Large complex incisional hernia

Digestive health
1

Hi all hope your all ok,

Im new to this and have just found the courage to share my story and would really like your help.

In 2014 i had a umbilical and ventral hernia repair unfortunatley this wasnt a sucsess and ive been left in a worse state than i was. I developed a dehiscence of my wound which required daily packing and internal abscess that required surgical drainage with hernia mesh removal. 

Ive now been told i require a component seperation tecnique, has anyone had this? id be really grateful for any advice. x

2

I had similar symptoms and scenario to you being left with a gigantic football size hernia (s) and many loops of bowel outside of the abdominal cavity. After 3 previous repair operations.

My operation which sounds similar to yours was carried out at Norfolk and Norwich University Hospital on 16th May 2016 having waited on NHS from late November 2015 after G P referral. I am tol my NHS operation has gone well with the insertions of a v. Large porcine biological mesh costing approx £7000 into the abdominal cavity I was told there were  in fact 6 hernias and more bowel out side than inside the cavity most appears to be gathered in but am Ellet with a deflated pouch of skin where the football was and a 2 inch overhang of currently improving but swollen ski across my tummy.

I will have to wear a support corset always for activities. The worse part of my experience in hospital was the insertion of the epidural anaesthetic. And being rolled in the first 2 days after the operation to check the needle and for sores on back. I left hospital 26th may 2016 36 hours ago but having problem sleeping in my bed on my back so sleeping in the chair. I hope this information helps you to decide how you shoul progress. Best wishes to everyone Trevor

 

3

Thank you for your input any info will be beneficial in finding out what to expect..your hernia sounded very similar to mine in many ways.

Size of my hernia is like i look 9mths pregnant which isnt a good look for a man and as you can imagine i get alot of unwanted attention which is quite upsetting to the point i dont venture out much plus mobility is an issue. Im now under a fantastic Consultant at QMC in Nottingham, theyve advised me i need to loose 4st before an op is safe to perform, however due to mobility and extreme tirdness this is very difficult. The op i need is done by seperating the oblique layers of muscle and bridging it together using procine biological mesh, i may also need to have some bowel removed in order for them to be able to push my bowel back into its original cavity, they'll know more once they open me up. Ive been advised i wil be in icu for a week and a total month in hospital. Is an epidural really painfull? as im a wuss when it comes to needles haha! I do hope your pain soon subsides and your backto sleeping in your comfortable chair. Best wishes John

4

Hi John

I am on the list to have my large incisional hernia repaired at the QMC, I too found the consultant there very understanding and not at all phased by performing the surgery. I had previously seen a consultant at the Royal Derby and had a very upsetting consultation there - I refused to go back!  I have been told my hernia is too low to repair with the component seperation technique.  I have an appointment next month to discuss the result of my recent CT scan so will know more then.  I have to admit to feeling quite nervous about the op which I am hoping to have before the end of the year.  Don't worry about the epidural, you cant see the needle, they insert it when you are sitting up - I asked for a sedative when I had mine and it wasn't as bad as thought it would be, in fact I bearly felt it.

5

Hi Debbie,

thank you for your message. Ive heard a lot of good things about QMC which is very reassuring. I really hope your appointment next month is a positive one and you get your surgery by end of year. Unfortunatley for me my hernia is all the way down the midline of my abdomen and the only option is component seperation tecnique. Ive had a ct scan in march and awaiting my results but in the meantime they want me to loose 4st before i can be medically fit for this type of surgery but i have restrict mobility and the pain is unbearable so am finding it really hard to loose weight and looking like im 9mths pregnant is not a good look for any man, its nearly 2 years ive been like this and really want this nightmare to end. I may have to ask for a sedative before an epidural im pleased you mentioned that.

6

Which Surgeon are you under John, I'm with John Abercrombie, he's a lovely man, really put me at ease.  I was very anxious to find a surgeon who had some expertise in this type of surgery, I was so worried about something going wrong! I need to lose aboout 2 stone and I'm finding that hard, the only thing I can do comfortably is walk and swim.  I've had my hernia for about 18 months - mine was caused by an infection aquired in hospital after my last surgery (not the QMC I hasten to add).  If you like, I will keep you posted on my experience at the QMC.

