about me

Sunday May 30, 2021

Hi everyone, let me introduce myself. I am Anneke, 66 years old. I have been an active person all my life.

I have worked as an educator with both physical and mentally challenged children and adults. I was also employed in a school where I taught non-native speakers.

A small story: In September 2016 I decided to paint my stairs and impatient I was, painted the steps from top to bottom.

"But mommy," said my son, "how will you go upstairs to sleep tonight"? I said laughing, "I've already figured that out in advance,

I'll just go up along the bars of the stairs". And so it happened. The next morning I placed my left foot on the first step and I heard and felt a crack. Shouldn't have had such a big mouth.

With a lot of effort and pain (on the stairs that apparently weren't completely dry yet) I managed to get down. I haven't repainted the stairs yet so my footprints are still there. 🤣

A torn meniscus resulting in surgery.

A year later, however, I continued to have pain and difficulty walking.

Long story short: between October 2017 and April 2021 I had 6 additional surgeries, 4 of which were knee prostheses.

The first 5 operations were done by my orthopedic surgeon Dr. R.T. who is now retired. He was very sorry that he had failed, but since it is my constitution, he is certainly not to blame.

In the meantime, I was referred to a orthopedic surgeon Dr. T.C. in Herentals. "If he doesn't succeed, nobody will" said my physiotherapist.

It took them a while to understand what was going on. As a child I was very flexible and I could put my 2 legs in my neck without any problem. In 2016 before my surgery I was also able to do that with my left leg. Doing the splits were and still are simple for me.

It turns out that because of my hypermobility, the muscles and ligaments became longer and longer and did not want to hold my knee prosthesis. So every knee replacement has been a measure for nothing. The fault was not with the doctors but with my constitution.

Since osteoarthritis and osteoporosis were diagnosed, all these operations could have lead to a amputation.

After a year and a half of thinking, I have now come to the decision to go for an amputation. I have been immobile all these years, using a brace, crutches and a wheelchair. I lie on the couch all day, depend constantly on outside help and I have had enough.

I always went 200% for my rehab and from now on I want to have a positive outlook.

Walking, cycling, driving, doing your own shopping... In short

I WANT TO LIVE AGAIN!!! 😍

anneke

Tuesday 8 June 2021

In March '21 I got my 5th prosthesis from Dr. T.C. at Herentals. A month later my knee came loose and the bolts had broken off.

Back to surgery where they attached an extra plate with.

On Tuesday 3 June I had to check up with the surgeon. I was firmly convinced that it would again lead to an operation, but to my great surprise the built-in plate and the screws were still in place.

I did get heavier pain medication and had to use my stiff brace for another 6 weeks along with my crutches.

It was very confusing for me that day. Say for yourself, I should be very happy with this news! Gradually I came to the realization that if I can choose between 2 healthy legs or a leg prosthesis, I would of course go for the first option. 🍀

Thumbs up! 👍👍👍

Meanwhile the painkillers are doing their job, so I immediately want to start doing something.

The active person in me is being awakened. 😁

But once the painkillers wear off, the pain comes back in full force. So the medication is good for a few hours but in the end they don't take away the cause. It heals slowly according to the surgeon and I have to be patient. 🤔

I have decided to go for the next 6 weeks and hopefully things will improve.

Since I had already started the procedure for amputation, I will continue with it anyway. In that sense, I want to have a conversation with the surgeon who would do the amputation, a conversation with a psychologist, a conversation with the prosthetic company Vigo and someone who has already had an amputation.

If in the meantime my leg is getting better, I can still stop the procedure, which would of course be the best. 🤩

anneke

June 11, 2021

Last night I was introduced to Kathleen, a 46-year-old woman who had a leg amputation about 12 years ago. As soon as she entered it was as if we had known each other for a long time. A spontaneous, positive, confident, down to earth and talkative lady. 😍

As a young girl she was diagnosed with bone cancer. So you can imagine what an ordeal she went through. Chemo and over 20 surgeries.

Ultimately, the decision was made to have a leg amputation that she has not regretted till today.

I received a lot of useful information and she also showed me how she put on and took off her mechanical prosthesis.

Since her prosthesis is flesh-colored, it is not immediately apparent that she has an artificial leg.

She talked about her phantom pains which she has fairly well under control.

For someone like me it's difficult to comprehend when she says that she sometimes hurts her big toe that she no longer has.

