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wanttoride

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Hi...I am a 48 year old female, very active, and ride horses...or used to. I had a TKR (left knee) in October 2009 after 3 surgeries and a "McKay"procedure in 2002, which was the last resort before TKR. I have/had osteoarthritis and degenerative joint disorder, which affects my right shoulder, left knee and jaw. Lucky me!

After a lot of thought, and daily pain from the sore knee, I went to my surgeon in April of 2009 and told him I was ready for the TKR. We discussed this at long length, and I thought I asked all the right questions. I wanted to ride my horse without pain, and he said I would be able to, and that I'd be out of work for about 8 weeks. I am a dental assistant also, and spend most of my day on my feet and getting up and down out of a chair.

In September of 2009, my surgeon committed suicide...I kid you not. My surgery was set for early October, and I had made all the arrangements at work to take the time off, etc. I was able to get another surgeon in the area to do my TKR, as he took on my Dr's. surgery patients (they were good friends).

I met with the new surgeon, and he told me that indeed, I need a TKR. He also told me that he was not going to use cement to fuse the parts....that he was going to use parts made by "Zimmer" that were gender specific, and those parts would adhere to the bone...no cement. So...I underwent the TKR. That's when my nightmare began.

I woke up in EXTREME pain and leg spasms. I had a "pain pump" in my knee for 6 days, and that and pain meds still didn't stop the pain. I was transferred to a rehab center, which was a nightmare and a whole other story in itself. When the therapist there lifted my leg and twisted it slightly, I screamed in pain and just about went through the wall.

They put me on oxycontin, oxycodone and something else, and my pain was finally managed...somewhat. I knew something wasn't right when I saw other TKR patients walking down the hall on crutches and I was still reeling from pain and spent most of my day on the CMP machine. I reached 80 degrees and was sent home.

Therapy started at home, 4 times a week. This was now about a month after surgery. My left foot turned somewhat outward and I could not get my knee straight....20 degrees was what I got....and flexion was only 60. I went for my first post-op appt. with the Dr. and he said "well...we knew we had problems right out of the gate". WHAT???? He never told me that before this day!!!

He said that he was pretty sure that I had RSD. (my foot was always freezing, and clothes that touched my knee drove me nuts!) He took xrays of my knee and said that everything he did was done right. The pieces were put in correctly, in other words. So...I went to a pain clinic. He wanted to do a nerve block, and I refused. Too many "ifs" and it might last an hour, or maybe longer...so what's the point in this? So..he put me on Lyrica.

I had an under anesthesia manipulation in November 2009, and Dr. said he got my knee to 130 degrees flexion and 5 degrees flexion. Said there was no scar tissue either....??????

It's now January 2010, and I can get 85 degrees flexion and 10 degrees in extension. I WANT ZERO! My body is taking a toll on all of this...still walking on 2 crutches, quad muscle is gone. My Dr. says I should have the nerve block, but I'm scared to. He also says if I can't get it to bend/flex more, I'll have another under anesthesia manipulation. He says "no" to a revision..says no point.

I live on oxycontin, oxycodone and Valium for leg spasms, which I have after therapy. I feel like I've lost my life, will never walk again, and never ride my horse. I have not received a second opinion yet. I'm afraid of the nerve block....no guarantee and I don't want to go through a series of these for "temporary" pain relief. The RSD is under control with the Lyrica.

I NEED HELP and ADVICE! Is my replacement too big? I'm freaking out at all of this...I WANT MY LIFE BACK! :cryin
 
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Dear Want,
You need to get yourself to a different OS who does Revision. Find out what he has to say. I can not believe that you are in so much pain. My Os told me that everything looked like it should in the Xrays that he took too. But when we did 2 MUA on it and could not get anywhere with it (except to cause me More Pain) He went with a scope and lo and behold there were problems and he fixed them and Now I feel like me and Lumpy (knees name) are starting to like each other. You know when there is something wrong with your body and you need to find out if it can be found and made better. Please keep us informed on how you do.
 

