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Author Topic: Paley Institute | Bilateral Femur Surgery | Dr Dr Deszczyński & Dr Albrewczyński  (Read 16047 times)

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Acemace86

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Cyborg is a soy larper? Explain
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IgnoredByMods

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Not cyborg4life. The admin Axel runs the server. Dude muted people for saying "maxxing" as a joke. Whole thing was cringe, he isn't even doing LL (and never did). Cyborg4Life is legit but other people run his server.
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challengeaccepted

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was the initial consultation in person or online?
how long did it take to book the surgery date after the initial consultation?

best of luck
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IgnoredByMods

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The consultation was in-person. It took 2 months from consultation to the surgery. However, that’s also because I had personal commitments.
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IgnoredByMods

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Update: 30/01/2024

The thoughts of a pre-surgery LL patient


Went to the hospital and I am now waiting for the surgery. What can I say?

I keep asking myself: Wtf have I got myself into?

Is this really happening?

What have I done?

Then I remember why I got LL and that’s what’s keeping me going. I’m scared of the pain that’ll come and the risk of complications, but you just have to face them head-on.

I trust that the Paley Institute (the best place in the world for LL in my opinion) will look after me well. I picked the best place so I have full trust in them. I trust that they’ll help me get back to my pre-surgery form in due course. Sure, I don’t expect to go into pro-sports. As long as I can walk, run, and live my life normally I’ll be happy.

This whole thing right now feels surreal as it’s what I’ve worked towards for the past couple of years. Now I have to overcome this hurdle as I’m sure that reaching 180-183 will be a game changer to me.

I plan on updating this diary if everything went well and I’m in good health. Feel free to send messages asking for follow-ups if you’re curious or have questions.

Long Torso is out for now ✌️
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IgnoredByMods

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Update: Surgery went well and I feel no pain, no nausea, nothing.

I will be posting further updates on the Limb Lengthening Community: https://-/D34DkWHwc4

Good luck people
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lucindaris

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So you did in Poland with PRCECICE or LON? As far as I remember the price was between 250k-300k PLN which makes it 64k Euro in the middle or did it change? There was one person who provided package and price before.
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IgnoredByMods

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My nails are PRECISE 2.2 and are the biggest nails according to the surgeon. I can’t remember but if I recall correctly, the 12.5 diameter with the biggest length has a load of up to 60kg if I remember correctly (will need to double check this though).

Yeah the prices are a lot higher. 65400 USD for surgery + physiotherapy. When you consider accommodation, carer, food, supplements, shuttle, the true cost is closer to 80k USD. Prices are increasing in February apparently.
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IgnoredByMods

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Making a post-surgery update + rant (02/02/2024).

The Paley Institute itself is amazing, I have zero concerns with them. The surgery went better than expected as I hardly bled (around 5-10x less than average).

In terms of physiotherapy, it has been amazing. The machines really do help and the physiotherapist is really helpful and goes the extra mile to help.

Now, for clarification my concerns that you’ll see next are about a select few bad hospital staff. Most were amazing, but I’ve had 3 extremely bad experiences in my 3-day stay.

For those who don’t know, you don’t stay at the Paley Institute during your hospitalisation (in Europe anyway). You stay at the MediCare Hospital which is their partner hospital.

My first bad interaction was when the anaesthesiologist came into the room to remove the epidural pain killers. The way he took it off felt like he was waxing my back (and as I had a needle attached to my spine, let’s just say that I still have back pain from it). It should go away in a few days hopefully, will update you all on this matter.

The second somewhat unpleasant experience was removing the catheter. I don’t think the nurse did a bad job, but she kind of yanked it and it caused some bleeding. Apparently this is normal, I’m no catheter expert. Thought I’d mention it regardless, just felt like it could’ve been a lot gentler and smoother.

I’ve had some really awesome nurses who went the extra mile. As I want to keep updates brief, I’ll mention the negatives.

One of the really cool nurses who made a big difference mentioned that my IV was too big which causes a bit of unnecessary pain. I don’t think this is a surgeon issue, but more an issue with whoever made the decision to put a huge IV when a smaller one would’ve done the same job with less pain. Something minor but I thought that I’d highlight issues that even nurses brought up.

And the final bad experience was with a nurse who was injecting painkillers in the most painful way (ironic). For the first time ever, the liquid splashed everywhere. It felt like she was pressure washing my veins. Really bad and extremely painful experience, felt like I would’ve been treated better by a zoo. Later I was able to wash myself with the IV on. Now the catch is that the nurses were just sitting there waiting for me to clean myself with only 1 hand (using the hand with the IV is painful). I was given zero help despite only being able to use 1 hand. When the surgeon came in, they started to pretend like they were doing work and started helping. This help was momentarily, as soon as the surgeon left they basically said “Yeah good luck cleaning yourself, call us when you’re done”.

