- About the Conditions
Tel: 0300 111 0004
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I am 53 years old - but a young version!! I have always been a very active person, the kind that never sits still and so this condition hit me hard.
My story goes like this.........about 5 years ago I started to enjoy gardening, gradually I found that after lifting and bending I would get terrific head pains. I ignored them thinking they were sinus headaches. Sometimes the pain was
so bad I would have to stop. In November 2001, I decided with the help of my family to transform my parent's garden in 48 hours. I had probably been watching too many Ground Force programmes! I lifted concrete slabs, planted shrubs and laid new lawn - the pains in my head were really bad but I don't give in to pain too easily! Then I suddenly lost the vision in my left eye for about 15 seconds, it scared me to bits and so I booked an appointment to see my GP.
Around this time my husband had been suffering for 2 years with atrial fibrillation due to a virus damaging his heart muscle and had undergone heart surgery in October 2001. When he was recovering he saw life in a different perspective and encouraged me to return to nursing, he knew this is what I wanted more than anything - we had been running a chauffeur/limousine business for the previous 12 years and I hated it! So I still thought I had nothing seriously wrong with me so I returned to nursing - I loved it. I cried with joy! I never thought I would be able to go back to nursing.
I was 6 weeks into my Return to Nursing Course when I was diagnosed with Chiari Malformation - I asked the neurosurgeon three times if it was OK to lift and to carry on nursing and three times he said yes. So I did. DISASTER!! I ended up with more symptoms than ever - loss of balance, head pains without lifting, pain on sneezing, coughing, laughing etc, pins and needles in my left side, eye floaters and feelings of fullness in the head. I had to stop nursing. I went through a bereavement experiencing anger, shock, disbelief, why me and then eventually got to the acceptance stage.
My consultant said a 10mm herniation was insignificant and told me my symptoms did not correlate to the scan and decided she didn't need to see me again. I researched this condition until I felt I could do a degree in Chiari Malformation!!! Eventually I found a fantastic surgeon called Dr Nelson at The Frenchay Hospital in Bristol who told me that I would be a good candidate for surgery. He didn't promise a 100% success rate but said I would have a 66% chance of success. My quality of life was becoming so poor that I decided that it was worth going for the operation. I paid £6,000 to go privately because I needed to be able to plan the date of the operation to fit in with our business. It was worth every penny! I had decompression surgery on 11th July 2003. I was back at work by September and felt really good by December.
I still have Chiari malformation and I know I still have limitations but I have my life back. I can walk for miles without feeling like my legs are made of lead, I have no spots in front of my eyes, no pins and needles in my hands or arms and I don't feel absolutely exhausted all the time. I do still get head pains if I do too much bending and lifting so avoid this as much as possible. Just two days after the operation my family said I looked 10 years younger because the pain lines had gone from my face.
I live in Ferndown, Dorset and if anyone needs to chat then I can be contacted on 01202 893979 or e mail on