Advertisement - Hide this advert





Author Topic: In memorandum of my knee left behind.  (Read 1196 times)

0 Members and 1 Guest are viewing this topic.

Offline JTB

  • Regular Poster
  • ***
  • *
  • *
  • *
  • Posts: 54
  • Liked: 6
In memorandum of my knee left behind.
« on: January 09, 2013, 04:12:44 PM »
Nough said, thx for reading and comments. Time to heal
« Last Edit: January 25, 2013, 01:19:30 AM by JTB »
Bike racer electing sport-med scope Jan 2011 for patella catch: shave patella, MFC and trochlea (with sneaky lateral release) Grade 3 findings. @ 1 year, CRPS, pain inhibition, muscle atrophy, osteopenia, sudden bilateral chondromalacia. in free-fall 2 1/2 years.
Today on Strava riding well.

Offline Lottiefox

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • Posts: 2393
  • Liked: 16
Re: In memorandum of my left knee behind.
« Reply #1 on: January 09, 2013, 10:33:15 PM »
JTB

I am so sorry that this scope has brought more difficulty. I shall reply more in due course as time is limited and my bed is calling me, but someone once said to me about surgeons "If all you have is a hammer everything looks like a nail". Surgeons vary tremendously in both their surgical skill but also their ability to provide genuine follow up and diagnosis of issues and know where to go. I see the same in my work with clients with an acquired brain injury. Their neurosurgeon discharges them as recovered and functional - to them that means they are breathing on their own and any clinical issues like a bleed, craniotomy and so on are stable. When I see them it is so clear they are NOT recovered!!! Surgeons see their world through their surgical criteria and that doesn't always mean we get the right plan or treatment when things don't work out. Chuck in your own body misbehaving with something like CRPS and what a fun packed schedule you present with.

I think that for every scope or anything else that goes badly there are of course people making amazing and full recoveries. Boards like these tend not to be so full of them as they are (thankfully) off living happy lives with surgical success. I do recall a surgeon saying to me about a procedure that consisted of OATS and ACI and extended rehab that even if it failed "I'd be no worse off". Even then, 4 years ago I found it hard to believe I would be super happy with two surgeries (one open and involving extensive ACI) that didn't have the desired outcomes. They often tend to see things in such a black and white way - maybe that makes them good cratfsmen in the theatre but it doesn't always mean they have the people skills or even the wish to investigate. My foot surgeon is a genius in what he's done to my foot, no complaints, but he dismissed CRPS as transient and told me it would resolve. Hmmm. It certainly has improved but it is still there 2 years on!!  ::)

Anyway I have written more waffle than planned! What is happening with your knee now?

Take care

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 JTB

  • Regular Poster
  • ***
  • *
  • *
  • *
  • Posts: 54
  • Liked: 6
Re: In memorandum of me knee left behind.
« Reply #2 on: January 10, 2013, 04:35:05 PM »
Hi Lottie,

I feel most days as if my knee was smashed with a hammer and by someone who was very good at swinging a hammer! Hopefully in the bigger picture, the ratio of successful patella chondroplasty to failure is better then 1/1 : (


I think I have found a group of OS' that are better fit and we seem to be making slow progress. 

                                                   Thanks again for your support and suggestions.
« Last Edit: January 13, 2013, 01:55:39 AM by JTB »
Bike racer electing sport-med scope Jan 2011 for patella catch: shave patella, MFC and trochlea (with sneaky lateral release) Grade 3 findings. @ 1 year, CRPS, pain inhibition, muscle atrophy, osteopenia, sudden bilateral chondromalacia. in free-fall 2 1/2 years.
Today on Strava riding well.

