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TKR Need Help and Encouragement, please...

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I have called one group, and they refuse to take on any more of his patients. Another one said they will not take anyone that is still in post-op. (3 months) My insurance advocate called around and kept getting the same thing, "we can't promise you anything."

My GP feels that is going to be the feeling...surgeons hate taking over other surgeons problems and even though it seems like a big town, it is not. This guy is really well known and not always in a good way. I found him arrogant and not a ounce of caring. He actually tried to put the blame back on me by saying " this does not happen that often but SOME patients do not push hard enough because of pain and adhesions form." I quickly said, my KNEE WAS A BALLOON WHICH NO ONE LOOKED AT and could not push and was never given the proper drugs." I could tell that did not sit well with him.

That is when he got up and said "we only have a small window and a manipulation must be done NOW and started throwing out dates to his assistant and then told me to go to scheduling. Honestly, since he was not even going to see me, I wonder he even knew when my surgery was done. The assistant looked surprised and nervous as I looked at him because HE just said the opposite 3 minutes ago. He said, just like he said in my last visit two weeks ago, that the doc will not do one until 3-4 months because more damage can be done.

Now, my knee is big and swollen again and he wants to do it NOW? I am confused and so upset. I called his office when I got home and told the nurse to ask the doc... exactly what is the WINDOW, how long....because I have NO ONE to help me. When I told HIM that he said....it is no big deal! You just need someone to take you and pick you up....you don't need anyone for anything else.

This is the same doc that said the surgery was NOTHING and just needed someone a couple of DAYS and that I would be able to do anything in two weeks! I am supposed to believe him now? He asked me "have you ever had a surgery before?" I said PLENTY and I am a cancer survivor and NEVER had has such problems. I also reminded him that I TOLD HIM Percoset does not WORK on me, maybe for a hour He got snippy and said...Did the "block" not work? I said yes it did until it wore off. I said even the P/T in the hospital said I could NOT go home I was in bad shape and should go to Rehab. He said why did you not go. I said, your case worker said it was not covered by my insurance.

That is all we said. I don't know what I am going to do. At least I have my GP but he is even saying what can he do? He said he would help me all he can...prescribed the muscle relaxer and will give me a referral to pain management which my OS refused. I need to just cut my strings with him....but am scared to....look what happened when I fell. At least they took x-rays and checked me out.......I have been through so much and I must say NEVER have I been treated like this by anyone. I have always been that perfect patient. What hell....thanks all for being there.
 
Your very first line says "I have called one group, and they refuse to take on any more of his patients". Doesn't that tell you what you need to know?

You are coming close to the 3 month mark; 2/3 of the way there. Time to start calling revisionist OS in your area and outward.

Specifically look for an OS that does revisions. A revisionist surgeon should be comfortable with redoing others work because that is what they do day in and day out.

When you call, ask for the to speak to the physician assistant and then see how long before they call you back. Then provide a very brief statement, one or two sentences total, summarizing the situation and allow them to ask follow up questions; see if the questions they are asking are related to the issues that are important to you.

Also, if they don't take patients before 3 months, make an appt at 3 months and one day, then at least you have an appt ready to go. And if you make an appt, then also make list of your questions, including post op protocols.

Not an important matter but that's a veeeeeeerrrrrry loooooooong paragraph :) and a difficult read. It's like breathing; stop and take a huge big breath and start a new paragraph at the same time, ok????:) :)

Wishing you the best!
 
Hello!

I read through your last post and listened to all the frustration and grief you are dealing with!

First, let me ask you, since they didn't agree to a rehab center, did you do outpatient rehab?

Has he mentioned icing elevating and getting the swelling down?

I have a friend that I had to convince that icing elevating and changing to a different PT was the only way he was going to I prove! Her knee was swollen and huge, the PT kept talking about the doctor and trying to scare her! She went to a PT that had water therapy and land therapy, and they worked very gently with her leg restoring the function! She will graduate from PT next week and she says she wished she had used them in the first place instead of "enduring the torture, believing that pain was gain!"
 
You have been through so much, given time and healing you should be fine, it's getting there that is hard.
You have some difficult decisions ahead of you and we are here to support you what ever you decide.:friends:
Wishing you all the best,
 
BrnEydGrl said:
I have called one group, and they refuse to take on any more of his patients.
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That says it all really! The guy's a jerk!

