Banner - Hide this banner





Author Topic: Lost, Depressed - need help  (Read 14666 times)

0 Members and 1 Guest are viewing this topic.

Offline Brambledog

  • SuperKNEEgeek
  • *****
  • Posts: 1079
  • Liked: 10
Re: Lost, Depressed - need help
« Reply #60 on: November 13, 2012, 02:40:27 PM »
Hi Thommo,

I dont know enough about the MPFL to answer withut googling, but I suppose the answer to your last question is possibly that your surgeon might suggest doing a lateral release. The theory (and practice I suppose) is that loosening the lateral reticulum (sp?) - the ligament that attaches to the left (lateral, or outer) side of your knee cap - may be too tight, pulling your kneecap to the left too much, contributing or causing the subluxing. Loosening that then should allow your kneecap to sit back in a 'better' position in your trochlear groove...

It sounds perfect, but lateral release has its issues. There's no shortage of people on KGs who've had a bad experience, but you have to weigh that against the fact that sites like this exist for those looking for help and support  ::) so you hear more negatives than you might otherwise. However, LRs used to be performed a lot more freely than they are now, and some OSs have stopped doing them altogether because of the long-term instability that was caused to the kneecap. After all, it's a complicated balance of forces holding that little bone in place, and altering those forces throws everything out if not done right. Also, with LR you are looking at an 18-month recovery period. Many here would argue that PT is always better than surgery and cutting into that knee again - but when you've tried that and are still in pain and just want to be well, even surgery starts to look good!

I know it's hard ((hollow laugh)) but wait and see what your surgeon has to say in a couple of weeks time. Only he can really say... But take in a list of questions ready, and make sure he explains everything so you come out of the room with a clear picture. You'll have the info, then you can do your research here and on the web, and decide what to do that is best for you and your knee. It's not going to be easy, whatever happens, but with a plan you can at least work towards something and see light at the end of the tunnel.

I'll have a read up on the MPFL, it's time I learnt  ;D

Hope you're having a good day and the knee's not too bad  :)

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

  • Regular Poster
  • ***
  • Posts: 121
  • Liked: 6
Re: Lost, Depressed - need help
« Reply #61 on: November 14, 2012, 10:14:27 AM »
Yeah I am not real keen on having a LR.  But not real keen on going down thePT route.  I have been in physio since April last year.  Got back to a week out from running when it started to give me pain so I really don't think more PT is going to help.


Maybe the MPFL isn't too tight.  Maybe it needs to be tighter?

Offline thommo404

  • Regular Poster
  • ***
  • Posts: 121
  • Liked: 6
Re: Lost, Depressed - need help
« Reply #62 on: November 19, 2012, 12:30:08 AM »
Well my physio asked me this morning if I could call the OS office to try and get in earlier.  I did but no luck.  I then asked if I needed surgery is there any chance of getting in before xmas and was told not it wouldn't be till mid to late Jan.

So guess I have to wait till 3rd Dec and just hope to get a answer.


Had such a crap weekend of sleep.


thommo

Offline Brambledog

  • SuperKNEEgeek
  • *****
  • Posts: 1079
  • Liked: 10
Re: Lost, Depressed - need help
« Reply #63 on: November 19, 2012, 12:38:58 AM »
 :( oh I hear you Thommo, I'm not sleeping properly at the moments just worn outwith pain, driving me a teensy bit mad. I really hope you sleep tonight.

Sorry you can't see your OS sooner, and no chance of surgery until new year, but better that than a rushed decision any day  ::) it's always worth ringing your OS office and asking again - if you're persistent, then if they get a cancellation they'll think of you (it does work sometimes!).

Not too long to go, I see my OS next week but I know they'll just repeat the 'doesn't really matter, we can't operate until the CRPS quiets down' line. And goodness knows when that will be...

Take care of yourself, I'll be thinking of you and hoping you've found those elusive zzzzzzzz's

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

  • Regular Poster
  • ***
  • Posts: 121
  • Liked: 6
Re: Lost, Depressed - need help
« Reply #64 on: November 19, 2012, 03:16:44 AM »
Thanks Brams.  I am trying to look at going into this next appointment with the mindset that I am not going to get an answer and that he will just say lets keep going with physio and see what happens.  Only because everytime I go I expect to get an answer and then feel deflated each time cause I don't get one.

Do they have any idea as to when your CRPS will quiet down enough for surgery?

I think I am the same as you.  I am tired from not sleeping and grumpy cause I can't get enough sleep.  I have also had a really big last 3 weeks with work and that has worn me out a lot.  I worked from 0530 this morning till 1000 and then came home cause I just had no energy or zest left.

