Banner - Hide this banner





Author Topic: Having surgery on both knees in April - pre-op advice please  (Read 1797 times)

0 Members and 1 Guest are viewing this topic.

Offline colettefl

  • MINIgeek (20-50 posts)
  • **
  • Posts: 45
  • Liked: 1
Having surgery on both knees in April - pre-op advice please
« on: March 07, 2012, 04:48:22 PM »
Hi

A bit of background - I am 39, and have had pain in both knees everyday to some extent for 18 years now.  I first sought help when I was 21 after having skiied every weekend for a whole season and had knee pain, I was told I had Chondromalacia patellae and would grow out of it.  I never did.  Over the years I have seen 2 consultants and done two lots of physio over several months each time.  Both resulted in a slight improvment for a while but then back to my 'normal'.  My 'normal' is discomfort going up and down stairs, intense pain if my knees are kept bent for any period of time whether sitting or standing or lying (I wake up with really sore knees if I happen to have bent them in my sleep although I'm quite good at not doing that now), not kneeling more than a couple of times a year when absolutely necessary as it is so sore, not squatting, bending legs to reach anything etc.  Knees also creak and grind lots and take easing out of any position they may have been in too long.  In essense it is daily discomfort that I have adapted so many aspects of my life around, and actually have a fairly big impact on my family life but not usually severe pain. 

A few months ago I woke up and was unable to walk due to intense pain in a different part of my left knee (inner side of leg below the kneecap), this led to me seeing another consultant who thought he knew my problem and just needed MRI to confirm, I was so ecstatic when I got out of there that my knees might actually be fixed!!  The MRI was not conclusive though so the consultant sent me for 2 months of physio before reviewing again.   I did the physio and have also lost 1.5stone, but the physio clearly thought that surgery was needed in order to progress further. I went back to the consultant and have agreed on surgery.

Basically, my kneecaps are misaligned and pull outwards and they think this is what is also causing the new pain in the left leg as the soft tissue is inflamed.

So, after that lengthy introduction, I am down to have what I assume is a lateral release (the consultant talked about "releasing the structures" on the outside top of both knees) and possible patellar debridement which he'll assess when he's in there.  I am having both knees done at the same time as day surgery.  Whilst I am very excited at the prospect that my knee problems may be lots better I am now also getting quite scared about the surgery and recovery.

This is what I have been told:
  • I will be operated on in the morning, and leave that evening on crutches. 
    There is a 70% chance of it fixing my problem, worst case is that I will be back to where I am now in a year's time. 
    The total recovery period is about a year but it will take 3-4 months the surgeon says until I "stop cursing him every day". 
    I should be able to drive after about 3 weeks.
    I will need lots of physio for several months.

I guess my questions are:
  • Has anyone had both knees operated on at once?  My instinctive feeling is that I'd rather have 1.5 times the pain and get it over and done with rather than wait a year for the second one to be done but I'd be very grateful for experiences.
    Are the timescales I've put above realistic? I am waiting for a date for the op but hoping for April, I have a planned holiday for 2 weeks at the end of July which the surgeon knows about.  He says if it's done in April I will be ok to go away in late July.
    What can I do to prepare for the op apart from continuing to lose weight?  Cycling hurts but I wonder whether it is worth doing as it is good for the muscles around the knee?
    I forgot to ask about anaesthetic, I assume it'd be a general?  If not, could I ask for one? Whilst I had a csection with spinal block I'm not sure I'd like to be awake when they do my knees.
    I assume I'll be sleeping downstairs for a few days when I get back?  The idea of a full flight of stairs scares me with crutches!
    Any idea how long I'll need the crutches?
    We are also planning a winter sports holiday in Feb next year, not skiing but dog sledding, skimobiling, snow shoeing etc.  I will be 10months post op then, presumably that will be ok or am I being hideously naive?
    Any other top tips or experiences?

