Revision TKR Knee replacement is not nice to me...

[WaterBaby]

Thinking of you, Coachie. Sorry to hear that Physiatrist was so disappointing. Geez, what is it with so many doctors these days? So quick to diagnose/come to conclusions without any real interaction or communication with us patients! ARGH! That is SO wrong....

 

[PhoenixS]

When I saw the revisionist, I stressed to him that I had 2 trigger points. He didn't listen and although he did an exam, he wouldn't give me any time to SHOW him what sets the knee off. All this while his NP sat and nodded. I KNOW he made his decision about what he was going to say and do before he set eyes on me. He was unfazed when I told him what I did for a living and how hard that was on both my knee and back. The "Guru" didn't care about what I had to say. He looked at the Xrays and told me my knee looked "perfect". If it only felt "perfect".....

 

[Josephine]

 

[old goat]

I think he is in love with himself Sandy. Can't stand people who think already that they know it all and don't listen. Good luck.... sorry that seemed like a waste.

 

[wanttoride]

Hi Coachie! I think you and I should form our own support group and meet a couple times a month, if for nothing else, just to vent! I'm hoping this 2nd opinion I have on July 29th is going to go well. I know Dr. Kelly has given him my "history", so I really, REALLY hope he hasn't already formed an opinion ABOUT me before seeing me.
I've got my strategy worked out already. I'm going to ask the first question, which will be "what do you already know about me and my case"? I hope Dr. Kelly has told him that I come "armed" with a sheet of paper with questions and "what ifs"!
My knee "fooled" me this morning. I got up and it felt really good. Still didn't bent or straighted more than it has, but it wasn't "tight" feeling. I actually thought "Wow...today just might be the day"! I guess I never give up hope that I'm gonna wake up and the RSD symptoms, pain and stiffness will just be gone. Didn't take more than a walk to the bathroom to start the cycle going. Too hot the past couple of days to wear that cast, so like Dr. Kelly suggested....use it as a door stop! Too funny! ...anyway, I've just been hobbling from chair to the kitchen and back again. We live in a raised log home, so to get outside, I have to go into the daylight basement to get out. Constantly climbing or descending stairs...one leg at a time. Takes FOREVER!!! But...if I have the knee fused, that's the way it's gonna be forever. Still hoping that I'm going to be told that the fusion most likely will take away the pain, or most of it. We'll see what he has to say! :doorscary::doorscary:

 

[Coachie]

I've had really bad pain lately. There are days when I have pain, but it is, you know, pain. Yesterday and today, my knee cap area has been almost unbearable. I have taken pain pills and laid with my leg up and nothing has helped. I don't know if it is because I didn't lay around this weekend and actually "dared" to sit up in a chair for more than an hour and enjoy the 4th of July or go in the lake for a few minutes or what, but it has been horrible. Yes, sarcasm included here...

It was so bad that I didn't even go outside for most of the day yesterday. When it is a nice sunny day in Maine- everyone goes outside because we have so few of those types of days! I live on a lake and used to spend every waking minute outside- instead I spent the day yesterday and a good part of today laying on the couch dreading having to move to go to the bathroom. I'm hoping tomorrow will be better. I go back to Dr. W in Bangor next Friday (the 15th) so am going to make sure he knows about this.

 

[NatalieMeadows]

Hi Coachie,

I have just read through your thread and your story is so similar to mine I am nearly at my year anniversary now and I am still in agony every day and there is nothing more frustrating than not knowing why?!

I too have pain around my knee cap and struggle with walking and every day life,I last saw my surgeon in Feb and we decided I needed to take a break from all the hospital appointments and to give it 6 months "time to heal" well that's what I have done and I have got to 5 months and I can't cope with the pain and impact it is having on my life anymore so I am going to see him next week and already dreading the answers I will get so I am doing as much research as possible and I am going to go in with a book of questions and not let them fob me off at all!

I really hope you get some answers or relief from this crappy pain soon xxxx

 

[Coachie]

The pain has not gotten any better even though I am trying to do what everyone is telling me to. I continue to ice my knee several times a day for 20 minutes at a time (no polar care or breg or whatever, I just use reusable gel packs.) I elevate and stay off it as much as possible- but nothing helps. I can't live like this forever- elevating and not moving around much that is. If I was in my first few weeks of recovery, I would be ok just laying around and staying off my leg, but I'm not in the first few weeks, it's been over a year since my tkr.

