Revision TKR Now what???

[Coachie]

Sandy- it bothers me that you were brushed aside again and again. You were told that the pain was from your back and that there is nothing wrong with your knee. This is exactly what I went through last year with my knee. I kept telling all the orthos that I saw (I went to 4) and my PCP that I was in a lot of pain and that I knew something was wrong, but no one seemed to believe me. Finally, after pleading with one of my orthos, he agreed to do a CT Scan and that is when they saw that my knee replacement was loose.

I had the revision surgery on September 27th. Within a few days I could feel a difference. It has been a difficult recovery as my muscles had atrophied after a year of little use, but I am very glad I had the surgery done.

Hang in there! We're all pulling for you!

 

[goodasnew]

Sandy I'm sorry to hear about what you're going through, you have been suffering for way too long. I can't really help with advice but we all hope you get some answers to your questions very soon and get some relief from your pain.

 

[sunflower]

I'm terrified that because of these drugs, the staff will have trouble controlling my pain (thanks to the opoids, my pain tolerance is almost non-existant).

Pain management doc and OS are at different hospitals.

I don't know why they wouldn't listen to your pain management recommendations. You are, after all, a physician. As someone else suggested, have your good doctor make recommendations for pain management to the OS and strongly suggest :wink1: that they follow the protocol as closely as possible post-op. I have found that health professionals are more open to the suggestions made by other health care providers in regard to their personal care. Or at least they are in my area. My docs are more open to my drug therapy suggestions since my hubby is a pharmacist.

 

[carlene]

Sandy, I am hoping you get the right pain meds to help you and maybe with revision surgery, the pain will get much better

 

[PhoenixS]

Thank you all. I'm not sure what the OS will say.

Maybe IF he LOOKs and LISTENS to my knee (things bang around in there, I walk with a stiff leg because when I bend the knee, the banging is nauseating!)
My entire leg is throbbing and my back is chiming in as well.
I can't believe I worked in this condition at all!!!

I will ask my Pain guy to send a note to my surgeon, and since this hospital's main specialty is Orthopedics, I'm sure they have a pain management team.

Boston is such a small medical community, I'll assume my pain Doc knows their pain doc.
I'm getting another Facetblock to my back on Friday, hopefully that will put my back on the back burner th_heehee until I get some answers about the knee.
Again, thanks for the support, I need it more now than ever.
Sandy

 

[Pumpkin]

I hope this OS guy listens to you! (if they wore Mickey Mouse ears at least we would know they were listening)
My back pain is driven by my left knee, and has been almost absent since my surgery.
Good luck with your visit, and facet block.

 

[Christylrye]

Why is it so difficult for them to listen. As in my experience. I am seeing this over and over with others. It's like feeling trapped inside of yourself. On your own.

 

[kneeper]

(((Sandy)))

 

[just13]

Hi sandy I feel for you I’ve been reading all the past posting and wish I had an answer just hope for the best one thing stood out was that Boston is such a medical community ;I no many people that come from all over to Boston mainly the new England Baptist which just does knees and hips rated in the top 10 in the country I had my new knee done there nothing but the best things to say about them ;I don’t know were in Boston you had yours done but maybe you can try them or you’re a second opinion well hang in there and hope you feel better soon

 

[Lindawalms]

Sandy, I was right there w/ u on the pain mgt concerns - exactly right there - i handled it by having a heart-to-heart w/ my surgeon while my husband was present, making sure my pain mgt dr and my surgeon spoke, and wrote a letter to the nursing staff advising them of the situation b/c i have found that sometimes even tho orders are written for a large amount of meds, nurses are afraid to dose that much - especially when I'm not a large person...but i just used very factual and persuasive txt in the letter - i'm not saying things went great for my 2nd hip replacement but they did go better than my first one....the thought of pain after surgery was the most upsetting thing about the entire situation and would keep me up at night pre-op...good luck and let me know if you have any other questions for me - i was on approx 300 mg of oxycodone a day after my 2nd hip surgery which is very high but still pales in conparison to what i was on after my spinal fusion which was close to 1000 a day! (which was ridiculously overkill)...but that's another story by itself for another time! thinking of you xoxoxoxxo, Linda.

 

[lionsm13]

TKR's are not ( at least for me yet) all their cracked up/ purported to be that's for sure..

Mine also still has it's moments or minutes, or hours or days..too

I can and most certainly will empathize.

The uncertainty of it (the TKR process) at times can drive you mad, and that's no joke..
Is it this, or is it that?
Is it the weather,is it too much exercise, or too little?


It gets real old always wondering, and then having to go through all the BS related to it to try and find out what is wrong or not right, which is way worse than getting ithe TKR to begin with..

The game gets stepped up quite a few notches when you have to go through what some on this site have had to, or those who are contemplating doing so. My hats off to all of you!!


