@Momma-me, I have been reading through your thread and I wanted to offer you a big, huge virtual hug!!! I have very similar knee issues as you had before your surgery, so I can relate. I had an arthroscopic surgery on my right knee for the same issues 10 years ago which included a microfracture, lateral release VMO advancement, and MPFL replacement. I was very pleased with the outcome of that surgery many months later, but did NOT expect the recovery and restrictions that went along with it. I am scheduled for a PFJ replacement on the right knee on the 18th but I had a long talk with my surgeon last week at my pre-op appointment because I am so anxious about it. Nearly everyone I talk to about my upcoming surgery seems to say, "why not just do a full and be done with it?" Thankfully, my surgeon is willing to do either one. When I left the appointment last week, I told him I would like him to decide which is the best solution, but as this week has gone by, I am starting to feel that the full is the right solution. I wish you could fly out to California and see the orthopedic surgeons at Stanford. They are THE best! If I didn't have them, I would take some time off and fly home to Chicago and go to someone at Rush Memorial.
I don't know anything about the treatment of CRPS. Is it a nerve problem? My surgeon automatically puts his patients on Lyrica for a short time to help with nerve pain. I wonder if that would help you, too? You must be so depressed and rightfully so! Have you tried talking to anyone outside of this group? I think the emotional support is wonderful here, but I can "hear" how hopeless you feel and it breaks my heart to know that anyone feels that way :( Maybe some additional emotional support would be helpful. Trust your gut. You know your body and I think you know that answer and that's to go get a revision. Would your insurance allow you to travel to get surgery at Stanford or Rush?
@Jamie I found one in Charleston
Can I say his name or do you want me to PM you?
@Irish471 thank you so much for your kind words. I am sorry to hear what you have been through also. It is very discouraging. It has taken a HUGE emotional toll on me (as well as physical, obviously).
I actually did see a therapist for a while. She wanted to put me on anti-depressants but I just wanted to try talking with her first. She said it is absolutely understandable to be anxious/depressed when you feel like your life has been taken away from you like it has me.
I wake up thinking about my knees, go to bed thinking about them... lost my employment over them, make decisions based on them.. they literally RUN MY LIFE... and NOT in a good way :(
I didn't ever feel like I had CRPS. My diagnosis was "possible CRPS" because I had some of the symptoms but not all of them. I didn't have the MOST common ones, ie... the sweating, weird hair growth, allodynia, pain shooting randomly, no numbness, etc.. My pain was all localized in the knee.. redness, swelling and hot. Obviously, it was hot because it was in an inflammatory state and was trying to heal and it couldn't. No big surprise there.
Since then, I have had the PFJR, 3 radio-frequency ablations, the OATS, injections, etc and never had any type of "flare up" so I think sometimes that surgeons refer you to a pain specialist when you still have pain that they don't know what to do with. Which is OK, but then the pain docs also want to put a label on you because no one is sure. I mean, I know CRPS is a legitimate diagnosis obviously, it's just that I don't think I ever had it. It's just super frustrating.
So, you are scheduled for your surgery March 18th? Did you decide to go for the full replacement then? It's def a very individual decision and I am glad you have a surgeon in whom you feel confident and you can trust! That is super important!!
I saw a revision specialist here in SC. They recommend TKRs on both knees.
I don't know whether to feel relieved or terrified. So, I definitely feel BOTH!
He told me I absolutely need a revision to a TKR on the right, and because the left only has the arthritis under the patella right now, it is up to me if I want a partial or just go for the total. I don't want another partial. I just broke down in the office... I was feeling so many mixed emotions... I don't know what to feel. I am somewhat still in shock. I went in there just hoping they would give me some advise and get some fresh eyes and they looked at the MRI, Xrays, did an assessment, etc.. and told ME what I needed. IDK.. this might be an end to a very long battle but I'm super nervous.
I just got a call about an hour ago and they told me that being that I am in good health, the doc doesn't see any reason not to do both at the same time!!! YIKES.
So... next Wed, I will get an official date. They said it will be sometime in April.
Once this is official... can I make a post in the pre-op area and start a new thread or do I keep this one going?
@Momma-me, that is wonderful news for you!!! Scary, definitely! I think we all feel that. Once you start on this road, there's no turning back and that scares me tremendously. Finally, someone listened to you and can fix things! I kind of wish my surgeon were doing both of my knees at the same time. But at the same time, I wan to see how the one goes first.
