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Fusion Long ride to a successful Fusion

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Hi again! Coachie....I had my first surgery done in Bangor. I'm in the process of suing him for negligence and/or malpractice due to putting the components in "crooked" and passing me off to a pain specialist. LOTS more to that story, which you can find in older posts. Anyway...my second opinion was in Portland at Orthopedic Associates on Sewall Street. I see Dr. Stephen Kelly. He is FANTASTIC! He's extremely dedicated and very, VERY smart! His nurse, "Kate" is an angel! He really listens, and won't do anything unless he's confident that he can help you in some way. He lives and breathes knees! If he does not know, he finds out answers and other alternatives. I've already referred 2 friends to him, and they will never have a TKR or another surgery unless it's done by him. Although my "recovery" from the botched job done in Bangor is taking a while, I know the end result is going to be ok...as long as I'm in Dr. Kelly's skillful hands. I've seen 5 ortho. Docs in my lifetime, and he is superior and will work WITH you, look you in the eye, and not "poo poo" your concerns and aches and pains. He will tell you that he won't go in and do any type of revision before a year has passed from the surgery done before...but it seems you are almost at that point.
I have been in several braces over the past 1.5 years. They are made by "Donjoy" and have metal hinges on the sides for stability and metal "stops" you can change to set your degree of extension and flexion. One is a short version going from mid thigh to just below the knee. The other is a full leg brace going to the top of my leg all the way to the ankle. The longer one has "dials" on the side that are set for flexion/extension and locking the leg straight. Without either one of these braces, I can't "walk" very far (100 feet at best) because of the instability and pain from bending and the percussion you get when you put your foot down on the pavement. The "percussion" radiates from the foot, up the leg and into the knee. OUCH!!!!!
The cast is NOT made of plaster, like in the "old days". It's lighter and made from some special material that you soak in water and then wrap around the leg. The material looks like gauze wrap. (My husband thinks it's made of polyurethane) It took about 20 minutes to harden completely. After it was hardened, they cut from the ankle to the top and slid the cast off. They made the opening on the inside of the leg, about an inch wide. 7 Velcro adhesive was then attached, and the edges were wrapped in something so they wouldn't cut into me. I can slide my leg into it in the morning, then I have to adjust it to me sure it's where it's supposed to be, then close it up by pulling the velcro straps tight. Walah! Removable cast! .)..and the "fun" part is I can have another one at any time in any color I want! LOL (this one is off-white) Dr. Kelly told me I'll need another cast about every 8 weeks, or if it gets rank and dirty. On another plus, (Jo will know about this) it keeps my leg warm! RSD makes your affected area cold, and my leg is ALWAYS cold. Having the cast on makes it feel like it's in a nice, warm blanket!
Dr. Kelly has gone step-by-step with me since we met. We talk, we discuss, and we try options. Some have worked...some have not. As he says.."I am a unique case". How special! LOL :blush:
 
Jo...can you get Damaso to join this thread? I dont' know how to find him, and I'd like to keep all the posts centered here if possible. THANKS!
 
Audrey-
I am seeing an orthopedic in Bangor right now. I am seeing Dr. Walsh (is he the one who botched your surgery?) My original surgeon was Dr. Swett in Dover-Foxcroft and after my pain wouldn't go away, I went to Dr. Martin in November and he told me that my knee cap pain was normal and when I said that I didn't have that kind of pain in my left tkr, he told me that I probably had, but i just didn't remember it. Like you can forget having that kind of pain!

We tried (my family doctor and I) to get a referral with Dr. Kelly in Portland, but he denied my referral saying that I was too young. I don't know much about that, just that she told me that he had denied the referral due to age.
 
