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Author Topic: Lost, Depressed - need help  (Read 14644 times)

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Offline thommo404

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Lost, Depressed - need help
« on: September 13, 2012, 06:11:26 AM »
Ok here goes.

I had my last patella dislocation in March 2011 whilst at work.  The suregeon went conservative first and after trying very hard with PT I had a MPFL on 6th June 2011.  Again back into PT and it was very slow going.  In November 2011 I changed physios and also had cortisone injections as I had started to get a bad sharp pain behind the kneecap.  I had only reached a maximum of 115 degrees of flexion.  That did not help at all.  By the time March 2012 this year the pain behind the patella when I bent it or tried to crouch, climb stairs etc got worse.

Had an MRI and it found a small flap on the kneecap and grade 2 chondromalacia.  So in July this year I had a scope with a clean up and the OS thought that would work.  He said it was actually grade 3 when he got in there.  Cleaned it all up and thought it was ok.  Checked everything else while he was in there as well.

Now 8 weeks post op I still have that same pain behind the patella and it is driving me nuts.  I had an ultrasound with cortisone injections 7 days ago and it has not worked at all.  The man who did the injections and ultrasound suggested it may be necrosis in the kneecap.

What do you guys think?  I am over this.  It has been 18mths.  I just want to move on.  If it is the fact it is too bad it won't let me back to work I am prepared to deal with that. 

I am at the point I am ready to ask for a patella replacement.

thommo404

Offline Brambledog

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Re: Lost, Depressed - need help
« Reply #1 on: September 13, 2012, 09:45:59 AM »
Hi Thommo,

Well that doesn't sound like fun at all. Sorry things haven't gone as planned Nd you're left with the pain and not knowing which way to go next - i had that situation myself and I know it's pretty miserable. It's also scary how quickly time rushes by and before you know it you've been off work a year, in pain for longer than that, and struggle to remember your last 'normal' day. I think sometimes these surgeons don't think of things from our side of the fence at all!

I wouldn't rush into another procedure until you know for sure what went wrong with this one. are you having a new symptoms since the op or the continuation of the old ones? is the pain day to day worse now than before the op? Did your surgeon give you a recovery time and are you outside that now? What does he think of your knee now? Sorry about the questions!! If your surgeon can't come up with some answers and a plan then I'd think about getting a referral to another for a second opinion ASAP. All these things take time, as you know all too well, so if you've got any doubts about him then I'd go for it.

I don't know that much about a MPFL op so I'll leave comment on that to those that do. Cortison injections aren't that reliable from my own experience and a couple of surgeon's comments - they work in some cases, not in others. Grrrr.

Hope things improve quickly, and take care of yourself in the meantime. Life and work might have changed for now, but you're still you under all this crap, and you'll get out the other side of this. It's so much easier to adjust to a change in your life if you have answers and explanations for things, being left in the dark is so frustrating!

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 RLE

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Re: Lost, Depressed - need help
« Reply #2 on: September 13, 2012, 03:56:17 PM »
I know the pain behind the kneecap you're talking about. I'm wondering if the problem is that you don't have enough cartilage and that's causing the pain. What I know if it's only in spots they can replace the cartilage with grafts but if it's thin or gone all over then it requires a replacement. You should see another surgeon who specializes in patello-femoral issues and get another opinion.
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 thommo404

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Re: Lost, Depressed - need help
« Reply #3 on: September 18, 2012, 08:08:36 AM »
Ok so I got a call from the OS's office yesterday and asked me to go from some other scans if I was still in pain.  Which I am.  So I had blood test's yesterday and today have gone for a SPECT - CT.  Just picked up the results and have copied them below.  Can anyone tell me what they mean.  I am guessing there isn't much wrong inside my knee so I am guessing all the pain must be in my head?

There is no abnormal vascularityin the left knee compared to the right.  In the delayed planar images, there is mild increased uptake in the two foci in the left patellofemoral region one medially and one at the central portion.  On SPECT CT, the central focus correlates with a small cortical defect at the site of previous screw in the inferior part of the patella, possibly related to ongoing bony remodelling.  Mild increased uptake is also seen in the tibial tuberosity at the site of tendon attachment.