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Reflex sympathetic dystrophy is, so far as I can discern, a fairly rare condition and treatment is symptomatic at best. I think it's an easy peg for your surgeon to hang this particular cap on to cover up the possibility that the surgery wasn't up to scratch.

You need to get at least two more opinions and those from revision specialists.

Having had an uncemented prosthesis wouldn't be a contributing factor neither would any of the PT or other treatment you have had. It started right after surgery and then your surgeon admitted he'd had problems. I would get hold of the operation notes and make sure you take them to the other surgeons.

One thing you don't want to do is let him anywhere near you again. Start afresh.

If it is RSD, then you need to see a specialist in that who are mostly Pain Clinic specialists I believe. Nerve blocks sometimes work but sometimes don't. I don't see there'd be any problem with trying it as there's no complication issues so far as I know. But the procedure itself can be painful.

I'm so sorry you've had this terrible blow to your life. But if you want to get it resolved, you have to find other surgeons from whom to get opinions and be prepared for a long battle.

Anyway, welcome to BoneSmart - I do hope there is something we can do to help. I also paragraphed your post to make it easier to read. Large blocks of text are not easy on the eyes.
 
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wanttoride

wanttoride

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Oh my gosh! An "angel" has appeared! I was hoping I would get a response quickly. I can't tell you how confused, frustrated and depressed I am!

Now that I have a response, I can fill you (and others) in a bit more....I had my surgery in Bangor, Maine on October 5th. I'm still walking (if you can say that) on 2 crutches. I can get around somewhat on 1, but only in the house. I am on "home care", which means that I cannot leave the house unless it's to go for a ride just to get out and stop me from going insane!

I am on oxycontin 2x daily, and oxycondone for breakthrough pain. The leg spasms happen mostly at night after a heavy PT session or if I've "overdone" it. For that, I take Vicodin before I go to bed. I also take Lyrica (3 pills) at night for this so-called diagnosed RSD from the pain management Dr. I'm also on Lexapro (20mg) daily for depression. My surgeon is afraid that any aggressive PT will aggravate the RSD and cause pain and set-backs.

So....I have not been able to do ANY strength exercises, until last week when my PT said "we've got to do something". I've had 4 PT people come out for their opinion and to "see the TKR patient with RSD and nerve damage". I guess from what I hear, this is pretty rare?

I sit in the window and look at my beautiful horse, "Drummer" and think..."will I ever ride you again"??? :pray: I pray that I will...but at this point, I'm thinking it's not going to happen. Everybody is pushing these nerve blocks, and I just don't want them. 1. They aren't permanent and 2. there are too many "ifs" and "maybes". They say if I have one, it will diagnose whether or not I have RSD for sure. ????? Dr. says I definitely have nerve damage, but what the heck does that mean???

Because of no strengthening, I can't walk without crutches, and my quad muscle is non-existent. Dr. says a revision will set me back a lot, and he can't guarantee me that I'll be better off. Having a second MUA in a month, I'm sure. From what he told me about revisions, I'm really scared about having one.

Oh...he also said that there was NO scar tissue or adhesions when I had the first MUA 7 weeks after TKR. My PT says that's BS.

Please...post all you can, and have your TKR friends find my post! I really, REALLY need help. I want a second opinion, but what do I do if he/she says to do a revision? I've already lost 3 months of my life....and what about fusing my leg straight in order to walk??? What is THAT all about??? I'm scared.....
 
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wanttoride

wanttoride

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Thank you "angel" and Josephine! I can't believe that there are actually people out there that really CARE!!! (person) I've read in other forums that people have had the wrong size "knee" put in, and that has caused the lack in flexion and extension.

I also want to clarify....this Dr. never admitted that HE had problems....he said to me at my first visit post-op that "he knew "we" had problems right out of the gate". After I woke up from anesthesia, and was in my room, my leg jumped about a foot off the bed, even with those air compression things on it! Even with the pain pump, it took "them" several days to find out what would work for my pain. Any jolt or movement of the bed would send me reeling in pain!