Sorry, it's a very long list but I am writing questions as I think of them and I haven't spoken to anyone who's had the same done, so your expertise is much appreciated - thank you.
« Last Edit: March 07, 2012, 04:50:31 PM by colettefl »

Offline LKnees

  • Forum Faithful
  • ****
  • Posts: 217
  • Liked: 0
Re: Having surgery on both knees in April - pre-op advice please
« Reply #1 on: March 07, 2012, 06:46:32 PM »
What's the reason for these lateral releases? Isolated lateral releases should rarely be done. I had lateral releases on both knees and they almost crippled me. I'd be extremely careful about doing this to both your knees at once!

Offline colettefl

  • MINIgeek (20-50 posts)
  • **
  • Posts: 45
  • Liked: 1
Re: Having surgery on both knees in April - pre-op advice please
« Reply #2 on: March 07, 2012, 07:10:20 PM »
In my words (as I'm not too good at all the lingo and abbreviations), I think to release the patellar tilt which should help the kneecap slide in the groove better and also relieve the pulling on the soft tissue at the inner side of my knees.

Offline Lottiefox

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • Posts: 2393
  • Liked: 16
Re: Having surgery on both knees in April - pre-op advice please
« Reply #3 on: March 07, 2012, 07:16:40 PM »
What scans and tests have you had? Just the MRI? Do you have any cartilage damage behind the kneecap and if so, where is it and how bad is it? Isolated lateral releases *can* help but there are many people on here who have not had success with them.   you need to be VERY clear why the LRs are being proposed. In rare cases with a tilt only and no underlying rotational issues or instability issues or problems with kneecap position and tendon attachments then an isolated LR can be indicated. Even then if the damage underneath is medial as well as lateral then you could just shift the weight onto different areas of damage and still have pain. That was me. I turned down the LR suggestion and cracked on with aggressive PT, Euflexxa, Celebrex for 2 months and I'm now doing pretty well (Grade3-4 patella wear - much noise on kneecaps!).

I think this is a tricky question to answer as on here you will by the nature of the board find people who have had problems, those with successful releases are off living their lives! Can I ask where in the world you are located and what experience your surgeon has of patella issues?

I hope I haven't scared you, and I think it might be worth asking your question down on the patella femoral section of the board as you will find more direct experiences and advice. Both knees at once IS a risky strategy though, forgetting the fact you'll be totally dependent on others for a while, if the release doesn't help then you don't have a good leg to fall back on. I am 43 with pretty bald kneecaps and I appreciate the pain they cause. Have you looked at anything like Euflexxa or Synvsic injections to try and lubricate the knees again? Has your PT looked at all of the leg muscles not just quads to try and help the kneecaps sit properly? Have people shown you how to stretch out the lateral side of your leg and the calf muscles to improve that "pull" you describe? I bet your kneecaps sit like mine and I have found those things can help me.

Good luck with things,

Lottie  :)
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 colettefl

  • MINIgeek (20-50 posts)
  • **
  • Posts: 45
  • Liked: 1
Re: Having surgery on both knees in April - pre-op advice please
« Reply #4 on: March 07, 2012, 08:14:23 PM »
Thanks Lottie

I have just had the MRI, although I got called back to have it repeated with contrast.  There are no other issues, wear on the back of the kneecap but no other problems at all spotted.  In fact the MRI showed less than we were expecting for the trouble I am having, hence going to physio and some weight loss before the decision to operate.

My phsio has mainly been on stretching the iliio-tibial band, strengthening the quads and gluts.  In addition to giving me plentiful exercises, which I have done as instructed, she has tried manipulation of the knee cap, suction to release ilio-tibial band soft tissue and accupuncture.  To be honest, I have done the physio thing three times now over the years each for months at a time and the relief is limited, so I agree with the decision to operate now.

Sorry but I haven't heard of Euflexxa or Synvsic so haven't tried them. 

I am in the UK and my surgeon is Assistant director of trauma and orthopeadics at the hospital concerned.  He is close to retiring and has been an orthopeadic surgeon specialising in knees since the 1970s so is very experienced.  Other medical professionals speak highly of him.  I chose to see him privately but then he announced he was retiring from private practice but doing another year in the NHS so I will be having the operation on the NHS, hence not knowing the date of it yet.