I still don't know which way my surgery will go. I change my mind hourly...lol! I really think he needs to take a look to see what is really happening in there. Surgery is Monday, bright and early
@Irish471... oh so, you are going to let him decide while he is in there?
Yikes.. makes sense but I can see how that would illicit more anxiety!
I will be thinking of you and checking in on you!
My dog has surgery monday too so you can send eachother healing vibes.. LOL
@Jockette, OK thank you... I will be doing that and doing ALOT more research on bilateral TKR. I am DEF going to need advice!!
Sure, it's fine to post his name here on the forum. I'll take a look once you give me the name. Be sure and tag me so I see it quickly.
It's your option about having another recovery thread or just continuing this one. But I think Jockette's suggestion was a good one. Keep this thread so your story is complete in one place. We can make a title that reflects all you've been through as you progress in recovery. Then use the pre-op forum to ask any questions you might have about the upcoming bilateral surgery. I know it seems overwhelming right now, but try not to worry about having both done at once. You'll be back to yourself so much faster that way and it really isn't much more difficult than dealing with one knee.
You can read plenty of bilateral stories by going to the knee recovery index page and clicking on the "bilateral" prefix. You'll get a new index listing of all the bilateral knee threads on the forum.
@Momma-me WOW, I started reading your thread tonight and was so caught up in it that I read through the entire thread without stopping. It seemed like I was feeling every emotion right along with you! From hopeful, to helpless and all the other emotions in-between. I was right there with you. I would be happy, then sad, then angry at the way the second opinion surgeon treated you! I would actually tear up just reading all the ups and downs that you have been through. And if I felt all those emotions just reading about it, I can only imagine how difficult it must be for you to actually live it!
Reminded me of my own surgeon when he told me I needed another new knee implant just a different kind. I had just had the original one 6 months prior. He didn’t try to explain why the first one didn’t work. Even though I broke down and was crying in his office, he was just nonchalant about the whole conversation. No sympathy or compassion showed at all. It was just yes unless you want to walk with the brace and a cane for the rest of your life, then you are going to have to have another surgery. I had complications from the beginning with the original TKR, needing 2 units of PRBC’s, low blood pressure which prevented me for getting pain meds for the first 12 hours post-op, a pain block to the knee which did not work and had to be removed the following day and of course uncontrollable pain!
So happy that you found a surgeon that will do what needs to be done. I wish you nothing but the best of luck with the surgery and an uneventful and successful recovery! I look forward to reading updates that are positive and uplifting from day one! Of course we know there will be good days and bad days as to be expected following any major surgery. Just praying there will be more good days than bad, and you make a steady recovery that gets you back to doing the things that you have missed for so long!
Gosh, what a difficult decision. Having them both done together gets it over and done with, although if one is a partial will it involve a TKR at a later stage? Can your OS give you any idea how much life is left in the rest of the joint? Just over 2 years ago I was told most of my bone on bone was the patella, but I still had a little clearance between the upper and lower leg bones although my OS advised it was so close as to warrant TKR's on both knees. Talking it through with him I opted to wait. I'm glad I did, although the 6 months before surgery were difficult at times especially in the left knee. I'm to have the right done at some point, in 4 months was suggested, but the right is doing ok at the moment so I'm probably going to leave it a little longer.
You need to do what is right for you though, so gather as much information as you can and I'm sure you'll come to the right decision. Take care
I cannot imagine going through a bilateral. But should you opt for this, I wish you speedy healing and once done, you’ll walk freely. I’m also battling to come to terms with still having to go through this all again with my left knee. Difficult to know how best to get this problem of pain resolved forever.
@Momma-me - I know it must have been a shock when the surgeon suggested you have bilateral TKRs, but I think it's a good idea. One surgery day, one recovery period and, hopefully, two knees that are better.
We seem to have had a lot of people whose patello-femoral replacements have been less than stellar. I wouldn't have one if you paid me.
On the other hand, I've had one partial and two total knee replacements. My partial lasted for 11 years, but even so I didn't want another and I chose to go straight to a TKR when my second knee needed replacing.
My TKRs are now 7 years and 4 years old and they are so good that I almost never think about my knees.