7

snap thats who im under too, your right hes a lovely man and definately feel at ease under his care especially knowing hes performed many of these types of hernias.. Please keep me informed of your experience of QMC that would be brill thank you.. Unfortunately im not allowed to swim at the moment as i still have an open wound that wont heal but that will be the first thing i do once it has haha!

8

Hi I had an incisional hernia repair coming up for 2 years ago this septembercaused by a bowel resectioning which caused a wound infection which also needed daily packing  for a few weeks.  The hernia was midline, and I have had a mesh repair,  but with the polypropylene mesh not the porcine, had heard good reports about the porcine mesh; also had an epidural for pain relief for my bowel resectioning, it was a god send aftrwards and I really didn't need any more pain relief, I dont remember having it inserted it may have been whilst I was under the anaesthectic, but so glad I had it.  It sounds like you have a good consultant, I hope that you can get to where you need to be,  I too looked pregnant not a good look for a 68 year old granny with 10 grandchildren.  All the very best to you.

9

Hi Jon, I've goit my surgery date, 6th Oct. I hgad my pre op assessments last week and all is well. I just hope the Junior Doc strike doesn't thgro a spanner in the works! I'm anxious to get it over with now. I will keep you posted

10

No idea about this.you should ask to doctor.

11

Hi Shirley,

I am in a simliar situation now to the one you were in. I had a bowel resection at the end of November 2015 due to having a twisted gut - it saved my life! However like you, after a few days in the critical care unit I developed an infection in the wound. They opened up about half the incision and packed it with I think it was Aquacel until the wound healed from the inside out after about 4 weeks - I was home after about 10 days so most of this was daily dressing changes at the surgery.

However after the wound had healed up nicely and a few weeks/months later, at least by April 2016, I noticed a swelling that has gradually got worse. Obviously I went to my GP and he said I'd got an incisional hernia. He said it was nothing to worry about and that it was unlikely to strangulate. It got worse so I saw the GP again and asked about having a repair. His response was, " ... we don't generally repair incisional hernias, even if we did it would porbably re-occur, just don't lift anything heavy ...." I was not best pleased, I can't spend the rest of my life not lifting up anything heavy! What is heavy anyway, I'm not a weightlifter but I don't want to be sedentary for ever either.

So I consulted a surgeon at the British Hernia Centre at a cost of £150. He told me that he has repaired over a hundred hernias of this type this year alone. He would do an open and laparoscopic procedure under general anaesthesia.

My problem is that to go privately it would cost me £12,000.00. I could find the money but it would be hard. So now I need to, 1. convince my GP that I need a repair on the NHS and 2. to refer me to this surgeon.

The surgeon did say that there was a 10% chance that the repair would fail, which he considered high but he was happy to do the procedure - I think 90% success rate is a perfectly reasonable rate and I'm happy to accept that risk but would the NHS or my GP be happy with that?

So having said all that, did you or any of you guys have any difficulty with your GP not wanting to refer you for a repair?

Did you have any problems trying to convince your GP to refer you for a repair?

Any suggestions as to how I can convince my GP?

Phil.

12

Hello Phil sounds like you are in the UK, I found my own surgeon and my GP referred me to him for the repair.  I am 70 now it is 2 years since my repair, and although I am generally well, I do still have pain associated with the mesh, also I teach ballet and think that sometimes if I over do it this brings on the very bad pain, I also make funny noises from my stomache through my mouth, I cannot step up high steps on and off trains, I have to phone ahead when I am travelling by train to get assistance from the train guard it is difficult to reach things above my head, and I definitely cannot lift even moderately heavy objects.  I am glad I had the repair, but for me it is not utopia recoverd.  Possibly made the best of a difficult situation.  This is just my opinion and experience, I saw different surgeons and some advised against the repair, whilst my very experienced and qualified surgeon was happy to do it he charges a flat rate fee of £10,000, I persuaded my GP to send me on the good old NHS, but money is very tight in the NHS now.  Apoloagies for the ramble, hope you find it helpful and possibly informative

13

Hi Shirley,

Thanks for that.

Yes I am in the UK. It's unfortunate that your hernia repair still causes you pain and discomfort. However you have opened my eyes to the potential pitfalls.

Thank you.