Coachie, I have started to read your posts from the beginning and you and I have got to "chat"! My first surgery (the botched TKR) that was done in Bangor was also a non-cemented knee! The OS told me that because of my age, I should not have a cemented knee. He told me that the "cement" would bond to my bone, and if/when I had to have a revision, they would have to take more bone off because of the cement, and that MIGHT not leave enough bone to do a revision when I got older. (I was 47 when I had my first TKR, knowing they don't last forever).
Well get ready....you've GOT to hear this. When Dr. Kelly went in to do my revision, the pieces that were SUPPOSED to adhere to the bone FELL OFF in his hands! After an entire year, the components NEVER fixed themselves to the bone. To be fair, there could be several reasons as to why they didn't bond, but because I was unable to put weight on the leg and "force" the components onto the bone, it would be very difficult for the non-cemented pieces to bond with the bone. Just not gonna happen. Sure, my body chemistry may have had something to do with it, but we all agree...highly unlikely.
I now have CEMENTED components, tibia and femur, along with a 6" rod running into my tibia to help stablize the entire thing. Dr. Kelly only does cemented knees...and for very good reasons. They work. The "cement" they use does NOT work its way into the bone, like my first Dr. said. That's bull. So why get a non-cemented knee? I guess it's how convincing the Dr. is so that he can do one. If there is one thing I've learned through all of this...trust your gut, and ALWAYS get a second opinion. ALWAYS! Note: it is our belief that because the components were put on "crooked", the non-cemented components could not adhere to the bone.
Your pain may be caused by looseness. It sounds similar, but yet, everybody's situation is different. I'm glad you are on an anti-depressant and hopefully, this one works for you. I was on Tramadol for quite a while to help with the pain, and it worked...sort of. I know how frustrating this is for you...wanting to know "why does this hurt" and "why am I in pain". We want answers and we want them NOW! I hate being told I have to wait a year, but I sure don't want him going in if there is a risk of infection, trauma to the knee too early, etc. I never had a bone scan, because the CT scan showed the "crooked" pieces. The CT scan did NOT show if the bone was growing into the components. Having them "fall out" quite literally with no bonding was a shock to all of us!
Answers will come...in time. And so what if you have to wear a brace. As long as it enables you to get by UNTIL something else can be done, then wear it with pride! The last thing you want is to fall down and break an arm because you are unstable. Use the "elbow" crutch if you need to. I used just one for many months. I tried using a cane, but it just didn't give me enough stability. Better to be safe. Walk around the house without it, but if you have to go outside/shopping/...use it!
I want you to know that I've had good friends "poo poo" me because they think I'm not trying hard enough to fix "the problem" and relying on "aids" to get me through. I'm really finding out who my true friends are through all of this. Just today, I had somebody say "why would you want to have a cast on during the summer"? Well...it's not that I WANT to have it...I NEED it...and it works! Jo....should I get a neon pink one next time? LOL LOL LOL
Being in less pain has made me a happier woman. Yup....more surgery at some point and more questions. But...I can handle it now. Maybe you guys should start calling me "Peg"! LOL LOL
 
Coachie.....OMG! OMG! OMG! Stay away from Dr. Martin!!!!!!! I know he is in with Dr. Walsh, but no, no, no!!!!!! Do you know what I am saying??? However, Dr. Walsh is very good. If I had gone to him in the first place, I don't think I'd be in the situation I'm in now. If you need a revision, no matter what....GO TO DR. KELLY or seek another Dr. at OA in Portland.
 
Coachie.....write a personal letter to OA in Portland. Explain your situation to the detail. I also was denied my referral to Dr. Kelly the first time but after I wrote the letter, he agreed to see me. If he did not think that he could possibly help me, he would have referred me to Boston. Our first office visit was 2 hours long! It was the letter that got me in!
I am not surprised at all by Dr. Martin's comments...he is an A**. He told me that the pain was all in my head, and pushed me off to a pain specialist in Bangor. He told me point blank that he did an excellent surgery and that the pieces were all aligned correctly. He only looked at xrays taken in his office to come to that conclusion. Oh...did I mention that my foot turned outward to almost the 9 o'clock position? Dr. Martin said it was because my muscles were weak. I asked the *** if there were any other tests that could be done to determine why my foot turned out (CT scan, MRI) to which he replied "no".
If Dr. Kelly will not see you, there is another Dr. at OA that might. Again...write the letter!!!!
 
Dr. Martin was my first "other" ortho that I saw and I did not like him either. He also told me the pain was in my head, and that it was because I was "over doing" things at pt. Funny thing is that my PT had sent a note along saying how little I could do because of the pain and such- that we had just been doing iontophoresis for a few weeks and very light stretching- yet he told me I was doing too much and if I slowed down, it would get better.

We'll see how Dr. Walsh works out. I've seen a total of 4 orthopedics (including my original surgeon) since my tkr last June and each one has said something different. It's frustrating! I'm curious as to how this is going to pan out.

I just went back and reread so many of your old posts and while I don't have RSD, there are some similarities to mine. I have had so many doctors tell me to just "wait it out" when I cannot physically or mentally do that anymore. I think I finally have Dr. Walsh listening to me, but who knows what will happen.
 