It's really too bad that the diagnostic procedures are still so crude, or maybe it's the OS's who are in the dark still?
Probably a little of both.. OS's who are so full of themselves that they cannot or will not admit mistakes..

It's not like any one OS or other can just say, "Yes that's the problem" and fix it..same day surgery, yeah right..
You have to go through the whole process and BS again.. and who knows what will come with the recovery this time, maybe better, maybe worse.. It's always a gamble, despite the odds..

Had I known all of this from the "git-go" I would have definately had second thoughts, period.. but I as many of you went into this procedure positively optimistic and am still waiting for the "magic moment".


I saw my GP yesterday and told him about the stiffness and the odd feeling of the hardware at times in my knee and he said, "well at 20 months it is probably about as good as it's going to get."

My PT that I go to see for my ongoing back injury that I have had since last Januray says that if I "strengthen my quads" that this will aid my TKR...
Anyone have any feedback on this, that if your TKR still feels wierd, not a lot of pain, just more annoying than anything else, that if you "strengthen the quads" that it gets to feel better/normal?

BTW, my ROM is fantastic.. not quite like skigirls, but pretty good.. all in all..
My job is of a sedentary one as I sit behind a desk but do try and get up every 15-20 minutes, and I'm not a real big exercise-er.. as my left /good knee is not as good as it was..

Sorry if this offended anyone...and did not mean to hijack your thread Sandy..
Rant over..

 

[goodasnew]

lionsm13, I'm sorry you don't feel your tkr has turned out as well you'd hoped, and it is certainly true that some people have more difficult recoveries than others. You can always come on here and vent your frustration as there's always someone who will recognise what you're going through and try to help.

I would just say that although PTs get a bit of bad press on here at times I tend to agree with the opinion that strengthening your quads may well help to make your tkr feel more normal. I had issues with this with my first tkr after about 4 months when it felt unstable and I was having pain walking, I was frustrated and despondent but my PT also advised me to do more exercise - cycling was best for me, and it definitely helped, the pain disappeared, the instability went completely and it felt fantastic. I have since had the other one done and again went through a few weeks when the first one didn't feel good - because I couldn't exercise as much while nursing the new knee, the first one definitely suffered. Now I'm back to regular exercise the problem has again disappeared - it's too much of a coincidence for this to happen twice.

I would really try to strengthen those quads and see if it helps - you've nothing to lose! Keep us posted!

 

[rubysue]

Absolutely agree, Goodasnew - when I am faithful to my exercises, my knee feels much more flexible. I am slowing building up on the bike; it still hurts a bit initially but settles down after 3-4 minutes, so you have to grit your teeth, The quads and their strength are essential to recovery. Today is our first fitness pool day, so I'm really looking forward to that (my hubby plans to go with me - he has been so great!). I'm still keeping my knee too stiff when I walk so I hope the water helps with that.

Lionsm13, I'm a bit like you - My job is sedentary (back in a week :hate-shocked and I have not been particularly fond of exercising in the past. I'm using my knee replacements as an excuse to get off my still-prominent rear end and get In much better shape and try to stay that way. One should always leap at second chances. . I hope you can find some improvements and I'm sorry it hasn't worked out.

Sandy, I hope you are able to resolve your issues and get a good recommendation from another OS. I've read your threads and am sending you my thoughts and prayers.

 

[PhoenixS]

I am doing some stuff in the pool to work my leg, but the suffering when I get out is awful, usually leaving me in tears.
I have done 3 rounds of PT for this knee, so I bristle when told straightening my quads will help- no offense to anyone who had success with this approach.

I've gotton to the point where I do not move my leg, or bend my knee. I walk straight-legged, with a cane, when I walk at all. Otherwise I am in a wheelchair.

I am now worse than I was pre-op.
I should never done this TKR though I had stopped all my fun activities.

Well now I have trouble with activities of daily living!!

I am fully expecting to be sent away from this guy with no answers, and I have a back-up doc just in case.

I know my own body and something is not right in my knee. The back is a mess and working through that seperately.

thanks for all the support.
sandy

 

[rubysue]

I really apologize, Sandy - I was jumping on board to respond to lionsm13 on some strategies that might work, or perhaps not.

It is obvious that you have something really wrong that must be resolved. Going through a TKR and ending up in a wheelchair is a terrible outcome.

 

[Recycled]

Sandy, Lionsm13 and others that have reached an impasse,

I am in no position to advise or suggest what anyone should do.......However.......If it were me...(that disclaimer lets me off the hook) I guess if I was upset, dissappointed and dissatisfied with the results and had tried everything on the normal recovery route, then I would have to say......."Can I or do I want to live with this result.........Or do I want to try to obtain more.....No matter what happens. If were me, and there was an additional surgerical revision or other procedure that might make it better, I would risk it if I wasn't satisfied with "Now". Sure it might turn out worse, but if I didn't try I wouldn't never know if it could be better. Guessing from the outside is always gonna be speculation and uncertainty. At some point, a Surgeon will have to go in and look. And I would find someone qualified that would do just that. That would be my next step. But that is me. I've always been a kinda of "Damn the topedoes, full speed ahead" kind of guy. And this is only my unqualified opinion. Good luck, I do hope things get better for all of you.

