I need a bit of advice as to what to do. I had primary debulking surgery on 25th January this year. I noticed afterwards that I had this peculiar 'pyramid' that stuck out at the top of the incision, on the midriff - when I asked I was told it would flatten out. Well, it did start to do so after about 6 weeks, but then it rapidly became obvious it was an incisional hernia, which extended itself after 4 weeks to just above the navel.
I made a fuss because no one referred me for a repair or a surgical support - eventually, after a lengthy argument over days between the hospital which carried out the surgery and my GP surgery about who was responsible for referring me onwards, the hospital told me they'd referred me on for surgery, but didn't say where to. As for referring me onwards for a truss, not sure how they resolved the argument between them about that, if they did at all. That was back in mid May. I finally received a letter from St. Mary's at Paddington giving me an appointment for the hernia to be assessed by a surgeon on 7th September, 2018. I have so far not been given any kind of truss or support, but bought myself something vaguely suitable off the internet in the form of a wide elastic belt. I now have an appointment at my local hospital in Ealing on 28th August to be assessed for a surgical support, presumably as a result of my GP referring me there. Stable, horse and bolt spring to mind...
When I saw the Oncologist on 19th June, I pointed out that the hernia had spread further downwards, right to the navel on one side - she said she would try to get me seen earlier. Now, the hernia is well past the navel; there are only 2 inches of my scar at the bottom where the hernia has not spread to, and given the scar is over 11 inches long, and those last two inches are over the pubic area, I assume it will very quickly go all the way down. Its difficult to keep my intestines in place without a support, its very uncomfortable, and I'm furious, because, as I said to the oncologist, wherever they insert mesh to keep things together, further surgery in the area will not be possible, So what happens if I get a bowel obstruction later, was my point...
Now its too late, there will be a mesh insert all the way down by the time I'm seen, never mind operated on, so lord knows what will happen if I do get a bowel obstruction. What I want advice on is to whom should I make a complaint - normally, I'd contact the PALs service at the hospital which is dealing with me, but in this case, its not clear which PALs, if any, I can complain to, because I'm between hospitals so to speak. Does anyone know if there is an overall body I can complain to?
As it stands, a disembowelment would be really, really easy to achieve, given the only thing holding my guts in place is skin.. any advice welcome.
Miriam
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bamboo89
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Certainly contact both PALS ASAP, but this is beginning to look like medical negligence but not necessarily by the surgeon who did your op but by those who won’t act now. Have you tried contacting the surgeon who did your op via his/her secretary and maybe skipping the ‘middlemen’?
I can’t think of anything else except constantly making a fuss to everyone even vaguely interested - Macmillan? Are you under a Hospice etc? How about threatening to tell your story to the press? It is a doozy!
Good Luck, I will keep my fingers crossed for you, do keep us updated,
How about the CQC - Care Quality Commission? But I can’t see a complaint getting you seen sooner than a month’s time. It really is atrocious to leave you in the condition you are in.
I’m still trying to think of something useful to tell you.
Well, at this stage, its too late to hurry along surgery - I was concerned 2 months back about it opening up all the way down, but now that's almost happened, then it's major surgery from this point on, there's no avoiding that. It was just quite who to make a complaint to that I'm struggling with. I've more or less decided I will have to start with the PALs service at Queen Charlottes, and perhaps they can advise or forward my complaint elsewhere.
Hi , how awful for you , have you considered seeing someone privately, I’ve done this in the past and it’s good to have a second opinion. Don’t know what else to suggest . Hope you get help soon xx
Tried the private hospitals locally a couple of months back - neither of them wanted to do it, as soon as they realised I'd got OC. You know what private hospitals are like, they only like the easy, straightforward stuff generally, any complications or complicated procedures they pass or leave to the NHS
Hi Miriam, I can relate a bit as I have four incisional hernias, four years on from debulking surgery at Queen Charlotte's, but nothing as bad as you, you poor thing! I had two consultations at St Mary's - the first didn't recommend using any kind of support (!) and at the second (just before Christmas las year!) I was told I'd be put on a list for repair - not a word since then. The consultant also said, not altogether helpfully, that not enough is done to stop people getting hernias in the first place. I'm not sure what to suggest, but PALS at Hammersmith are pretty proactive. Fingers crossed someone finds a solution for you. Good luck, Deb x
Exactly, not enough is done to stop hernias happening the first place, that's what I find infuriating. I mean, if you're going to do a job at all, it should be the best job, or don't bother... I can't help feeling the original surgeon should be obliged to put it right, since he left me in this state in the first place. If they had to constantly repair people they'd operated on, maybe they'd learn to do the job properly in the first place. As it stands, they willy nilly cut people up and never have to deal with the aftermath, therefore, they don't change their practice. And that makes me cross, because if I get something wrong,I have to go back and sort it out, like most of us, it's how you learn to get better at what you do. Seems daft to me, its pure commonsense I'd have thought, but then commonsense seems to be in remarkably short supply these days.