It was by no means a heavy conversation, on the contrary, everything was discussed lightly and that is important to me.

It's nice to know that if I have any questions, I can always contact her.

Thank you Kathleen! 😘😘😘

A piece of advice: if you have to undergo an amputation, make sure you have someone who has experienced the same.

Talk about it, especially if you're anxious about what's to come. Fortunately, I don't suffer from that, but it's different for everyone.

DON'T WORRY BE HAPPY SONG

https://www.youtube.com/watch?v=cmCDqX3ngfA

I also had a conversation with the company Vigo, which makes leg prostheses and other prostheses.

They made it very clear to me what the pros and cons are. It is mainly the disadvantages that are important to me.

Phantom pains, not really being able to walk as before,....

The first prosthesis would be a fixed one without a movable foot that I have to wear for a month and then pass 30 examination points in which I have to pass everything before they start on a definitive prosthesis.

This is an above the knee amputation so I need to get my knee and foot under control.

anneke

28 July '21

Two weeks ago I wrote a serene and sober letter to my specialist asking me to amputate my leg. He therefore had two weeks to go through my letter calmly before I had to go back for a consultation.

We had a good chat this time. He understood that it was enough for me after 5 years.

In general he is definitely not for amputation but he made me promise to do one more thing and then he might consider it if this fails. He attributes the severe pain to nerve pain. So I have to start with the pain clinic.

Anneke

Dec 19 '21

A lot has happened in the past 5 months. We first started with Cymbalta, a drug that I had to take for 3.5 months. It would reduce the pain, but I didn't notice anything.

Meanwhile, on September 17, I got a lumbar root block. This means the nerve is numbed with a nerve needle through the back. It was painful but once it was over I didn't feel anything anymore. No results after 4 weeks. Knee pain remained the same.

November 19, they burned three nerves from the knee. I have a high pain tolerance but I wouldn't wish this on anyone.

Every time I got the giggles of the pain and eventually the doctor and his 2 assistants had to laugh too. Well that's me.

I have already called him "torture doctor" with a laugh. Fortunately, he was able to laugh about it himself.

This also did not help so I decided not to let any more nerves burn.

In the meantime, I have started conversations with the physiotherapist, occupational therapist and psychologist. Both the physiotherapist and the psychologist have said that I have a very positive attitude and use good ways to avoid the constant pain by seeking distraction.

I often put on the radio with rhythmic music, sing (out of tune), play piano, volunteered at my grandniece's school to make didactic games for first grade. Something I really enjoy doing.

Live Your Life Live Your Dream

https://www.youtube.com/watch?v=-SHDfmWS-68

Meanwhile, my knee is receding. To go shopping I use a wheelchair because I can't walk 100m with crutches or stand on my leg.

Inside I use my wheelchair if I really have to.

Even my exercises that I have to do are getting harder and harder because of the pain.

On the advice of my physiotherapist, I went back to my specialist. After research, he finally admitted that it's purely mechanical and has nothing to do with the nerves, which I've been saying for years myself. Not that I absolutely want to be right, but I was glad to finally be heard.

Since Dr. T.C. is a very good surgeon, of course he does not want to give up just like that, which I understand.

So next Wednesday I will have a bone scan and on January 6, '22 a radiograph, followed by another consultation. He still wants to see whether a more special prosthesis can be placed, but he was going to say honestly whether it would make sense or not.

A 5th prosthesis in less than 6 years! 😔 I really don't like this anymore because my hyperlaxity is going to play tricks again here, I am absolutely convinced of that.

I sent him an email again this morning asking him to consider my amputation. I have full confidence in him but he doesn't want to take that responsibility because I can get severe phantom pains. So I took the responsibility.

I also asked him to inform the pain clinic that I want guidance towards my amputation. I am well aware that these people still have a lot to teach me and that I still have a long way to go, but as crazy as it may sound, it would be my best birthday present. 🤗

On April 15th I will be 67 and I still have to add a few more years of rehabilitation and as long as I am active I want to go for it!

My second series of conversations will follow tomorrow on December 20. I get some sessions on how the nervous system works. I find this very interesting towards the amputation as everything is controlled from the brain. Hopefully I can also make it clear to them what I want to be guided further for. Fingers crossed 🤞🤞🤞

anneke

Dec 23'21

Had very interesting conversations with the physiotherapist at the pain clinic. I had a session about the functioning of the nerves in relation to the pain. The most important thing I remembered from this are the three circles: biological, social and psychological aspect.

