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

Infections
1

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..

2

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

3

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

4

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.

5

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 

6

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

7

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 

8

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.

 

9

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

10

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

11

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.

12

What procedure did he do though what Pete hasn't had done etc..

13

My location makes it hard for me to even see someone else, let alone a specialist.  I have asked so many times it's unreal but I don't think my situation would change anytime soon.

 

14

Hi Pete

It is a horrendous condition to have, i feel your pain. I have had this 10 times now and only been offered a treatment once on NHS apart from that i have had Incision and drainage which is not even short term solution. i have had it 5 times in 7 months and its ruining ym life. NHS dont seem to take me seriously either.

I am looking into going private.

What did you do ? I see you posted this a year ago so hope you have had a cure

Thanks

 

15

Sad to say but no, its got worse since the last op which was number 16. Had a new surgeon who stitched it up. The stitches failed and it had to get packed. Saw the Consultant at an outpatient appointment in March who was meant to get me back in in 6-8 weeks after a scan but not heard anything yet. If the next appointment goes the Sam as last time i will be changing to Bristol Hospital as Derriford in Plymouth is a disgrace.

Good luck to you though, over 9 years since it first appeared and it has destroyed every aspect of my life and now my depression and anxiety have turned into psychosis, which is very challenging in itself.

16

I am sorry to hear this, it is soul destroying!! 

Are you looking at NHS or private, im looking at both but still unsure of the best consultant, treatment and hospital.

Why have u choosen to go to bristol hospital, is there a specialised surgeon you have found in colon rectal?

With the NHS i found you have to chase continiously otherwise they will not bother.

Have u had mri/ct to pin point why this keeps happening.

I do not believe it is hair as there is a tract but NHS are not helping at the moment. 

Its very frustrating and dehibilating

G

17

I have seen on Embarrassing Bodies that they sent someone to see a surgeon, who did an amazing job and it worked. I can only go NHS as I have been out of work for so long private isn't an option.

Its so annoying as they still only see me as a normal sinus patient despite my history. Getting medication can be a struggle as well as new GPs don't understand why I am on what I am for a sinus.

I have pretty much given up on getting it sorted, it has had such an affect on everything that even if they fix it there will be many underlying issues.

18

Where abouts did you have treatment? There are many specialists when entering into google sad dont know who is the best

Dont think my posts are getting through....

19

Hi all

I have good news!

I have reached the end of this ordeal!

It has taken me 8 months for the whole process.  

It all started in Sept 2015 with a large anal abscess which was drained, this formed a fistula,  then in December I had another operation for insertion of  one seton, this was review and tightened in Februry 2016, and the seton was removed in April after it had basically grown through all the tissue and muscle, and became superficial enough for the fistula to be laid open.  It has now healed shut,  I still have a large scar but this will close properly in time.  I am still careful not to sit to roughly or put too much pressure as the scar is still fragile for about a year but ITS HEALED!  I am back at work and life is getting back to normal. 

Looking back I now understand that the seton is probably the best way to get rid of this as it grows through all the tissue including the anal sphincters and once it is superficial enough the laying open was the best for me as it heals completely.  There was alot of sloughy tissue once the wound was laid open but that dissapeared with all the dressings and became clean.  The seton was tightened/shortened every 2 months up to the point it was superficial enough. 

My saving grace I think is I am NOT diabetic, otherwise this could have played out differently. So diet has played a huge role in my healing. No fast foods, all "clean" healthy food, avoided preserved foods and limited my carbohydrate intake.  More nuts seeds and roughage;  avoid constipation. avoid sugars.  Basically sensible eating.  

All I can say is it takes alot of patience and keeping your head together, financially it took its toll too.  Fortunatley I had some major saving as a back up otherwise I would have been in deep sh*te.  

And of course I was treated in the NHS,  my colerectal surgeon and the team was amazing. They needed alot of patience with me as I am not the easiest person.  So ask the right questions and need to trust the surgeons. Find out if they work in Private hospitals too as most surgeons work in HNS and Private healthcare. Find out reviews about them.  This helps make decisions. 

I hope this will never come back. It has been an ordeal. 

Having been a patient I can be a better nurse too.

20

Hi

Thats great that your ordeal is over from this problem... what a relief for you?

I am looking for a treatment as i have had this 10 times since 2011 but more so 5 times in the past 7 months sad

Can i ask where and who did your treatment through the NHS??

Would you recommend?

Thanks