It HAS to get better

[Arity]

I have not been posting very much lately, because generally when things dont go well for me I tend to retreat into myself and just try to deal with it, and surface when everything is rosy (or at least looking better) again.  I just need to vent today.

Im frustrated, upset, confused and generally just extremely fed up and wishing that I had never had my ACL’r 8 weeks ago.

I have now tried to go back to work 3 times.   Each time has resulted in a setback, which has sent me back to my couch to “rest”.  The most recent attempt (just under three weeks ago) ended in me waking up in severe pain and a trip to the ER when nothing I did helped with the pain.  They didn’t do anything for me as it wasn’t immediately life threatening, so I followed up with my surgeon a couple of days later.  He really wasn't sure what was wrong but suspected the staples on my tibia may be irritating.  He ordered another two weeks of rest with no physio and to see him in two weeks. 

That was today.

He started by asking if I was feeling any better.  I said I was feeling a little better.  As soon as he heard this, it was like the appointment was over.  I tried explaining that I feel better because I have been sitting on the couch for over two weeks however the pain started to ramp back up again the minute I started to do more stuff (ie. cleaning around the house, etc.).  It’s not as bad as before, but I’m doing far, far less.   He just said rest is working so keep doing it.  I guess it doesn’t matter that it only improves because I am doing NOTHING. I CANT sit on my couch FOREVER.   Trust me, I have tried to do a little more on my good days and immediately know it is a mistake and I pay for it.  I felt like he was really listening to me two weeks ago and this morning it was like I was an irritation.   Not sure what happened with him in the last two weeks since my last appointment.  Believe me when I say that I do NOT want anything to be wrong, but I would like things to be ruled out.  I have severe pain on my shin and now it has spread to the inside of my knee.  I just want to find out what is wrong! 

I know that the fracture clinic was busier than normal today, but he did not even *look* at my leg today.

I’m so frustrated I’m in tears.  I don’t know what to do about work.  It looks like I’m just going to have to suck it up and take a lot of drugs. 

[Brambledog]

Yes it does. And it will.

Hey Arity, let me return the favour with a heartfelt {{{hug}}}. I've read through your post and you really are going through bad times at the moment. I really feel for you, and I know exactly what you mean by the 'mood changing' bit of your alleged consultation. It seems that when you most need some time and attention, they just don't have the time for you.

I had to email my OS recently to get another appt as my R knee has got so much worse and my L knee that had the op is not improving. Had a very curt reply - he's sending me out another appointment (not got it yet though) but other than that the vibe was definitely 'go away, I'm a busy man'.

Not working completely sucks, doesn't it? I never realised how much I needed it until this. Madness. I too have spent far too much time sat on this sofa looking out of the window and wondering when my life will return. Frustrating is the right word for it.

I'll be thinking of you Arity, and hoping that your pain eases and things settle down. Keep your chin up and don't let life grind you down. I know I'm a fine one to talk (re my post) but you have to fight on. I'm in angry mode now. Later I'll probably be back in the depths again.

Lots of love to your poorly knee, and you too. Indulge yourself with something lovely, and know that you're not as alone as you feel.

Brams 

[Arity]

Thank you so much.  As you said, it DOES mean a lot to know that someone completely understands.

In complete frustration, I called my family doc when I got home and went to see him this afternoon.  He had more xrays done, but doesn't have the report yet.

In a very interesting development, my surgeon mentioned at my first post op visit he "cleaned up a little arthritis" in the medial compartment (I also had a medial meniscotomy last year so just assumed it was some sort of scar tissue from that), but never did get into the details of my actual surgery.

My family doc read from his report today that this was GRADE 3 arthritis.  Now, I'm no doc and I dont know a lot about arthritis as I have never (I thought) suffered from it, but isn't that pretty bad?  Isn't 4 the absolute worst it could be?  While it may not be directly related to the ACL'r at the very least could it not be contributing to my lengthier recovery process?  I don't know.  I'm just SO SO shocked that he wouldn't have mentioned that it was grade 3 and just said "a little arthritis".    I dont know whether this is wear and tear or the result of having an extremely unstable knee for two years, whether it will progress, or whether it will get better.  It has just raised another whole slew of questions.

My family doc gave me some celebrex to try and see if that helped...and to rest.   Arrrghhh.  I've been working from home this whole time and I keep telling my boss "I'm coming back after I rest for two weeks".  Now I dont know if I should rest and heal or if it is arthritis, resting is going to do nothing, and to just go back and suck up the pain with the painkillers.  I dont have another appointment until October 17th!!!

