leg surgery in Dr. Paley's USA
Ends at: 11 December 2021
I’ve always been a patient, a cripple who stands out in the crowd, and only later a girl, a woman, a human being worth talking to.
Ever since I knew that it could have been different, I have felt very badly. When Dr David Feldman from the Paley Institute in the USA first saw me, he only shook his head. He asked me, why
nobody helped me for so many years—why no one took this horrible pain away from me. Carelessness and medical errors - that’s how someone once called what has been done with my leg. Today, I can barely move; I feel pain every day. As if that wasn't enough, for years
I’ve been systematically losing my sight and the doctors remain helpless. If someday the darkness covers my life, at least I want to walk. I don’t want to spend the rest of my life lying in bed, listening the days go by...
I’ve been living with cerebral palsy for 36 years. I’ve undergone many surgeries, including the last one (‘indispensable’ according to the doctors) that I didn’t want and that ended up tragically for me. Since that moment, I’ve been living with a leg that is shorter by 2 centimetres. I wobble and limp, my hip hurts and my spine is slowly falling apart. I’m not old yet, but my joints and bones are practically destroyed.
My knees, spine, feet—everything has stopped functioning. The doctors have already given up a long time ago, and they don’t want to repair anything. But if no one decides to fix my legs, I’ll be doomed to suffering, which is slowly becoming overwhelming.
Doctor Feldman from Florida got to know all my health examinations, he read the documents and he gave me something that I’ve never ever received - he gave me hope...
The last surgery that I underwent in 2012 was unnecessary; it destroyed my leg. I have a hole in my patella that has to be filled as soon as possible because that’s the source of all the pain. The orthopaedist claimed that this was only a screw in my knee and I only had to get used to it. The surgery was supposed to help me, make my mobility easier, improve the aesthetic of my walk and relieve my joints. I was assured that there would be no problems, that my case was just one of many and that many similar surgeries ended up successful.
I agreed, hoping that it would be better. Unfortunately, the effect turned out to be counterproductive. The problems appeared from the beginning. Since the anaesthetic injection, through the type of plaster and metal in my legs, to the fusion of the bones after surgery, I have been a real Guinea pig.
Dr Feldman told me that the pain didn’t have to be a constant part of my life. He made me realise also that my joints and legs have to last the rest of my life.
For the first time in my life someone noticed that I have a future ahead of me that cannot be marked by such a suffering. Now, the most important thing is to obtain an equal length of my legs. The asymmetry with which I live is the reason of all my problems. My spine is the part of my body that suffers the most, and sooner or later it’ll give out. However, as it turned out, the spasticity of my body can be eliminated, and I could get up in the morning without any pain.
The doctor told me outright that in my case surgery was necessary.
It would allow me to walk better all by myself and without pain.
After consultation, I received a description of the planned treatment and a cost estimate. Unfortunately, the costs of the surgery are huge. This is my biggest issue.
Do I want this very badly? I dream of forgetting about the pain, so I could get into a tramway without suffering, bend down or crouch down. For 5 years, no doctor has offered me help, has done anything to relieve my pain. They keep prescribing me painkillers very willingly. My orthopaedist throws up his hands or says, “Agnieszka, do you know that I cannot sleep at night because of you? What do you want from me? Miss Ania, please prescribe Agnieszka whatever she needs. I’ll sign it. I did what I could. Agnieszka, you’re already an adult and I’m basically specialise in the treatment of CP in children...”
When I ask him: “So, why did you take my case in 2005?”
I already was 25 at that time! Then he stops talking, looks down and there’s an awkward silence. And that’s how I’ve been getting back home with a next prescription for painkillers for many years. I’ve been waking up in the morning and I’ve been feeling pain again. Thanks to a close friend, I’ve learned a story of a girl around my age. She was treated by the same orthopaedist and he also didn’t give her any hope. She was taken to the Doctor's Paley Institute. Today, she walks and she enjoys her life. That means that I also have a chance.
I decided to tell you my story because I’d like you to know the problems that I have to face,
why this surgery is so important to me and to let you get to know me. Please help me raise funds and let my dream come true! Share my story with others. I believe that this can work out and that someday I’ll have dreams other than living without pain.