Fusion Long ride to a successful Fusion

[Pat29627]

I'd skimmed your posts and was just barely to the point on mine because my seven year old grandson was talking to me the whole time, so sorry if I was abrupt. Why do you think you need a revision? I'll go back and read later. My daughter and hubby are out hunting for treasure in school playgrounds with the metal detectors right now, but I'll ask her what they said about her nerve blocks when she gets in. They found 71 cents and a belt buckle yesterday ....we're going to be rich soon :hehe: RSD is rare, and I think lots of people get over it when they seek treatment early.

 

[Jamie]

First you have to really be sure you even HAVE RSD. You only have the opinion of one doctor who is not a specialist in this area. And like Pat said, you don't know at this point that you need a revision either. This is why you need to get additional eyes on your entire situation.

I do know that a fairly significant number of people here on the forum have multiple procedures in their joints prior to having a revision and they do not develop nerve problems. You certainly have been told some rather far-out things through all of this. I'm sure it makes things more difficult.

But hang in there....okay? You are going to have options here soon and a better understanding of what is going on. I have faith in that!

 

[Josephine]

answer #1

Well honey, I am please you feel at home here already! Let me try and answer a few of the questions you have asked - best as I can.

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???

I'm wondering.....if the nerve block only lasted for a day or two, why would she have had 11 of them?

Well, nerve blocks are used for a whole variety of un-diagnosable pain. Like spinals and the femoral nerve blocks done with them, they are, by their very nature, temporary. But most of them result in some abatement of the symptoms over a period of time. That's why they do so many. The same process occurs in intractable back pain. I've known of people who've had injections every 3 or 6 months for several years and it has helped, giving some respite from the symptoms. Pain management is often a 'try it and see' kind of medicine.

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.

Revisions can be straight forward, they can be not. With the symptoms you have and them being unconfirmed, I would think this is really what he is referring to, rather than the knee itself.

If another surgeon ascertained that the bad positions of your foot and poor ROM was due to a badly done TKR, don't be scared of having it redone. It won't be more difficult that you have (excluding all this ?RSD issues) as the implants won't have fused to the bone too much yet. And since the bone is already prepared, he will just need to remove the implants, check the cuts on the bone and make what corrections are necessary - usually quite minor - and put in new implants. Most likely with cement second time around. Surgeons are never going to make promises about the outcomes of surgery, especially not redoes. They're too conscious of litigation!

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.

I agree with her.

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".

Well, this is why I think you should get your operation notes. If you can't understand some of what he's said, you can send it to me in a pm and I'll 'interpret' for you!

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???

You'll probably never get answers to the questions "how" and "when". There just aren't answers to everything in medicine. Sad fact of life.

I'm not convinced on the "body said "enough is enough"" theory. Sounds a bit too .... 'convenient'! Fusion (or arthrodesis) is as much trauma as a TKR so I can't see that as a viable alternative. It's also a very very old procedure and not done at all these days. I can't say about the RSD interfering with ROM - could be. I shall have to make enquiries and do some reading!

When I take a deep breath, I get a somewhat sharp pain inside my knee

This will be because some of the muscles that are attached around the knee actually attached to other muscles that go right up to the base of the chest. Classic case of "everything's connected to everything else"! And the more so if all those muscles are inflamed and sensitive. It doesn't mean that anything is wrong or that you are doing any harm, it's just a simple kind of electrical fault that the 'jolt' message gets passed down from your chest and/or abdominal muscles to your knee. I've even had it go right down to my foot! It can happen easily. Don't worry about it.

 

[wanttoride]

According to the Pain Management Dr., he concluded that indeed, I do have at least stage II RSD. I have these symptoms: coldness in my left foot that is several degrees below the temp. of my right foot. This gets worse when I have PT or over-do it. I also have skin sensitivity to touch or air (feels like a bad itch...you just want whatever is touching it to STOP!), my knee area turns purple and blotchy after PT or doing any kind of "work" with my leg/knee. Note" it's definetely a different color than my other knee, even by a shade when doing nothing.

Also, my toenails on my left grow MUCH faster than the ones on the right since my TKR. All classic signs of RSD in stage II. The Dr. put me on Lyrica, which has helped with the coldness and the sensitivity to anything touching my knee or surrounding area.