 

[Brambledog]

I'm so fed up with this ongoing truth, that surgeon have crap people skills and the bedside manner of a blowfish. I know they're not all like that, but I know just what you mean - I got sod all information from mine, he just said pretty advanced patellofemoral arthritis. It wasn't until I'd joined this site and learnt A LOT about knees ( ) that I realised he'd given me no detail at all. I'm in the ridiculously complicated and lengthy process of applying for copies of my MRI and arthroscopy report, and I'm hoping to know more then...

I would definitely have thought that grade 3 arthritis was fairly bad, given as you say that grade 4 is bone on bone. And I can't see a way that it would NOT have an impact on your recovery. I know that some people don't have symptoms from their arthritis until later than others, but at grade 3 it could well be giving you trouble. I think sometimes surgeons don't want to make a big deal out of things in case it makes things worse psychologically for the patient. I suppose it's a difficult line to tread - too much info leading to panic, or too little where we end up in ignorance of things we actually need to know (or think we do!).

I would do as your doc says and rest. He knows about the OA and sounds like decent bloke, so presumably he took it into account when handing out advice. Did you tell him you were shocked at not being told? Rest is the worst thing to be told to do, I have decided. It's boring, you feel as though you're stuck in time, and your backside aches from sitting about!

Also with you on the work thing. I spent ages telling my boss I'd be back in a couple of weeks (because that's what I was being told!) and felt like I was really messing him about. I'm still not back and am no closer to being back. My job isn't the type where I can do anything from home, so it's just a waiting game. My doc hinted that perhaps a job standing, walking and carrying all the time wasn't the best for me, so I have to face up to the fact that I may never go back. Pretty chilling thought really - I was very good at it!

Hope we both have a better day.

Brams 

[Lottiefox]

Hi Arity

I would definitely think that Grade 3 arthritis could be causing some issues. If you have inflammation from that then the knee feels unhappy and you won't ever get things settled down. If it is any help I tried Celebrex from my GP and found it to be wonderful! I had no success with other NSAIDs but in 2 weeks my knees felt semi normal. Give it at least 2 weeks before you will know if it is making a difference. It needs to get into the system a little to establish. It has a relatively long shelf life in the body. I used it for 3 months and now only take it if I have a bad flare up, as it seemed to really help. I also had Euflexxa injections (privately) and they have been my salvation. Some people get relief, some don't - I guess I am a lucky one with that element of recovery. Shame my foot surgery didn't follow the same text book route but hey!

Bad knees suck. We all get it on here so feel free to vent. So many surgeons have the beside manner of Fred West - I like the blowfish analogy but it is unfair to some blowfish when you look at some doctors.   They simply don't get it - makes you wonder why they became medics doesn't it. Perhaps they'd like **** knees and see how they feel when they get dismissed time after time......lets shove them all down Snowdon with no walking poles and slippery Jimmy Choos on their feet...

Keep smiling, we do understand.

xxx

[Brambledog]

Now Lottie, don't hold back. Tell us what you really think of surgeons...

I have wonderful mental image now of a bunch of surgeons (mine's there) tottering down a mountain in pink high heels, ouching, cursing and falling flat on their faces in the ice while us KGs stand by laughing and pointing... 

Brams 

[Lottiefox]

I will just add that my foot surgeon is not included in my desire to push them off a mountain. He is wonderful (I have a little bit of a crush on him... ) - calm, collected, decisive and danged good at his job. I credit him with having saved my foot from rampant RSD. Also got a sense of humour and is incredibly positive yet realistic. He can remain free of high heels.

My injecting knee surgeon is also a good chap, very personable but then I have always paid vast sums of money to him to see him and let him stab my knees. Shame that money seems to buy you time......and being taken seriously....... 

Seems too common that surgeons don't take patients seriously. Maybe they don't have the answers, but they could at least try and be interested in helping....

/rant off!

[Arity]

Thanks you guys.  I am feeling a little better this morning.  I was in a lot of pain last night and still this morning due to being out of the house all day and a level of activity I have not seen in a couple of weeks (kind of confirming I am not ready to go back to work yet), but I can DEAL with pain if I know WHY I am getting the pain.  Now, I still don't *really* know why because my shin feels like it's on fire and my entire shin bone fees like it is aching and I wouldn't really think this was due to arthritis, but I have some idea of why it may be taking me a little longer to recover. 

Bram, I didnt' tell him I was shocked about the level of arthritis.  I think it didn't really sink in until after I had left. 

Lottie - too funny you should mention Fred West.  There is a documentary on him on TV right now and then I read your post.  I would say my surgeon is probably not that bad..LOL

Thanks for your input re: Celebrex.  I am starting it now (he just gave me a few sample packs to try it out).  Hopefully I have the same improvement you saw! 