I really hate being like this.  On the weekends I say how bored I am but there is only so much we can do as a family cause I get sore or can't do some things.  And I know my wife is tired as well from having to do so much.

This next 2 weeks can't go quick enough I tell you.  Just want to get this done.  My wife and I even decided that if I needed surgery before xmas and would be sore and not be able to move much then so be it.
thommo

Offline Brambledog

  • SuperKNEEgeek
  • *****
  • Posts: 1079
  • Liked: 10
Re: Lost, Depressed - need help
« Reply #65 on: November 19, 2012, 10:43:39 AM »
Thommo, you echo so much of how I feel. It's not fun by any stretch. Last night we were at my parents for tea, and my CRPS kicked off at about 6pm as usual. The pain is just horrible, and I have to get my sock and boot off and get that leg up ASAP. Problem is that this has become a bit normal for everyone, and they're just past it. My husband came over to me once I was sat in the living room, but everyone else stayed at the table chatting, and I just felt so lonely and such a nuisance...

The honest truth is that people have a sympathy limit, especially if they don't understand what's going on, and why you're not better yet. They like illness to be clear, something they know about (or think they know), and to follow a normal path through treatment to cure. If it goes on too long they almost switch off. A friend of mine has cancer and has a poor prognosis - even her family can't deal with it day-to-day and she feels like everyone is pretending it's not happening. Friends are drifting away, she spends too much time alone, thinking, and feels she can't show her true state of mind. It's so sad, but I think maybe humans are just like that, maybe you just can't keep up that initial level of sympathy/compassion/interest...

All the more need for KGs and people like you and me who can say yes, yes I feel like that too and I understand, you are not alone. That's as good as the pills some days.

As for my CRPS quieting, I honestly don't know. Docs have been telling me for six months that this is a flare and that it will subside in a couple of weeks, but things are just getting worse. Last night was the worst so far in terms of my foot, and that's saying something. I wouldn't let a surgeon near me at the moment anyway, if it weren't for my worsening right knee with its OA, I wouldn't bother keeping my appointment.

We need to try and find some bright things to think about. Make a plan of how we're going to spend the next two weeks, keep a diary, that kind of thing. Anything but concentrate on the gloomy stuff! :) Baby steps. You've got two weeks until that appointment, so just plan for two weeks and try not to think too far beyond that for now. I can concentrate on two weeks.......

Keep  :) where you can Thommo, and find some stuff to laugh at. There's always something else going on to think about!

Take care of yourself, and I hope you have a good day. I'm on a quiet one today so am trying to make a new physio exercise plan. I've been crap lately, just doing day to day stuff seems to take all my strength and hurts enough, my exercises have suffered a bit. I'm trying to get back on track, but every time I try to push the exercises up a bit, the pain levels ramp up and my knee instability gets worse, it swells more, then I have more pain at night, can't sleep, more tired, more miserable.......blah blah blah.... I'm sure you know what I mean ::) ;D

Time to break out of it I suspect. Well, give it a go anyway!

Good luck with your life too  ;)

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

  • Regular Poster
  • ***
  • Posts: 121
  • Liked: 6
Re: Lost, Depressed - need help
« Reply #66 on: November 20, 2012, 12:25:35 AM »
Thanks Brams.  And I am really sorry to hear you had such a bad night at your parents.

I know what you mean about others having it become such a normal thing.  I say to my wife that I am really sore and she will just say oh ok.  She has said to me she is at the point where she can't say anything else because she is so used to me saying I am sore or tired.  I have had today off work cause I just needed a break.  I couldn't face going in again today.  I needed a day to just sit on the lounge without anyone else here so I could just zone out.

I feel bad but.  My wife works so hard and my kids don't really understand.  We are building a house at the moment and things are starting to pop up that we now have to find money to pay for.  I would normally be able to do those things myself but can't cause of my leg and I can't even do the overtime to get extra money to pay for them.

2 weeks to go.  I can't wait.

Offline Brambledog

  • SuperKNEEgeek
  • *****
  • Posts: 1079
  • Liked: 10
Re: Lost, Depressed - need help
« Reply #67 on: November 20, 2012, 09:48:06 AM »
Hi Thommo,

Really good idea to take a day off and just have some space. I hope you've got a couple of decent films or computer games lined up tho, because daytime tv is just AWFUL!!!  :o ;D Not that I would know, of course.....lol.

Another tired day today methinks. Did my physio plan yesterday and did about half the exercises, but as one of those was 15 minutes steady on the exercise bike at low resistance, I think I did quite well. One of the worst is the one where I just have to stand and try to get my knee properly straight, hurts like hell so I only did a few. Maybe a slow build, that one!