This then died down once he left, and they basically said “Yh so wash yourself, good luck, call us when you’re done”. On the first day the other set of nurses really helped me with cleaning, so this mediocre half-arsed “help” was disappointing.

I had some really positive experiences with nurses too. However, I thought I’d bring these up as I’m sure that Paley does read this diaries. Awesome surgeons and physiotherapists. A good half of the nurses at the hospital were amazing too. However the bad experiences were bad enough that they caused pain and as per the most recent one had nurses who were trying to cut corners which increased pain.

As always, I am posting disc (d) updates here with pictures: https://-/P7eyY47C
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IgnoredByMods

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For some reason d1sc0rd is censored lol.
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lucindaris

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Dont you think that it would be better to go with Becker in Germany? It's even cheaper than in Poland and quality and outcomes are better known here.
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IgnoredByMods

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I decided to make this update (04/02/2024) because my previous posts were mostly complaints. I now want to show people my recovery and my experiences. Just because I only mentioned the bad stuff doesn’t mean that it was all bad. I decided to include the negative angles; however; I will do them some justice by posting the good parts too.

My surgery itself was better than average according to the surgeons. Usually you bleed a lot (500mL from each femur, so 1L in total) which at times requires a blood transplant. I bled hardly anything. Less than 50mL. The skill of the surgeons really shined here. It’s as close as it gets to a perfect surgery. The incisions are very small and not visible at all too.

I have been discharged from the hospital. The trip was pretty rough as I had the cannula taken off so I was in a bit of pain. My carer helped me a lot around the apartment and I was very comfortable.

I’ve been taking a lot of supplements and healthy food. It all tastes crap, but the nutrition that I am getting is superb. I get the food delivered to my apartment. It’s fresh and very healthy.

I seem to get a fever and inflammation when I do exercises. This became apparent when I had a really high fever and was in excruciating pain. The opioids that the Paley Institute made no difference. This was probably because fevers increase your pain sensitivity and the swelling puts more pressure on your broken bones.

I had a high fever at midnight and called the Paley Institute. After explaining that I didn’t feel well, the doctor asked to see pictures of my leg. Once he saw them, he sent someone from the Institute to my apartment at 1am (literally less than an hour of me calling, I had someone coming to my apartment) to deliver the medication. My fever dropped immediately and I slept really well and the pain was gone. The patient care at Paley is truly exceptional, they went the extra mile at 1am to my own apartment, it was really awesome.

While I was at the hospital, I had a physiotherapy session (you have one daily). Everything went well, but I wasn’t able to get into the wheelchair yet as I was weak and not very flexible. They left a machine with me to improve my leg mobility by bending it. Unfortunately the nurses at the hospital didn’t set it up properly and because of that it was hurting my legs. I messaged the patient manager at the Paley Institute, and they sent the physiotherapist after the institute was closed (he had normal clothes on, clearly left work). He was awesome, he helped me stretching and encouraged me to get to the wheelchair. After some stretches I was able to get onto the wheelchair with his help. I’m really thankful, not only he helped boost my recovery and speed it up, but they did this when they had no obligation to do so. I also didn’t bring spare clothes so they gave me some breathable shorts from the Institute. They’re so comfortable and I’m using them to reduce the buildup of bacteria, reducing the risk of infections.

My patient manager is incredibly useful. She called the care company as they didn’t speak English and she helped me get the carer arranged as I needed one to get discharged. She replies incredibly quickly and checks up on me often. She gets things done very quickly too and she’s a really nice person too.

I did my surgery this week and I am now able to walk with a walker without any help. I can bend my leg at least 45 degrees independently (70-80 degrees with help from a machine) and can lift my legs without any issues. My ROM is excellent too, very close to pre-surgery despite me having done the surgery earlier this week.

I would argue that I am recovering a lot faster than your average limb lengthening forum user. I’d attribute this to the fantastic team at the Paley Institute.

My bad experiences were with the hospital. I am yet to have any bad experiences with the Paley Institute itself. I am recovering very quickly and they go the extra mile to make sure you’re healthy. You really get what you pay for. Better physio, better machines, less patients so they can give you more attention, and really rapid support.

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IgnoredByMods

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Dont you think that it would be better to go with Becker in Germany? It's even cheaper than in Poland and quality and outcomes are better known here.