Well, obviously after four years I wouldn't want to blame my original surgeon, but maybe I shouldn't have been quite so gung-ho about exercising and getting fit and I don't suppose my weight gain has helped. I think I assumed that I would just knit nicely and all the post-hysterectomy advice about not lifting heavy stuff for 12 weeks is just an estimate. Deb
Lord, after 4 years?! no I guess not, but mine made its presence felt when it was small within 6 weeks of the original surgery... and hernias always get larger if they're related to major surgery.
I was in a similar situation two years ago and eventually had a successful hernia repair approximately 11 months after I started getting symptoms . These included severe pain caused by intermittent acute intestinal blockages and chronic vomiting .
Things took a long time to get sorted partly due to a reluctance from my Oncologist and Gynae Surgeon. Best practice is to avoid surgical hernia repair if possible because of various risk factors when you have OC.
The thing that really helped me was paying for a private consultation with a local Gastric Surgeon. Private surgery was not an option but I wanted his expert opinion on what the best treatment would be. He was brilliant , he took my case on and liaised with my other consultants on my behalf. Once he was onboard it was not long before my surgery was agreed and carried out on the NHS.
I understand you are angry about how you have been treated but can I suggest you put your energy into getting an expert Gastric opinion on your hernia and the best treatment for you. With respect I fear you maybe on a hiding to nothing with a negligence complaint.
You're probably right, I suppose I'm just irritated by the inefficiency of it - if they'd repaired it earlier, the surgery would have been less extensive, plus, once the mesh is inserted, no further surgery is possible where its been inserted, so if that's the length of the original incision, then what happens if surgery for a bowel obstruction later becomes necessary. I suppose I'm frustrated with myself as much as anything - I didn't want the original surgery, but was told I would die imminently if I didn't, which frankly, I wasn't that bothered about, but family and close friends were. However, I knew from experience and observation that there is always a price for medical intervention, whether that be surgical or medicinal, and the situation I'm in now is absolutely not a price I wanted to pay. In other words, what I feared if I let them muck me about has come to pass... so I guess I'm cross with myself for not having the courage to say no in the first place. Hey ho, nothing I can do about that now... thanks for responding, but I'd like to know how your surgery went and how long the recovery was after it, and whether it was successful. Also what you actually had done...
Can I ask where you went and who you saw for the private consultation? All I'm finding at my local BMI are General Surgeons, and I'm not sure they're the right people to see...
Well I asked my GP to recommend someone to see and then contacted my local private hospital to book an appointment . I went to see him and was very nice but suggested I see his colleague who had more experience doing keyhole repairs. He sent me for various investigations.
It turned out that I had three hernias the length of my scar each with loops of bowel poking through which explained the pain. I was also diagnosised with a large hiatus hernia. He repaired all three using mesh. It was a major operation for me and it took a few months to get over but no where near as long as my debulking surgery. My hernia symptoms improved immediately but I still have to take various gastric meds to keep everything happy.
I am pleased I had the repair but by that time my worsening symptoms were having a serious impact on my quality of life. I was in serious pain, having to follow a very restricted low residue diet and vomiting day and night. There was also a real risk that one of the intermittent blockages would not clear and cause a medical emergency .
As far as any future surgery goes I have not been told that my repair would preclude this but it maybe more complicated.
My understanding is that incisional hernias following debulking are common but usually asymptomatic. Therefore given the other risks involved it is not appropriate to operate as soon as one appears instead best practice is to leave well alone wherever possible.
For me personally debulking surgery was definitely the right choice. I was diagnosed with Stage 4 Clear Cell OC when I was 49 years with two teenagers. That was back in 2014. Without the surgery and other treatment I would not have been around to see my daughters grow into beautiful young women or to spend quality time with my lovely husband . Yes the hernia thing was a pain but it was sorted and all is good.
I hope you can get the help you need and all the best.
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