Sorry to hear of your complications @Longtors. Wishing you a smooth ride ahead from here. Out of interest, did the FE happen 6days after surgery? Typically such a complication happens close to the surgery right with the highest FR risk being during surgery then quite high the days immediately following (and the risk of FE/ PE drops off significantly after 2 weeks post op)?
Did LongTorso survive the pulmonary embolism? He hasn't replied on here in over a month. Praying he is okay.
Hi LongTorso, Hope you are feeling better now!
Update 18/03/2024
TL;DR I have severe nerve pain and total loss of sensation in my right leg despite taking the maximum dosage of a nerve painkiller (pregabalin (600mg)).
On Thursday March 7, I felt an electrical shock sensation in my right leg during a physiotherapy session. By the next day, I lost complete sensation of my right leg in the lower third of the right, affecting the ankle and Achilles tendon. I was advised to stop lengthening on Saturday March 9, but this missed the root cause of the nerve problems.
On Saturday March 9, the loss of sensation expanded to include the middle third of my shinbone and the right side of my knee. If you look at a dermatome map, you can see that this correlates with the L4 nerve region. This is pretty interesting given that in February I complained of back pain in the L3-L5 regions after removing my epidural.
Symptoms over the following days (Sunday 10th March to Wednesday 13th March) worsened:
- An S-shape numbness across the lower leg,
- Nerve pain which feels like someone is trying to rip my skin off with their nails,
- A sensation of overheated nerves, which I theorise might be the brain's response to the lack of sensation, attempting to 'turn up' the nerve signal (electricity) which generates heat,
- A strange sensation similar to strong winds against my skin.
On Wednesday 13th March, the pain was so unbearable so I went to seek help at the clinic at 4pm (1 hour before closing). Despite taking the maximum dosage of nerve painkillers I was in agonising pain. The doctors were gone but there was a really kind physiotherapist who gave a nerve massage. The massage provided the intensity of the symptoms temporarily but it did not alleviate my symptoms entirely.
On Thursday 14th March, I contacted the doctors and was told that there is little that can be done and they will get an external anaesthesiologist to see me on Friday 15th March.
On Friday 15th March, the anaesthesiologist used an ultrasound to locate my femoral artery. Once he did this, he followed it to find my saphenous nerve. His idea was that he will do a nerve block, and if my symptoms go away because of the block in that region, then it is likely that the nerve problems came from that region.
The procedure was extremely painful and left a bruise. The way it works is, they grab a needle which is about 5cm, they stuck it inside my leg very quickly (this avoids the needle tilting), and then they were rotating the needle inside my leg for a few minutes (extremely painful, it felt like my nerve was being scratched). After this, they injected lidocaine and the neuropathic symptoms were gone. This gave us the final diagnosis: adductor canal syndrome.
I spoke to some Paley US patients and apparently this syndrome is common in the US clinic. According to a Paley Europe physiotherapist, there was another LL patient who had similar symptoms to me. I was disappointed that the lead clinic (Paley US) does not make it clear that complications are a lot more common than they advertise. It gives patients misinformed expectations as the Paley brand has created this perception that everything will be fine but me and other patients have experienced so many complications. More transparency is needed with the entire Paley brand, especially in the US clinic.
I was offered to get an extremely painful nerve long-lasting block (which will not regain my sensation) or I could do a surgery which regains my sensitivity in days. Every rational person would rather have a comfortable surgery which restores your sensation instead of a "bandage" procedure where your nerves are scratched (unsure if it was actually scratched or if it's the feeling) to decrease the nerve sensitivity and then a long-lasting nerve block which doesn't restore sensation to your leg.
During the weekend (Saturday 16th March and Sunday 17th March) I informed the surgeons that despite the nerve block procedure my nerve symptoms were returning as the block wore off. On Sunday 17th March I requested to see a doctor the next day to discuss the possibility of doing the surgery to restore my nerve as I couldn't take this anymore.
On Monday 18th March I spoke to the surgeon saying I wanted to do the surgery and that was it really. After that I was told by the Limb Lengthening Coordinator at the Paley Europe clinic that the surgery wouldn't be scheduled until I received the price estimate.
Then I receive it: 6980 euros for a simple 20-30 minute surgery (open leg, move muscle so it doesn't pinch the nerve, stitch leg) and a 1-day hospital stay in a Polish hospital.
I shared this cost with other LL patients in Paley Europe and they sent me costs of nerve decompression surgeries in Poland. The cost is around 1000-4000 zloty which is less than 1000 USD (around 800 euros). I'm not sure if this is the normal pricing or if I'm being taken advantage of due to the pain and honestly it doesn't matter. I will check the price of the private hospital next to me, and if it's 10x cheaper I will do it with them instead.