OS said to hold off physio still until next week.  I’m not sure this is beneficial.  I already have not been there for 3 weeks.  I don’t want to lose any more strength – it will lead to even more problems down the road!  Maybe I will give him a call this morning and see what he says 

[tink1976]

Sorry to hear you are going through so much. I dont much about what you had done but I do know all too well about frustration with your OS. I had a TTT, lateral realease, microfracture chondroplasty and scrape of arthritis back in Sept of 10. My OS was great UNTIL I started to have problems. Then he started to act like I was a huge problem. Even said I had low pain tolerance..That should of been a red flag right there. I was far worse after surgery then prior to. Finally he said there was nothing more he could do for me and that I had to live with limited ROM and pain. I was crushed. I ended up seeing another OS for a second opinion. He sent me to a pain doctor who really helped the pain but I had loss 40% function of my leg and I feel if my old OS would of taken my complaints more serious and had me in PT longer that I could of recovered 100%. This past Aug I had a power wheelchair fall on my leg and break it in 4 places. The same leg I had sugery on. I have another OS that so far has been great. I think some of the problem with the surgeons is they expect us to be on their little time line and when a problem arises they dont know what to do so they almost dismiss it. I really hope things look up for you. It is bad enough what you are going through without the added stress. I hope you recover quickly and stand your ground with him. Tell him what you feel like you need. With my current OS im not holding back. I will be the patient from hell if I need to. Good luck to you and please keep us informed. Sending hugs your way!!

[Arity]

Oh my gosh Tink, that's just terrible!  Mine is a long store, injury two years ago, menisotomy last year, acl'r this year and now apparently arthritis - however reading your story it seems insignificant!  I can't imagine having to have gone through everything you've gone through!

I agree about the timeline thing.  One thing my family doc said to me yesterday is (direct quote) "you never recover from these things as fast as the surgeons say you will".   He has been my family doc since I was six years old (I am 42 now, he has had a lot of experience!!).  He is one of those old fashioned (obviously) docs who takes whatever time you need and investigates everything.  Needless to say, I'm sure he will be retiring soon and I will be devastated LOL. 

Im so glad you now have an OS that listens, and I am on the same boat as you.  I intend to be the patient from hell if necessary from now on.  If i had not taken matters into my own hands yesterday and gone to my family doc and saw the report, I would still have no idea about the arthritis today!

I went back to physio.  No exercises, focus right now is on pain relief, massage (yeah, right, is that what they call it?  OUCH) as apparently I have a ton of scar tissue everywhere and e-stim, and a new plan of attack.  They agree - sitting around is not beneficial to my recovery - now or most especially long term. 

(((Hugs))) back to you.  I hope things are getting better for you!!

[emergRN]

Arity,

I hope that the celebrex works for you, and that you can get back to PT.  This knee stuff does s***!!!  So sorry that this is happening to you.  Vent and rant whenever you feel like it!!!  I do it all of the time!

W

[tink1976]

Yea it has been a year from hell but Im halfway there and will start to learn to walk again in November. They just took me out of the full leg cast and in a hinged brace so I can start bending.. still non weight barring till November.. I already had atrophy in my quad b4 I broke it.. lol I have a very skinny leg on a chunky body.

Glad you found some help with your family doctor. Gl with Pt.. I should start mine in about 6 weeks

[Brambledog]

Tink, you're so tough! I can't imagine what you've gone through. Puts my troubles in perspective!

I bet it's good to be out of that full-leg cast. Must have been a nightmare. The skinny leg thing is horrible - I have a bit of that, but I bet nowhere near like yours after a cast for 6 months. Now you're out of it the PT will start to build things up again once you can get going with it. Oh for a magic wand!

Brams 

[tink1976]

Bram.. I dont consider myself tough at all. I have cried and cried over this but all the crying in the world is not going to make me better. I was in a leg cast for 6 weeks.. not 6 months but 6 weeks was bad enough lol. I already have atrophy in my quad from my surgery a year ago so it just adds to it. I have a thred on here if you would like to read it. Its titled More Bad Luck.

Arity.. I hope today finds you feeling better. Please keep us posted on how you are doing.

[Arity]

Tink - I would cry too!  I sure don' t blame you!  You may have cried, but you are getting through it, that's pretty tough, even though you dont feel like it right now!  Hang in there hon - like the title of this thread says - it HAS to get better.  Feel free to PM any time or post when you need support.  This site has been a lifesaver for me!!  Everyone on here "gets it".

I was very scared of having this surgery to begin with but ultimately decided to because I couldn't function in day to day life.  The first few days after surgery I was saying to myself and everyone, yes, surgery sucks, but at least I can start to move forward with it finally for the first time in 2 years, and was really looking forward to rehab because in my mind every session was one session closer to getting back to what I used to do and had been in complete limbo from for two years.  HA!  Now it looks like I have arthritis for the rest of my life, which while I will try to do as much as I can to prevent it from getting any worse, will never get better.   I will have to deal.  For now I have to concentrate on getting better from the surgery, I really think I aggravated things trying to go back to work too soon. 

