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Author Topic: Should full risks of a two stage procedure be disclosed prior to first stage  (Read 2046 times)

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Offline kneesurgeonvictim

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Does anyone have an opinion on this?

In a knee operation involving two stages (eg cartilage harvest and implant) and perhaps a third operation to trim the cartilage later down the line, should all operation risks in second stage and possibly third operation be disclosed when the patient is deciding how to proceed and before the first stage operation.

For example the actual cartilage harvest operation should be relatively straightforward, and risks are fairly standard (DVT etc) so should the numerous risks involved in the second stage Open Knee Surgery - (Arthrofibrosis, Joint adhesions, Graft overgrowth, Chondromalacia or chondrosis, Cartilage injury, Graft complication, Meniscal lesion, Graft delamination, Osteoarthritis according to Genzyme) be disclosed prior to the patient making the decision to have the first stage operation.

Should written consent have been obtained for stage two risks prior to stage one - I guess the question would be, are stage one and stage two operations considered to be an integral part of the cartilage implant procedure.

If stage two risks do not have to disclosed prior to stage one, then this would have massive implications for patients undergoing these two stage cartilage implant operations meaning disclosing major risks of stage two - which may be offputting for some patients - could be left until after the patient had spent many thousands of pounds and committed themselves to the procedure to the exclusion of other treatment.

Offline The KNEEguru

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Why not get an opinion from the ICRS? http://www.cartilage.org/
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Offline kneesurgeonvictim

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No thanks - I was more interested in finding out what is acceptable practise in the UK since I am a UK citizen and had the MACI recommendation and first stage operation in the UK from  a UK based surgeon.

Offline Lottiefox

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The ICRS covers surgeons who practice in the UK. There is a huge amount of research and activity on cartilage regeneration going on in both the UK and across the globe with many of our UK surgeons being involved. They are an interesting organisation to check out.

I'd also frame the question slightly differently.....if you're considering ANY form of surgery (one stage, two stage etc) isn't the responsibility of an informed patient to seek out information about risks, outcome, evidence, complications....from both their treating doctor and the wider community. Clearly any procedure currently being trialled is going to raise questions in your mind as it is new. For anyone having a stage one procedure of a two stage process I find it impossible to consider why you wouldn't be aware of the risks further down the line.
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline AndrewH

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I've got to echo Lottiefox on this one.

I fully researched all the available options open to me before I went ahead with my surgery. I can't believe that anyone would go ahead with such major work to their own knee without doing their own research.
June 09 - Microfracture to MFC right knee 1.5 x 1cm
July 10 - Mosaicplasty to MFC right knee 1.4 x 1.2cm (4 plugs) plus mosaicplasty to small lesion on patella (1 plug) and microfrcature to another small lesion, also on patella

Offline kneesurgeonvictim

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I've got to echo Lottiefox on this one.

I fully researched all the available options open to me before I went ahead with my surgery. I can't believe that anyone would go ahead with such major work to their own knee without doing their own research.

I suppose you are advocating a type of 'Buyer Beware'† for knee surgery. I find that attitude a bit odd. If someone doesn't know anything at all about knee surgery or knee operations or how the knee works, are you seriously stating you think the onus is on the patient to go away and research the knee, its function, types of injury, to research operation statistics to find how successful an operation is and then objectively choose treatment? With respect your attitude is a complete joke. I was scared stiff in my consultation, and the consultant only had to mention possible knee replacement for me to get out my cheque book and cash in my life savings. If someone is paying around £15000 for two operations do you really think they should do the surgeon's work. Thank goodness you never became a knee surgeon, as I guess a lot of your patients would not have been informed of operation risks on the basis they should put in the research.

What a joker

Offline Snowy

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Quote
I find that attitude a bit odd. If someone doesn't know anything at all about knee surgery or knee operations or how the knee works, are you seriously stating you think the onus is on the patient to go away and research the knee, its function, types of injury, to research operation statistics to find how successful an operation is and then objectively choose treatment? With respect your attitude is a complete joke.

