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Author Topic: Failed ACI 8yrs on  (Read 1417 times)

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Offline fed up nurse!

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Failed ACI 8yrs on
« on: December 16, 2009, 11:03:12 PM »
Hi all,

I've been checking this website for a while but this is my first post. I have a long history of left knee issues begining when I was a teenager when numerous dislocations. Since then I have had lots of arthroscopys with washouts, a goldwaite procedure (can't spell!), lateral release and then I was one of the first ones to have an ACI procedure. This worked well and apperently grew good cartilage. I had mild problems with pain and swelling but nothing I couldn't cope with. However, about 6mths ago I slipped and twisted my knee. Surgeons at RNOH (Stanmore) felt I'd torn my meniscus (unreleated to all previous surgery) unfortunately during this arthroscopy my meniscus was fine but the transplanted cartilage had disintegrated and there is arthritic changes in my knee. I was informed today that the only option for me is a knee replacement but the surgeons are unwilling to do this because of my age (28) so I was basically told that I was just going to have to live with it. I'm in a lot of pain and have swelling on excertion, I've been off work since I slipped as I am an intensive care nurse and the work is very physically demanding. I now just dont know what to do, it looks like I'm going to have to leave the job I love and put up with pain until I'm of an age where they would be willing to do a TKR. I'm very very fed and just can't see a light at the end of the tunnel.
I'm so sorry for this extremely long message but I had a lot to get off my chest, if anyone has any practical help or advice I would really appreciate it, Thanks!

Offline mmrocker13

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Re: Failed ACI 8yrs on
« Reply #1 on: December 18, 2009, 02:52:50 PM »
Is your damage isolated to one compartment? (i.e. medial, lateral, patellar?) Is it diffuse, or localized? How big is the area? How severe is the arthritis--what grade?

Saying the only option is a TKR is a HUGE leap--and there are a lot of other steps that could come between now and then, depending on your situation.

I would definitely get a second opinion, and a third and fourth. And if it turns out there really IS no other option, then get the TKR--you shouldn't have to live in pain.
89: Pat. dislocation, lat. meniscus tear, femoral OCD lesion
89: debridement, chondroplasty, lateral partial menisectomy
02: partial lat. menisc., debride
02: mfx
09: subtotal menisc., debride, c'plasty
10: scope/debride
10: varus DFO
13: HWR
15: total menisc., debride, c'plasty, notchplasty

Offline kscope09

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Re: Failed ACI 8yrs on
« Reply #2 on: December 18, 2009, 03:42:01 PM »
I've never understood why younger people have to live in pain and wait for tkrs when until they are older.  If the replacement wears out in 10 or 15 years can't they just have another?

I'm sorry to hear about your situation, it really sucks, but there must be something out there as asmmrocker say's.
Feb 08 Inurred right knee
18 months of physio, knee tracking but knee still painful
Aug 09 Scope - Small tear in acl, fragment found in postereo-lateral compartment, suprapatella and lateral plica and small defect in mfc.
May 10 Right knee feeling better but left knee causing trouble as a result o

Offline fed up nurse!

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Re: Failed ACI 8yrs on
« Reply #3 on: December 18, 2009, 08:24:09 PM »
Hi, thanks for your replies. I would have thought that there would be other options too but this is what the surgeon told me at the out patients. I'm afraid I don't know any of the details that u asked regarding the amount of damage etc. I was very upset at the appointment and didn't have anyone with me to ask the appropriate questions.

Although I'm a nurse I'm not very good at questioning the drs, even though I always advise people to do that!

I have a lot of faith in the surgeons at Stanmore but it does seem daft to me that ithis is the only option, especially as they seem so unwilling to do a TKR, and I have to say I'm not keen on that idea but if it helps......!

Offline fed up nurse!

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Re: Failed ACI 8yrs on
« Reply #4 on: December 18, 2009, 08:26:59 PM »
Also, how would I go about getting a second opinion, Stanmore is well renowed and Im a bit loath to get to a district general as in my experience that are a bit too scapel happy!

Offline fed up nurse!

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Re: Failed ACI 8yrs on
« Reply #5 on: December 18, 2009, 08:30:44 PM »
Just thought, the damage must be more than 12cm, if thats possible because the criteria for ACI states that the damage must be less than 12cm and the drs specifically said another ACI was not possible because of the extent of damage

Offline mmrocker13

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Re: Failed ACI 8yrs on
« Reply #6 on: December 18, 2009, 10:11:48 PM »
Hi, thanks for your replies. I would have thought that there would be other options too but this is what the surgeon told me at the out patients. I'm afraid I don't know any of the details that u asked regarding the amount of damage etc. I was very upset at the appointment and didn't have anyone with me to ask the appropriate questions.

Although I'm a nurse I'm not very good at questioning the drs, even though I always advise people to do that!

I have a lot of faith in the surgeons at Stanmore but it does seem daft to me that ithis is the only option, especially as they seem so unwilling to do a TKR, and I have to say I'm not keen on that idea but if it helps......!

First, I would want to see my films. Along with that, get MRIs, copy of your scope photos, surgical notes, everything. Then, I would ask for a detailed description of the damage. Size of the lesion, grade, and location.

