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Revision TKR LCL, Popliteal, IT Band . . . ungodly pain...update

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I kept having pain in the IT band and also in the knee itself. I had burning pain and was losing ROM. I kept going back to my OS who took Xrays two different times and kept telling me everything was fine. I eventually sought out a second OS who with Xrays easily pinpointed my problems. Unfortunately I need a revision. I'm not saying you do but you sound like you definitely need another OS to look at your knee. I am actually going to one now that is an hour away but it is worth it to have a doctor who listens, comes up with an action plan and then goes forward with it. I hope you can get an answer soon as to what is going on.
 
@sassyshar .... you'll notice that I've merged your latest thread with your original recovery thread. Please use this thread when providing updates on your knee or when asking questions related to your recovery. That way we can keep all your history in one place.

I'm going to tag @Josephine to comment on your latest post. I agree that if your current surgeon isn't willing to deal with your pain issues, then you need to find another one who will listen to you. With Kaiser that can sometimes be a bit difficult since you must stay with their network doctors. You may have to drive some to get to another Kaiser facility, but it will be worth it if you can locate someone who can correctly diagnose what is going on. How about checking with your fabulous pain management doctor for some suggestions on who you might see?
 
sassyshar said:
I have fallen twice since TKR but X-rays did not reveal damage.
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It doesn't mean there wasn't damage but it was just soft tissue damage, something akin to whiplash. This can give you pain for quite a while and needs gentle handline.
sassyshar said:
I'm thinking that an MRI will pick up issues that X-rays won't.
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Unlikely unless there is an actual tear somewhere which is equally unlikely.
 
Update on the IT, Popliteal, ACL Pain. . . mixed bag. Kaiser is buying me a tens unit to block the pain "gateways". I'll try anything. Seems Tens helped me a few years back. They've returned me to pain meds even though they insist on ordering short-acting which essentially leaves me in uncontrolled pain 12 hrs daily. They want to throw in Topamax (Yeah! I can loose weight and my mind all at once - aka Topamax or Stupimax) and an ulcer bleeder - some new bizarre strength NSAID - despite me saying "Can't take NSAIDS due to gastric bypass).

Takeaway lesson: You cannot MRI a titanium knee. Duh, I should have known that, but was desperate for diagnosis. I'm still not sure then, if you have ligament damage, how they could ever tell since you can't have an MRI? I'm sure you nurses/docs here can shed some light on this. Doc essentially feels that the ACL and IT band are super overused because the knee hasn't been healing to the point of being able to place full body weight on it and stretching has proved to not help. Who really knows. . . .

I'm also being sent back to Physical Therapy for a bit more work. Next week I hope to begin water walking and stretching along with more IT band stretching. We shall see. Thanks everyone for all this fantabulous support!
 
Quick update at 6 months after RTKR - the new knee itself is coming along in typical recovery fashion, but this persistent disabling pain in the spot where the tendons and IT band are tucked back into the joint -- it's nearly unbearable. My original surgeon gave me prednisone to try which was extremely helpful but when the pills stopped the pain returned. Now on my second round of prednisone. From what I read prednisone is so physically damaging in the long term, that pain medication is preferable. But the BEST NEWS is that I have finally gotten a referral to a new OS who is going to get to the source of this pain and fix it. I don't care what it takes but they have got to fix whatever they started in there. I want my life back! I'm so bored of my own whining and just more depressed day by day with no fix in sight, until this week. Hopefully we will get the medical care needed. Any advice on what and what not to share with new OS? And thoughts on the prednisone train? Thanks all for your feedback. Very helpful. xo
 
I'm glad you have a referral to a new OS. Hopefully, he can look at your knee with new eyes and not be influenced by your current surgeon's opinion.

It would be a good idea to make a list of questions you want to ask and take that with you to the appointment. Keep the list handy and add to it every time you think of something.
Top of my list would be:
Why am I having this pain?
Is there something wrong and, if so, can you do something about it?

I agree with you, that it's a bad idea to take steroids long term, unless it is completely unavoidable.
 