They had me trying to get up and walk to the bathroom, and about halfway there, I blacked out. While I was in the hospital, they had me doped up so badly, I was asleep most of the time. When they transferred me to rehab, about 4 days after surgery, that's when the pain management became a nightmare!

The PT people there kept looking at me like I was a wimp, and were treating me like the "average TKR patient". Remember...I did not know that I had problems "right out of the gate" at this point. The first PT person told me to "suck it up", and she raised my leg off the bed and twisted it. I've NEVER experienced pain like that before, and my screams brought nurses running. Needless to say...she never touched me again.

When I saw the Dr. at my first post-op, he looked at my leg (a gross purple color) and felt my foot (which was much colder than the other) and said "you have RSD" and probably nerve damage. Ok...how did I get it, and when is it going away? (I've done LOTS of research on this, so now I know about it) He said because of so much trauma to my knee during surgery, my body said "enough is enough" and shut down the nerves in that area. Sound correct to you? Now I'm wondering....will RSD and nerve damage cause my knee not to bend and straighten? Is that why he mentioned fusing my knee straight in order to walk???

I'm PETRIFIED about any more surgeries to my knee....I'm on short-term disability until April (I'm a dental assistant) and then maybe long-term. I'm sure I've lost my job, which I love. (crying now) Friends and family are very concerned and confused as well. I've got the BEST PT crew ever, and I don't know what I'd do without them...they are frustrated as well with his "do only this" instructions.

Oh....I got my own CPM machine (on my own..sshhhhh!) and am using it once a day for about an hour. I can get to 88 degrees flexion with a lot of "pulling" and some pain. I can't bring myself to use the 3x10=0 board.

Josephine...have you ever heard of this type of device? "Angel"....keep posting! Thank you so very, VERY much! It's snowing again here in Maine...we got 2 feet last night! My next Dr. appt. is Jan. 14th.....
 
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wanttoride

wanttoride

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Oh, I definetely will! I need you...all of you....so please....forward my info. onto others in the forum that you have conversed with for their opinion. What were you able to achieve after your second UAM? Do you think it was worth it?
 
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wanttoride

wanttoride

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Oh...I forgot to ask.....does anybody else have this problem/symptom? When I take a deep breath, I get a somewhat sharp pain inside my knee. This happens all the time, so I shallow breath all the time. This happens even on pain meds. Dr. says this is caused from the nerve damage....without much explanation afterwards....
 

1jt@atime

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Want,

You really, really need to get yourself another opinion. Since you are happy with your physical therapists, I would suggest you ask them if they know of a good revision specialist. You really need to get an answer because your description of how you feel is just NOT right. Don't let this man touch you again! You have your entire life ahead of yourself. Find a surgeon that can get you back on your horse!
 

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Wanttoride

I can understand you wanting to get back to riding as soon as possible. I use to show horses and do Western Pleasure shows with a couple of my horses. Nothing makes you feel quite as free as being on the back of a horse and just riding.

Now to your problem. You say you want to get back to your life, well you need to take Jo's advise and get yourself to another surgeon and one that has nothing to do with the one you are with now. You need 2 or even 3 other opinions.

Bottom line something went wrong during your surgery and it will not get better until you take the next step (no pun intended) But the ball is in your court if you want to get this knee back in shape you need to get to another doctor and you need to do it now, yesterday would have been best.

Also, PT does not and should not hurt. It may be uncomfortable but not make you scream in pain. Aggressive PT does not get you more rom or get you there faster, it just causes you pain and can cause you to go backwards for a few days.

GET YOURSELF TO REVISION DOCTORS AND GET 2 OPINIONS ASAP.

Good luck and keep us posted.
Oh and happy riding in the future, you will get there and as we say here "get-er done" to the knee.
 