I told my boss yesterday that I will NOT give a date that I will return.  I will be happy to work from home but if that doesn't work for them then they can feel free to tell me to take STD.  Those were the only two options I gave them, I'm not willing to risk permanent damage for the sake of going back to work earlier than i am ready to.  It took a lot of mental struggling for me to say that, because I feel horribly guilty, but in the end no job is worth lifelong damage.

I'm still very, very angry with my OS for not mentioning anything at ALL about the arthritis.  It's a good thing I don't see him again until October 17th.  I plan to calm down, write out a long list of my questions, see him, and then walk out and never see him again.  If I need another consult for anything, I will have my GP refer me to someone else.

W - I went back to physio yesterday!  We are not doing exercises yet..I'm seeing a new PT there and she did some "massage".  She said I have a "ton" of scar tissue everywhere - my hamstring, tibial incision, and pretty much everywhere that was "offended" and was going to concentrate on breaking that up for the next couple of sessions.  Ouch! 

Bram - I hope you are doing well this morning (afternoon)!!

Oh my gosh, this is way too long.  I'm going to stop now.  Hope everyone has a good day!

[tink1976]

You did the right thing about work. You have to focus on getting better. Your health and well being come first

I can totally understand about being angry with your OS. My fulkerson osteotomy  was not scheduled. I saw my OS once for a recurring knee problem and was told he could do a lateral realease or the fulkerson osteotomy. He was not 100% sure that the lateral release would even solve the problem but it could at least buy me some time. All I knew about the fulkerson was that they would break my shin bone, move it over some and secure with 2 screws and that the recovery time was 6 months to a year. Well I was thinking that would be when I would have no restrictions. I choose the lateral realase as I wanted to start small and if that didnt take then I would consider the fulkerson. Well the morning of sugery as I was being prepped he asked if needed could he do the " big daddy" of sugeries. Or course I said yes thinking it would not need to be done.. Oh was I wrong. He did the fulkerson and 3 other things to my knee. Was told my knee was so bad that I was on the verge of replacement. Maybe I was.. But I had NO idea what I was in for. I was home by noon that day. Bed ridden for 2 weeks and was not told what to expect. I didnt even know when I could bare weight on it or anything. I found out pretty much as I went. Pain was NOT controlled with pain meds the first night and ended up having to call the on call doctor. They didnt start PT for over a month so I had scar tissue to break through and all he orderd was ROM.. no strengthing. He seemed to care less that I had atrophy in my quad. I even remember saying something about my leg being so weak I couldnt do steps normally and that it would almost grind when I bent it.. His response " well its better than it was" . uggg!!! When I did get a second opinon they didnt send over all my records but some of them. One of his notes it read " sarah has loss 40% function of her right leg. Overall she is doing very well" Really??? My new OS had to laugh at that.

Dont take any BS from your OS. I really think the way my old OS handled my surgery and recovery is why my leg was and still is so messed up. I have muscle waste in my quad that I was told would never come back.  If  you really feel like you are not getting what you need..then do what you have to do to get a second opinion. I lost trust with my old OS and it took me a while to really trust my new one and to be honest.. I still dont trust him 100% But so far has handled my leg pretty well and Im happy with him. Do what makes your feel comfy and keep up the hard work. Big hugs to you!!!!!!

[Arity]

Oh, you hit the nail on the head this morning Tink!  I am sitting here and re-reading my surgical report - I keep going over everything in my mind trying to give my surgeon the benefit of the doubt.  Maybe he didn’t want to worry me, maybe he thought I knew etc.…trying to somehow understand why he wouldn’t tell me.  However, on the surgery report before they even get INTO the report it’s clear that my diagnosis changed.  Right at the beginning before the report even starts it is there is big capital letters that my preoperative and postoperative diagnosis' are different, with the addition of the arthritis.

My boss says I should consult a lawyer although I really really dont think it's necessary.  It's not like he CAUSED the arthritis, he just didn't tell me about it.

The more I think about it the angrier I get.  However, I need to calm down - anger isn't going to help me, mentally or physically.  I haven't slept well all week and that isn't helping either.  What I need to focus on is going forward and healing and getting on to a normal life at some point.  As I believe I have already said, it's a good thing I am not seeing him until October 17th!!

[Brambledog]

Know what you mean - I think most of us KGs could be very angry about something that could have been handled better or done differently. But as you say, it just eats you up inside. There's no point in looking back too much, just keep facing forwards and make sure you leave him nowhere to hide now that you KNOW! You can look forward to making him squirm a bit at your appointment... 

Brams