.

Also, don't forget, someone else on this forum mentioned once before "power dress", it certainly helps boost the confidence if nothing else.

Stay strong Lynne

Ann

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Hi Lynne

It's awful when surgery doesn't do what it's supposed to, isn't it? :( I've had one or two surgeries like that. In particular, I remember one surgery I had when I was 7 yrs old. I'm not sure if this story will help you? But I'll tell you anyway...

The surgery was an osteotomy to correct a knock knee deformity. After the surgery I had a leg cast which stayed on for what felt like months, but was probably only a few weeks. They admitted me again to remove the cast, because the surgery was very complex. When the cast eventualy came off, I discovered that the surgery had left me with 'foot drop', as they had severed one of my nerves! :o I was absolutely furious! :rolleyes: Despite my tender years, I demanded to see the surgeon who had performed the surgery. He eventually arrived at the end of the day, after my parents had gone home - I think he expected an easy time of it with just a 7 yr old. I started talking very calmly and when he began to smile, I raised my voice and pointed out exactly what he had left me with...I then demonstrated so the whole ward could see what had happened. He was stunned and apologised, blushed a deep red and made a quick exit.

I've mellowed over the years, but I'm still 'proactive' when it comes to surgeons, doctors, prosthetists, physiotherapists...etc. You have to be, as it's your body. If they've mucked something up, then they should do their best to fix it! Which they should be able to do in your case.

Personally, I think the situation that you're in can be very depressing. If you don't want happy pills, try pampering yourself and as Ann suggested 'power dress' (I think it may have actually been me who mentioned power dressing, Ann. ;)). You should power dress to make yourself feel better and more confident, and also to make the surgeons & doctors realise that you mean what you say.

When you have your meeting, take along your list of questions (don't let them see the list, if you don't want them to see it, as you must feel in control at the meeting) and also take along a good friend who you can rely on to calmly argue your point, if it all gets too much.

Take care & if you want to PM me.

Lizzie :)

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Hi Lynne,

I too am really sorry about what happened. It sounds to me like you need to sack your surgeon asap. It is absolutely shocking that he/she could leave you like this.

And the worst thing about it is that you will probably now have to have ANOTHER operation you don't want to try to correct what your surgeon did wrong. That is just so c**P for you to have to deal with.

Try to keep as happy as you can. I know they probably sound like futile words, but having been without leg for 6 months last year after my amputation I do know how it feels not to be able to get on with it. I don't know how much you like crutches but they really were my lifeline - get up on them as much as you can and try not to let the legless state stop you.

I am thinking of you - good luck with the meeting.

Fiona

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I, too, am very saddened to hear how disastrously your revision surgery went. Your anger is totally understandable.

I can't say anything that will help or make it better, so I just wanted you to know that you are in my thoughts.

I hope that the meeting is a success and that you finally get the results that you are happy with.

Be strong Lynne. Don't allow this to bring you down.

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Hi Lynne,

I'm sorry that you're having to endure these problems right now.

I don't know what to say to you, that hasn't already been said, but remember that we are all here for you, and if you want to rant, you go right ahead.

When you do have your meeting, be confident in what answers you want, write down some of your questions, fears and what you hoped for from the revision - tell them, in detai,l why it is so important for you, your confidence, comfort, the need to be able to wear a prosthesis properly and without pain. It may help you to keep focussed when you could be feeling overwhelmed and upset.

Don't leave there feeling that you are still unsure, and have more questions.

Good luck,

Sue.

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Hi Lynne, I too am so very sorry for this unnecessary BS you had to endure. I know if it were me, I'd find myself another surgeon, that would listen and understand my needs, which obviously this one doesn't seem to be doing. When you go to this meeting, be strong and don't hold anything back, afterall it's your life their dealing with, not theirs.

I wish you the best at this meeting and my thoughts will be with you. Please feel free to share any of your feelings, whatever they may be, no need to apologize, that's why we're here, k? ;)

Sheila lbk

Maine USA

Keep Smiling :)

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I'm so sorry this has happened, Lynne. I can only imagine how upset and frustrated you must feel. I hope you get it sorted out - and soon.