Bluehydrangea

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I am so sorry to hear what you're going through. If it were me, the first thing I'd do tomorrow morning is make an appt. with another OS. Given the severity of your issues I'd find the best doctor I possibly could even if that meant driving more than I might want to. Boston is about a 4 hour drive from Bangor and has some of the best doctors in the country. I know it's not the best time of the year for driving up there but if it were me that's where I'd go. I'd get someone to drive me, sit in the back seat with my leg elevated and iced and just make the best of it. I'd probably consider staying in a hotel somewhere along the way to cut down on the driving but I wouldn't let a 4 hour drive deter me from getting the best care possible from the best doctor I could find. I'd make sure the OS specializes in TKR's and TKR revisions and that he does many of them a year. I have a very good friend who lives in Boston and she tells me Mass General is phenomenal hospital and I would think most of their docs do hundreds of these a year. It's also a teaching hospital which means they're most likely up to date on everything.

You're just too young not to get this looked at by someone else. I agree with Josephine. I don't think I'd let this doctor near me again....minimally until I'd seen another doctor and gotten a second and/or third opinion.

Good luck!!!!!!!!!!!!!
 

Jamie

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Wanttoride, my heart goes out to you, hon. It's no wonder you are frustrated, confused, and feeling like the world has left you after all you've been through. Believe me, your new BoneSmart friends understand EVERYTHING you are feeling and we'll be right here for support.

Jo and Calling are so right. You need to talk to other doctors. As complicated as your situation is, I believe you need to see at least two knee specialists. You need to find REVISION specialists. These are doctors that have experience dealing with problems from an initial surgery. I agree with Josephine that your current doctor needs to be out of the picture....even for a manipulation.

I did a little searching for revision specialists in the Bangor area and frankly didn't get very far. There seems to be a limited number of orthopedic practices within the immediate Bangor area and, at least online, NONE of the surgeons give any detail about their experience and specialities beyond "orthopedic surgery."

Is it possible for you to go to some other major city to see a couple of surgeons? If not, then you are going to have to do some leg work to find out who would be the best doctors to see for a second opinion. Number one in the search is to be sure that the doctor is NOT affiliated in any way with the surgeon who replaced your knee. Since there appears to be only one hospital in Bangor, that may be somewhat difficult. But you need to try. It is the only way you are going to get an independent evaluation of what is going on. Until you have that, you won't know what options are available to you.

I'm not buying that you must have any of the options that have been presented to you. I completely agree with Jo that you need to request a copy of the surgery documentation. It exists. It will tell you (and the other doctors you see) exactly what difficulty was experienced in the operating room. You are entitled to have a copy, so don't let anyone tell you that you're not.

Please don't even begin to consider fusing your knee straight at this point. I believe there have to be other options that will get you into a more normal recovery. The trick will be finding the right doctor to get the job done for you. There are people out there....you just need to find them and be able to get to them.

I know this must seem like an overwhelming task. But you have a world of support here on the forum. We'll be by your side each step. Take it one step at a time and it will be easier. Start with requesting the surgery notes. Then make a list of all the orthopedic surgeons within the distance you can travel. Call each office and ask what experience the doctor has in knee revision surgery. Write down what each office tells you, so you have it for comparison.

And, also consider how you might get to a different city other than Bangor to see someone. Are there any family, friends, church memers or other people in your life who can help you?

We're here for you. You are NOT alone. And your new BoneSmart family truly cares about you.
 
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wanttoride

wanttoride

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Oh my gosh! I cannot tell all of you how happy I am that I have found this forum!!!! I now have a place to "vent" and to express what is going on with me. It's VERY hard for others to understand. My family and friends have been very supportive, but it's hard for them. They hate to see me like this, and I hate to complain and make it the main topic of conversation.

I have found another Dr. in the Portland area that is willing to see me for a second opinion. I find it strange that the BEST surgeon there won't see anybody that has problems until after 1 year has passed since their TKR. Sounds strange, but isn't that the time span of when you can possibly look at sueing the Dr.?? I have NEVER had to do such a thing, and it scares me to even think of what that might entail. I know the Dr. didn't INTENTIONALLY do anything to mess me up, but why can't this Dr. see me before 1 year? Can you imagine what I could go through in a year's time??? WOW!

