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suffered for 22 years and then I found an amazing surgeon

Posted , 6 users are following.

catherine_12125
catherine_12125

I am 39 and had my first operation when I was 16 for this I have never gone more than 18 months without surgery at some points I have had such a deep excision that I have had over 3 months off work. Due to relocation I have seen many different surgeons and I was fed up with them not looking into why this kept happening and why all they could over me ws excision or closure which to me was only reactive and no one would spend time to look at a more holistic approach . I even had one surgeon who said to me I don't understand why this upsets you so much and how it has an impact on your life! 

However after  spending over a week on google I found a remarkable surgeon who had a specialist interest in this condition and I payed to go and see him last year. He was amazing he really understood why I was so upset by this and took a different approach. Touch wood I have not had any symptoms which has never happened before I will never be able to thank him enough  for how he has given me my life back. He refused to treat me privately and insisted he did it on the nhs. Although he never said anything this to me was his way of saying that I had suffered enough for 22 years! I saw him on a Friday and the following Wednesday he performed the surgery. 

My advice to anyone is do not accept that there are not specialists in this area as I did for so long and although you will have to do the ground work yourself it is worth researching the surgeons in your area to find someone who really understands this condition 

 

0 likes, 16 replies

16 Replies

  • gill09
    gill09 catherine_12125

    Posted

    Thanks for the information. How could I contact that doctor?What hospital is he at? My son is suffering with the last cm or so of a really deep excision (op was two and a half years ago) that just won't heal. It keeps re-opening. Desperate to find a way of sorting it out for him.
    • catherine_12125
      catherine_12125 gill09

      Posted

      Hi gill 

      I really feel for your son. His name is mr Lund and he works from derby hospital. My deepest excision was 13cm I wish you all the best 

  • gill09
    gill09 catherine_12125

    Posted

    Thanks Catherine, it really is horrible and debilitating. The excision that he had was shallower than that , about 6? And 10 cm long by 5 wide. Took best part of a year to get to this point and it's never quite finished healing after packing was stopped. I will contact the hospital and see what he says! Thx again and all the best with your PS!
    • catherine_12125
      catherine_12125 gill09

      Posted

      Until you see him try just placing a silver dressing or a honey one which your dr should be able to provide this helped me also. 
  • Charliewales
    Charliewales catherine_12125

    Posted

    Really pleased you have found someone who understands. I feel like my surgeon doesn't understand either and it's really annoying. I'm having mri scan in 2 weeks and then waiting on a skin graft. Can I ask where your from and who was your surgeon please who has performed on you last. If I'm not sorted this time I'm asking for someone else. I even expressed to him that I would pay privately to get it all done quicker and he said it wouldn't get any quicker. It's destroying my life and I'm only 29 and had 9 ops already. X
  • Charliewales
    Charliewales catherine_12125

    Posted

    Just seen your other replies. I have the Same problem with mine re opening on my bottom and also have one under my breast. The answers I get all the time is " it's your condition" really p's me off
    • catherine_12125
      catherine_12125 Charliewales

      Posted

      Just realised I have never replied to you how very rude!!! I am sorry. I hope that you got the results you were looking for from the MRI 
  • gill09
    gill09 catherine_12125

    Posted

    Hi there. I have messaged you before but wondered what surgery he did exactly? 

    • catherine_12125
      catherine_12125 gill09

      Posted

      Hi. 

      He did a mixture. He used fibrin glue for some if it and moves the opening so that it wasn't scar tissue. I know it sounds ridiculous but today is one year since I had it and it's the longest I have gone so I am so happy! 

  • gill09
    gill09 catherine_12125

    Posted

    Thanks. My son saw Dr Lund yesterday and he's going to an op in Nov. He was great and really positive. He's going to move the opening for him too to avoid scar tissue. Thanks for recommendation and fingers crossed!
  • vampire_teen
    vampire_teen catherine_12125

    Posted

    I tried posting this before but for some reason,it couldn't get posted.Anyway ,I am 13 years old and I had my first surgery ever this saturday for pilonidal sinus.There's a tube coming out of my back like  tail which collects blood in it.It really is painful and kinda crazy cuz I had it RIGHT after my birthday.It pains so much,can ANYONE plz give me tips to ease the pain and heal fast?
  • seth16
    seth16 catherine_12125

    Posted

    Hi

    I see this was posted a year ago and just wanted to see how the recovery was from the surgery?

    I have had this 5 times in 7 months and desperate for a cure, have been looking for good surgeons and practices for a few weeks now and still pushing my doctors for a second opinion/Scans and referral.

    Thanks and hope you are well and rid of this awful, debilitating situation

    smile

    • catherine_12125
      catherine_12125 seth16

      Posted

      Hi.

      Three years in September and never had another problem. Absolutely thrilled. I really urge anyone to push for referrals to specialists as they are out there and I wish I had this done years ago

    • seth16
      seth16 catherine_12125

      Posted

      Thats great, its encouraging to hear that there is a cure... a long term solution.

      You mentioned that he used the fibrin glue, but what procedure did he do initially? If flap surgery what kind or cleft lift, etc?

      Did you go private or have it on the NHS after consultation. I dont mind paying just want the advice and right treatment for me.

      Thanks

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