With respect, it's more of a joke that you think this is a ridiculous thing to do. A good surgeon should give you plenty of information about your surgical options, but when you're undergoing a major, irreversable procedure to one of your limbs it's an absolute no-brainer to go away and do your own research too. Of course it's not the same as an informed medical opinion, but if you're prepared with knowledge about the potential issues with a procedure then you know what questions to ask the surgeon and you're much better positioned to understand their explanation. The onus shouldn't be left entirely on the patient, and a good doctor will ensure that it isn't. However, it seems like very poor preparation to sign up for a major surgery without at least doing some basic homework on the risks, rehab expectations, and long-term outcomes.

I didn't know much about knee function before my injury, but I did exactly what you describe as a "joke": I went away and researched the function of the ACL, the risks of living without one, the risks and success rates of surgery, and the various graft options available to me and their advantages and disadvantages. I don't see anything particularly jokerish about that; it seemed like due diligence before committing to a serious procedure with a 9-month recovery.

I'm sorry that your surgeon didn't fully inform you about the risks of subsequent stages of your procedure, but I find it very strange that you wouldn't even have checked this out before committing to the first part of the surgery - and, given your own unhappy outcome, that you would denigrate others for choosing to do so.
« Last Edit: September 07, 2011, 07:40:03 AM by Snowy »
Mar 11: R Biceps femoris tear (skiing)
Jul 10: ACLr (hamstring autograft)
Mar 10: L ACL rupture (skiing)
Feb 06: L partial ACL tear (kickboxing)
Dec 03: R bone edema (motorbike)
Jan 01: R patellar chip (motorbike)
May 93: R ACL sprain (hockey)
Ongoing: bilateral PFS and OA

Offline The KNEEguru

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Hi
This conversation really reflects the current enormous cultural shift going on right now in the relationship of patients to their health carers. It has always been the case that patients put their faith in the doctor's knowledge and skills, but the situation is radically changing. I have observed with my close involvement with this site over a decade and more that doctors initially resented being 'consulted' by the 'informed patient' but with time I think they are beginning to see the informed patient as a partner in the healthcare process rather a hindrance, and are beginning to build their own better information material for their patients.

A problem is, though, that everyone's circumstances are different, and it is hard for patients scratching through the information to make the kind of informed choices relevant to their own circumstances. And with regards to the internet there are still many people for are not familiar with the internet as a research medium. I am involved with a family member with a complicated medical scenario, and I lurch from site to site trying to find out relevant information. I know that if I was sign-posted to the right specialist practitioner I would be able to short-cut this process and quickly get things into better perspective, but there just is no such specialist in my county. The contact-time with the specialist who is available is also so very short, and I find myself accompanying my family member to these brief encounters armed with a list of questions so that I can maximise the benefit of the encounter.

When contemplating surgery it is more difficult still as one has to make an absolute decision from which there is no going back.

I know there are a number of people on this bulletin board who have had bad experiences, and I salute them for sticking with us to help those members who are contemplating surgery to understand all the issues beforehand and to help put into context their own individual circumstances.

KNEEguru

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Offline Brambledog

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Hi all,

I just wanted to give my view on this as a relative newcomer to the whole surgical experience. Prior to my current experience, I had always trusted what the doctors told me and relied on their medical experience. I wouldn't say that I necessarily believed every word they said or just had blind faith, but having been brought up to believe that they knew best, I have always found it difficult to even hint towards questioning their judgement. My GP definitely didn't appreciate it when I referred to any information or opinion from outside his office. I assumed all doctors were like that and that maybe all of us patients were just being a pain in the proverbial.

It was only really after a two-year dance to finally be diagnosed a coeliac, after I had repeatedly told my doc that I thought it was wheat that was the problem and being told it was very unlikely and basically I was wrong, that I started to do my own research and to question things. Its hard to take that step of acknowledging that maybe the professionals don't have all the answers, and can even be wrong. If I had had my knee problem first I might have been more trusting than I am now.