In talking with my PT people, they have somewhat mentioned that if I ask my current Dr. for a second opinion, he will get ticked and probably dismiss me from his care. Then where am I? The Dr. that was originally supposed to do the surgery did 2 knee replacements on my father, and both were successful. As I wrote in my first entry, he committed suicide a month before my surgery, and the Dr. that did my TKR took over all of his surgery cases that were scheduled for the rest of the year.

I did do some research on him before, and he seemed to be one of the best in the Bangor area...up on all the "new stuff", and I was particularly impressed with the "non-cement" method. He convinced me that since I was only 48, if the knee was cemented,there would be nothing left "at some point" to do anything with. He said the bone would grow into the pieces, thus making it more stable. He assured me that my life would be better and I would have less pain.

I feel like an idiot....I know better...I'm in the medical field....I know to ask more questions...whey didn't I ask about possible problems, range of motion, nerve damage, etc. WHY!!!!!!????? I kick myself every day for being soooo STUPID!!!!

He keeps on saying that there is nothing wrong with the placement of the pieces and in his mind, the operation was successful in that regard. Ok...so WHY is my foot not pointing straight?

My last appt. was over an hour long, and he FINALLY agreed to strength exercises. He forbid them for a month, saying that if I strengthened at the ROM that I had at that time, I wouldn't get any more degrees either way. Is that true???? My PT people said bs to that. If it weren't for my PT people pushing the issue, I would still be working only on flexing and extension.

So....2 weeks ago, he gave the go-ahead for pt to do "whatever it takes" ....as long as they didn't aggravate the knee. WHAT?? So what the heck does that mean? EVERYTHING agravates the knee! Both myself and PT think that these 4 weeks of "do whatever" is to pacify them and the situation.

I will NEVER let him do a surgery on me....rest assured my friends....that won't happen. But what about another UAM?

I am anxious to see what he has to say on January 14th....I'm sure after that visit, there will be conversations on getting a second opinion. Do I have to ask him for one, or can I just get one on my own? He says he "will do anything" to make this better, but has said he won't do a revision on me.

I think he's upset that I won't have that darn nerve block. He says he wants just one done to fully diagnose RSD. He also says that is the ONLY way to diagnose RSD. Is it???? I think the pain management guy is just dying to get ahold of me and start a series of these things. Am I being difficult??? I just don't want one.

I've read where people have had them, and their leg "warms up" and they are able to get some more degrees, and then it wears off and they are back to pain again. I've also read where somebody had one, and their leg warmed up, and then it felt like it was in a bed of hot coals for days! They thought they were going to die!!! So..you can see why I'm scared to have one, or more of these nerve blocks. :shk:

I'm also scared to put my life in a new person's hands...can I get messed up even more than I am now???

Does anybody know of a good Dr. in Portland or Boston? The drive is nothing...that's a minor concern. I'm starting a new year, with new deductible and a VERY supportive hubby that supports me all the way.
 

hopeful788

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Hello wantto, I understand your ordeal, and my heart goes out to you. I'm am 7 weeks LTKR tomorrow. I'm in Hartford CT, if you would like to come down here, my OS started the Institute of Joint Replacement at ST. Francis Hospital. His name is Dr. Gordon Zimmerman, 860-549-8255 (he has nothing to do with the Zimmer knee, even though that the one he put in me). I'm walking the stairs up and down normally as of today, just so you get an idea of his handy work. The guy knows knees. Just a suggestion, please don't take it as anything more than one knee trying to help another.
Maybe you need to find a larger populated city where there are more surgeons. Good luck, feel free to vent anytime. Bob
 

Jamie

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Wanttoride....first of all you never have to say a word to this doctor about getting additional opinions. You just do it. You wouldn't want to ask him anyway because he would recommend a crony and you want an independent opinion. All you need to do is ask for the surgery notes and any xrays, MRIs or CTs that were done before or after surgery. You may have to pay a fee for reproduction, but it is worth it to have this documentation to take to your other doctors and - in case there is a lawsuit involved at a later date.