I had an MRI of my lower back the first week of June as my "new" orthopedic wanted to rule all of that out first. During that MRI they found that I had a slight herniation at L4-L5 and L5-S1. I told him that I don't have back pain- but he wants to rule out that the bulging discs are not what is causing my knee cap and leg pain. We don't believe that it is, but he does not want to look at any other options until we rule the back issue out.
Because of that, I will be having a lumbar epidural steroid injection on Wednesday afternoon as a diagnostic tool. I am not super happy about it, but at this point will go for it in the hopes that maybe it really give me some relief! That would be kind of nice.

I then will see my orthopedic surgeon on Friday so maybe he will have ideas then. I hope so.

I am just frustrated beyond frustration. My summer seems to be slipping away from me and I am discouraged about not being able to go for long walks in the woods or stuff like that.

 

[old goat]

:loveshower:Coachie, hugs are with you to wish you a better day and that this will help you greatly.

 

[NatalieMeadows]

I too have to rest elevate and ice every day still and I am nearly a year out :(

I hope you get on ok with the epidural I had one a few years ago xx

 

[wanttoride]

Good God, Coachie! I haven't checked your posts in a few days, and I find this. Who is doing the spinal injection? Please be careful!!!! As you know, it's been 2 winters and 2 summers that have slipped by for me. I'm hoping to get answers on fusion at the end of the month. I can't have any more of my life taken away, and I'm done experimenting, spending time on the couch and not living life. If this spinal injection proves to be negative, then hopefully Dr. "W" will go back into the knee. I never thought I'd consider fusion or even amputation (not going there now) but when you know you have no life, you have to bite the bullet and consider things. Keep on with the fight!!!

 

[WaterBaby]

Good luck with the epidural shot, Coachie! Hoping that this brings you closer to a real diagnosis of what is causing your knee pain, one way or the other. Let us know how it went...

 

[Coachie]

Who is doing the spinal injection? Please be careful!!!! If this spinal injection proves to be negative, then hopefully Dr. "W" will go back into the knee.

Dr. Scott who is a Physiatrist that works out of Downeast Orthopedics is doing the injection. Dr. W. referred me to him after he saw my MRI report. I highly doubt that my slightly bulging discs (and I mean slightly) are causing my pain under the knee cap and I told both Drs that, but once again it just seems like no one wants to listen to me but just do their own thing first. That is why I finally agreed to the injection- because Dr. W will not consider ANYTHING until I have this done.

I see a chiropractor once a week and he thinks my knee cap pain is structural- and that my back is out of whack because I've been limping for so long. I agree with him.

Guess we'll see what happens tomorrow and then what Dr. W says on Friday. Anxious week for me...

 

[Jamie]

Coachie.....like you, I don't think your back is your problem. I still wish you would find a way to get to one of the doctors that I recommended a while back. You have a problem with your knee and you need a good revisionist to take a look and help you. I hope you can find a way to see someone at one of the larger clinics.

Sorry to be so blunt, but this is my opinion.

 

[wanttoride]

I highly agree with Jamie, Coachie. I've been through the "might be related to my back" as well, and it went nowhere....other than a large MRI bill. I guess they have to rule certain things out, but like Jamie says, it is what it is. You need a revisionist...and hopefully, Dr. W will agree that you need surgery. At some point, yes...your back IS going to hurt because of the way you are walking to compensate. If they told me now that my problem was my back, I'd have more than a few choice words to say. I could see if you had an injury to your back, or had taken a bad fall on your back, but from what I know....you have not.
Looking forward to your post about the injection and the outcome.
I understand you are limited by your insurance, but I just don't understand why your insurance won't cover going to Boston if somebody here in Maine cannot help you. You may want to pursue this further, or for sanity's sake, see if you can revise your insurance. I know there is cost issues and concerns, but at this point, you may not have a choice. I'm really hoping Dr. W will do what is needed, and if not, he will help you with a referral to a revision specialist either in Portland or Boston.

 

[Coachie]

I'm waiting for my appointment with Dr. W on Friday before I look further. I think what people don't get is that I HAVE seen a good revisionist (Dr. Bush in Auburn) and he said that I need to "wait it out" and that he would check me again in October. It's the same as many of these other orthopedics have done. I doubt that any Dr in Boston is going to say anything different if these orthopedics haven't. Just because they are in a bigger city does not mean they are better doctors. I have heard good things about Dr. W and Dr Bush and therefore am willing to take my chances with them.

Also, financially, I cannot afford to keep traveling from one doctor to another, getting test after test, just to be told to wait it out. If I only have to travel 50 miles to see Dr. W in Bangor, then right now I am going to do that. It isn't a matter of me not caring or not wanting to listen or anything like that. It is truly a financial matter for me at this time.