Offline RLE

  • Forum Faithful
  • ****
  • Posts: 361
  • Liked: 7
Re: In memorandum of my knee left behind.
« Reply #3 on: January 11, 2013, 04:08:28 PM »
In a year and a half on here I've read either 3 or 4 positive outcomes on lateral release and several dozen poor ones yet there are still people on here who defend the procedure. I've come to the conclusion that there are a handful of ortho surgeons in the world who know anything at all about patellofemoral issues.
Accident 2011: permanent dislocation, hole under the patella, bone fragments/debris embedded, scar tissue, 3 torn ligaments, fracture, cartilage sheared off, contracture,
2011 MUA
PT on-going
2012 MPFL reconstruction,TTT
        TTT
        Lateral lengthenin
        Arthroscopy/clean out
Thx Dr. T

Offline allyd

  • SuperKNEEgeek
  • *****
  • Posts: 678
  • Liked: 34
Re: In memorandum of my knee left behind.
« Reply #4 on: January 11, 2013, 05:56:16 PM »
Awards are arbitrary at best IMO, and the criteria they use as a success is much, much more narrow and controlled than the subjective view of the patient. And I can honestly say I’m okay with that. If success was defined based on when the patient said ‘yup, I’m good’ there would be no control to the data. We may not understand the arbitrary criteria, but as with any industry, I also don’t understand the arbitrary criteria that goes into say the Academy Awards. Let’s be honest most of us will never watch (and enjoy) ¾ of the movies nominated for best picture… They should maybe do a peoples’ choice awards for doctors… but well… on second thought… Looking at the ‘winners’ of the People’s choice awards… Zac Efron for best dramatic Actor? Well, as you can see – there are pros and cons to both ideas.

They do their best to train residents to be caring, compassionate, etc – but the “program or procedure” for this is simply called being human - personality, people skills, and humanity are not required to be a doctor… a good one or a bad one. Technically they may be a great doctor (see awards, publications, etc), but may lack in other areas. We need to realize that they are just that, human… I think we all have shortcomings in our personalities/professions and work better with some people than others.

Point being, I truly do think it is important to find an OS that matches your persona. XY doctor may come well recommended and have been a great doctor for someone else. But if you can’t relate, or communicate well with them… it may not be the best care for YOU. But also realize the next person may have a personality type that works well with that doctor and will find success in working with them. These are the ‘small’ yet ‘large’ factors that are not constant from one patient to the next. 
04/09 RK - Dislocated Patella & Grade III MCL Tear
06/10 RK - Re-Dislocation Patella
09/11 RK - MPFLr + Lateral Lengthening

Offline JTB

  • Regular Poster
  • ***
  • *
  • *
  • *
  • Posts: 54
  • Liked: 6
Re: In memorandum of my knee left behind.
« Reply #5 on: January 11, 2013, 09:09:37 PM »
ALLYD,

I'm glad you got that all off your chest, I hope it makes you feel better. I think you grossly misunderstand and misrepresent my points and arguments. Hmm, let me count the ways I disagree? I don't have the time. Why bother?
Bike racer electing sport-med scope Jan 2011 for patella catch: shave patella, MFC and trochlea (with sneaky lateral release) Grade 3 findings. @ 1 year, CRPS, pain inhibition, muscle atrophy, osteopenia, sudden bilateral chondromalacia. in free-fall 2 1/2 years.
Today on Strava riding well.

Offline allyd

  • SuperKNEEgeek
  • *****
  • Posts: 678
  • Liked: 34
Re: In memorandum of my knee left behind.
« Reply #6 on: January 11, 2013, 09:55:47 PM »
And you have also obviously misunderstood and misrepresented the points of my post. Especially since I pretty much agreed with you on all your major points (expounded a bit, with some sarcasm and humor - much like you), right down to the fact that you have now found a doctor that you like, cares, and is better suited to help you. I strongly believe this is a huge component in success above and beyond awards, publications, etc. and I wish you the best of luck with it.
04/09 RK - Dislocated Patella & Grade III MCL Tear
06/10 RK - Re-Dislocation Patella
09/11 RK - MPFLr + Lateral Lengthening

Offline JTB

  • Regular Poster
  • ***
  • *
  • *
  • *
  • Posts: 54
  • Liked: 6
Re: In memorandum of my knee left behind.
« Reply #7 on: January 12, 2013, 01:10:10 AM »
ALLYD,


You're right, including the patients "Yup" in a surgical rating criteria makes about as much sense as quantifying outcomes solely as the quotient of surgical volume and infection ("sarcasm"? but you say, "you're OK with that criteria")? That's fallacious reasoning. For the sake of moderate argumentation, let's imagine a formula that introduces some measure of patient functionality and real world interest in outcome. A category somewhat more sophisticated, empirical and quantifiable than the "Yup."