The physio agrees that surgery is the best way forward and also advised doing both at once.  Having looked at a research study for ACL repair in both knees versus one at a time, it showed the recovery to be about 1.3 times longer and more painful than having one done, so I think I'd rather just bite the bullet and have them done together.  My surgeon tells me that the worst case scenario is being back as I am now a year after the operation, so I see the risks as pain for nothing but the potential gain being worth it.

I know forums are usually full of people who have either had problems or perfect experiences but just anyone who knows what they're talking about is great to  talk to.  Thanks also for the tip re patella femoral section, I will look over there too.

Thanks again for your reply and I hope the physio and injections carry on working for you  :)

Offline Lottiefox

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • Posts: 2393
  • Liked: 16
Re: Having surgery on both knees in April - pre-op advice please
« Reply #5 on: March 07, 2012, 08:34:18 PM »
I think if you do go ahead one of the key things will be making sure the NHS have you booked in for PT as soon as you're able to start it after the surgeries. Getting movement back in a structured way is important, although many people on here have had quite extensive swelling post LR, but everyone is different of course in how they react.

In terms of answering some of your other questions - anything you can keep doing to build up the muscles prior to the op will help. Cycling if you can cope with it, even just straight leg raises, tensing of your quads, glute bridges, hip adduction and abduction....whatever your knees can cope with safely to let you get as strong as you can. I would say you'll definitely get a general on the NHS, not a local or block. Crutches, again some people are off them rapidly but with both knees done you're probably looking at a couple of weeks at least depending on pain and swelling. Better to use them for longer and do good PT than risk falling and damaging something else! Stairs with both knees done will be interesting...I never mastered stairs with one foot out of action and used to do the bum shuffle up and down them until I could weight bear! OK in the house, frowned upon in public places so you may find lifts become a must for a while! Difficult to answer about your holiday in July - depends how well you get on; are you flying? Cramped seats might not be ideal for you but it is so hard to know. I guess I'd kind of be prepared that you might not be up to loads of walking about  every day and make sure you do your PT work even on your hols!

I hope all goes well. Have a look at the PF section as said, and also the Post Op diaries - I am sure someone recently is going through a LR recovery and making good progress.....the name escapes me.

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 Brambledog

  • SuperKNEEgeek
  • *****
  • Posts: 1079
  • Liked: 10
Re: Having surgery on both knees in April - pre-op advice please
« Reply #6 on: March 08, 2012, 01:25:53 AM »
Hi there, sorry you're here through such long-term knee pain. I can appreciate your frustration after coping for so long with the limitations and pain.

You've had some good advice from lottie, she's living with knee problems same as we all are on here and has read lots about the subject. All useful stuff and I can't add much to it!

I do feel the immediate need to urge you to get a second opinion from a younger (sorry to your OS!) surgeon and see if he agrees fully with both the diagnosis and the suggested surgery. Experience is a wonderful thing and I'm not knocking it, but lateral releases are tricky things (understatement of the year!) and thinking has changed over time.

Years ago, LRs were performed often for problems with tracking, wear on one side of the PF joint, instability issues etc, and the thinking behind it seemed sound. Many surgeons specializing in that area now rarely perform an isolated LR without very good reason. Some don't perform them at all. One surgeon on this site with a very good reputation from his patients has very strong views. His name is Dr Mark if you want to search the site for his comments.

KGs exists for support for those with problems and worries, hence many threads will have a negative edge, but even bearing that in mind there are a lot of failed LR stories compared to other types of surgeries. It can undoubtedly be successful, but if it isn't then the ramifications can be long and hard. That part of your knee performs an important job in stabilizing your whole joint, and the LR can destabilize it. You may need a revision if it doesn't perform as needed, and that could mean reconstructing or re-doing the LR itself. It can lead to other issues that lead you down the road to more surgeries to fix other problems. I don't want to panic you, I am just saying that it is a serious op, and not the 'you won't be any worse off if it doesn't work' option that is sometimes portrayed.

I have the PF arthritis grade 3/4 with the attendant fun and games, although nowhere near as long as you, and I understand you want this fixed. My OS wanted to do LRs on me at one point, but told me along with the 'worth a try' thinking described above, that I had a 30-40% chance of it working as he hoped. Not good enough reasons to cut anything in my poor knee! The mention of subsequent medial reefing if necessary afterwards to stabilize things rang too many bells for me and it has not been mentioned since. I would query that 70% statistic you were told and what it is based on.