I don’t think so. The quality in Germany is debatable. See my latest update. The quality is really awesome. Unfortunately there aren’t many patients so as you correctly said the outcomes are unknown. Hence why I’ve made this diary. The physio is definitely superior, and I personally trust surgeons who were trained by Paley more.
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TheDream

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Torso how do you handle the apartment and food? Is the apartment connected to the Paley Institute in any way or is it just a private apartment you rent and then you order delivery food?
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IgnoredByMods

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Torso how do you handle the apartment and food? Is the apartment connected to the Paley Institute in any way or is it just a private apartment you rent and then you order delivery food?

Paley has some apartments available but I personally found them really bad. One of them had a double bed and a normal bathroom (bath tub). The second had an appropriate disabled bathroom but it didn’t have a bed (?), only a sofa bed. I thought both options were moronic so I booked an apartment which has a big comfortable double bed, kitchen, and handles on the toilet seat + seat in the wet room.

In terms of the food, I didn’t want to cook and didn’t want to eat unhealthy. I found this healthy food delivery service which delivers it to my apartment daily. The food is fresh, healthy, and nutritious. Sadly it doesn’t take that good but that’s with all healthy foods, the low sodium and low sugars are felt especially if you’re used to eating unhealthy foods like kebabs, fast food, etc.
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godvzzz

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How do I access your updated address https://.gg/P7eyY47C
wish you recover soon
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Robert Adam

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Why do you lengthen 8 cm on the femur and not 2x4 cm on the tibia/femur?

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IgnoredByMods

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How do I access your updated address https://.gg/P7eyY47C
wish you recover soon

The link is 𝕙𝕥𝕥𝕡𝕤://𝕕𝕚𝕤𝕔𝕠𝕣𝕕.𝕘𝕘/ℙ𝟟𝕖𝕪𝕐𝟜𝟟ℂ

Replace it with normal characters.
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IgnoredByMods

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Why do you lengthen 8 cm on the femur and not 2x4 cm on the tibia/femur?

It's faster and arguably safer than quadrilateral. I get the maximum gain with femurs, and if I want to do it again I can get 4-5cm with tibias.
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Hldrive

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You have crazy sitting height. Definitely short legs.

How is your tibia/femur ratio like? If it's normal ratio, won't lengthening somewhat short legs 8 cm make leg proportions look weird?
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IgnoredByMods

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You have crazy sitting height. Definitely short legs.

How is your tibia/femur ratio like? If it's normal ratio, won't lengthening somewhat short legs 8 cm make leg proportions look weird?

Yeah my sitting height is pretty wild. My wingspan is like 6ft.

My tibia/femur ratio is 0.79-0.8 or something, post surgery I’ll have a 0.72-73 ratio or something. I feel like people really overthink proportions. The only people who will notice are LL Forum users who are trained to pick these things up. Also, I’d rather look slightly off and get 8cm of height. It’s all a trade off.
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IgnoredByMods

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Update 05/02/2024

Readmitted to hospital: medical emergency: Pulmonary Embolism

Admitted to hospital due to Pulmonary Embolism. Will be watched and have blood tests. I was able to get rid of the most dangerous blood clots (and hence stabilising the condition) because I calculated a new blood thinner dose from their medication to get rid of it (with a little help of clinical research papers). I’m not very worried as I feel like my condition has stabilised due to being a medical geek  ;D

The negatives:

Pulmonary Embolism

Yesterday I coughed really big chunks of blood with clots that were approximately 1 inch long. Posted pictures in the server.

I used my background in STEM to calculate a dosage for my blood thinners that would dissolve most of the clots.

Today I saw the Paley Institute surgeon and they did tests on me on oxygen saturation and blood pressure to determine if I had a pulmonary embolism. They also did some physical exams.

I was then sent to the MediCare Hospital to do an angiogram. When I arrived, the nurses were quite dismissive of me having broken legs. There were 2 nurses: a nurse which was around 60 year old who gave me tough soviet lady vibes, and a younger nurse who spoke a few words of English.

My carer told them that I had a surgery and my legs were fragile. While I was transferring myself from the wheelchair to the angiogram machine, the old nurse seemed to be annoyed and picked me up BY MY FEMURS. The other nurse picked me up with the other leg but not quite the femurs. They ignored my groans of pain and just slammed me on the angiogram machine. After I had the iodine marker put in my veins and the imaging was completed, the nurses picked me up by my legs (the older by my femurs) and roughly put me in the wheelchair. Needless to say, I despite going to that hospital now. If they treat private patients like that, I can’t imagine how people are treated in public hospitals.

My legs were hurting for the rest of the day and I had to take some oral opioids to reduce the pain. However, I still have some pain as this old woman thought it was a good idea to pick me up by my broken femurs when she was told that I had a surgery on them. Very dismissive, felt so rush and an inconvenience.

Update: As I write this, I get a call saying that the surgeon wants me to be supervised at the hospital due to my blood clots.