I think I will go for a repair and hope that it will give me a better quality of life. If there is discomfort and pain, well, I'll just have to cross that bridge when and if I come to it. Also I can see from what you have said that it may be necessary for me to be dogged in convincing my GP to refer me on the NHS. So be it!

I'll keep you posted on what happens.

biggrin

14

Hi Phil, my GP was very supportive when I asked for a referal for my incisional hernia,. I'd been referred to a surgeon following a wound infection after my last surgery - it was all arranged by the hospital but I wasn't happy with either the hospital or the new Consultant and refused to go back there. My GP wrote to the NHS area funding office, sorry I can't remember the correct name of the Dept, but they said they would fund my operation anywhere in England. I wanted to see Shirley's consultant in Edinburgh but they wouldn't fund me for treatment in Scotland. It is worth doing the leg work. I saw only 2 surgeons, 1 of them recommended my current surgeon. He is a bowel specialist and deals with all the complex problems associated with bowel surgery and incisional hernias, and only 10 miles away in Nottingham. My hernia is large, my stomach muscles have torn away from the bone, these can't be fixed and the surgeon will have to use a heavyweight mesh to bridge the gap. He has said there is a 30% chance of recurrence because the hernia is low down in my pelvic area - the original incision was bikini line. My surgeon has also arranged for the excess skin - due to the large bulge - to be removed at the same time. I'm having my surgery on the 6th October - I'm not looking forward to it but at the same time can't wait to get it over and done with. As a further note, I now have private health insurance, they wouldn't treat me this time as it was a pre existing condition, however, should the hernia return, I will be able to see Shirley's surgeon in Edinburgh, that alone makes it good value for money. Good luck and do be persistent, it's important to find a the correct surgeon with the necessary experience and skills.

15

Hi Debbie, (sorry this might be a bit of a verbose post)

Thanks for your post. Along with Shirley's post it has helped me to realise that my situation is not uncommon! I had thought that my hernia was either because I was unwise enough to commence normal life too soon after my operation or just bad luck. I see now that the infection I suffered had a part to play.

I think the NHS department you refer to is the Clinical Commisioning Group for your health authority. In my case as I live in Gloucestershire it is the Gloucestershire Clinical Commissioning Group (GCCG). I found this out by contacting Health Watch (http://www.healthwatch.co.uk/). I asked them for clarification about when a person can be referred for a hernia repair and if I can specify the surgeon. They were very helpful and told me: "Hernia treatment in adults has been identified by NHS Gloucestershire Clinical Commissioning Group (GCCG) as being Criteria Based Access (CBA). Therefore CBA will not be funded unless the patient meets certain pre-defined clinical criteria. Where reviewing clinicians (GP) can evidence that the patient meets the CBA criteria the patient can proceed for treatment without any requirement for GCCG funding approval.

Surgical repair of symptomatic hernias is supported for patients who meet the following criteria:

•    Symptomatic hernias in patients where symptoms are interfering with normal work, educational responsibilities and/or normal domestic activities can be referred. Description of problems should be documented in referral letter.

•    Symptomatic hernias in more sedentary patients that over a three month GP assessment period are clinically enlarging or causing significant discomfort and/or limiting activities can be referred. Description of changes and/or symptoms should be  documented in referral letter.

There is good evidence that asymptomatic and mildly symptomatic hernias can be safely managed through a watchful waiting approach, and therefore surgical repair of hernias that are not causing any significant impact on daily activities is not usually funded. Where a hernia is causing symptoms that have a limiting impact on activities, funding for surgical repair will be funded".

My worry is that my GP may not consider my condition to be bad enough to warrant a repair, after all it would be his subjective opinion and compared to what you have had to go through my situation is minor! Having said that, it is having "a limiting impact on activities", I have been told not to lift anything heavy and at the moment my partner and I are preparing to move house so there is a need to do a lot of heavy lifting. It is also limiting my lifestyle. I am about to semi-retire after 40 odd years sat in front of a computer screen working long hours and I now want to live a more active life. I like gardening and was looking forward to creating a new garden but, no digging for me. I am a church bellringer, well that seems to be a no-no. I play great bass in a recorder ensemble, after an hour or so I get a sore burning sensation in the area of the hernia. So I guess it is affecting me but we will have to wait and see if that is enough cause to warrant a repair in my GP's opinion.