I've only been on this site a year or so, but if there's one thing that has come up time and time again it is failed LRs. There are successes too of course, and we hear less of them because those folk are off living! But please check this out as much as you can before a surgeon who spent much of his career at a time when LRs were performed much more liberally than perhaps was wise, does this op.

I will probably be shot down in flames now lol! Please don't take what I've said as fact, I'm no expert, but do ask the questions of your OS as suggested by others, and keep asking until you are as sure as you can be. Then your decision is entirely yours and I genuinely wish you success. I really hope you get a solution to your pain and can reclaim some of what you have lost.

All the best,
Brams  ;)
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 colettefl

  • MINIgeek (20-50 posts)
  • **
  • Posts: 45
  • Liked: 1
Re: Having surgery on both knees in April - pre-op advice please
« Reply #7 on: March 08, 2012, 11:54:41 AM »
Thank you for your replies Lottie & Brams.

I have physio sorted as the insurance company agreed to pay for private physio after the op even though the op is on the NHS, so I should be able to get as much as the physio thinks I need when she thinks I need it.

I have booked an extra leg room seat for my holiday and don't expect to be running around, if I have to laze in the villa/by the pool then so be it.  I will do my exercises and it'll be warmer than here!  It's my holiday next February that I really want to be active for.

Thanks for the suggestions of exercises, I'll get on to them as much as I can.

I will have a closer look at the PF board and look at the post op stories, I have only dipped into the site so far.  Sometimes though I am prone to over researching everything and ignorance can be bliss!!!

I will look into it further though and ask more questions of my consultant.  I do overall though trust his experience and expertise and he has a very good reputation locally.

Thanks again

Offline Lottiefox

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • Posts: 2393
  • Liked: 16
Re: Having surgery on both knees in April - pre-op advice please
« Reply #8 on: March 08, 2012, 12:59:48 PM »
Hi again

I think it is good that you will question your consultant; I would ask him where does he get his 70% success rate from and what defines a success? e.g. no pain, better function, return to sports, etc etc. I would also ask him about the possibility of medial instability as an unwanted complication - when he says the 30% for whom it doesn't work are no worse off has he factored in people who might have developed medial instability (where the kneecap dislocates to the inside because the extensor mechanism has been messed with).

Its great you can get adequate physio. Many of the problems here have arisen when people have been left alone for weeks and then find they have issues that needed addressing sooner to get resolved. I'm not sure you can over research elective surgery in my view - you can certainly spook yourself with horror stories and we're not trying to do that. We're just trying to say gather as much information as you can and advocate for your own health. Surgeons are great, but they basically cut people and many of them have a set way of doing things to their thinking, not always for the best interests of the patient. That may sound cynical but its true. They don't have to live with the consequences!

Good luck and keep us posted

Lottie

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 Brambledog

  • SuperKNEEgeek
  • *****
  • Posts: 1079
  • Liked: 10
Re: Having surgery on both knees in April - pre-op advice please
« Reply #9 on: March 08, 2012, 04:55:49 PM »
Hi there,

As Lottie said, your plan is a good one overall, the physio aspect sounds great, and more research is always good. I can only stress that when planning elective surgery on your knees, ignorance is NEVER bliss. Sorry to push the point, but you only get those two knees in your life. Once that LR is cut, your knee will not be the same. It might be different in a good way, but you have to look thoroughly at the possibility that it might be different in a negative way. Because it could happen. The statement that if you have it done the worse case scenario is that you are back where you are now in a year's time is JUST NOT TRUE. If it were, the LR threads on this site would all be short and similar. They aren't. Also, good physio is so important, but it can't undo surgery if it fails.