Foto fromPDF:

IK VOEL JOUW PIJN: DE INVLOED VAN
OUDERLIJKE EMPATHIE OP HELPEND
GEDRAG EN GEASSOCIEERDE
PIJNUITKOMSTEN BIJ HET KIND

Een vragenlijststudie geschreven door Iris Audenaert

Promotor: Professor Tine Vervoort

Universiteit Gent

Foto fromPDF:

IK VOEL JOUW PIJN: DE INVLOED VAN
OUDERLIJKE EMPATHIE OP HELPEND
GEDRAG EN GEASSOCIEERDE
PIJNUITKOMSTEN BIJ HET KIND

Een vragenlijststudie geschreven door Iris Audenaert

Promotor: Professor Tine Vervoort

Universiteit Gent

These 3 circles are inextricably linked and can influence the pain in a positive or negative sense.

When you are in pain, you look for as much distraction as possible.

For me that is putting on music or playing the piano yourself. I'm doing Swedish lessons, making a family tree, I volunteer to make didactic games for a first grade, train with dumbbells to strengthen my arms,...

This really makes sure that despite the pain is chronic and sometimes acute, you better get rid of it anyway.

Laughing a lot is also one of the things that I find important and so I like to surround myself with humorous people around me.

All this makes you feel better psychologically and can handle everything better.

Also, make sure to maintain your contacts. Corona may make you see each other less, but there is still the telephone or cellphone.

Surround yourself with positive people. That does not mean that you can't be a listening ear for someone yourself. We are not the only ones with pain in this world.

So if you influence those 3 circles positively, I guarantee you that you can give a place to the pain in a better way. And this is also where my sessions and treatments in the pain clinic end.

When I asked to speak to a psychologist who would guide me to the amputation, they couldn't help me.

anneke

Dec 29'21

On the advice of my physiotherapist Raf Willems, I contacted the former CEO of the össur prostheses and record holder of marathon running on 1 blade, Kim de Roy in Iceland.

This was a very pleasant conversation. 🤩 I was explained 3 types of amputations, one of which I preferred, the Keep Walking implant. They have been using this method successfully for the Spanish amputee for more than 7 years.

https://www.youtube.com/watch?v=L4Tsddq0LNg

In this video you can see what the intention is and how it works.

I do not know whether it is applied in Belgium and whether it is refundable.

In the meantime I have had a bone scan and a radiography on January 6th and then I know my result.

In the last few weeks my leg has been deteriorating more and more. I no longer do my exercises, I can overstretch my leg and I am gradually getting an O leg on the left.

I have been asking for amputation for 2 years now, but my surgeon is not at all for that. And now I have to wait!

anneke

January 7'22

What a day yesterday! I had to recover a little bit today.

My orthopedic surgeon had been staring at my results for a long time without saying a word.

In the end I just said: "think out loud because I see you thinking". He turned his screen and said it didn't look right.

He had a plan A and a plan B.

Plan A: He could try sticking a longer pin in my shin with the high probability that the bone will fail. Plan B: amputation.

I could not believe my ears. Apparently around the shin there is a proliferation of one or the other that does not belong there. I asked if it was calcium buildup. I only got a no but no further explanation.

In any case, I can't keep walking around with it for too long. I will read it in the report soon.

I didn't like plan A at all, so it's going to be plan B.

When I asked to apply the Keep Walking implant, he referred me to Ghent. He was enthusiastic about this method but has no experience with it himself. He is going to make an appointment for me himself and immediately send my file to Ghent.

I hope to get a call in the course of next week to who and where exactly to go. 😉

He would also put me in touch with a patient who had this implant placed and is very satisfied with it.

That's crazy, I've been asking for this for over 2 years and suddenly it's no longer my question but a necessary evil. 💚

anneke

20 January '22

I received a phone call that on 27/01 I will receive a phone call from Dr W.V. UZ Gent for a first telephone consultation. I will probably get my first appointment to discuss the further course of the process.

