No motivation, constant pain, no future currently and I'm getting more and more depressed.

Posted , 5 users are following.

Hi,

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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7 Replies

  • Posted

    Hi Alex, you don't mention how much support your getting from your parents, it appears your going through this all by yourself? 

    What I think is needed is a letter detailing everything including all the delays and cancellations to the local NHS board or trust, it's unacceptable that you have to put up with incompetence, delays and misdiagnosis. You also need proper pain management.

    Point out that they have been no help at all so far, I've done it in the past with my GP and it does get things moving.

    Neil 

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    • Posted

      Hi Neil,

      Thank you for your comment.

      I should probally say. I'm an adult and 26 but you did extract the lack of parental support very well lol. I won't go into detail but my parents are very unique people and slightly incapable of showing emotional care. They are terrible at that sort of thing but it's easier to accept because other people (older sibblings, friends from youth, current girlfriend etc). We all have this same opinion so it doesn't bother me but regardless of the appearance of not caring. They do actually care in there own way, I just wouldn't use them for "support"....

      I do have the full support of my girlfriend, friends and even her family are with me on this however 

      it doesn't help for obvious reasons. Talk is talk and has zero effect on the pain.

      I fear that a long detailed letter would be read with a pinch of salt. It's because on my record I have chronic chest pain listed, such as worrier and hypercondriac etc recorded all over my notes. It's due to the pain as a child not being taken seriously until a private opperation found and resolved a hernia. But this is not documented very well on the British side as it was abroad anyhow.

      I keep going to the GP and they have refused to prescribe anything stronger than co-codamol. I've been back several times. I also tried online just now and got this responce,

      "Doctor Refused

      The doctor has refused treatment for your Pain Management consultation.

      The following reason was given for the refusal:

      Your past medical history is quite complex and you currently have numerous symptoms. I would advise that you make an appointment to see your GP to discuss your pain management and your other current symptoms."

      I totally agree with the opinion above. It is sensiable and smart but it means going back to the non helping service (NHS) and getting no where

      .

      I will likely write a letter as you suggested. I will have answers within three weeks now, however the daily agony, is hell.

      Just last night. I took the maximum dosage of co-codamol for 24 hours in 6 hours. It hurt all through the night so i didn't manage to sleep till 7am. I fell asleep from exhaution and then woke up now at around 3pm. The pain is there, just thankfully more managable. Today will be a good day and im working on the letter now!

      Thank you Neil.

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  • Posted

    Hey Alex

    Do you have Marfan Syndrome? They're chest also protudes out. It's called pectus.. I think it's what you said. Well, I hope you get better and your pain goes away or at calms down so you can feel better. I'm sorry you're in pain. I understand words are just words but I really mean it.🙌

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    • Posted

      Hi Ashley,

      Thank you for your kind words, it does mean a lot smile. I got really good new a few minutes ago and I'm over the moon as my consultant appointment has been moved from three weeks away and is now tommorow.

      I'm hoping for the answer and help I need.

      I really don't think I have Marfan Syndrome, certainly no diganosis but you are correct that there is a known link between pectus carinatum and Marfan so I did personally consider it as i show some signs. I'm tall (6.2" and I do have long fingers) and my chest deformity but that's it.... 

       

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    • Posted

      Hi Alex

      I'm glad👏you got great news. So now you must be there. smile Well, Good luck👍I hope they help you and you get better. I mentioned Marfan Syndrome because you won't exhibit all of the symptoms just some. But you say you only have two so now I don't know... 🤔

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  • Posted

    Hi Alex, how did you get on? Neil 
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