If it's indeed 5-10x cheaper for a surgery in the same private hospital, I will be really shocked. This paragraph is a bit of a rant as I think the cost is excessive for Poland given what other private hospitals nearby with top surgeons charge. It's not about the money, but about the principle. If there is an equally safe surgery which is 10x cheaper at the same hospital, the cost strategy of Paley Europe seems really uncompetitive for complications. This surgery is extremely simple, low-risk, and takes less than 30 minutes. I am only staying in hospital for 1-day so why am I being quoted 7500 USD when I've seen a nerve decompression surgery (for the elbow, but still) costing 500 USD nearby?
My discussions with another limb lengthening patient from Paley Europe revealed similar shock at the quote I received. We thought that the surgery would be 2,000 USD (Paley premium) as the local costs are 500-1000 USD. We had both anticipated a "Paley premium" but not to the extent of a 5-10x multiplier over local rates. If it's really that much cheaper, I recommend that future Paley patients with complications get the surgeries in nearby private hospitals as all clinics overcharge a lot.
Now, as of today, I've had an agonising nerve block procedure and non-stop nerve pain for the past 10 days. I just want this agony to end.
Update 18/03/2024 (Psychologist Appointment)
TL;DR This is a really personal post where I share my thoughts about my journey. I shared them with the Paley Europe psychologist and I thought I'd share how I am here as people have been requesting for updates. I feel lonely. I feel scared. I feel that I am not in control.
Today I spoke with a psychologist from the Paley Europe clinic. She understood my English but struggled to speak English so we used Google Translate to communicate. Would be nice if we had an interpreter.
Last week I dislocated my left knee and tore my ligaments on my left leg as I fell. It was traumatising and I felt so vulnerable. I called the Limb Lengthening Coordinator and didn't get a reply. I called the doctor and he didn't pick up (understandable, he was busy with another patient). I called the shuttle driver and didn't get an answer (I understand, he left his phone in the car).
Now imagine me, a guy who is barely in his 20s, laying in wet concrete floor screaming in pain from the top of my lungs because I had a dislocated left knee. I partially tore my patella ligament and my MCL. My lower leg was perpendicular to my upper leg, that's how bad it was.
I called everyone I knew but no one picked up, I felt so vulnerable and just felt like breaking down crying. Then, I decided to call the CEO of Paley Europe. He has been extremely kind to me since I had the embolism. He paid me a visit in hospital and I really appreciate his help. He was able to get me the shuttle when my knee was dislocated.
I had an x-ray done and then an ultrasound to see if my ligaments were fine. They weren't. I tore my MCL and patella ligament partially. Thankfully my meniscus was fine.
I am now ok and I regained my ROM on my left leg.
However, today during my appointment with the psychologist I poured my heart out. And I'm sharing it with you.
I feel lonely here. All my family and friends are in another country. If something happens to me, I am relying fully on the Paley Europe clinic.
And who was the only person I could rely on a Monday morning with a dislocated knee while crying and screaming from pain on the floor? The CEO. This makes me feel so vulnerable... what happens to me if I have an emergency on a weekend?
During the weekends, the clinic is closed and everyone takes hours to answer (or sometimes they only reply on Monday). Understandable, they have a life and family. However, I feel so vulnerable because I feel like if I have an emergency, I cannot get immediate help. The emergency services here hang up on me before as they didn't speak English. Anyone including the LL coordinator who is the person who's supposed to help you with issues take ages to reply during times of need.
During my conversation with the Paley Europe Psychologist, I told her everything in this post.
I genuinely miss being in hospital. There I could press a button and someone would take care of me and speak to me for a bit. Now I am alone in my apartment, the only socialising I have is online with my friends and with gaming. But to me this isn't enough as I'm not used to this. I am not ashamed to admit that I cried about this in my room alone before. I toughened up since then I guess but deep down it still hurts.
During my conversation with the psychologist, I told her everything (everything in this post, read below for the next part).
I've had quite a few severe complications so far and I feel like I've lost control of my life.
- When my catheter was removed, I was peeing blood for 4 weeks because it was removed roughly.
- After my epidural was removed roughly, I've had spinal pain that has not gone away.
- I've had a really serious pulmonary embolism which made me cough huge clots of blood (3-5cm long). 50-70% of my lungs were covered in fat and I spent a week in an Intensive Care Unit to treat my condition. This specific embolism was rare so the doctor in charge of me (a cardiologist) was using research papers to find an effective treatment.
Let's pause for a second, now imagine this. You are alone in a foreign country. You feel lonely and vulnerable (read what I said above) and now you've got such a nasty embolism that someone's reading scientific journals to find a cure. Yes, I was terrified and I think I've just come to terms with it.
- I dislocated my knee and tore some ligaments. I couldn't get help from anyone but the CEO on a Monday morning when the clinic was open. What will happen to me if I have another emergency? What if that emergency is on the weekend? In my head, if I found it so hard to get help when I was screaming on the floor when the clinic was open, what will I do when it is closed?
- I have a nerve complication which gives me excruciating pain. I am in agony from this. I am now scared of moving my leg because if I make a wrong movement I'll have a bunch of painful symptoms.
This is what I told my psychologist and I thought I'd share it.
