Just had MRI results after 15th Pilonidal sinus surgery and it's still there.

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Hi to everyone.  I have just had the results back from my last MRI what was for the 15th operation on my sinus, and it's stil there. 

I have had the sinus for the last 7 years and I just wanted to ask if it's normal to have this many operations and to still be "fobbed off" when I go to see the hospital. My surgeoen didn't even turn up to my last outpatients appointment and the junior doctor that was there didn't even have a clue about my condition, he even thought that it was my first surgery.  

I'm not a medical expert but surely if the previous operations didn't work they should consider a different option as it obviously wasn't successful. The surgeries have left me with nerve damage as well as numerous other conditions that have stemmed from this and have ruined my life since and for the forseeable future. 

I'm sorry if it sounds long winded but is there anything I can do to make the hospital take me seriously? I don't know how much more I can take and all I want is to be spoke to by someone that actually cares about my condition and wants to make it better, not just get the surgery over with so they can get onto the next patient.

Any help would be amazing as I am at a dead end and I just don't know what to do apart from just end it all the easy way..

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  • Posted

    Hi. I'm really sorry and sad to hear how many operations you have had and had to go through tall the pain and agony. I have had 6 operations on that one area but also a couple on my thighs from abscesses. I'm waiting on a MRI scan and a skin graft now as my skin is so thin. I have just been discharged from the doctors today so see how long it takes until it comes back . ( won't be long) I've suffered for 17 years with it sad .

    I wish I could offer you advice but I feel the exact way with my consultant also. It's very frustrating , I do hope however they sort you out. Good luck xx

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  • Posted

    have you thought about asking for a referral to another consultant/hospital?
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  • Posted

    I have thought about trying a different hospital but as I am on benefits and don't drive it will be a bit of a pain organising it all, especially as I find it extremely uncomfortable sitting down on that area for any period of time. 

    As for changing consultant, they usually get either frustrated or bored so I should imagine I will be changing them in the near future. wink

    Many thanks for the replies, it's good to know i'm not alone in this battle to get my mobility back.

    Talking of mobility, how has it affected everyone else and their moving around?  I'm only asking as after this many operations I have severe pain in the whole area, especially around the actual openings, and walking any distances leaves me in a right state.

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    • Posted

      I'm the same about sitting down. I normally lie on the side or when I'm sitting I tend to weight bare. 

      I have been off work this time for 24 weeks and with my statuary sick pay about to run out it will go on the ESA benefit but no good for me as I'm married as I can't claim a penny as basically all takes back off me. It's really not fair. We're struggling financially and I have decided  to hand my notice in at work and go back to being self employed like I use to be then I don't have to answer to anyone about when I have to go back to work as at the moment they won't allow me with a open wound , and with it keep opening and closing and my skin very fragile I'm signed off long term and unable to claim for disability allowance. 

      It's really unfair , so I understand how frustrating it can be. 

      Have you tryed sitting on a rubber ring at home ? Helps with the pressure 

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    • Posted

      Hi Charliewales

      I was reading this post and would like to know about the SSP and ESA.  

      I have never claimed any benefits and have always worked but due to an anal abscess this has prevented me from getting back to work for the last 5 months now and its still ongoing.  

      I am a temporary employee and managed to get 6 months SSP, but after the 6 months what sort of help can I get?  Money is tight.  I never thought I would be in this situation. I have always worked and want to get back to work asap.   This has totally affected by whole life. Just horrible.  

      Any advice will help.  Thanks

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  • Posted

    I have tried everything, and I mean everything.  Nowadays its just a case off move around on my side til I get comfy.

    I feel for you as well about the money situation, it was a nightmare when I first applied and still is to this day.  Had my benefits stopped for 33 weeks last year after a medical report said I was fit for work, and I put in a claim for the new PIP benefit on the 2nd of August last year and am waiting for the final decision any time now. 

    This really is a misunderstood condition, I know it seems minor to the people that have had one and had it successfully removed first go but to the people who have had their lives ruined by it it really can kick you when your down.  

    Mine first started 14 years ago when I was serving an apprenticeship and I had to stop half way through as I could no longer cope with the works demands of the time, and when I went back to college 8 years ago to get the qualification that i needed to get into that field of work it came back at the start of the second year and hasn't gone awat.  sad

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    • Posted

      Aww sorry to hear that. It is a pain in the rear ( literally isn't it) I wanted to become a paramedic but I have no chance , this condition destroys everything. I have out weight on, confidence has gone everything I'm even on anti represents now because all to much , but I'm working on it day by day , I've even stopped smoking to promote healing but I can't tell any difference. 

      Always here if you need a rant and people are so misunderstood about our condition. 

      Charlie smile 

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  • Posted

    I am sorry to hear you had so many ops, my son has had 1 op and its still not healed after 5 months, i asked for MRI and they said no! I am now looking for a specialist in this field and if i find one will let you know, it is apparently very difficult to treat and often reoccurs in men esp hairy ones like my son! He was born with pilonidal sinus/sacral dimple and apparently his abcess has stemmed from that. Why dont they do something at birth like glue it. Have you tried that route with the fibrin glue.

     

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  • Posted

    So sorry to hear about this mate

    Myns still at same stage... closed.. with one hole what just won't go.. only bleeds if u dab it.. so I'm having to get on with it.. just nothings normal any more.. showering.. sitting.. I feel your pain mate

    Hope u sort it asap

    I got.kicked of esa. . Said i was fine... when a was there she refused to look at my wound and cos I could lift my hands above my head she said I was fit for work. .shocking

    I've always worked in the building trade on sites.. so no way I can rush back till fully healed

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  • Posted

    Hi. I had 13 operations and feel your pain and

    Frustration. I eventually found a fantastic consultant and without sounding smug was in a fortunate position to be able to pay for a private consultation. However he was so irate that I had received such poor treatment that he continued my treatment under the Nhs the very next week. He performed a different surgery and I have been clear for over 2 years.

    You have to stand strong with your dr. Mine actually said to me I don't understand why you are upset and there is no such thing as an expert in this field. Ironically the expert was 10 miles down the road and had delivered training to said consultant.

    I am now making a claim against him and that hospital trust as for over 10 years my life was ruined and the other procedure was available. Because of this I know there are several experts in this condition and I'm taking part in many trials (by telling my story) for said consultant.

    I would name him but last time I named him on here he was inundated with emails so I can't.

    Please all of you stand up and insist they find you a specialist put it into to google that's how I found him originally.

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