       
Bike racer electing sport-med scope Jan 2011 for patella catch: shave patella, MFC and trochlea (with sneaky lateral release) Grade 3 findings. @ 1 year, CRPS, pain inhibition, muscle atrophy, osteopenia, sudden bilateral chondromalacia. in free-fall 2 1/2 years.
Today on Strava riding well.

Offline allyd

  • SuperKNEEgeek
  • *****
  • Posts: 678
  • Liked: 34
Re: In memorandum of my knee left behind.
« Reply #8 on: January 13, 2013, 04:40:27 PM »
To clarify my point, surgical succes criteria, is likely very different (or at least more inclusive) than what some arbitrary award may consider for criteria. And in regards to specific procedure success, yes, I support minimizing subjective data w/in the scientific method, which is what any good scientist/researcher would do. It allows me as a patient researching potential procedures to trust the data and know it is absent emotion.

Realistically, most researchers do just what you are referring to. (these are the people developing sucess/failure criteria) In a very controlled survey they look to quantify/assess pre and post-op functionality. Google KOOS knee survey.
04/09 RK - Dislocated Patella & Grade III MCL Tear
06/10 RK - Re-Dislocation Patella
09/11 RK - MPFLr + Lateral Lengthening

Offline Brambledog

  • SuperKNEEgeek
  • *****
  • Posts: 1079
  • Liked: 10
Re: In memorandum of my knee left behind.
« Reply #9 on: January 13, 2013, 05:30:55 PM »
Hi JTB,

Phew. Where do I start? Apologies at the following vent-like ramblings. I know some of how you feel, minus the awards bit (none that I know of anyway, maybe I should check...). My 'simple' arthroscopy was thrown into the mix of my unknown knee problem with little more gravity than the MRI, but like you has left me with CRPS. That has now spread to my foot, thigh and whole left leg. I hear you on the hammer thing.

I can't blame my surgeon specifically because I have no knowledge of how difficult it is to perform an arthroscopy WITHOUT catching or otherwise damaging a nerve, but the thing has left a bitter taste that I suspect will linger. I was told several times that he was 'the best knee surgeon' in my area, and I was in 'safe hands' etc etc. but what does that really mean for a patient? The same surgeon (before he realised my continuing problems were CRPS) wanted to perform a subsequent LR with medial reefing (?) - when I asked about his thoughts on my chance of success (already knowing thanks to KG that LRs were a major deal), he said about 30-40% but I would be 'no worse off' if it didn't work. Alarm bells aplenty. I declined.

I don't know. I suppose the sad truth is that 'most' surgeries are deemed successful, including both yours and mine, presumably, and yet we (hopefully the minority) are left in a worse state than before. I suspect that the criteria for success are hazy and manipulated in favour of success - after all, the NHS in the UK need their surgeons to look good, and all surgeons need their success rates to be as high as possible...

Bitterness isn't healthy, but it is natural. If I had recovered well from my arthroscopy with its biopsies and major shaving episode, I accept that I probably wouldn't have requested all my notes, and would not then have much cared that the surgery was carried out not by my surgeon but by one of his 'team', while the guy i was distinctly told WAS doing my surgery was 'unscrubbed in theatre'. When it goes wrong, the system stinks a bit, and I suspect that the CRPS beast vastly complicates 'recovery'. You learn fast, and I will never be so naive again. Bit late tho!

Hey ho. I try not to look back now, but when moving forwards is so far eluding me and my physio, it's hard not to sometimes. Boredom is my enemy now, so I try to keep occupied and cheerful when the CRPS allows... ::)

Good luck JTB, keep  :)

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 noradaexplora

  • MICROgeek (<20 posts)
  • *
  • Posts: 19
  • Liked: 1
Re: In memorandum of my knee left behind.
« Reply #10 on: January 13, 2013, 07:00:07 PM »
JTB--Just wanted to say that I really feel your pain.  As I've posted here before, I had a lateral release back in 2002 as a high school athlete and have never been the same since.  It ended my running career essentially.  After a few years I got into cycling and was doing that quite seriously up until now, when the effects of the lateral release started to really catch up to me.  My right quad has never been the same since the surgery, but I have managed to push through quite a bit to accomplish athletic goals despite everything.
I had my knee scoped 2 months ago before realizing that what I really need done is a repair of the release.
All this to say, I understand how tough it is to go from being a serious athlete with a slight knee problem to having a surgeon suddenly set you waaay back with his idea of a "fix."
I'm sure you will get through this, just keep pushing and know that it may take longer than you want it to.  But I'm sure you will get back to a level that makes you happy.