I feel lonely as I hardly get human interactions.
I feel like I am not in control anymore as something bad keeps happening.
I feel scared because I don't know what will happen to me if I have an emergency at night or at a weekend.
Quote from: GoodJuju on February 09, 2024, 07:21:17 PMSorry to hear of your complications @Longtors. Wishing you a smooth ride ahead from here. Out of interest, did the FE happen 6days after surgery? Typically such a complication happens close to the surgery right with the highest FR risk being during surgery then quite high the days immediately following (and the risk of FE/ PE drops off significantly after 2 weeks post op)?
Hey! Yes that is right. I had my embolism nearly a week post surgery.
Quote from: curiousprospectivepatient on March 12, 2024, 06:33:48 PMDid LongTorso survive the pulmonary embolism? He hasn't replied on here in over a month. Praying he is okay.
Thanks for checking up on me. I survived. I posted two updates sharing what complications I have now (nerve pain) and how I am currently feeling. Enjoy the reading!
Quote from: bruhh on February 07, 2024, 12:57:33 AMYikes...I think you're putting too much faith in the "Paley" marketing scheme, these are not normal complications and a pretty resounding rebuke of whatever this "Paley Institute" in Poland is considering this is the first case study done on this forum. I am not surprised by the lack of quality in the accommodations and partners considering he has essentially franchised his name to multiple countries outside the US (as well as 9 different locations in Florida) and continues to upcharge the price of every lengthening service. This has to be at least a 9 figure business endeavor for him now. Just to note that because he was first to introduce cosmetic lengthening to the West 40 years ago does not automatically make him or his associates the best. If I recall correctly, Paley himself doesn't even do most of the surgeries at his own clinic anymore due to age (and probably due to status). To anyone reading, consult multiple doctors and be skeptical of everything they say, because in the end this is a cosmetic procedure and they are going to tell you what you want to hear. Don't confuse quality care with experienced business tactics. As a LL vet, these are very scary complications. I hope you are able to make a steady recovery OP.
I made a steady recovery for the lungs I believe (haven't had a final scan to see if it fully cleared up though). I've had new problems since. Hope you enjoy the read!
Despite the two posts, I am really thankful for the support when it was time to receive it.
I was given steroids to help the pulmonary embolism go away.
I was given a custom knee orthosis to keep my knee straight when I dislocated it.
I was offered a back MRI but I'm too scared to do it because we don't know if active PRECISE nails inside a patient are safe. Nuvasive has not certified it so. I didn't want to risk it despite having chronic back pain in the area of the epidural.
Someone came off to drop aspirin and paracetamol when I had a fever at night on the first few days post-surgery. I was crying in pain as not even a couple tablets of tramadol could reduce the inflammation pain.
My nerve issues got identified within a week (however I feel like I had to push a bit to get things moving faster and to get a diagnosis). There was a non-invasive attempt which wasn't guaranteed to work, but at least we got a diagnosis. Now I've been offered a surgery to fix this.
When I get to the treatment, it is fantastic. I have no complaints about any of the treatments I received. Dr Michal and Dr Tomasz have solved them.
The physiotherapy is top class, I have reached full range of motion in my quads and other muscles. I am walking very well thanks to their support and encouragement to keep me pushing. I would argue that Paley Europe has PTs which are even better than the ones in the USA as they train for longer.
Exercise is what keeps me sane currently. I am trying to entertain myself with business work, exercise, and movies.
I don't doubt the ability of the clinic to find solutions to my problems and to solve them. However I find that sometimes it takes quite a while to reach the person you need. For example, recently I didn't receive my PT timetable so I sent a message to the PT coordinator on Sunday at around 5pm. I only got a response showing my PT timetable on Monday at 9:45am and it was from the Limb Lengthening Coordinator. From the time I received my PT, I had 2 hours to plan myself accordingly so that I replied to work emails, showered, had breakfast, did warm-up exercises for PT, and got dressed. This leaves little time for me to plan my day as things feel very last minute at time.
Deep down I know that I'm in good hands, they're all really qualified. But I'm still terrified of this whole process regardless. Something new is always coming up, and it takes a bit of persistence to get help. That, and me feeling like I have no social net here to fall back on.
The ForumAdmin has edited my diary, ignoring my request to provide a more accurate and representative of this diary.
For all readers, take this diary as partially fake, exaggerated, or fictional.
The moderators of this website have refused to allow me to provide proof of claims in my diary (making it more credible or high-quality). Thus, they prefer traffic to this diary over providing credible, high-quality diaries with medical images to this diary.
Due to the lack of cooperation, I decided that I will no longer update this diary until ForumAdmin allows me to provide an accurate, fact-checked diary.
To emphasise, this diary is partly exaggerated and in retrospect I wanted to fix it and provide proof, but the forum admins have refused to give this opportunity.
Assume this diary to be fully fictional, exaggerated, or downright fake as there is no evidence whatsoever (supported by the forum admins).
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