Today I am experimenting with wire jewellery. I used to make beaded jewellery with a friend and sell at fairs etc, but haven't for a year and more now (can't think why), so I thought I'd get back into it and try to do something different. I got some wire the other day and I'm just going to have fun today seeing what, if anything, I can do that might be sellable. Lol.

Have a good day Thommo, an R&R day.... 8)

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 Treeburn

  • MINIgeek (20-50 posts)
  • **
  • Posts: 26
  • Liked: 2
Re: Lost, Depressed - need help
« Reply #68 on: November 20, 2012, 05:41:59 PM »
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
Hi, I am going on my 6th surgery in less than a year. I am out of disability, and now on food stamps. All I had was a meniscus tear and everything went wrong. I just had a meniscal transplant and now it does not seem to be gettting better and I am having surgery next week. I am so tired of people asking me what is wrong with my knee. i wish i knew! I just found this website and was hoping for support but no one responded to my post. boo hoo:)

Offline Brambledog

  • SuperKNEEgeek
  • *****
  • Posts: 1079
  • Liked: 10
Re: Lost, Depressed - need help
« Reply #69 on: November 20, 2012, 06:45:54 PM »
Hey Treeburn!

So sorry no one replied to your initial post  ??? - sometimes it can take a while, I don't really look in the new posts section so much now, but having seen this I will...

I can't imagine six surgeries in a year - one was bad enough! What is your next surgery? I'm sorry your transplant failed, I know any kind of transplanted tissue has a higher rate of failure than the (so-called) straightforward ops... I don't know much about meniscal transplants I'm afraid, but I know surgery hurts and takes a while to recover from in the best of circumstances, so I can readily imagine that you've been through hell. I'll cross my fingers for your surgery next week and hope that something finally goes right for you. When do you go in? And how long are you going to be in hospital for?

When I saw your line of "I'm so tired of people asking me what is wrong with my knee" I smiled ironically.... I bet most of the KneeGeeks would say the same thing! It does get old... ::) The KGs are a friendly bunch really, sometimes a post just gets missed, so try not to take it personally.

Whereabouts do you live? I'm in the Uk, but there's a lot of KGs in Canada and the USA, as well as a fair few in Australia and elsewhere. Hope you are somewhere warmer! It's cold, raining and dark here in England, and I'm seriously considering lighting the fire.... ;D

Take care of yourself with all those preparations and no doubt lots of worry about this surgery. I'll be hoping your luck changes.

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

  • Regular Poster
  • ***
  • Posts: 121
  • Liked: 6
Re: Lost, Depressed - need help
« Reply #70 on: November 23, 2012, 11:31:18 AM »
Treeburn that is sad news.  Hope all goes well with your surgery and you get a good result and recovery.

That is one thing I have been lucky with.  Mine happened at work so it is all taken care of.

Well Brams I ended up taking 2 days off.  I really needed it.  Went to hydro today and really suffered.  I am done with this whole thing I think.  I can't face continuing on with more physio/hydro if that is what the surgeon tells me to do when I see him in 10 days time.  I have been doing PT for the last 20 months basically non stop and it hasn't worked.  I was at the stage when I was a week away from running again when it all went down hill with the pain. 

I can't see how doing more PT is going to fix it.  I now only have 1cm difference in the size of my quads.  So the muscle is back.  I am really over it.  If it is that bad when I have the muscle back I don't see what PT is going to do.


I need a decision.  I need to move on with my life.  If he says there is nothing that can be done then I am ready to face that with work in that I can't be operational anymore.  But I need that decision to be made.  Our life has been on hold for 21 months when I see him again.  We haven't been able to go on a family holiday.  I can't sleep properly.  I get cranky and grumpy easily.  And I am really scared that it will end my marriage because of the person it is turning me into because of the lack of sleep, not knowing etc.

thommo

Offline Brambledog

  • SuperKNEEgeek
  • *****
  • Posts: 1079
  • Liked: 10
Re: Lost, Depressed - need help
« Reply #71 on: November 23, 2012, 02:00:26 PM »
Hi Thommo,

You are dealing with a dreadful time, and I do feel for you. But please don't give up and abandon the hope that things will improve. I completely understand your frustration about work - I recently finally resigned from my old job. I hadn't worked there since March 2011, and had been hanging on and hanging on, not wanting to let go of my old self who worked there and did all the other things I did back then....

But do you know what? My life HAS changed, whether I like it or not. So I've resigned. And unexpectedly, I feel a bit better about things. I'm ok with having cut at least one bit of crap free and let it go. Took me a long time though and I do still miss it a bit.

I understand your frustration at the physio, drives me mad to drive half an hour to talk to someone about my knee and repeat the same old things, do a few exercises, come home again - but it does keep your knee and muscles moving regularly, and gives your physio a chance to assess your knee and report any changes or problems back to the surgeon. At least I hope that's what he's doing!