Yesterday I met Ben, a calm, cheerful man who had his amputation 33 years ago. A while ago he went for the Keep Walking Advanced, so for the click system. Soon he will have his operation with the click system. Fingers crossed 👍👍👍

Ben gave me a lot of information about the trajectory. Some consultations are preceded by but also conversations with a psychologist, psychiatrist, physiotherapist and others. I'm looking forward to that now. Just because I've been reading about it for two years doesn't mean I know everything about it. I am also supervised by a team of surgeons, in consultation with the other specialists and myself. This will also determine whether I qualify for my method of choice or whether another method is better for me.

In any case, I am fully informed about the possible methods and their consequences.

It was nice to meet Ben and thank you for your good info! Toi toi for February 1! 🍀🍀🍀

anneke

January 29 '22

Why again and again setbacks? 😥 I was totally confused yesterday. 😕

I counted down the days to the phone call from Ghent. Yesterday I got a call from the orthopedic doctor. It now appears that the Keep Walking method is not used at all, but the Swedish OPRA method is. I also felt the resistance of my amputation again. Again they will check everything to see if there is any other option, but I don't want a 5th prosthesis anymore. It always ends up the same anyway. My ligaments, tendons, muscles are stretching and not holding the knee prosthesis. Now I was supposed to get an appointment next week for a month later.

Yes, I sometimes have days when it doesn't go well for me, but luckily that can quickly turn around for me.

Thanks to Dries van Vigo (the prosthesis maker) I immediately got the correct link to the Swedish website: www.integrum.se

This is about osseointegration. Apparently the Swedish professor Per-Ingvar Brånemark is the inventor of this system.

He discovered by using a titanium implant that the bone cells fused with it. In other words, titanium is not rejected by the body and integrates

with the surrounding bone tissue. The Latin name os means 'bone' hence the name osseointegration.

Of course it has many advantages: no tube but a click system so that you are less troubled by sweating, wounds, pain and pressure, it improves walking comfort, you can sit more easily and it is easy to attach.

On the other hand, you have to be very careful not to get an infection through the opening in the stump. I really like going for a swim in the Mechelen pond because it is quieter and a beautiful green environment. Is that still possible? Or is there something that, despite the protruding pin, you can temporarily close this opening so that no bacteria enter?

In addition, I still smoke 7 to 8 cigarettes a day. I've already lost a lot of weight but it's very difficult to stop.

What should I choose now? With tube or without??

There is also a small chance that the UZA in Wilrijk has a doctor who uses the Keep Walking method, but I can't call him until Monday.

The advantage here is that I can always opt for the tube in the beginning and possibly later for osseointegration, which is not possible

with the Swedish Opra method.

If you have experience with one of these methods, please let me know. Thank you in advance! 😍

anneke

February 2, 2022

The day before yesterday I received an unexpected phone call from Ghent that I have my first consultation on February 8th.

In any case, I am very curious about the Swedish system ORPA.

Now I'm counting down the days!

Today I had physiotherapy like every Wednesday. Raf my physiotherapist is as always in a good mood and made me laugh again today.

It's good to have people around you every now and then who make you howl with laughter. Especially with all its crazy stories.

He has already made my day and my mood can't get any better.😁

anneke

SMILE SONG

https://www.youtube.com/watch?v=Ir5e8xYFh4Q

February 3, 2022

Sometimes you need a day of reflection and then I play completely different music. That doesn't mean I'm That I feel bad .

Just a day of rest and thinking about the past and what the future will bring me.

To come to the conclusion that we live in a wonderful world. A life where there are sometimes setbacks, but despite that

you always see the sun shine again.

A world where you have the support of your family and close friends and that is extremely important.

Talking, crying, laughing together and a nice hug is so indispensable. I am blessed to have such people around me and with

I want to thank them all from the bottom of my heart 💖

But I think it's equally important to be there for others, if only that I can be a listening ear, give courage.

Enjoy the music there will be something for everyone.

anneke

Beethoven - Silencio

https://www.youtube.com/watch?v=H5eVx5-pC9E

F. Chopin - Nocturne No. 20 in C-sharp minor, Op. posth. (Lento con gran espressione)

https://www.youtube.com/watch?v=bf41Y6q_Qzo

February 10, 2022

Yesterday was a pretty emotional day. The day before yesterday my appointment was in Ghent. Same answer there as always. We are going to insert another knee prosthesis before amputating.

Nobody listens to what I say about my hyperlaxity.

The doctor wanted to take a quick look at my knee and pulled the knee joint apart and then clicked it back. I bit my teeth. Then she casually asked if that hurt. At that question I laughed again and said it was very painful.