The positives

My walking has improved. The physiotherapist is fantastic and has given me exercises to improve my flexibility. This has allowed me to take consistent steps without stopping. I am also walking a lot safer as I changed walker positions which allows me to put more weight on my upper body.
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lucindaris

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There are many good outcomes and positivie diaries + german hospitals are much better than Polish ones especially if you paid higher price for what you could get in Germany but anyway good luck with your recover and keep us posted!
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TheDream

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Sorry to hear that Torso, hope you are feeling better.

Any idea on what could cause the pulmonary embolism?

I thought that was mostly a risk right after surgery but not weeks later.
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IgnoredByMods

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Sorry to hear that Torso, hope you are feeling better.

Any idea on what could cause the pulmonary embolism?

I thought that was mostly a risk right after surgery but not weeks later.

I am now in the Cardiovascular Intensive Care Unit. It’s good that the Paley Institute Europe and acted fast and put me in the ICU to prevent further damage (my oxygen saturation was quite low, like 95-96%).

Initially I thought it was a clot embolism because of me coughing blood and large clots.

The angiogram indicates that it’s a fat embolism. These usually happen when fat is released from your femur during nail insertion. I guess I was unlucky.

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IgnoredByMods

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There are many good outcomes and positivie diaries + german hospitals are much better than Polish ones especially if you paid higher price for what you could get in Germany but anyway good luck with your recover and keep us posted!

I am seriously considering suing this hospital.

I got admitted to ICU, needed to change beds, and their idea was to have 4 people grab me with a blanket and transfer beds. The issue with that is by lifting the blanket near my legs, they basically lifted my legs very quickly. I started screaming in pain and told them to stop and I’d do it myself.

Second time in a day now, first grabbing me by the femurs, and second by lifting my legs with the blanket very quickly. If you’re a LL patient, you know that it needs to be done slowly otherwise it hurts like hell, especially in the first weeks.
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IgnoredByMods

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Update 06/02/2024

Surgeon came to check up on me first thing in the morning. Seems like I’m fine (100% blood saturation). Much better than yesterday, the oxygen therapy was a good shout.

I will start lengthening after I leave the ICU.

Some people messaged me asking about whether I’d do it again.

I feel like complications can happen to anyone. What matters is the surgeons being decisive and taking action immediately so said complications don’t cause damage. In that regard, I feel really safe with Dr Michal and Dr Tomasz. Every time something comes up, they help me rapidly. The physiotherapists also do an amazing job.

The only issues I have are with their partner hospital which don’t really have Paley staff. Some staff in the MediCare hospital don’t seem to know how to handle someone with broken legs. This leads to a lot of pain. I dont think most of them are malicious. However, it happens often enough that I really dislike this hospital.

Essentially, I am really happy with the Paley Europe staff and not with the MediCare hospital staff. I’ve never been hurt by a Paley staff. I would definitely do it again. This complication can happen with any surgeon, but not every surgeon would’ve acted fast enough.

I had a complication which can happen to anyone. What matters is that the team is focused on safety so if any arise you’re treated immediately.

I will send an email to Dr Paley showing my concerns about their partner hospital. It seems like their partner hospital needs some training on orthopaedics as they’re pretty rough at times. Again, this is not every staff, I’ve had some really caring nurses here.

TL;DR; I am well and will leave the ICU after final safety checks are made. I’m here to prevent any lung related problems. I wasn’t admitted for lung damage, but because I was displaying low oxygen saturation so the surgeons acted fast to prevent damage by monitoring me and putting me me on oxygen therapy. Thanks to the surgeons, they’ve been amazing thus far.
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IgnoredByMods

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Just spoke to a Cardiologist.

Turns out I don’t have 1 big fat embolism in my lungs.

The cardiologist said that I had a really rare case. In his words, 50-70% of my lungs are covered in very small fat embolisms. This is very rare apparently, it’s as if one big fat embolism split itself into small pieces and filled my lungs with it.

My condition is very stable but I’m pretty scared right now  :'(

Hopefully it clears up. I will be transferred to the cardiology ward and stay there for a few days. Right now we’re waiting for my lymphocytes to do their job and metabolise all the fat in my lungs.

Will keep you all updated.
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rodrick10

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Thanks for the courage of documenting everything despite your current condition... hope you get well soon :)
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Hldrive

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I am seriously considering suing this hospital.
You won't win a lawsuit like this in Poland, unless they actually fk you up
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IgnoredByMods

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Seems like a bunch of people were calling Dr Paley as they got worried.

People, I am fine. I’ve never been at risk of any damage at any point.

I made this journal as I thought my complications were cool (don’t really see them often) so I wanted to discuss them with members including the science behind it.

Unfortunately people overreact so I don’t plan on updating this diary anymore.
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