Name :   Inez

E-mail :

Adult:  48 years old

Location:  Preston Lancashire England

Area(s) affected:  7th & 8th ribs on left side

Personal History:

I first noticed my "funny" ribs at the age of 9 years when in summer I put on my swimming cozzy and looked in the mirror at myself.  It must have been at the age when we start to notice ours and other peoples bodies and I certainly noticed that my ribcage was deformed; it was concave on the left side and stuck out quite pointy at the bottom. (The growths that were close to my spine on both ribs had caused my ribs to buckle a bit like bicycle spokes.)
When I reached my teens in the 70s bikinis were all the rage.  This caused me to be self conscious about my body so I mostly wore loose clothing.  This problem was not helped by the fact that I was naturally thin and the affected bones stuck out noticeably.
Nevertheless I have always been very active.  I didn't have any pain or movement problems so life was "normal" up to a point.  I also have Asthma and Hypothyroidism and a very weak immune system.
Then at the age of 40 I started to get pain. It started at the growth site at first then and as the months and years went by it spread all over my left ribcage, creepy crawly electric sensations as well as deep pain in the bone. Movement started to be affected (twisting upper body) and sitting or lying for 20 minutes or more caused awful pain.
Sleeping was difficult as pain woke me every 2 hours or so through the night hence I was always tired and weary.
I must add that because of having Asthma since the age of 4 years, I have regularly been X rayed and the doctors always asked me what these thickened ribs were, I told them I didn't know. that was a regular question whenever I had examinations.
Anyway I finally went to my GP and told her of the pain, she said she would refer me to someone who would know about such things. I waited 18 months and got an appointment at my local hospital to see someone I've forgotten the name of. When I went into the examination room the Dr took one look at my upper body and said that all he could offer me was a breast enlargement!
I went back to my GP and asked for another referral then waited 2 years for an appointment at a hospital in another nearby town.
Again in the examination room the gentleman told me he was a heart surgeon and could do nothing for me.
Back to my GP again, another try, waited almost 2 years lost patience and threatened legal action over the phone to the GP receptionist. Surprise surprise 2 days later a phone call and an appointment to see a surgeon (Mr.  Millner) at Blackpool Victoria Hospital cardio thoracic dept.  Mr. Millner said that the only info he could find about the disease was on the net and that the only solution was to amputate.  It would be quote "a world first operation."
I had surgery on 24th May 2006, both ribs completely removed, surgeon said he had to use circular saw on bone growths because they were so hard.  I was told that the growths on my ribs were most likely to be melorheostosis during my first follow up visit with my cardio thoracic surgeon Mr. Millner,  approx Aug 2006.
Recovery has been HELL and is still very difficult nearly 2yrs later.
Immediately before surgery I had a diamorphine epidural placed in my upper spine and remained on it along with liquid morphine and assorted pills for 3 days.  On release they gave me a script for liquid morphine, tramadol and co codamol. This continued for 4 months or so until I decided to stop the morphine and tramadol and went onto codeine phosphate and paracetamol.
This was no good at all but I didn't want to go back to morphine so I went to the local hospital pain clinic.
The Dr I saw had never heard of the disease either and like other professionals I had spoken to had got his info from the internet. He told me to keep taking the codeine and paracetamol and prescribed pregabalin along with some new wound patches impregnated with lidocain to numb the wound surface area. This was no good either so he then gave me gabapentin and butrans patches (used for heroin addicts instead of methadone but without the high) they caused the most horrendous rash to appear under the patches and they were unbearably itchy so I stopped using them and am now back on codeine phosphate with paracetamol,lidocaine patches and gabapentin and still no relief from the awful pain.
My surgeon said that it looks like I've swapped one kind of pain for another; well this is worse in many ways.
I can't walk far without severe pain, all ok when I'm reclining but as soon as I move the pain starts slowly and gets worse.
I've also recently been given amitriptyline to help me sleep at night and provide some pain relief.  This works well for sleeping through the night.
It seems that the medical profession knows very little about what to do with me regarding my recovery and pain relief.
Nothing was suggested as an option to amputation and I feel a bit like a guinea pig.
I've been awarded DLA so getting about is easier but I need lots of help with household chores etc.
I am waiting for my next appointment at the pain clinic. Dr wants X-ray of my spine to check for spread of disease into spine because I get lots of backache and my spine is slightly curved to the left (scoliosis?).
There's lots more to say but I've put down the bones of it.
I do what I can and take each day as it comes.
Take care all of you out there with this nasty disease.
Best wishes, Inez



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