Comment:
The mild focal increased uptake in the left patella inferiorly at the site of previous screw is possibly related to ongoing bony remodelling.  Tracer uptake elsewhere in the left knee is unremarkable.  There is no evidence of significant patellofemoral arthritis.

So what does it all mean?  Am I just imagining the searing pain in my patella when I bend it?

Offline Brambledog

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Re: Lost, Depressed - need help
« Reply #4 on: September 18, 2012, 09:12:47 AM »
No, you're not imagining that pain. Just because they don't think you 'should' have it, doesn't mean it's not there... :-\

From the conclusion, it sounds as though the radiographer doesn't see a major issue in there. BUT. I know from my own experience with this that these sort of conclusions can sometimes be confusing. My initial MRI apparently showed up 'nothing' and was 'clear', so they did an arthroscopy and found grade 3/4 in my PF area. When I requested all the notes and MRI afterwards, the report said 'non-full thickness fissuring' which can mean a lot of things, but I would have thought that that report, plus my symptoms, indicated that it probably was a PF issue - ie, not 'nothing'. When I saw the MRI and compared it to images online (I know, I know...) I thought you could see more. Hmm. But I'm not a trained radiographer so I shouldn't speculate. I also know that my own surgeon has referred to my MRI results very differently on two occasions, so I think it's easy to get confused and lost in the madness.

The main thing is that the pain is still there. It is bad. It is consistent day-to-day. And you have been doing your physio and recovery stuff properly.

Patella femoral pain can be very nasty, I have it myself and know how miserable it is. All you can do is keep pressing for an explanation/answer and make them take the pain seriously.

Good luck!

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

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Re: Lost, Depressed - need help
« Reply #5 on: September 18, 2012, 09:44:36 AM »
What state are your leg muscles in after all of this? Even with a small defect on the patella, loss of muscle balance and strength can make pain much much worse than it "should" be as the patella isn't being moved about properly and consequently all the bits that might be a bit worn pinch and hurt really badly. 8 weeks post scope for clean up isn't *that* long if you've got issues that predate the scope that might have affected the muscles etc. I have PF wear - grade 3 and 4 on most of the kneecaps but with diligent PT I was able to reduce the hideous pinching feeling when I bent my knee with any weight on it as now my kneecap is being supported much better. Not perfect but better.

Do you have a decent PT guiding you through this? Have you been checked for any issues with alignment of the kneecap and/or the underlying bones? I know the MPFL will have hopefully addressed one aspect of dislocation but there can be others. The only other thing is that with limited flexion could your MPFL graft be to tight? Have you asked the OS that....too tight a graft could cause pinching/pain.

Good luck, hope you get some answers soon

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 thommo404

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Re: Lost, Depressed - need help
« Reply #6 on: September 18, 2012, 10:50:06 AM »
Yeah my surgeon is taking it seriously and made calls to get me in early for the cortisone needles and then again yesterday to get me in for the SPECT CT again today.  He has said he knows I am not just whinging and putting it on but he just isn't sure what it could be.  He is trying all he can.  I am off for a second opinion in a couple of weeks just to see.  You never know if he may have missed something or the other OS may have seen something similar.

I am back to see my OS in 2 days so will see what he says.


My PT is great.  He is the former PT for the Brumbies rugby team here in Canberra.  The only thing that bothers me is he says that if there is nothing structural inside then we will just have to work through the pain.  Not sure I can do that cause it is close to making me pass out when I feel it.

I really am over this.  I have been offered an awesome job at work but can't do it if I can't get back to full fittness.  I am missing out on a heap of trips away with work because of it.  We are building a new house and we are having to plan to get people in to do things instead of me doing them so that is costing us money.  Yes I am on workers comp so it is all covered but it sucks cause there is no end in sight.

Offline Brambledog

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Re: Lost, Depressed - need help
« Reply #7 on: September 18, 2012, 01:48:40 PM »
It's so miserable, I feel just the same sometimes! Try not to get bogged down in it too much though, there are options even if things don't improve the way you hope. Speaking personally, I really struggle still with the life changes that have happened this last two years. I used to play a lot of tennis and was chair of my club, and I've had to give that all up. I lost my job as I just couldn't do the type of work (it was all walking, kneeling, lifting, stairs, standing for hours, etc... ::)) and after the minimal statutory sick pay ran out that was it financially, and we're struggling. I've started a tutoring business but that's still early days, and these days no one wants to spend cash if they can get away with it.... Your workers comp sounds like a great safety net to have for now. I know it's awful that you can't do the things you used to, but things could always be worse!

