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I'm from the UK and I have pectus carinatum. It's a rare chest deformity where the sternum protrudes outwards.
I first went to the doctors at around 13. I was told then that my chest was of a normal variant but I was being heavily bullied because my chest was different.
I found out I had pectus carinatum very quickly. I found out that I could have a compression brace or surgery. But every time I went to the stupid GP practice I was told that it's normal. Then after that came the pectus excavatum notes (which are the oppersit of my own condition) so yet again I lost faith.
I then start getting agonising pain. It crippled me and I started dropping out of all my after school activities. It was dreadful but the doctors told me it was growing pains and gave me ibruprofen which did not help.
Naturally when your whole life begins to fall apart and every day hurts you question the purpose of continuing. I became depressed, self harmed and attempted suicide.
Then later at 16 I finally got refered to the hospital. They told me had i of seen them when i was younger I could of had a brace. I was devastated but I walked out of the office in an ok state because I was aware of a solution that my parents had told me of.
They were prepared to fly my Syria for a private operation. This was ten years ago and the opperation only costed five thousand pounds.
My life changed after that because the Syrian doctors did my first ever CT scan. They found a huge hernia and carried out a surgical repair. They also made a slight improvement to my chest which was fantastic. It was not the full ravitch procedure like what would be carried out by specilists that treat pectus carinatum but atleast it was better. I was happy.
Now fast forward a decade. I'm getting the same pain again. Because of my pectus carinatum i have bad posture which causes back ache. I kept going back to the GP. They kept refusing to send me to hospital. Then finally they did but it was the wrong department. I remember crying infront of the doctor saying, i dont want pills, i want help.
They just didnt and do not care. I left that practice and moved to a far better GP practice. I've been bringing my gf along for support and to back me up because she sees everything. This has thankfully really helped. The new GP sent me to the hospital and after 2 cancellations I had my CT scan. I'm now waiting for a consultation with the doctor but that has been cancelled twice.
The actual doctor sent a letter to my GP saying he wasn't sure how i had a hernia repair due to the location of the scars. The same doctor said verbally pectus excavatum (which i do not have). It is all insane!
I can't endure pain forever and as Julias Ceasar said. "It's easier to find a man who will volunteer to die than to find a man who will endure pain with patience".
Now I really do not want to die. I'm not planning on it just yet but seriously. Are the NHS going to fail me again? The policy with pectus carinatum is to not routinely operate but I'm convinced it is the reason for my pain. Regardless on if I have a reoccuring hernia which is my belief, I do know it is directly below my chest deformity. It's not weird to link the two and say, my skeleton abdomality is the cause of the weakness leading to these problems.
I just wish I had stronger pain killers to get through the day. I took as much as I could without going above the safe dosage of co-codamol but it's weak as. The GP practice will not prescribe anything stronger without the results of the CT scan which have now been pushed another month.
I'm going to hang on but i'm terrified by the very real posability that I will not get the help I need. It's made worst by the fact I thought I was pass this hellish journey but to relive it with the same dificulty is to much.
I am prescribed anti depressants. I find it keeps me more stable under the circumstances but still I can not live like this. The operation privately "ravitch procedure" would be up to 25k and I'm currently unemployed with a empty bank balance so there is no way I can afford it.
I thought about trying to take out loans but I don't have that ability for that much. I've even asked my parents if they would lend the money but they are not in that position. I'm literally screwed without the NHS and they have been of no help so far.
With so much constant pain and easy triggers. Hugging my girlfriend, breathing heavy, sitting in a certain position, sitting up (when my ab muscles tence). Then backache because I can't stand stright it zaps my motivation. I do nothing because i do not want to be in pain.
So I just need to be free of this agonising pain from my chest and I want to live but what hope do I have when my experience says I will fail with the NHS.
I'm am staying strong now as it's only a few more weeks but what IF they do what they have done before and turn me away? If it's not a hernia this time then it's just because I have pectus carinatum which means as the NHS policy goes, we do not operate and I have no solution and my future dreams are dead.
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