Offline JTB

  • Regular Poster
  • ***
  • *
  • *
  • *
  • Posts: 54
  • Liked: 6
Re: In memorandum of my knee left behind.
« Reply #11 on: January 13, 2013, 08:55:45 PM »
Brams and Nora,

Thanks for the support and sharing your experiences, you've both made my day. It's a tough deal for lots of folks here, but that doesn't mean we can't keep trying to better our knees and ourselves.

                                                    Thanks again, Ed
Bike racer electing sport-med scope Jan 2011 for patella catch: shave patella, MFC and trochlea (with sneaky lateral release) Grade 3 findings. @ 1 year, CRPS, pain inhibition, muscle atrophy, osteopenia, sudden bilateral chondromalacia. in free-fall 2 1/2 years.
Today on Strava riding well.

Offline Elle0383

  • Regular Poster
  • ***
  • Posts: 57
  • Liked: 2
Re: In memorandum of my knee left behind.
« Reply #12 on: January 13, 2013, 11:44:55 PM »
Sorry to hear about your troubles.  Like RLE said, there are definitely more negative stories than positive on here regarding the lateral releases.  I've dealt with knee issues most of my life and have found that while pain definitely affects quality of life, a lack of mobility frustrates me even more.  I don't like to be held back.  Considering your activity levels before surgery, I can imagine this is very difficult for you. 

Do not lose hope, though.  Find yourself an OS that you feel you can trust.  While awards and professional accolades means the surgeon has *hopefully* some competency, I based the majority of my decision on word of mouth.  I live in a pretty large city, and I kept running into people who mentioned the same name over and over again, everyone from surgical assistants, nurses, doctors, a cashier at a store who noticed my knee brace--it was almost uncanny.  Even another surgeon who I sought a second opinion from, told me that while he would be happy to work on me, the other surgeon was really an expert in this field.  A Google search also revealed only positive patient ratings.  Also, listen to your gut.  In the end, I decided that there was no one else in the world that I trusted to work on my knee, and if my surgery failed, either she could fix it, or a stable knee just wasn't meant to be for me (my major issue was a dislocating patella).  I had that much faith in my OS. 

I am about 2 months post-op right now (I had a lateral lengthening which is similar to a lateral release, along with other work).  It's been a hell of a journey, but it's been going in the right direction.  I knew it would be a gamble, and if down the road my knee dislocates again, I will be devastated, but I won't regret my decision to have surgery.  It was the only shot I had at a better quality of life.

Your situation sounds a bit different than mine, as you were actually very active prior to the surgery.  I gave up running at 18, and prior to surgery, I had issues with even walking (I'm nearing 30).   For me, it was a no-brainer--I reached what I considered rock bottom.  You had a lot more to lose, and if I were in your position, I would have all the same feelings.  I can't image how defeated you must feel, however, do not give up.  You are not a loss cause.  The first part is to get the right OS.  The second part is to get the right treatment.  My future mother-in-law was a very active lady until she started having crippling knee pain.  In the end, she had a partial knee replacement, and is now back to biking 30+miles a day (she's in her 60's).  Part of that may be luck, but the other part is having a good surgeon who chooses the optimal solution for your knee.   

Lastly, it is amazing how nice it is to actually have your feelings validated by people who have been through the same or similar situations as you.  A large majority of the posters on this site are here to help one another, share stories, offer sympathy and support, etc.  I found this very helpful as I was gearing up for my surgery last fall and also during my recovery, as no one in my life *really* understands both the mental and physical toll.  One person who was especially helpful to me was Allyd.  I read her comment in response to your post and did not sense any malicious intent or judgment on her part, and felt she was validating your points that professional awards can sometimes be misleading.  Please consider that it may have just been a miscommunication.  We really are all here for each other.

Best of luck to you, and I hope you are back to your active self again.
11/2012 LK - TTO+MPFL Reconstruction+Lateral Lengthening