What puzzles me is that it seems contrary to sensible thinking to me to wait until a hernia has become so bad that it is having a major impact on a person's wellbeing before scheduling corrective surgery. Surely it will mean that the procedure will be more complex and less likely to be 100% successful - I know that there are no guarentees.

I am happy with  the consultant surgeon, Mr Hakky, that I saw through the British Hernia Centre (BHC). He is at St Mary's in Paddington and has told me he would be happy to do the procedure either on the NHS or through the BHC. He told me that he has done over a 100 repairs of this type this year alone. His main specialty is bariatric and laparoscopic surgery (he's been interviewed on the BBC about bariatric surgery - see youtube if you're interested) but hernia repair is also something he specialises in. So I'm happy for him to do the procedure, just need to convince my GP or find a lot of money.

Anyway, I'm sorry you are going through the wars at the moment Debbie. I hope that you surgery in October will go smoothly and be a positive step on your path to a healthier life.

Regards,

Phil.

16

Hi Phil, by the sounds of it, your hernia is already having a significant and limiting impact on your lifestyle.  I'm 53 and have had my hernia for 2 years.  My surgeon told me, that had I been in my 70's then they wouldn't repair, but as I'm "still young" and active then a repair is recommended.  He also stated that the repair was necessary to prevent the hernia from getting any larger (and it will) and also to prevent the possibility of strangulation (although there is little chance of that!).  

I agree with you that it seems pointless to wait until a far more complex operation is required (I will be in theatre for about 5 hours), surely it is not cost effective, particularly if it then leads to further corrective surgery and it certainly isn't fair to those who are having to go through the  experience.

17

Hi Phil/ Debbie it would seem that I have been blessed on 2 counts, 1 I was 68 when I had my repair, it is possibly because I am, apart from all my ops, very fit, end of not just for my age, as I have been a dancer all my life still teaching ballet and 2. I was able to go to Edinburgh for my op as the surgeons in my area, East Yorkshire are not specialist hernia surgeons, they were willing to do the op but admitted that they were not specialist and said that I would be better off with a specialist surgeon.  I suppose three things really I didn't have to prove to my GP that I met the criteria he just referred me to Mr De Beaux in Edinburgh, he must have stated in his letter that I met the criteria.  Maybe the fact that I am still teaching ballet had some impact on this as my hernia was definitely getting bigger, and I guess I may have had to give up working.  Being involved in ballet is my passion and I do think that if I had had to give up it would have impacted on my mental state, I am sure there is a case to be made for you to have the surgery Phil, I do hope so and that you get a really great outcome.  Debbie I hope your surgery goes well and that you sail through it, I too had abdominoplasty at the same time as my hernia repair as my abdomen and abdominal wall was in a bad state.  On the plus side all of my friends are jealous of my perfectly flat stomache, even those who are considerably younger than me.  Mr De Beaux has made an excellent job, Bon chance to you both.

18

Thank you Shirley, I shall post an update when I've had my op, I'm keeping everything crossed that the Junior Doctors strike doesn't impact on the date I'm booked in! I'm secretly hoping for a nice flat tummy too 😊

19

Hi Debbie/Shirley,

Thank you both for your comments and supportive thoughts.

It's dissapointing to think that age should be a barrier to any aspect of life let alone improving one's health. I thought that nowadays it was more to do with the fitness and suitability of the patient regardless of age. If you can have a sex change on the NHS why not a life enhancing hernia repair?

The latter aside;

Shirley, it's encouraging that you have had treatment that enables you to live the life you desire and to pursue your passion. Long may it be so.

Debbie, we can only hope that sense prevails and that your procedure goes ahead as planned. I hope that all goes well and that you make a full and productive recovery. Do let us know how you get on.

For my part, I have an appointment with my GP on the 19th September so I am marshalling my arguments to support my case. Hopefully the clinical report from Mr Hakky will sway the balance in my favour. Frankly this issue seems to be absorbing a lot of my conscious and unconscious resources and I shall be glad when it's resolved one way or the other so that I can move on. I'll let you know how I get on if I may.

Regards,

Phil.

20

Hi Phil hope you can persuade your doctor that you need to get your hernia repaired, would be really interested to hear how you get on and all the very best for your op Debbie, do let me know how you get on.