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.
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Topic: Paley Institute | Bilateral Femur Surgery | Dr Dr Deszczyński & Dr Albrewczyński (Read 15930 times)