It's not a case of trying to scare you off it, and apologies if it seems that way. It's just that most surgeons look at your knee, not you and your life. The very good ones do, but many with good reputations and long distinguished careers are concentrating on the mechanics of it and the surgical possibilities. They are not the ones who wil be living with any consequences of that surgery. That's why only you can decide this, and to do what is right for you, the more information you have the better. I wouldn't worry about scaring yourself silly with horror stories - the more you read on KGs the more rounded a view you get I think. Plenty of members have good things to say, there is plenty of positive support, and the bad results for some people all have truths in them that are worth hearing. You sound sensible enough to sort through and know what is relevant. Sadly it is not enough to believe that because a respected surgeon tells you this is right, that you can just take that at face value. He's not lying, he's not stupid, but he's not you and that's not his knee!!! A few pointed questions arising from your research of the procedure won't wound his feelings...

All the best though  :) Keep doing those exercises and good luck. I promise not to bang this drum again... ::)

Brams  ;)
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 Lottiefox

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • Posts: 2393
  • Liked: 16
Re: Having surgery on both knees in April - pre-op advice please
« Reply #10 on: March 08, 2012, 06:17:42 PM »
Just to put my final bang on the drum - if when you ask the surgeon well researched pertinent questions he gets a) annoyed b) defensive  c) looks threatened or/and d) doesn't answer them - I would not let him near me with a plaster let alone a scope and assorted tools!

good luck, keep reading, keep learning......you can never have too much knowledge about the facts of a surgery in my view. Armed with facts you can ask the right questions and make a better choice. You wouldn't buy a car without knowing all the facts about it, driving it, considering the costs, benefits, pitfalls........health is WAY more crucial than any car purchase.

Be safe and keep us posted,

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 colettefl

  • MINIgeek (20-50 posts)
  • **
  • Posts: 45
  • Liked: 1
Re: Having surgery on both knees in April - pre-op advice please
« Reply #11 on: March 09, 2012, 11:39:56 AM »
Good points again both of you, thank you.

I'll let you know how I get on.

Offline joval

  • Regular Poster
  • ***
  • *
  • Posts: 114
  • Liked: 0
Re: Having surgery on both knees in April - pre-op advice please
« Reply #12 on: March 09, 2012, 02:30:55 PM »
Hi Colettefl,
So sorry you are in so much pain.  I don't understand all the technical stuff with your condition.  I can tell you 3 years ago I needed surgery on both feet.  The rehab was long.  I opted to have both done at the same time.  What pushed me over the edge was something my doctor said.  Many patients do not come back because they got frustrated with the rehab of the first surgery and did not want to put themselves through it again.  I was happy I did both feet!
Take care.
Jo
01/12  Fell
02/12  MRI ACL tear
04/12  RK ACL recon Allograft, meniscus trim

Offline briceryant

  • MICROgeek (<20 posts)
  • *
  • Posts: 11
  • Liked: 0
Re: Having surgery on both knees in April - pre-op advice please
« Reply #13 on: March 10, 2012, 10:00:03 PM »
I'm not an expert, but I would be very surprised if they didn't do general anaesthetic.

As far as losing weight, there are ways to do that without using your legs - of course there's weight-training (you want high-reps and low weight to build toned muscle - see a physical trainer if you're not experienced with such things), however you can also do cardio with the arms only - swimming is the obvious choice, however you can also find arm cycles for example. For swimming, if you don't like moving your legs or have trouble kicking without pain, you can get a device to clutch between your legs which sort of immobilizes them - healthy swimmers also use them for training purposes. Anyways, swimming is absolutely the best low-joint-stress exercise around, if you're not a swimmer I highly recommend taking it up.

As to healing time, I've found it's better to be conservative with estimates, especially with joints. When a surgeon says 3 months, I think 4-5 months, when he/she says 6 months, I think 8-10. That's a bit pessimistic and over-simplified but overall I think doctors tend to state the best-case scenario in terms of healing-time. Or they quote the time that you will be at 80 or 90% as the time of "full recovery" and such. I'm not saying your vacations are impossible but if the surgeon says 3 months and your vacation is exactly 3 months later, I'd imagine you're going to be disappointed in your knee-health/pain levels when that vacation starts compared to what he/she said would happen. So be prepared for that if possible.

Afraid I don't know anything about your specific surgery or the prognosis. Good luck.