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Lynne--I have no great words of wisdom. Just positive thoughts to send your way to make sure you know that we're here for you.

Carol

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Hi Lynne. Damn, one thing after another. I'm really sorry for what you are going through at the moment.

I'm with Lizzie - take a friend along. Do you have a friend who is like a pitbull with a brain? That's what you need. I would volunteer, but I'm too far away ;)

Seriously though, if you feel you have no fight left in you, take someone with who can do it for you.

I can't believe they are pulling the 'happy pill' number on you again. Jeez. I don't know. You must be stronger than you think you are. You have stood your ground very well in the past. The whole forum saw you do it, even though you thought you couldn't at the time.

Thinking of you - keep us updated,

Ally

PS : A shot or two of tequila before your meeting will work almost as good as a pitbull.

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Hi Lynn,

Yes it sounds if your surgeon blew it and I personally know the big let down and all about having doctors try to give YOU antidepressants why they screw up.

But the group is right, find your inner strength again and study up on what steps can be taken to help you. Please do NOT let them try to suggest LIOSUCTION as was suggested to me.

If at all possible, when another dctor is recomended to you, then ask a third doctor about him First. Watch the doctors expression carefully, because they rarely will say anything bad about eachother! But the face doesn't lie.

I also want to thank Liz for her story, it really puts my trials and tribulations in perspective.Her Quote is SO Great. You cannot be angry and greatful at the same time.

You can do it, try to find out as much as you can about any surgeon and interview him. Ask how many amputee he has worked on and WHAT KIND . Remember they work for you not vice versa, and yes, find an ally to help stick up for you..

Best wishes

Hope you feel beter soon.

Unique

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:( :( Lynne, I feel so bad for you...I don't think there is anything I can say that hasn't already been said. I would be sure to take someone with me for that meeting.......... maybe your lawyer would be a good choice.

ann(eag)

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Thank you all for your words of wisdom and support.

I have a meeting with the rehabilitation consultant at the Limb Centre tomorrow, I shall take my partner and a list of my questions and concerns.

I know one thing for sure I want this sorted and I want it sorted as quickly as possible, that I will make clear.

I have taken on board everything you guys have said and I will try to come up with some sort of plan of action. It's difficult when I'm still feeling so down but I know I have to do it.

Thank you all so much for your continued support.

Lynne x

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lynne, u are in a bad situation. i also had revision surgery. for me was imortant, that the limbmaker and the doctor were also in contact, so they could discuss, how it could be best.

another problem is, that amputations are not made too often by surgeaons. so ask him , how much experience he has in the last monts.

whish u all the best.

ciao thomas

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HI LYNNE!

Wow - you have been through a lot. It is so difficult to have to go through a revision surgery and things not improve.

I have had two in the last few years and things have also not improved - they are much worse.

I wish there were great words of wisdom I could give you to help.

I think we have to find that strong inner voice that lets people know how much these things that happen to us affect us. I think we forget to worry more about number one (yourself) and instead we worry about hurting someones feelings.

Hind sight is 20/20 - but a lot of times for Doctors their hindsight costs amputees an awful lot.

try to look ahead to your meeting keeping your best interests at the top of the list -be emphatic that you want to know why there is still so much tissur there - they need to be accountable for the surgeries they perform.

I wish you all the best - keep your chin up.

Wendy RBK Canada

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Lynne - it is tomorrow - how did your meeting go?

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Hi Everyone,

Thanks again for the support and all the personal messages of encouragement.

The meeting with the Rehabilitation consultant, the top guy at the Limb Centre was yesterday.

I power dressed! Well, much as I could with the the old stump on show! I was a lot smarter than I would be usually on a visit to the limb centre. It certainly helped me feel more confident. Thanks for that advice Sue.

I also took my partner who was very supportive.

I felt that I was treated differently because she was there as a witness.