Oh gosh, your journey sounds much like mine. Ortho keeps saying X-rays look great, but after a few months of doing well, I'm having pain in the it band area,mind the front. Stairs and getting in and out of the car are very difficult

I hope you get help,and wish you healing. Sending prayers your way


Sent from my iPad using BoneSmart Forum
 
Make sure your new OS gets a copy of of your records so he knows what has already been tried. When you take your questions with you make sure you have a pen to make notes so you can remember what the OS tells you. I find it helps to have another person come with me if possible. When I went to my second OS we discussed what was wrong and what would be the possible fixes for it. I was fortunate that the OS fairly easilty diagnosed my problem and I knew what the plan would be. Even though I couldn't act on the plan immediately it did help to know that I knew what needed to be done.
 
Greetings Knee Peeps! So I whined and bitched from last October until February or March about this unusual pain where the IT band gets reinserted when they finish up the TKR.

Finally I was able to get a second opinion which was so helpful. Indeed, what has occurred is in the tucking of the IT band back to where it belongs, something went haywire. The area remains swollen and painful but the good news is I only use tylenol and etodulac. No more percocet. Yes!

Update from Feb. is that my OS got a copy of the 2nd opinion and then made additional notes that if the pain continues to do cortisone injection on the lateral side of the knee. My progress went backwards and now I'm back with more swelling, more pain and stiffness than ever. Now the inside of the knee is giving me fits and swollen, so back to OS for another cortisone injection where they are typically done, rather than lateral knee.

I'm back at the gym 6 days a week, really pushing recovery. The more I push the sorer it gets, but it is what it is.
The 2nd opinion OS advised if this issue is not cleared up by July, they will look at scheduling me for an arthroscopic deal to clean out the scar tissue and fix whatever went south at the IT lower side reconnection. We shall see. Anyhoo, wanted to update the ongoing knee saga. xo
 
I'm sorry to hear that you are still having problems. Hopefully the injections help. Keep us up to date. Good luck.
 
I am now 10 months post-op and have had nothing but trouble (pain) from my RTKR 10/15.

Thanks to many of you kind folks who navigated through this with me. I did get a second opinion finally and found a wonderful OS who wants to resolve the pain / IT / whatever issues. He's planning for a longer hospital stay (a new hospital different from my first TKR).

He got me in today for a kind of emergency and followup appt. Manipulating my knee laterally it appeared as if my lower leg was unattached from the knee. He was shocked because in April it wasn't out of range. Kinda freaky seeing my leg do those stunts.

So, one year from my 1st TKR, we are headed into revision land in Oct 2016. I'm not a happy camper but weighing the idea of being in more pain than when this journey began, recognizing I don't have to keep this pain up forever, I figured if not now, when?

I'm reading the revision posts and calming down a bit now that I know what to expect. Thanks y'all for letting me share.
 
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Thank God you found an OS to help you. i had a revision too 2 weeks ago today and i know how disappointing it is to start again. I am feeling a lot of relief from my pain and i hope you will too. take it easy and i have found it comforting to look on this forum and see I'm not the only one. take care
 
I've gone the route of a revision. I never really had a good outcome from my original surgery and found out 5 months after my original surgery I needed it to be done over. I had a horrible recovery the first time but after the revision I recovered quickly. It was the best thing I ever did. After 1 week I was walking with a cane. I stopped using a cane at about 5 or 6 weeks. I totally followed the bonesmart mantra to the letter. The OS that did my revision was someone I felt very comfortable with. I know that when I decide to have my other knee done I have absolutely no fears. I'm sure you will be happy with yours too.
 
I'm so sorry to hear that you must have a revision, but I am heartened that your newest surgeon believes this will be the fix for you. You know, for many people the revision recovery is actually a bit easier than the original TKR because there can be less done to the bones and soft tissue. I hope that is the case for you!

You will notice that I merged your newest thread in with your original TKR thread. It will be very important for us and for anyone else who comes along to read your revision story to know how you got to this point. It's better to have all the posts in a single thread. So please do post your updates and questions going forward here in this thread.
 
Sending you healing thoughts and prayers hoping for a great update. I read the rest of your thread and just wanted to say when i was on percoset it made me very weird "dark thoughts" it was horrible Norco works better for me. Just wanted to congratulate you on your sobriety also. I am a friend of Lois so know the journey is hard, from living next to it. ODAAT
 
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