I don't know what's up with the doctor that insists you wait a year to get a second opinion. Maybe it's somehow tied to the fact that some people have an unrealistic idea of how extensive recovery is for a TKR, but that still doesn't really make sense to me. Good thing he's not the only doctor in the world!

I'm so glad that you have a supportive hubby and can travel to Boston or Portland. In one of the other threads one of our members mentioned a surgeon and hospital in Boston you should look into. It was a teaching hospital and usually they attract some of the best revision surgeons around.

BoneSmart has a search feature you can use for both Portland and Boston. This is a link to it. You type in a zip code and distance you are willing to travel to/from that zip code and a list of orthopedic surgeons will pop up. Not all will be revision specialists, but you should find plenty of people to call. It's a lot of work, but your health and sanity are worth it. Monday...get on the phone and get started. You'll feel better once you are doing something postive for yourself.

And in the meantime, work with your therapist on strengthening exercises for your leg muscles. You need that and can do it within whatever pain tolerances you have. Don't overdo it, but do what you can. It sounds like you do have excellent therapists.

Hang in there. Try to stay focused on each small step in the process...one or two at a time....and you'll get there. As I said before, there ARE doctors out there who can help you. Your job now is to find them.
 

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My daughter has RSD. She got it about nine years ago when she sprained her ankle. She said that a nerve block can be effective at stopping the RSD if done within the first three months, but later might not help. I think she had maybe 11 of them but they weren't effective for more than a day or so. She had moved and maybe if she'd been diagnosed much earlier, she'd have had a better outcome. She has pain at night in her knee, but leads an active life with a child and she does lots of scraping and painting on her house, has flower gardens, loves to come here and prune our bushes and clean our gutters lol.

If I were you, I'd immediately have a nerve block, but also would get an orthopaedic surgeon to look at it to make sure nothing else is wrong.
 
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wanttoride

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I'm wondering.....if the nerve block only lasted for a day or two, why would she have had 11 of them? What would have been the reason for having so many? Whereas a nerve block isn't permanent by any means, were you told that the nerve block WOULD be permanent? Or...were you told that a nerve block would "get rid" of the RSD?
 

chudleighval

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Just wanted to say that Im thinking of you and hope you can soon get help to sort this out for you. I cannot offer any advice but wanted to say im wishing you well and my heart goes out to you.
Hugs
Val
 
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wanttoride

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Thanks! I'm wondering if you had prior surgeries before the LTKR. I've been told that because of the other 4 surgeries before the TKR, the nerves in the knee area just couldn't tolerate the "invasion" and distress any longer...thus the RSD. I've asked "how did I get this", and this was the answer.

Whereas the TKR is so brutal and there is lots of hammering and trauma, some people's bodies can handle it....and some can't. Apparently, my body could not. I have to be VERY careful as to how much therapy I do, and to what degree, as I've been told that it can aggravate the RSD and possibly make it spread! :shk: OMG! I just can't imagine having it in more places, but I guess it does happen. Found that out on research I did on RSD. If I have another invasive surgery with "trauma", and the RSD is "aggravated", I don't know WHAT I'd do!

My current OS seems scared (?) at the prospect of doing a revision, because of this, and I'm guessing he doesn't want to be a part of that for fear of another (or worse) outcome. So...I've got to find an OS that is very good at revisions with people who have developed RSD from a TKR surgery. A most difficult task? I'm not sure.....but this is going to have to be one of the questions I ask when I search for a second opinion: "Have you done revisions on people who have developed RSD due to a TKR"?

This is sooo hard for me.....what if I get a surgeon who isn't up on this RSD thing? I'm so scared. Sometimes it's easier to just sit and do nothing, but I'm not that kind of person. I know I had to have the LTKR because the McKay procedure had worked for as long as it was supposed to...actually 3 years longer....because I was bone-on-bone and just walking hurt. Ha! Oh, to be that lucky now......sometimes I just want to turn back the clock! Josephine.....your thoughts on finding an OS with RSD background??? thanks everybody!!!!!
 
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