The amputation would then also be done in three more times. First simply amputate and only later does the first part of the implant follow and six months later the osseointegration.

They want to place a knee prosthesis with a hinge and brake, but it was only on the way home that I suddenly thought that my penultimate prosthesis was one of those and it also failed.

Eventually I really start to think that this is a money grab and that my photos were not looked at properly because otherwise they would also have seen that I had already had that prosthesis.

Fortunately, I was able to express my frustration with my physiotherapist and he managed to make me laugh again. He also does not see the point of another knee prosthesis.

There is now one chance left for me and that is Thursday 17 February at the UZ hospital in Wilrijk.

A doctor there is very interested in the Keep Walking method.

Hopefully he looks through my file in time and doesn't bring up another knee replacement because then I think I'm going to start flipping.

If he still wants to do the amputation, I hope that this can be combined with the implant in the stump at the same time,

which is one less operation.

If I can walk with a tube, I'm already very happy and I don't have to do the osseointegration.

If the tube does not succeed, it is still possible after six months.

The question is, how much will this joke cost me? Since I act as the first test subject, I hope they take this into account.

I even allow them to film the operation if that can be positive for the UZ hospital and put it on YouTube. I have no problems with that at all.

And despite the umpteenth setback: always look to the bright side of life! 🤩

always look on the bright side of life lyrics monty python

https://www.youtube.com/watch?v=X_-q9xeOgG4

February 19 '22

FINALLY! is there progress 😂

At the UZA in Wilrijk I had a conversation with the orthopedic doctor who might want to work with the keep walking method.

However, they must first meet with the whole team to discuss this. If it is approved, I will be the first test subject in Belgium. If it is not approved then it is a normal amputation and then I have to accept that.

He was shocked that I had already had so many prostheses in just a few years. He also understands that I don't want to try another one.

When I asked if I needed to have conversations with a psychologist beforehand, he didn't think it was necessary because I am mentally prepared enough.

I now have to wait about 2 months for my surgery but I am happy with that. It will be my birthday present after all 😁

I still have to undergo some tests before that.

anneke

6 may'22

On March 14, I had a second appointment in the Uza in Wirijk. I left with great enthusiasm but returned home very disappointed.

With regard to the Keep Walking method: the surgeon first wants to contact his Spanish colleagues about the effect and chances of success of this method. Of course I have nothing against that, quite the contrary. Preferring to be well informed before making such a decision shows his good commitment.

Then the bad news came. he agrees with the decision of the surgeon from Herentals. First a new prosthesis with a longer pin in my lower leg. Only if this proves unsuccessful is the amputation.

My disappointment was enormous. Another year of rehabilitation for nothing! Wait until they realize that it failed again.

In the meantime I have turned 67 years old. I am absolutely not happy with this operation. However, for the first time a puncture was planned to find out why I have had an inflammation in my knee for more than 5 years. I still don't have a final result of this. All I know so far is that it's not a bacterial infection.

In principle, my operation is scheduled for June 16, but I am first on the list in case someone drops out and it is my turn earlier. My suitcase has been packed for several weeks to leave.

Due to the fact that I already have arthrosis in several places, I noticed lately that my hands were bothering me more, especially my left hand. I had an X-ray a few days ago.

I'm now getting an anti-inflammatory and a thumb brace. Perhaps part of the blame lies with myself from doing arm exercises with my dumbbells.

I noticed it became more difficult and painful to walk with my crutches or push my wheelchair. With the thumb brace it is no longer possible to do this at all.

After almost 2 months I have resigned myself to having the 5 knee prosthesis stabbed. I also decided to go into rehabilitation in Revarte so that they can follow me closely and see how I evolve very quickly in the initial period compared to other patients.

After about 3 months they discover that my knee is loosening again due to the spontaneous stretching of muscles, tendons and ligaments.

I'm really curious because for the first one my knee is also growing out and I have a slight bow-leg, despite wearing my brace.

I know, I'm not exactly radiating positivity right now, sorry about that. I try to jack myself up but this time I find it difficult.

anneke

June 26 '22

On June 16, I had my 5th and last knee replacement. It would be the heaviest hynchprosthesis. If this fails, the amputationcontinues. Of course I havenow fully gone for rehabilitation, even though the doctor told me that he cannot guarantee me success.