Honey, there is only one thing you need to focus on - this is NOTHING to do with adhesions. It has all happened because of the atrocious lack of care and decent pain management and then your fall. You said yourself your leg is like a balloon so it's no wonder your flexion is only 60. No-one can tell if you have adhesions until that swelling is got under control. So please, DON'T be fearful. You have done the right thing. Give it time. Remember, should an MUA be found to be necessary, it can be done weeks or months from now. There is no rush and doing it so soon will only make things worse right now. Just concentrate on getting your medications sorted - go to a pain management clinic if necessary, and then on slowly getting yourself and your leg in order.

Come here often and let us support and guide you. Okay? :console2:
 
I am just appalled by your terrible treatment!!!! Josephine is right.. You need to get that swelling under control..get that leg elevated and iced!! Stay away from PT for now. Do nothing with that knee!! Elevate, ice, ice ice, and take it as easy as you can!! Once that swelling is under control your ROM can be addressed with gentle stretching. All that swelling and trying to bend it in that swollen state can actually CAUSE adhesions!!!
Please go easy for now and lets get some healing started sweetie. While you are laying down with that leg elevated and icing, call around for a revision specialist dear one. You need a surgeon who will treat you like a human being and not a case file!!

Hang on dearheart..we will do our very best to help you through this. You are part of our Bonesmart family now.
 
We are here for you so please don't be a stranger. Rest now, ice, elevate, and do pain control. We are here Take care. Tashia :friends: :console2: :flwrysmile:
 
I am going through so many emotions right now. I guess the reality of eventually needing a MUA is hitting me. Of course I have made up my mind my original OS is NOT going to do it. With all aside, and what I have been going through the fear is really setting in. I went through so much hell, with nothing more than mild percoset which never worked on me, that the wounds are still so fresh in my mind. Even though I could barely bend my knee the pain was subsiding until my small "spill" the other day. I am still a bit swollen but again the pain is not that bad. Now to think of a MUA just makes me want to cry. I can't imagine starting all over again!
I am so darn scared, with no one to be by my side again. All sorts of things are running through my mind. What if the MUA doesn't work? What if they form again? What if I will never walk "normal" again? Why did I even do this? I can't bear to think of going through that pain again and no one there to care or help me. What did I do wrong? Was it my fault? Did I not push it enough because I was a wimp with the pain? Will I do this again? Then I remember the home nurse words " It is NOT your fault, it is impossible to bend with the extreme swelling you have." I really did like my P/T...why in all her years had she not seen someone as bad as my ROM? Is there something really wrong?
I am having a really difficult time. I wish so much my husband was here, just to have a hug and tell me it is going to be ok. It is so darn hard to do this totally alone. I never felt so alone in my life.
I just had to get this out.
 
Oh, dear one, I wish I could be there to help you. Please do NOT think any of this is your fault. This did not happen because you didn't work hard in PT either!!! If your OS told you that, he is not only a jerk, but dead wrong!!!!! No one works a new knee replacement hard!! That is the wrong approach my dear, so put that out of your mind. Your knee is so swollen right now, and the tissues are trying to heal. Working hard at PT. just makes it worse sweetie. As far as the MUA, you have the right to refuse it. At some time down the road you do have the MUA, it is not that bad!! Nothing like the original pain of the TKR surgery. It only takes a minute or so, you will not be cut on. The surgeon will just bend your knee back while you are under anesthesia to break loose any scar tissue or adhesions. You may be sore, but that all.
there are lots of folks here that had MUA 's. they noticed improvement in their range of motion immediately!! You will not be starting over again like surgery.

For right now though, you need proper pain meds, elevation and ice, and to get the swelling down before you do anything. And you need to know that you have people here that really care even if we aren't physically present for you.

I, for one, will be keeping an eye on you, so you come here and let it all out dearheart. Myself, and I KNOW more of the members, will be watching for you and available whenever you need us.

You WILL walk normal again!!! It may take time to get you there, but we will see you through it. Lean on us..you are part of our family now and you are not alone in this.

Hugs, and prayers coming your way dearheart.
 
Hon....please go back and read Josephine's post. Re-read it if necessary.

You did nothing to cause this. Your problem is swelling and most likely NOT adhesions. Even if you can't see the swelling, it's there. Your knee compartment is very small and the slightest bit of swelling in that area can cause problems with ROM.

The important thing is to get a couple of weeks under your belt with managed pain, lots of rest/ice/elevation and only the gentlest of bending and stretching for that inflamed knee. You cannot expect to bounce back in just a few days after that fall. It will take some time for things to stabilize.

Elizea had an excellent suggestion. Start your search for a revision surgeon now and make the appointment as soon as they will let you make it. It is NOT a given that you will need an MUA. It is NOT a given that you have adhesions. So please, don't let yourself worry about these things. Consider the source of where this information came from - an egotistical surgeon and an unprofessional therapist.

You are going to be okay. You have your whole BoneSmart family to help you. We'll be right there in spirit through all of your appointments and in your shirt pocket each day. We're as close as your computer keyboard. We care about you and we will make sure you have factual information and support to get through what lies ahead.

Even the best of surgeries have difficult times. You may have some unique situations because of your surgeon, but believe me.....we all feel as you do at least once or twice in recovery. You do have some positive things you can be doing right now. Let's focus on those!!! ((((HUGS)))))
 
Gosh, I don't know what I would do without this forum. That is from the bottom of my heart. I am so tired of crying and feeling so bad. I do feel I finally have the pain under control finally. The Ibuprofen seems to really work for me. I take an occasional Nucynta. I am so worried that I will not have it after a MUA. Maybe if I am with a different doctor or with a "pain management doctor" I will feel better.
That OS even had the nerve to ask me if I have ever had surgeries before. I said I have had plenty and I am a recent cancer survivor and have NEVER gone through anything like this. I had ALWAYS had my pain controlled and I reminded him that I told him that Percoset never worked for me. It lasted maybe 1 1/2 hours. It fell on deaf ears, I could tell. He was smug and said a MUA was the only thing that could help the adhesions that have formed.
I read all your posts over and over and the Library posts too. Swelling had always been a problem from day one since he did not use drains in surgery.
Monday I will start calling around. They all want operating notes etc so I will need to go and get them. I will then be cut off from any meds so I have to make sure my GP is on board until he can get me in to see pain management.
Bless you all...
 
This is a great move on your part! Get a doctor who actually cares about you as a PERSON and not just a patient! Look at ratings from patients online of the OS you're searching! They will tell you like it is in most cases. I don't care about personality as much as I know he will take my complaints seriously! He is not there to be my friend, but he is there to treat me with respect! :happydance:
 
BrnEydGrl said:
The Ibuprofen seems to really work for me. I take an occasional Nucynta. I am so worried that I will not have it after a MUA. Maybe if I am with a different doctor or with a "pain management doctor" I will feel better.
Click to expand...

Dear one, please stop worrying about how you will be after a MUA.

We have all told you that it is not a given that you will even need a MUA.

It's the swelling that is stopping your knee from bending and it is impossible to tell your knee's full potential until you have got rid of the swelling. Treat that knee gently: Rest, ice, elevate, and only do gentle exercises. Concentrate on getting the swelling down, so that when you finally see a decent surgeon he will be able to assess it properly.

Best wishes :flwrysmile: and hugs to you (((((((BrynEdGrl)))))))

Caryl (Celle)
 
I know you are going to make it. I also a Widow and a Cancer survior. I time you are going to be ok. take care Tashia
 
you know, all of those feelings. am I crippled for life, will i ever walk/sleep again, the surgeon must have made a terrible error in surgery for me to be like this, I had them too. I didn't have your pain problems and my bend was improving. I am married but although my husband was a godsend, even I felt very alone especially in the middle of the night. I'm no expert but I feel that if you can get your pain and swelling under control you will be a lot happier and may not even need MUA. I finished up being prescribed an anti depressant .
 
BrnEydGrl said:
Thanks again. I may need to explain a bit more regarding my therapist. She suggested putting me "on hold" because she felt we were using up all of the allotted insurance...which is 50. She thought I would need them down the road when the swelling let up.She felt I could do the same at home at my own pace since it is still swollen. She was really great and too was angry at the doctor, she strongly suggested me to find someone else. It may have come across on paper different than what I actually meant. She never pushed it and did massage and just about everything but felt there was absolutely no change whatsoever in weeks. She was totally on my side,of course EVERYONE seems "guarded" and protecting there jobs.:sorry: I asked whether she had seen anything like my knee....that is when she made the comment and again encouraged me to see .
Click to expand...

Hmmm, so even your PT was telling you to get another OS? They know your knee better than we do but let me tell you a little secret :whistle: :heehee:

The "window of opportunity" that some doctors use is a scare tactic designed to "force" you o work harder! I am willing to bet that you have been doing heel slides not to the point of a little discomfort, but to pain, because of fear of what your doc said! My friend had the same mindset, and I told her to quit and get that leg up! I brought an ice machine, extra body pillows because her couch was so low, and a wedge with support to get that leg in the proper position. She finally started doing what I had asked, and the swelling started going down. She switched PT and they did water therapy and on land therapy to get gentle movement back. Her knee had become almost unbendable! It has taken three months to start undoing what was done, but NO MUA in her future! She is getting ROM back slowly but surely! :happydance:
 
BEG, please listen carefully; you did not do anything wrong. You did not cause the issues with your knee. It is physiology and circumstance. Some of us just happen to fall into a bad situation that seems insurmountable at the time. I have a few suggestions for you; here goes:

1) resolve to work on one issue at a time. If you focus on simply controlling swelling right now, it will have immediate effect. Ice, elevate, and get the ice all the way around your knee, use an ace bandage to wrap it. After you ice, use your Ted hose or cut out a pair of stockings and pull over your knee. This will help push the swelling towards your lymph system and drain away from your body. Look for a massage therapist who specializes in lymphatic massage and get an appointment. This has been a huge help to many of our Bonesmart friends, myself included.

2) work on finding a new surgeon. You said your pain is under control right now. Don't worry about anything except locating a new medical team to help you get on track. While you are icing, see step one, search the directory here and try to locate several options that are close enough to drive to and start making calls. Do not go back to your current OS. You know what is waiting for your there and it has not been helpful.

3) stop worrying about MUA. That can be done at any time, there is no window of opportunity, complete and utter bologna! You need to put the idea of MUA in a box in your head with a very tight cover. If at some later point it's needed, then we can deal with it. I have had two MUA done and it is nothing to worry about. It can be the key needed to jump start recovery, but you are at step "C", and that is step "P". Let it go like launching a paper airplane.

4) ask your insurance advocate to find you a good psychologist/therapist. You are clearly overwhelmed with grief and need help to come to terms with all the tragedies you have had to endure in such a short period of time. You probably feel like you are at the bottom of an avalanche and there is no way to dig yourself out. I have been there and know the feeling all too well. A professional can help you sort through all the emotions you are dealing with and help you move forward. You will never forget all the challenges you have faced, but you can learn to deal with them. I have been taking an anti depressant for years and it does help.

5) start a journal. Write down what is happening and you might see a few good things in there, like finding Bonesmart. Try to stay in the moment and not worry about the what if's.....control what you can and know there are some things we can't control. The more you focus on never walking properly again, having to deal with another procedure, the worse you will feel. It's like blowing up a balloon. If you put air into it, it just gets bigger. If you don't put air in it, it stays small and flat. It doesn't disappear, but you can fold it up and put it in a drawer where it belongs.

6) ask your children for help...you need support. Ask anyone you are or have been close to for support. So many times, we overlook the idea that our circle of family and friends has no idea how to help us. They feel helpless and don't know how to approach us. You have to make the first move. Be like Nike and just do it; you will be amazed at the results!

Take it from me, this is far easier to type than to do. Just realize that you can overcome these issues. It simply takes time, which you have plenty of. I believe firmly that action relieves anxiety. That action however may be the search for a new medical team at first, then move on to the next thing, etc.

This new extended family at Bonesmart is always just a few clicks away. You have seen the outpouring of care and concern. Try to find strength in all the people here who have responded to your posts. It warms my heart when I see so much compassion and renews my faith in God and mankind.

I am sorry for the long winded response. I just want to have you think a little different than you have been.

All the best to you and do know we are here!

Dawn
 
I have to chime in with an addition to dawns excellent post...in your journal write five things that you are grateful for each night just before you go to sleep. Focus on them as you fall asleep. Plaster your fridge door, your bathroom mirror and any other place that will catch your eye during the day with a positive affirmation such as, every day I am feeling better and stronger. You don't have to believe it is totally true but it should be where you are trying to get your thoughts to focus. You can also write it over and over once during the day...it all serves to help reprogram your brain.
Two books might be helpful...feeling good by David burns and full catastrophe living by Jon kabat-zinn. They both deal with helping yourself in difficult times. Make sure you laugh every day too...laughter is very healing!
Remember you have lots of people rooting for you.
 
Oh yes! I have found that. Laughter is the best medicine for me besides prayer! Look up jokes on Internet, read Reader's Digest laughter, follow some of our zany threads on here, watch funny movies, tv programs, etc! Get out of the house! I found that the more I dwelled on my situation the more I moped! I had a friend, Mom, Hubby anyone drag me out! Once I was out and riding around, I felt better! Yes, I know it is hard to get your leg in the car. Push seat all the way back and have them recline it as far back as possible. If you don't have any friends, let me know! I have a friend that would be glad to come and take you for an outing! Her mother had a knee revision and she flew to TX to get it fixed. She was dealing with systemic MRSA though so u don't need to come to TX. But Jen lives close to you! :happydance:
 
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