Then, I'd start googling orthopedists in your area and calling to get appointments--if y ou can find ones who work with athletes, even better (IMO, they tend to be more willing to take measures that will help you keep as much of your joint as they can...while getting rid of your pain.)

Telling someone "A TKR is the ONLY option" without giving them any details as to why, what other options MAY have been available and why your case does not meet them, etc. is like someone going in for a checkup, having the doc check their BP, and saying "You have high BP. You need a triple bypass."

What about things like an unloader brace? Or even an osteotomy? (Again, since we don't know where/what extent your lesions are...hard to make suggestions, but...)
89: Pat. dislocation, lat. meniscus tear, femoral OCD lesion
89: debridement, chondroplasty, lateral partial menisectomy
02: partial lat. menisc., debride
02: mfx
09: subtotal menisc., debride, c'plasty
10: scope/debride
10: varus DFO
13: HWR
15: total menisc., debride, c'plasty, notchplasty

Offline Lottiefox

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Re: Failed ACI 8yrs on
« Reply #7 on: December 18, 2009, 10:50:43 PM »
Hi there

I'm really sorry to hear that your knee is in such a seemingly bad way. I'd agree that you need to get EVERYTHING you can regarding what they have found and what the docs have said to you so far. I can empathise with being so blown away by what an OS calmly tells you that you just don't process anything and forget to ask the details. Was there about 3 weeks ago and left the office blubbing whilst my husband tried to get some more answers! Go back and get the MRI scans, details, recommendations etc and seek out a second opinion (I'm UK based so can't help with how you do that I'm afraid). OK, so if they think a TKR IS the only option then you need to push for why, and what other suggestions there may be. being young doesn't necessarily rule you out of the procedure - telling someone at your age to live with the pain and giving up their career is just not aceptable in 2009. There are also partial joint replacements, re-alignment procedures etc that a good surgeon could talk to you about. Replacing a joint fels like the scariest thing in the world. I know, I've been told there is a good chance I'll need something sooner rather than later and I've just left my 30s and was a fitness instructor. BUT - living with constant pain and losing your job and happiness isn't an option IMO. My OS is of the view that even though I'd be relatively young, waiting another 20 years in pain without being able to walk downstairs properly wouldn't be an option. Thats what you need to seek out, a specialist who sees you for YOU, not just another knee. Hard to find them, but they do exist.

I hope you find some answers soon. Knee problems are just the pits but there is light out there, its just darned well hard to find at times.

Lottie x
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 fed up nurse!

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Re: Failed ACI 8yrs on
« Reply #8 on: December 19, 2009, 01:46:02 PM »
Once again thanks for your replies, the more I think about it the more annoyed I am now, you're right they were wrong just to fob me off like that. It kind of makes me think maybe they don't believe me about the level of pain and how this is affecting my career. My husband thinks that the hospital are trying to save money by sending me on my way. What they fail to realise is I work for the NHS so the longer I'm not working the more money it's costing the NHS (I should be working in the private sector, I might get more preferencial treatment then!)

I will definately request all my notes etc and try and find a second opinion, if anyone has any good recommendations I would appreciate it, I live about 15 miles out of London so I'm sure there are plenty of options.

It's so nice to speak to other people who understand my frustration and can offer me pratical solutions so thank you xxx

Offline Lottiefox

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Re: Failed ACI 8yrs on
« Reply #9 on: December 20, 2009, 07:25:56 PM »
D'oh i hadn't realised you were Londonish based. I got a second opinion from the consultant at the London Knee Clinic at London Bridge, Glynn Evans. He is on this site as one of the recommended folks and he was a very measured individual who took time to explain things and was very "human". The first OS I saw was an arrogant man with the bedside manner of a serial killer. There is also a guy at Southampton who specialises in partial knee replacements and younger patients, called Professor David Barrett - I only found him through google but his website and CV look impressive and he appears to understand that people who are in pain at 20-30 don't want to wait til they are 60 for a solution. I am considering seeing him although at the moment I am fairly clear what the surgical options are and am thinking of not rushing down that road. i have no doubt I'll need new parts though way before I am 60 so he might be a possible source of information. There are also other UK surgeons mentioned by folks on here who have had excellent results, someone in Ipswich I think and also someone else, Villar? I may be wrong but that rings a vague bell.

Knee pain and reduced mobility when it gets bad is the pits. Being told you've got extensive arthritis is also just so disheartening as it just seemed to light up a long road in front of me saying "welcome to a world of deep heat and parking next to Tesco and never doing another Boxercise class". I understand exactly how you feel right now. I was 2/3 of the way through a personal trainer's course and am now sidelined.

One other thing I'm looking into is the use of stem cell and/or PRP and/or prolotherapy. There is a lot of information in the Injections forum on here and it seems to be a positive way forwards that has brought some folks real results. Being the UK we are a bit behind and the NHS certainly isn't even thinking of such options but I'm willing to look at most things if it means I defer scalpels and get my knee even back to 70% function.

Stay strong and feel free to PM me if you want to compare crappy knee functions!

Lottie xx :D
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....















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