 

[lionsm13]

I've heard that for some it can up up to 2 years for a complete healing, and that may (I hope) the case for me..
(and you too Sandy)

I'm gonna wait it out, and am in mood at this time to go to the OS's and have them start explorin'..and tellin' me that they have no idea...why or why not...the hell with that.... it's just too much... all the way around...

This one has been way too much fun(not) to kick it up another notch... or take it to another level...
No way...unless I get to the point where I just cannot deal with it..
I've dealt with it this long...I guess..or so it seems..

You just get to the point to where you are tired of talking about your knee, and I'm sure everyone else is tired of hearing it too, so after a while you just start to stuff it and deal with it, because it wears on you that much..
and the alternative(s) are not much of an option.. either..as you know..

I just got back from walking/shopping @wal-mart and menard's, and my local natural foods co-op for the past 2.5 hours or so and don't feel too bad, but as I said it comes and goes.. I'm gonna continue and try and live my life..and take it as it comes...
one day @a time... for the time being.

 

[PhoenixS]

I think that one thing is my surgeon PROMIOSED me I'd be out on the trails by summer (my TKR was done in March).

Despite the pain I did manage to get out twice.
The pain descending brought me to tears, and I fell alot despite having strong quads( for the 1st 4 months I was exercising in the gym and getting my strength back)

At about 6-7 months I started to go backwards. That is when the trouble started.
My OS didn't want to deal with it, and I waited for the magical year point, had 3 consults (all know my OS-Boston is a tight medical community), who blew me off. Being a Physician myself, I know how to deliver news a patient does not want to hear, and these guys missed the mark. A little EMPATHY goes a long way.

WHEN they examined me (the guy at MGH didn't touch me but I got a nice condescending lecture from him re: nothing can be done and deal with it), the 2 docs who did touch me admitted it could be loose and to wear a brace and strengthen my quads, which I dutifully did to no avail, but alot of pain med..

With the passage of time all I can do is straight leg raises, could not function in my job (I had my own practice which I worked for 13yrs to build), started using a cane, then ended up needing the chair.

All the docs relyied on X-rays instead of clinical exam and not one mentioned a CT, or a bone scan. Humor me with the tests, and then give me the boot.

It is frustrating to say the least.
The only fun I have is in the pool. No real exercising, just playing, doing somersaults, etc.

I apoplgize if I come across as mean or pissy, but after 19 months, I'd think I would have resumed my life.
I've even gained 20# to add to the annoyance, as I would use exercise to maintain my weight.
So now I'm on Jenny, and at the end of the month am leaving on a family cruise to make up for the 2 vacations cancelled due to my issues this summer.Do you know how hard it is to shop for bathing suits near Christmas!!!Geez.:th_heehee:. Major advantage of going in a wheelchair: early boarding....
Gotta see the silver lining!!!!

Thanks for being here and letting me vent my anger at this situation, Hugs to all of you following my trip through he!!
XOXO
Sandy

I have yet another Ortho opinion at the Baptist next week, though I am armed with a CT scan that suggests a further work-up.

 

[sunflower]

My OS didn't want to deal with it, and....had 3 consults...who blew me off.
WHEN they examined me (the guy at MGH didn't touch me but I got a nice condescending lecture from him....

Don't you just want to smack them upside the head with a big fish? Really, what's up with these guys and their healthy egos?? They are acting like the old coot OS that I went to ONE time and who took the liberty to tell me that I, at the age of 18, had let myself go (I weighed 141) and probably drove through McDonald's for a Big Mac and fries, all the while standing before me with his beer belly spilling over his pants. If my parents hadn't been in the room with me, I would've told him to go jump.

Tell ya what, gather up the tennis balls and your fur kids and enjoy some pet therapy in the pool (you do have your own pool, right? :biggrin I'd be damned if I let anyone blow me off like that. Sorry but this touches on a nerve and makes me :hissyfit: Maybe I can Skype at your next OS appointment and share my impression. :th_heehee:

 

[Josephine]

Sandy, I can't begin to tell you the number of times over the years when surgeons have sat over coffee telling their subordinates of tales where they had promised a patient something only to seriously rue the day they proffered such rash statements! They'd say it was almost like they put a hex on it. There are patients who are ingrained in my memory who were the unhappy recipients of such promises.

As for me, I never ever want to have a surgeon or any doctor promise me anything. I'd tell him "Just do the best you can and let's see what comes of it."

I'm not quite sure if this is meant to be helpful or not but I thought it might be reassuring to know your surgeon isn't the only dipstick in the world! :wink1: