HELP PLEASE!
Posted: Tue Jul 29, 2014 8:24 am
Hi, I am writing from Mokopane in South Africa and have been on the PN journey for the past 2.5 years. I had my coccyx removed and woke up in excruciating pain. I lost 18kg in 3 days and needless to say I have scant memory of that time. All I do remember is that I was unable to urinate for 2 days and had no relieve even after a catheter was inserted. I still struggle with a very sluggish bladder today. Obviously we all thought that it was post operative pain. I started looking for help about 6 months after the op because by then I still could not sit at all. I saw the orthopedic surgeon who referred me to my gynaecologist and there the drug induced journey started. I was given Lyrica, Arcoxia, Celebrex, Synaleve, Stillpain, Dicoflam, Artrexin, Mybulen etc. I underwent phisiotherapy, bought all sorts of cushions, got rid of all my jeans, tight fitting clothes etc. Still the pain got worse.
I eventually ended up at the then President of the Spinal Unit, Dr Necer, and he ordered a MRI scan. He then explained that there might be a nerve entrapped but nothing can be done since it might be that scar tissue is pressing on the nerve and by opening the old incision, more scar tissue will form.
Obviously I have seen numerous doctors and specialists. The diagnoses all varied between "ghost pain due to amputation" or it was my imagination playing tricks on me because I was in so much pain initially after the operation. I am a very strong person and had to deal with various weird illnesses and the death of a child, but this pain and situation got me to a point where I considered suicide, twice. After seeing a neurologist in March 2014 and being told that he is so sorry to hear about my story, and he knows that doing another MRI scan is a waste of money and time but at least he feels better because he told me to do something, I decided to take control of my body and life.
I started scanning the internet and eventually found a website for Prof Possover where my symptoms were described perfectly. I lost my job due to my inability to sit and the constant flare ups and is in the process of claiming disability from my insurance. I have submitted my claim in March and since then have been phoning my medical aid provider and even the Association for Surgeons of SA trying to find a doctor in South Africa with knowledge about this decease and who can help me. Obviously my insurance will not pay out until I can prove that the pain is really debilitating and it stands to reason that I would rather be pain free! Everyone with PNE will know that no amount of money will ever make up for even one "clean" day. BUT...after reading everything I can get my hands on about PNE, I am so scared to let any specialist touch me especially if he/she has no experience at all in this field. I went to a specialist with 30 years experience for a relatively simple procedure and ended up like this. Imagine what can happen if I let a doctor who has no experience work on me?
Does anyone know about a doctor in South Africa who will be able to help me?
Thanks!
Esme
I eventually ended up at the then President of the Spinal Unit, Dr Necer, and he ordered a MRI scan. He then explained that there might be a nerve entrapped but nothing can be done since it might be that scar tissue is pressing on the nerve and by opening the old incision, more scar tissue will form.
Obviously I have seen numerous doctors and specialists. The diagnoses all varied between "ghost pain due to amputation" or it was my imagination playing tricks on me because I was in so much pain initially after the operation. I am a very strong person and had to deal with various weird illnesses and the death of a child, but this pain and situation got me to a point where I considered suicide, twice. After seeing a neurologist in March 2014 and being told that he is so sorry to hear about my story, and he knows that doing another MRI scan is a waste of money and time but at least he feels better because he told me to do something, I decided to take control of my body and life.
I started scanning the internet and eventually found a website for Prof Possover where my symptoms were described perfectly. I lost my job due to my inability to sit and the constant flare ups and is in the process of claiming disability from my insurance. I have submitted my claim in March and since then have been phoning my medical aid provider and even the Association for Surgeons of SA trying to find a doctor in South Africa with knowledge about this decease and who can help me. Obviously my insurance will not pay out until I can prove that the pain is really debilitating and it stands to reason that I would rather be pain free! Everyone with PNE will know that no amount of money will ever make up for even one "clean" day. BUT...after reading everything I can get my hands on about PNE, I am so scared to let any specialist touch me especially if he/she has no experience at all in this field. I went to a specialist with 30 years experience for a relatively simple procedure and ended up like this. Imagine what can happen if I let a doctor who has no experience work on me?
Does anyone know about a doctor in South Africa who will be able to help me?
Thanks!
Esme