The fear that both my current OS Dr. has along with the Pain Management Dr. is that aggravating the knee can put me into an advanced stage II or possibly a III. That's why the current OS Dr. said "therapy that will not aggravate the knee".

From what I am told, some RSD patients go into "remission", which can last for a short period of time with flare ups, or the remission lasts for years, possibly with no flareups at all. However..if you have RSD, you have to always be aware that things that you do can cause a flareup or cause you to come out of remission. That is what I have been told.

I am always in the process of researching RSD, as this seems to be the contributing factor in my current OS to convince me NOT to have a revision. Note: I have not been told that I need one...only that having one would not be in my best interest due to the RSD factor. I'm hoping to find somebody on this support group that got a diagnosis of RSD and/or nerve damage after a TKR.

Also...I signed a waiver before surgery that stated all the possibilities that could happen (negatively) during or after surgery, and nerve damage was one of those "things". With sooo many things to sign before surgery, this is the most important piece of paper that EVERYBODY should read. I, like most peope I'm sure...just skimmed over these items and just signed away, giving permission to the OS to do the surgery.

I will explain the nerve damage that I have: along with the RSD, the nerves that tell the muscles, tendons and ligaments to work (the ones surrounding my knee...especially in the back side of my knee) do not send signals to my brain help bend and straighten. Those nerves have either been permanently damaged, or may repair themselves..in time, so I'm told. Again..."we just don't know".

Oh...I keep forgetting to tell everybody that the tourniquette they put on me during surgery was possibly pumped up too tightly...another post-op nightmare. My upper thigh was in pain for 10 weeks postop...you couldn't even touch the area where the tourn. was or I'd scream. I've been lucky in that regard that that area has "repaired" itself and I am painfree in that area. I will need those op notes (?) to see how much they pumped that thing up to see. I've researched that, too. As you can see, I'm at a "we just don't know" stage, as well as "we need time for the nerves to heal, if they are going to at all", and "you have to be patient" and "I'm rushing things".

That's where I'm at. I hope this clarification has helped all of you that are trying to help me...there is just soooo much detail that I've been given and my head is spinning. I quite literally have had to write things down in order to keep order of events straight!

I'm not the "typical" TKR patient, but I sure wish I was. If I were, I'd be back at work, walking and enjoying my life...just like they said I would be.....in 8-10 weeks! Yeah, right~~~~....(gotta keep a sense of humor, right???) thanks everybody!

 

[ohyes]

Wanttoride,

While I don't have any advice, I am really pulling for you to get real relief - and soon.

I lived in Portland, ME in the late 70's - in fact, met my husband there. My best friend lives in Durham.

I'll be watching for your posts and cheering you on!

 

[JudyS]

I too will be cheering you on. I am in a bit of a similar situation at least in trying to find out what happened to me during recent spine surgery. I never saw my surgeon after the surgery even though the hospital tried to track him down and get him to see me. I had lots of complications and only hope when i get my hospital records they will shed light on it all!!!

Good luck to you in gettting to a few revision speicaiists. You will ride your beautiful horse again.
judy

 

[Josephine]

answer #2

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.??

More likely that he knows that most problems sort themselves out over time and doesn't want to waste his time seeing patients whose symptoms ultimately won't actually need his expertise.

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 don't ask him! I wouldn't. Anyway, doctors are accustomed to patients getting other opinions - it's a free country, isn't it? Apart from which it is your right to have a second opinion. And if he did dismiss you, you're not going back to him anyway, are you? Not for surgery, anyway. But I don't think he will.

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!!!!

Stop beating yourself up - this is NOT YOUR FAULT! However many questions you asked, how ever informed you were about things, even this condition, he would have fluffed them off as being rare, which it is. You cannot foresee or forestall everything.

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?

Good question! That's why I think you should get the op notes. Could give us a clue at least.

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.

As I understand it, it is a diagnostic tool but apart from that, why wouldn't you want to take the possibility of even a few hours respite from this? I know you've described some fearful after effects but tbh, I've seen heaps of these blocks done and never witnessed such after-effects. It is extremely uncommon.

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.

Don't know too much about RSD but I don't buy that!

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.

I bet he is and doesn't!

Josephine.....your thoughts on finding an OS with RSD background???

Not knowing too much about it, I really couldn't say. Remote possibly. I'd never heard of it till I read your post.