I also took a list of points I needed to make.

He examined me, meassured both legs and concluded that there was too much soft tissue!!!!!!!!!Well............................ HELLO!

There was even a suggestion that the bone may be too long! The hamstring is too tight as it is pulling the soft tissue under, effectively like and elephants trunk! No kidding guys!!!!

It was a very difficult consultation, I had to really assert myself and keep pulling him back the the main issues and get him to address them. My partner said she was very proud of me for the way I handled it. The physiotherapist who was in the room with us also said how well I had done.

He is willing to refer me to someone else to get the surgery done, but wasn't sure who was the right person for the job! Vascular, orthopedic or plastic surgeon.This worries me! Although he said he would give it some thought.

He will speak to my GP and await the outcome of a meeting I have on the 28th with the surgeon who did the amputation and revision. Not that he is ever getting near me again! I am not looking forward to that meeting as it will be the first time I have seen him since the revision and I will have to tell him how unhappy I am.

I'll cross that bridge when I come to it...lots of preparation needed for that one.

So, I managed to get more than I had hoped out of the meeting, at least he is now saying that the revision was not carried out as it should have been. It's a step in the right direction.

I'll keep you posted as to what happens next.

Thanks again,

Lynne

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Lynne--

I'm so sorry hear what you have been through with your revision. It seems like everyone gave you some great advice. It also sounds to me that you did a great job communicating what your concern are & that you wanted it to be dealt with. I'm so proud of you for being so assertive.

I do want to you to take some "ME" time. Pamper yourself with a good book, candles or what ever relaxes you. You need to keep your strength up with eating good foods as well. I found if I spend some "ME" time, I can deal with what the world hands me a little better.

I want you to know we here for you. I will keep you in my thoughts & prayers.

Patti

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Congratulations Lynne. Sounds like you had a very productive meeting, and that you kept it in line and on track.

Good for you!

Ally

:)

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Lynne,

GO GIRL!!! :blink:

Well done to you. It must have been really tough, and you did so well getting them to see your point of view, and to realise what the problems are!

You do need to pamper yourself now, as a treat, and to relax from the pressure too - even if it's a hot bath, lots of bubbles, time for YOU.

Take care, and keep us posted. :rolleyes:

Sue

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Lynee,

It sounds like you are dealing with this really well, even though the emotional side is still very difficult.

Writing down questions and concerns is a really good idea. This might sound silly but if you are dreading the next meeting why not try 'role playing' your way through it with your partner or a friend. Go through a couple of different scenarios, how this surgeon might act and see how you should respond. That way you will go in prepared and it might take the edge off.

I know this is really difficult because it's your body/your life but you have to focus on the end result that you want. It seems like that's what you are doing.

The medical profession do a great and often thankless job but like a lot of professions when they make a mistake they tend to close ranks. If this is the case then you might want to look at the possibility of legal action or at least using the threat of that. On one instance I have used that and the attitude of the person I was dealing with adjusted very quickly. I did it in a very dispassionate way so it was clear that I wasn't making an idle threat.

Whatever you do, best of luck with it. We're all rooting for you.

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Hi Lynne;

Now that's a result! You put yourself across clearly and concisely, kept everyone focused on the main issues, and extracted promises for progress - brilliant! :D

It's still outrageous that you've had to go the extra mile in order to get proper treatment, :unsure: but now you've got the ball rolling, keep up the momentum! B)

I think you can safely dismiss any further contact with the original surgeon, :o and I'm sure that keeping the pressure on other medics around you will lead to a recommendation for a reputable new one.

...but first - Sue is absolutely right - reward yourself with some serious pampering! :P

Very best wishes

Roz. :)

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Hi Lynne!

Good for you - It's great to take charge of you isn't it. I find when all these things happen to us we have little to no control, however we can control how we are treated and let all know we are human and there's more to us than the leg they're dealing with.

I hope all goes well for you and I want you to know you've inspired me.

Thanks!

Wendy ;)

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