When you see your surgeon, I suggest you tell him how you feel about it in the same way you have done here. You are right to want some sort of resolution to this, a plan at least, not just long-term physio that is resolving nothing and causing more pain. He needs to decide whether you can be helped by surgery or not. And your work situation definitely needs deciding - once you've explained, maybe ask him directly about work and whether he can give you some sort of medical opinion so that you can start to move on.

Life changes with stuff like this, but it does move on. You'll get through this period of frustration and worry, and find your way again. I felt so hopeless for a long long time, and still get days of gloom. But it is getting less, and although the pain and problems are still there, you do find a way to deal with it.

I hope you don't mind me asking, but have you seen a psychologist at all? I saw one and did a mindfulness course as part of my pain management thing, and if you're honest and just say what's in your head, they can really help you. You sound so lost and desperate, and I think you deserve some help with that. No medic can switch off your pain and problems with a magic wand (damn shame), but it can get easier to deal with. Personally I was very sceptical about the psychological angle of this, but over the last few months I've felt some benefits and I think it's worth a go. Nearly anything is worth a go when you get to rock bottom. Might even be worth asking if they can recommend anyone you could see with your wife. You must both have problems with the situation, and dealing with it together might help if your relationship is suffering....might help you both.

You don't seem like a bad person Thommo  :) just a good man near the end of his tether, who wants to get on with his life. You can get through this bad time and find some hope for the future again.

Take care of yourself and your family as much as you can, I'm sure they know how hard you are trying.

Keep talking!

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

  • Regular Poster
  • ***
  • Posts: 121
  • Liked: 6
Re: Lost, Depressed - need help
« Reply #72 on: November 24, 2012, 12:05:56 PM »
Thanks Brams.

To answer yes I have seen a psych.  Gave me a little bit of help.  We tried some pain relief techniques as well but with no luck.


Just over it.  As far as work goes mine is a work injury so it is all tied back to work with it being a compo case.  I don't want to resign.  They are great to me and have been great to me with this injury.  In fact if I hadn't had this injury I wouldn't have ended up in my current role as a senior trainer.

My physio is great.  I had one before him and she was terrible.  Gave me some excersises.  But my appointment usually consisted of sitting there while she massaged the knee for ten mins and that was it.  Now I have constant supervision, assistance, guidance and discussion about where it is at.

I just want that answer.  That is all I want at the moment.  I have probably lost $50k due to not being able to do overtime.  we are building a house at the moment and little things are coming up and normally I would do an overtime or 2 and it would be covered but I can't at the moment.  I so badly want to be able to do it all so my wife can have everything she wants for it but we can't.  Not that she wants the best of everything but things like the fence, a retaining wall that will need to be done before the fence can be done, grass.  We have 2 dogs so the fence is quite important for when we move in.

The grass is quite important cause our 2 kids need somewhere to play.

I am really over the lot of it.

Offline Brambledog

  • SuperKNEEgeek
  • *****
  • Posts: 1079
  • Liked: 10
Re: Lost, Depressed - need help
« Reply #73 on: November 24, 2012, 01:08:53 PM »
Hey Thommo,

Have a good day wherever possible and I hope you get to do something nice with your family, even if it's just watching a vid together! We have movie evenings once a week now and watch some classic cheesy film...nice and cosy, and the kids like the 'all together' thing  :)

Glad your physio is so good, that must be a huge help and even more reason to keep seeing him! Wish mine was as hands on...

Take care,

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 MyKnee2010

  • Forum Faithful
  • ****
  • *
  • Posts: 193
  • Liked: 16
Re: Lost, Depressed - need help
« Reply #74 on: November 24, 2012, 01:46:07 PM »
Hi Thommo,

I've been following your thread & understand how you feel. I've been dealing with chronic knee pain for the last 4 years. This week, it was 3 years ago that my left knee was replaced. I had no idea 3 years ago that I would still be having such problems. Probably a good thing or I would have been very discouraged!

Anyways, I found I was putting my life on hold, waiting for that time when my knees were all better. Last summer, I finally decided I wasn't going to live my life based on my knees. I am still hopeful that my knees will get better some day but I can't wait around for that day. 

So, I started doing the things I wanted to.  I kept saying I wanted to get a puppy but I better wait until my knees were better. Heck with that! I found a sweet little puppy born in a rescue & we adopted him. He's the greatest little dog! We love him & our older dog loves having a companion. We kept putting off a vacation too - I figured why pay to go somewhere if I was just going to hurt? Again - heck with that! We're now planning on taking a nice vacation soon.

I am still seeing doctors, researching, learning all I can to help find a resolution to my knee problems but my life is no longer on hold!

Good luck with your knee!

Phoebe