Oh...I keep forgetting to tell everybody that the tourniquette they put on me during surgery was possibly pumped up too tightly...another post-op nightmare. My upper thigh was in pain for 10 weeks postop...you couldn't even touch the area where the tourn. was or I'd scream

Oy vey! I know that tourniquet pain but to have it for 10 weeks! Jeepers!

I don't think there's anyone on this forum that has this condition. As I said, I'd not heard of it before I read your post earlier.


btw, honey - do you think you could split your posts into paragraphs? You might have noticed that Jamie and I have had to keep editing them for you but it would help so much if you would do it. Thank you.

 

[stoneforeside]

Wanttoride I'd definitely get another opinion if you can. I think Dr. Becker is best in Portland. I had mine done at Dartmouth in NH. Only encouragement I can give as fellow mainer and also somewhat youthful TKR (I am 52) is that mine is starting to get better after 9 weeks post TKR and 3 weeks post manipulation finally. I don't know much about RSD

On the positive side, if Ortho got you to 130 on table after manipulation, it means you are capable of getting there. Also, my brace is cementless too, these are newer technology and should be better.

This is a very painful recovery, rehab and very slow, no doubt about it. Leg bent and having strange sensations is not unusual. I have had all kinds of pains, sensations and crazy feelings too. Probably not as bad as your though.

My Ortho also has me on Neurontin (which reduces nerve pain--you might ask) and celebrex (excellent anti-inflamatory to reduce swelling)

You've got to get off crutches and start trying to gently push yourself

I also recommend aqua-therapy if you can find a pool, does wonders.

 

[wanttoride]

A BIG HUG to you, Josephine! Thank you for ALL your responses to those so many questions and concerns!

I will try to put my posts into blocks or paragraphs for 'ya! I get rambling on and I just keep on typing! My close friends call me "Gabby"...guess why! Not that I'm "accident prone", but if you were to ask those friends, they would say, "if it's going to happen to somebody, it's going to happen to (me)". Be it rare or not, "those things" just have a way of happening to me.

In the past year, I've been thrown from a horse...twice...and landed on my back both times. (MRI showed no damage, but boy...was I sore for weeks!) Got knocked in the head by a draft horse this May and knocked me out cold. Had a massive concussion and memory loss for 4 days. I'm still having some difficulty with ST memory because of it. And then....the TKR nightmare.

So...you can see now WHY I'm so afraid to have nerve blocks, etc. because if something out of the ordinary is going to happen, you can bet it will happen to me. I'm hoping 2010 is going to change that.

Wow! I'm surprised that I'm the first person to have a "diagnosis" of RSD and nerve damage after TKR. I will do my best to keep everybody informed with even the most tiniest of details and information! If anybody is able to find somebody else with the same situation as mine, I will be most grateful!!! I guess we'll learn together from this day forward!

I woke up this morning a complete wreck! Very emotional and wanting to throw my crutches out the window and just scream my head off! I'm really glad I grabbed my computer and found you all! I really do feel like I've got people that care, understand and are willing to "run the gauntlet" with me!

Today, I only did small strengthening exercises...small knee bends, standing on toes, and practiced my gait walking. Have not had a lot of pain today, but took my meds faithfully. I even baked a small batch of cookies for my hubby! I sit on a chair in the kitchen while I'm "cooking". I feel like I'm doing something "normal"! (The cookies came out really yummy!) I will do the CMP machine tonight and then go directly to bed. I'm experimenting as to when the best times to do certain things are. The CPM machine is not something to do mid morning...too much pain the rest of the day.

Have a great evening, everybody! Thank you again, so very VERY much!


I will be on the forum every day looking for new posts and probably doing some venting along the way! :thnk:

 

[Josephine]

Sleep well, honey! We'll be here tomorrow as well.

 

[Simon]

First any doctor that would dismiss you because you sought a second opinion is not worth continuing to see as it either has a major ego or he know something is wrong and doesn't want anyone to find out about it. I live in Vermont and understand the problem of lack of doctors but that should not stop you from going where you need to.

Another good place to call is the Hospital For Special Sugergy in New York City. It is a bit far but this is the top orthopedic hospital in the country. The hospital only does orthopedics and has developed many advances in replacement surgery. They are well known for taking on very complicated cases.

There website is https://www.hss.edu/

I really think you should consider it.

Wish you the best.