I think it's useful to think about what you might do IF your knee doesn't improve for now. At least then you're prepared for making hard decisions about work and stuff if they come. It doesn't mean you've given up, just that you're thinking around the problem. It's horrible not being able to play your part in life like you did, i feel the same way as a mum of two daughters. I just can't dash up the stairs fifty times a day like I used to... ;D

Take care of yourself generally, eat healthily and do all those boring exercises. The rest of it depends on what damage there is in that knee, and what your surgeon decides to do! It sounds like he's well and truly on the ball, always an advantage, lol. You are so lucky having a great surgeon and PT to work with!

I'll be hoping things improve for you soon. Keep smiling whenever possible :)

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 thommo404

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Re: Lost, Depressed - need help
« Reply #8 on: September 18, 2012, 02:15:57 PM »
Thanks Brams.

Yeah I am prepared to make the tuff decision if it comes to it.  Just to explain I am with the police and it was a training accident that did it.  So I can't be operational again if it is not 100%.  They are looking after me and yes workers comp is a blessing.  Certainly couldn't have done it without it.  I have 2 boys 9yo & 3yo and it is sad when my 3yo tells everyone about dad having a sore knee.  That is all he has really known me as.  It sucks.  I can't coach my 9yo's footy team, I hurt myself in March 2011 and in the Dec before that I was the fittest I had been in a long time and had just raced my best Ironman triathlon.  So I really miss my riding.  Sounds like torture to some but I miss my 4 or 5 hour rides of a saturday morning.  That was my relaxation time.  Time to think and zone out.  It was my time to get away from the family for the week.  My wife has hers where she goes for lunch or dinner with girlfriends but that was mine and I really miss it.

I am seeing a councelor to help me out with the mental side of it cause I am suffering from depression.  My wife is amazing.  I don't know how she is doing it.  She has to do so much more with me being like this.  And I don't sleep that well cause of the pain so I can be twice the pain in the butt for her!

To answer domeone elses question.  This pain started about 7 months after my MPFL reco.  I was on the verge of starting to run again with my PT when it started so my muscle strength was quite good.  But now the pain has not changed since the scope 8 weeks ago from what it was before the scope but yes my quad has melted away quite a bit.  I know that isn't helping but it is so hard to build it up when I am in so much pain.

I will let you know how it goes on Thursday.

Offline Lottiefox

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Re: Lost, Depressed - need help
« Reply #9 on: September 18, 2012, 02:55:44 PM »
Yuck, what a frustrating situation. I can empathise with the change in ability too....I have not had surgery on my knees but PF issues kicked off as I completed a fitness instructing course and was poised ready for a career change.....I too miss my runs (albeit I was slow!) and being able to jump etc. BUT over time I've built up a lot of function and am now probably stronger in my legs than I was before. I still can't do the high impact stuff I used to love but I have adapted....I understand the depression side of things, I struggled for a good while too. I then had foot surgery to fuse a worn out toe joint and developed CRPS in the toe and the ones alongside it. It never rains.....etc etc...repeat....

Hang in there. It sounds like you have a great team on your side and a great attitude and support system. July isn't that long for the scope and if they scraped about with your kneecap then you are probably still settling down inside. I found Euflexxa injections have really helped my kneecaps, seem to be like an oil change and they've allowed me to return to spinning, weights etc.

I guess if they find the sharp pain is due to a focal cartilage defect you have options for repair.......injury related trauma is much easier than generalised pooped out kneecaps like mine. People on here have had success with grafts on the kneecap, things like MACI or De Novo are showing promising results. Or it might just be that you need more time. I am 2.5 years on from my knee crisis and finally feel strong. Sometimes our bodies do help themselves but I know the whole process is hideous and depressing when you're used to being active. is there anything you can do to keep the athletic mind busy whilst you;re seeing what will be?

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 thommo404

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Re: Lost, Depressed - need help
« Reply #10 on: September 18, 2012, 03:06:32 PM »
Thanks Lottie.  Can I ask what you mean by "I guess if they find the sharp pain is due to a focal cartilage defect you have options for repair"?

As far as keeping the athletic mind busy I haven't found anything yet.

Offline RLE

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Re: Lost, Depressed - need help
« Reply #11 on: September 18, 2012, 03:20:51 PM »
I had 3 different MRIs with 3 different write ups. Totally different interpretations so I don't set much store by them anymore. My surgeon wanted to see all of them for himself. My x-rays were much clearer and easy to see what was going on, you could see the lack of cartilage and the patella alta and the dislocation easily.
I'd see another specialist (or 5 if possible)
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 Brambledog

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Re: Lost, Depressed - need help
« Reply #12 on: September 18, 2012, 03:38:18 PM »
Hi Thommo,

Crikey, I should think it IS a massive change from being active in the force. Good on you for seeing a counsellor for the depression bit - do you find it's helping much so far? I was offered it, but being a stubborn idiot I didn't. I'm out of the worst of it for now, but it was a dark time coming to terms with everything. Keep at it, and find some things to do while you're not as active - the worst thing is sitting and thinking too much. Mind you, some days you don't have a lot of choice ::)

I can say from my own experience that an arthroscopy isn't always the easy quick recovery they trot out beforehand. I turned out to have an extra complication, but even so, just firkling about inside a joint can leave things inflamed and angry for a while. It takes time to calm down. Sometimes more time than the surgeons think.

I'm the other way around than you, being the wife side of things, but I completely understand the guilt and sadness at seeing your partner having to take on jobs that you used to do, and they are running around after you and the kids as well, working full time, etc. it's a teensy bit soul-destroying. But they would do the same for you if things were different. So try not to feel too bad about it :-\ I found it helped to tell my husband how bad I felt about it all and then talking it through. At least then they know that you appreciate what they are doing and are trying to do what you can. It's never easy.

I have a very weak quad after my op, but have managed to get a bit of strength back, although not enough! I find the quad twitching exercises when sitting with your legs straight worked the best for me. I still can't do SLRs etc as its too hard on that darned PF groove! Keep working at it and it will come back. If your painkillers aren't enough for you to do the exercises, then ask your GP for something else - my physio always said that there was no point going into exercises without adequate pain relief - and she was a scary woman!

Hope things are ok today and it's not too chilly where you are - we have some lovely sunshine at the moment but a chilly old wind, and I bet my summer quilt won't be up to the job again tonight! Time to get the winter one out I think...

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

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Re: Lost, Depressed - need help
« Reply #13 on: September 18, 2012, 03:57:49 PM »
hey

My comment meant that if you have a chunk of cartilage that has gone missing from your kneecap that is the cause of the pain there are options for trying to graft in a repair. Things like MACI take your own cartilage cells and grow them in a lab then try and graft them back in, Denovo uses donor tissue to fill the gap. These only work if you have adequate cartilage around the focal defect to graft onto - imagine darning a sock with hundreds of holes in it....it won't work. Same with a kneecap with loads of bits missing behind it (like mine!). The information hub on here can provide some good questions you might want to ask your OS. I have just reread your report and would be intrigued what they mean by bony remodelling.....if that means bone is rough/growing/not happy then that may also be a cause of pain. Bone pain sucks big style and can be really nasty.

I know it might seem hard on the knees but have you tried indoor rowing? Would you have enough bend and strength? I used a water rower last week and was AMAZED how natural it felt and actually how much easier it was on my knees. They are rowing machines with water as the source of resistance in a big drum at the front. This is also a long shot but can you punch/box without the bobbing about? Pad work with a partner might be an option, I don't know how much mobility and capacity you have to stand and stabilise and punch but it helped me in the early days quite a lot. I guess my other escape was lifting weights - lying down with someone spotting me and doing the lugging about. Depends what you like doing though and of course that requires a gym and a person.

Good luck,

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 thommo404

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Re: Lost, Depressed - need help
« Reply #14 on: September 19, 2012, 09:34:56 AM »
Thanks Lottie I thought that was what you meant.  I don't have a chunk out of my cartlidge at the moment.  There was previous to the scope.  But the pain hasn't changed.  My surgeon did say before the surgery that it may take the pain away but may not so he left it up to me.  I took the chance but no luck.

I am in to see him tomorrow so will see what he has to say.















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