A woman who attended Northwick Park Hospital’s Emergency Department more than 30 times in two months has thanked the surgeon who changed her life.
Deanna Jones from Bushey in Hertfordshire was born with Ehlers-Danlos Syndromes (EDS), a group of rare genetic conditions that affects connective tissue.
Deanna’s condition is so bad that she often dislocates her finger while writing and regularly dislocates her hips, ribs, ankles, elbows and shoulders. At the age of 16 Deanna had to undergo a knee replacement.
The 21-year-old said: “My jaw was the worst area affected. I would be eating, drinking, coughing or yawning and my jaw would suddenly dislocate and spasm causing it to stay shut. It was incredibly painful and every time it happened I had to go to the Emergency Department. At one point it was happening every 36 hours.
“It was frustrating because I couldn’t explain to people what the problem was – I couldn’t open my mouth. I would be given drugs to relax the muscles and then the doctors had to pry my jaw open.”
In November 2016, Deanna was referred to Consultant Maxillofacial and Oral Surgeon Mr Manolis Heliotis after undergoing a variety of other treatments which failed to help.
Mr Heliotis said: “When I first saw Deanna she was very depressed and I can understand why. She was unable to eat or drink properly and the constant dislocation of her jaw was stopping her from living her life to the full.
“Unfortunately there is no recognised treatment for Deanna’s condition. It was a very rare and complex case - I will probably see one or two cases like this every five years.”
Deanna underwent a 90-minute operation in January to remove a small part of the temporomandibular joint (the joint connecting the jawbone to the skull). Deanna was the first person Mr Heliotis knows of to undergo this type of procedure to treat her condition.
Mr Heliotis added: “We made a small cut in front of the ear and opened the joint. We then removed 7mm of the joint allowing Deanna to open and close her mouth as normal without the risk of it dislocating.
“We knew the procedure would be a risk, but I am astounded at the outcome.”
Deanna said: “The operation has completely changed my life. I have had no jaw dislocations, no pain and I have not attended the Emergency Department since. I can’t believe what they have achieved.
“The doctors and nurses took a real risk on me when they did the operation and they have changed the way I live. I can now plan to do things and look forward to the future. I am very grateful to Mr Heliotis and his team.”
Deanna, who used to work as a Healthcare Assistant in Watford, is now hoping to find a job within medicine, possibly as a 999 dispatcher.
She said: “I have seen what bad care looks like and I have seen what good cares looks like. I am very grateful for the care I have received and I want to use my experience to be able to help others.”