The injection went ok. Didn't hurt. My knee pain hasn't changed- no difference at all, but hell, my lower back doesn't hurt right now (of course it never did, but gee- now it really isn't going to...) I could have told them that ahead of time and saved them the time and effort, but a lowly teacher doesn't know what she is talking about when it comes to orthopedics...

 

[wanttoride]

I'm glad the injection went well. Please don't take offense to people voicing their opinion(s). We only mean well....
I know from your posts that pretty much every OS has told you that you have to wait a year. I know it's frustrating, as I am in the same boat, and have been. Unfortunately, we don't WANT to wait and want the pain to go away. Within that year, they are taking advantage to do every test they can think of to rule out anything else that may be causing the problem.
As frustrating as it is, the good thing about it is that once your "year marker" is up, you would have had all these tests to rule out things, and your year won't be prolonged because "other tests" have already been done! That's a good thing!
Don't discount yourself....please. The wonderful thing about being on the Bonesmart forum is that people DO care, WILL give you advice, and will be supportive as well as suggestive. Had it not been for Jo and Jamie and others that have posted, I don't know where I would be today.

From experience, I can tell you that going to a larger hospital can VERY OFTEN be the difference between night and day, and I'm sure that is what Jamie and I have been trying to say to you. You would really be surprised as to what resources Boston has from Bangor and even Portland. If for nothing else, the number of revisions and "specialty revisions" done in Boston vs. Auburn/Bangor/Portland would astound you!
My concern for you is that if this knee pain isn't diagnosed and corrected AFTER the year marker is up, that winter is coming, and you will be working in pain. I'm not rich, by any means, but if it means that I can get my life back, I'd find a way to diminish the financial burden if at all possible. Believe me....I DO understand, as most people on the forum do also. But....I lost my job and cannot work now due to my knee issues. I fought very, VERY hard for disability and got it, but still struggle with Dr. bills...and I will have MORE after I have the fusion surgery. However...if all goes well...I will be able to return to work and be somewhat free of pain and be able to pay these bills.

I knew very little about orthopedics before all of this, but have given myself credit for learning, asking questions and being open-minded and researching what suggestions are given to me. Please don't discount yourself as a "lowly" teacher.....that's not fair to yourself and what you've learned thus far. Think of having the injection as a positive...you've covered that base and now you are closer to that year marker!

 

[Coachie]

I am not offended by anyone's suggestions. I truly am not. However, after spending a lot of money already this year on co-pays and traveling from orthopedic to orthopedic just to hear the same thing over and over again, I am waiting a bit before going to yet ANOTHER orthopedic. Who's to say that they won't say the same thing? Maybe they won't, but at this time, I am willing to take my chances with Dr. W and go with that.

Disability is not really an option for me. Believe me, I've looked into it. I am a teacher and have been told that I can teach sitting down; can teach on the first floor; can teach with my leg elevated in a recliner. I can't get SSI disability anyways as I have never paid into Social Security as I pay into Maine State Retirement instead. You cannot do both if you are a teacher. I support myself and have no other means of support. If I don't work, I will lose everything I own. I WANT to work- want to coach, want to teach. I just want to do all of this with less pain and more mobility.

I have thought about the fact that I will be living more and more time in pain. I've done it for a year now and know that with the way my job works, I will probably have to do it for another school year. Do I look forward to that? Nope. I don't. But going to a Dr in Boston or New York isn't going to change that. I will still have to wait and I will still have pain. Going to another Dr at a larger facility is not going to change my wait time or speed anything up.

Again, I am not offended by anyone nor do I feel attacked or anything like that. I appreciate the advice and concern and I do listen. Thanks.

 

[WaterBaby]

Very well said, Coachie! Here on the forum we share so much in common - especially a desire to be there for others and to offer helpful advice. That is the most wonderful aspect of this forum. That said, we also have different insurances, economic resources, and access to specialists, all of which define our options as patients. I take in all the wonderful advice given, process it and then use what works in my particular circumstances. The good intentions of everyone here are always first and foremost in my mind, and I am very grateful for the time and energy people spend trying to make my TKR experience a little easier.

 

[old goat]

Coachie, I am a teacher too, but in Texas. It is the same thing with the pay into Social Security. However, I did have a good friend who had to retire early and found out a secret about the teacher retirement system. They do provide a little advertised disability plan to those who qualify and have to retire early. But if you want to teach and work, that is another issue. I know I love to teach and really look forward to going back. I hope I can make the day. I would suggest that you have a note from your doctor about your limit on activities if you need this when you go back. Don't assume you can be in the chair and teach. I don't know how your appraisal system works, but documentation will back you up so no one can come back on you and use it against you. You know what I mean? Good luck, it did take me up to a year to really feel great from the first knee. Hugs, Ann