WOW! Dr. Martin told me the same thing...even after letters were written from my PT telling him the exact same thing! Oh, how I hate that man! ........I think you are in good hands with Dr. Walsh. He is highly regarded by my PT and the company she works for. However, it would not hurt to ask Dr. Walsh if you should seek a second opinion in Portland or Boston...no matter what. If you had RSD/CRPS, your leg would be cold, and possibly turn a reddish purply color when you are using it. There are several different "signs" to RSD/CRPS, which you can find on the internet by searching. I would be willing to bet that something in your knee has not healed/attached properly. The pain is NOT in your head...it's in your knee. Your body is telling you that something isn't right. BE YOUR OWN ADVOCATE! FIGHT for answers and don't stop asking "why"! Is there anything you can do that will make the pain lessen or go away? Does wearing the brace help? Do you get pain if your leg is kept straight? Any pain if you have it elevated and on a pillow? Any discoloration? Does it hurt when you try to lift your leg straight up when you are on the floor? What is your extention and flexion degrees right now?
 
Jo....can you contact and ask Damaso to post to this thread? I'm really curious to find out if I end up having this fusion, if not having use of my quad muscle (due to Dr. injuring it during surgery) will/might affect my ability to walk. I only have about 30% use of my quad right now, and that's after 9 months of trying to "get it back" thru PT/exercises, etc. Still...no quad muscle past this point.
Being in this cast obviously helps support the knee AND the entire leg, as the cast goes mid-thigh, encapsulating my quad muscle. The cast is really acting like a quad, isn't it? So....if I have the knee fused, but don't have full use of the quad to hold me up, am I gonna land flat on my face or is the fusion going to be enough to stabilize everything? Soooo many questions I have! :rolleyespink:
 
Hi Audrey!:biggrin:

I am keeping up with your posts! I remembered the trouble you had before you left for awhile and I am sorry that it has come to the possibility of a knee fusion just to be free from pain.

You are such a vibrant, outgoing young woman, and I wish that they had some way of "fixing" your knee without fusing it!:scratch:

No matter what though, you will be successful and so I'm not worried either way! You kept my spirits up when I was down, and I know that you will get through anything life throws at you!:wink1:
 
See post #11, Audrey - I already did!

I also have told Coachie that her implants are loose.

As for the cement issue - that thing about having to cut a lot of bone to remove it if/when a revision is done is a lot of rot! That's only in cases of infection. Otherwise, they just ream out the old cement and put new in on top - called a "cement in cement" fixation. If the old cement is firmly embedded there is no need to remove it all.

You can see how cement embeds into the bone matrix here Cemented and uncemented hips I know it's about hips but it applies equally to knees.
 
wanttoride said:
Is there anything you can do that will make the pain lessen or go away? Does wearing the brace help? Do you get pain if your leg is kept straight? Any pain if you have it elevated and on a pillow? Any discoloration? Does it hurt when you try to lift your leg straight up when you are on the floor? What is your extention and flexion degrees right now?
Click to expand...

I know that I don't have RSD as I don't have discoloration or temperature changes. We researched that pretty heavily back in December when the pain was still there. My knee is swollen all of the time and there is nothing that helps that. My pain is not managed well. I haven't had good pain management for over 8 months now. I am currently on Cymbalta but after 3 weeks it still isn't helping, so I also have some Lidocaine patches which I've been wearing for 4 days now. They don't help either. It's a deep bone pain that I feel.

I don't wear a brace because the one that was suggested for me makes my knee cap hurt too much. I cannot even take a step when I have it on as it pushes the knee cap down against everything else and the pain is horrific.
My knee mostly hurts during the process of standing and sitting, though it also hurts when I am walking. The knee cap pain is the worst part.

I don't know what my rom is. It's good though. Maybe 0-120?

I've had an EMG that came out fine and even though I was told it was too early, an orthopedic in Auburn suggested that I have a bone scan. I had it bone scan on May 6th. The scan said that there was mild increased bone turnover in the right tibial area and that the pattern is not consistent with loosening but does indicate some stress in the area.

My next step is an MRI of my lower back just to make sure it's not anything there since they can't seem to see anything wrong with my knee. If that is clear then I have no idea what is next. It would be nice to wake up just one morning and be able to stand up without pain.
 
Hi Rest-assured! Great to see you are still here! Coachie...you won't believe this, but a friend of mine mentioned (you) to me a couple of months ago! This friend said there was a lady in the Dover Foxcroft area that was having problems with her knee. This friend also said "the lady" was a teacher, and that she had her TKR done in Dover Foxcroft! I know we talked about YOU! This friend of mine has a friend that apparently knows you...that is how you came into conversation. I'm trying to remember the details, but I do remember that I asked my friend if (you) were into horses and horseback riding, as I am/was and maybe there was a chance that we knew each other from having mutual friends. I can remember asking my friend if Dr. Field was still in Dover Foxcroft, and practicing. Dr. Fields's daughter is a very good friend of mine, and I knew Dr. Field well.
I'm racking my brain trying to figure out the entire conversation, which was brief, but I KNOW it must have been you that she mentioned. I'm also trying to help a friend of a friend who had 3 surgeries done by Dr. "M" and she is a mess. Ended up going to Boston and having the components taken out, and having to wait several days before the surgeon could put new ones in. (She is a nurse in Bangor, and is petrified to pursue legal action against Dr. "M" for obvious reasons).
Coachie...I would be more than happy to meet you sometime if that is possible. ~Audrey~
 
Coachie...Dr. "M" tried to tell me that I had/have back problems as well, which would have been the root of the pain. I had the MRI. Funny thing...the pain specialist in Bangor read the MRI and said there was no indication there was something there that would cause the pain. Dr. "M" read the SAME MRI and said the opposite. Go figure, and I wasn't surprised. He'd do and say ANTHING to make it not my fault.
It sounds like your kneecap is low. Dr. Kelly told me that when he did my revision, he had to set the kneecap a few degrees lower than normal. He also told me that it might cause pain, and it might not. I can not touch the left side of my kneecap because it is painful...and don't hit it! PLEASE!!! (ouch!!!!) He had no choice but to put it on that way, due to the botch job done by Dr. "M". There is something there that is causing the pain.....a nerve that is out of place maybe?
Unless you had an accident involving your back, I highly doubt it's your back that is giving you the trouble, thus causing the pain. You've had an EMG, too. Before an MRI, I'd have a CT scan. However, you need the right views to be able to see if there is anything causing the problem. The Dr. needs to tell the x-ray tech specifics. That is the ONLY way my "crooked pieces" were diagnosed. They did a complete CT scan from my hip to my foot. By following each "section view" from the hip down, it was apparent the pieces were crooked. Had I had a CT scan of the knee only, it would never have been found. Thank God for Dr. Kelly, again!
 
I am well known in the area due to being a teacher and a coach, so it wouldn't surprise me if we had mutual friends. Small world...
 
Hi Wanttoride, having your knee fused will not be the be all end all for you trust me. I had my knee fused back in 1990 when I was around 13 years old and I didn't let that stop me from living my life. The doctors and my family tried to make me think I would not be able to do things anymore because of it and I wouldn't accept that. Please please please if you can take one thing from my reply do not let anyone tell you that YOU CAN'T do something because your knee is fused. I've made it a personal goal of mine all my life to prove people wrong and the looks on their faces when I do is my reward. Were there times when I got frustrated and hated the fact my leg was fused, of course! Were there times when I hurt myself playing sports because my leg was fused, of course! These are just some of the things I had to deal with and these things/situations only made me more determined.

Don't get me wrong though, your life will change but only only based on how your do certain things. I have walked with a limp for over 20 years and people still don't even notice at times. But over time as you become more comfortable with it things will get easier and easier, trust me! :thumb: I'm new to this site so I don't know if you can attach files but I would like post some video of me playing ice hockey to show you just what is possible. I won't get into too much more now since I'm on the clock at work right now but please feel free to ask me any questions any time. Going up and down stairs, Check. Riding a bike, Check. There is lots of info in my brain after 20 plus years so please feel free to pick it.

It's funny, I came on this website to talk to people that have had tkr's done and possibly someone from a fused knee point of view. In reading your posts and writing this reply I'm starting to realize that it might not be for me. I have accomplished lots in my life and have not let my situation hold me back. But, information is always good to know and have so I will at least see what kind of challenge having a tkr done could be. Could I meet that challenge? Are you kidding me! :hysterical:
 
Damaso, if your video is on YouTube, just copy the url from the top address bar in your browser and paste it in the message box. It will magically be turned into a video screen!

Are you seriously reconsidering having a TKR?
 
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