I also think that the internet is a great source of information, but it is also very confusing and contradictory. You need a filter to get the right information out of it, and it's not an easy thing to do. One site will contradict what another says, one surgeon will have a different approach to another. It's very complicated, and very easy to just end up frightened and panicked. You want your surgeon to sit you down and shine a light through all that murk and just tell you what's what. I don't think that's asking too much of them, but these days time with the surgeon seems so short, and especially if presented with unexpected and bad news, you don't always think clearly. When proposing something as serious as surgery, I think it is a surgeons responsibility to make sure their patient knows what is involved and why they are proposing it.

Basically, the reason I and probably many others are here on KGs is that we have so many questions, and we want to hear first-hand from other ordinary people going through the same thing, in order to help us to make decisions. I've visited almost every web source on my knee problem, and although I've learnt a lot, I've also ended up with a lot of questions. I want to know what someone with my condition has had done, whether it was successful, if they would recommend it, if they wish they had tried something else instead. I've looked at all the options, I just don't know which of them might be a good idea for me!

Of course we can research things now, but it doesn't mean we come out with all the answers, just (hopefully) the right questions we need to ask of our surgeon.

I think patients who do research probably end up in a better position than those who don't, but as KG says, there are still enough people out there who for whatever reason can't or don't think of doing that research. I hope no surgeon just assumes that their patient has done that research. Now, of course I question things, and there's no way I would accept a decision of surgery without having a lot of questions answered, and having my own thoughts clarified by asking others in a similar situation. But I can see how 5 years ago I might have done, just because I thought the surgeon knew best and that it wasn't my place to question him. You live and learn.

Just my thoughts...

 ;)


« Last Edit: September 14, 2011, 10:26:11 PM by The KNEEguru »
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline elliottl73

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 I agree a good doctor should inform you however since being told I needed the same 2 stage procedure I trust my doctor. He has operated on my husband, daughter as well as myself.  I have researched online alot the doctor can't tell you everything other patients experiences can. Do your own research so you know what to ask they can't read your mind and do these things all the time to them it may not be as huge as it is for you.  Carticel sent me a huge info package as well as soon as they received my cells.This was also helpful.
 I had the biopsy 1 Sept and am scheduled for reimplantaion 1 nov.  The one thing I didn't have to worry about is cost and I understand that is a huge factor to consider and my family is very lucky in that respect.
  I have had the microfracture procedure which failed and the biopsy.  I know these are a walk in the park compared to what I am in for. Any advice?

9/2010 fell broke nose and injured L knee
10/2010 MRI† negetive
1/21/2011 diagnostic arhtroscopy woke up with MFX
8/11/2011 new MRI showed failed MFX
9/1/2011 Biopsy for carticel
11/1/2011 ACI
5/31/12 scope and microfracture again 1/2 ACI failed
9/2/12 Scheduled OATS,Osteotomy
 
Laurie

Offline Catsmum

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Re: Should full risks of a two stage procedure be disclosed prior to first stage
« Reply #10 on: September 16, 2011, 11:22:56 AM »
 The other thing to bear in mind is that often the first stage does not invariably lead on to the second stage. I have had this 2 stage procedure myself (MACI). In my case the first stage was primarily diagnostic as it was not at all clear from the MRI scan that I would be suitable for grafting. I  was  keen to have the arthroscopy as I wanted to know if I could start sports training without causing further damage. I asked my surgeon if he could take the biopsy if he felt I was a suitable candidate for MACI to save me a further procedure and he agree to this.
 I would not have expected him to consent me fully for the 2 stage procedure before stage 1 as he was not expecting to do stage 2 at that time.  I had 6 weeks between the biopsy and stage 2 to research and ask questions of my surgeon and his team. I guess I was fortunate having both procedures on the NHS so there were no costs involved :)