Simon

 

[calling_all_angels]

Hi Want,
I just want to stop by and see how you were doing.
This is really a great place isn't it!! I knew that everyone would want to help you. Everyone here is wonderful!!!!
I was in shock when you said the you too has tourniquette pain!!! That was some of the pain that woke me up screaming after surgery. And I still have a problem with it. It had gotten better. But he had to use a tourniquette when he did the scope because of the bleeder. So the pain is back at a 5.
But the knee is really so much better since he went in and fixed it. I am sleeping just like a normal person!!! And walking normal and everything!! And you too will be out riding your beautiful horse this spring. You are going to have to go and see another Doctor. I was lucky because I would not give a inch!! and I now know why so many Doctors came to see me in my room after my last TKR. So I lucked out and did not have to see another OS. But if the scope had not worked I was ready to go to a new OS. I just could not live with the pain anymore. So now you have to take the next step. I will try to stop by sometime tomorrow to see how you are doing.

Listen to Jo she will not steer you wrong. Sleep tight. Tomorrow is a new day.

 

[Josephine]

link no longer available

 

[wanttoride]

Thank you! :flwr:

 

[wanttoride]

Good Morning! Yes...this is a WONDERFUL place and the people are wonderful! I've received so much information, links and words of hope and encouragement. WOW! :wahey:.

I've got at home PT today at 1:30. I haven't had PT since last Thursday because of the holiday. I'm going to do my strengthening exercises this morning and will let her do the "fun stuff" later! (groan).

I was wondering....does anybody else have a hard time sleeping at night? I slept in a recliner for 2 months because my HIPS and upper thighs would throb and ache at night so badly. I could get to sleep, but after 4 hours, the deep ache would come into both hips and thighs. My knee doesn't really hurt, which is weird. (?) I'm wondering if it's because I lean on my crutch during the day. When I want to get around quickly, I can use 1 crutch. Any walking, and it's definetely 2. I have a small 1st floor, and open floor plan, so 1 crutch is ok. But....would that be the cause of the hip/upper thigh ache? hhhmm......:skp: Once I take my pain meds, it helps with the ache enough so that I can get out of bed. Without the meds, forget it! I can't even stand!

I will check out the RSD forum, Josephine. Thank you for finding it!

I'm going to chat with my PT person today about a second opinion. One of her co-workers had suggested an OS that is very good...however...he's in the same practice and I'm NOT going there. I don't care HOW good he is! I was considering it, but all my new friends here say "no", so I am going to heed your advice and look elsewhere.

I met my PT person (Beth) when I worked at a retirement community, and she was there helping patients. I am really, REALLY lucky to have her! She has gone above and beyond trying to help me...she even brought over her college professor last week to have him take a look at me, and to show her some new "moves" that may help!

Have a great day, everybody! I'll let you know how PT goes today.

 

[Josephine]

Now I have to thank you! For the past two or more years, ever since she had her first TKR, my sister has been in terrible pain that has been puzzling us all. It's so bizarre in how it manifests. Now, having read all the info I can about RSD, I suddenly realised .....

..... that's my sister it's describing!

So thank you so much. It's been driving us mental trying to find out why people (drs) are so dismissive about her case - they don't know!!

 

[wanttoride]

Oh my gosh, Josephine! My heart is in my throat right now! (gulp). I don't know what to say. Never in a million years would I have thought that my post would open others to the symptoms and effects of RSD! I want to give you a BIG HUG, and send one to your sister as well....

 

[wanttoride]

What kind of "problems" did he find when he did the scope on your knee?

 

[calling_all_angels]

Good morning Want,
I am having a hard time getting out the door today. With 3 more inches of snow on the roads, I am not sure I even want to get out on them to get into town! LOL Plus at 20* below Curves just does not seem that worth it right now. I hope that your PT lady can help you with finding a new OS She sounds like a nice person. As I said earlier I now sleep normal 4 to 5 hrs. of sleep at one time. Up to 8 week ago I was getting 1 1/2 to 2 hours of sleep at one time.
And it took me 5 months to get back to trying to go up and down to sleep back in my bedroom.
You too will get there!! You have more info to help you. Let me know what your you and you PT do come up with

 

[Josephine]

Oh my gosh, Josephine! My heart is in my throat right now! (gulp). I don't know what to say. Never in a million years would I have thought that my post would open others to the symptoms and effects of RSD! I want to give you a BIG HUG, and send one to your sister as well....

Well, that's the wonder of the world wide web!