TKR Nine weeks out and still limited ROM

[Celle]

We seem to be straying off topic a bit. This is Gilina's thread, so do you think we can get back to her recovery?
@Gilina , how are you doing today?

 

[tigz]

Ooops. Thanks for the gentle admonition @Celle!

 

[Gilina]

how are you doing today?

Back online after several days of errands, appointments, and migraines. I am at 21 weeks post-op.

In one way, things may be looking up. Spoke with some relatives downstate who have room and will let my mother and I stay for a bit next spring if I have my lysis surgery down there. They are near an excellent medical facility. They go south for the winter, so I'll still have to wait until they return in spring (which if El Nino comes, may be earlier than usual).

In another way, not so good. My goal is to stay active, but even just doing errands, etc., my knee gets more sore and stiff. I gather that is normal--I just don't want to do anything that will delay recovery. Other than aspirin once a day (the doc never said whether I should still be taking one or two aspirin a day for blood clots) I haven't taken anything for pain since early July. Except...muscle relaxers when needed since that is what causes the most pain. Otherwise, ice packs and I are still friends as we have been for many years.

So, I still have to call insurance and find a different OS and get all that sorted, but I have time and there is a ray of hope. Just wish I could be walking a mile a day already. At least, I am functional for the normal daily living things, except stairs, which is also partly because of my other leg.

We might get a bit of snow this weekend! Oh, and I have no idea who Josh Pine is...:-D....

Gilina

 

[Gilina]

If your work or life is so stressful that you have a headache every day-

As I recall, taking pain meds every day for headaches can cause rebound headaches, so I agree. Even when my knee was horrible before surgery, I did not take pain meds every day--instead, ice, rest, ice. I was into that even before surgery!

Gilina

 

[skigirl]

I agree, I saw my daughter who is the CEO of a marketing firm take TWO Aleve----I started right in---aren't you just supposed to take one every 12 hours.

 

[PolarBear60]

Dad says Dr Lemon at Merriter Hospital in Madison did both his knees and his hip. He would recommend Dr Lemon.


Jean

LTKR (Stryker Triathlon): 21 April 2015
Right Knee Arthroscopy: 25 July 2006
Left Knee Arthroscopy: 10 February 2005

 

[Tanya0811]

JMDearras, I believe it is a hundred percent the OS. My hip left was resurfaced in 2008 by a great doctor, indeed I traveled the world to get him do my surgery. In three four weeks I forgot about my hip, my metal one was much better than my natural.
On 09/01/2015 I had a RTKR, and since then I haven' t slept a single night normally and have not spent a single day with bout a pain. So I do think that the OS is everything

 

[Gilina]

Dad says Dr Lemon at Merriter Hospital in Madison

Thanks, Jean.

I am filing that away for if I ever have to have the other knee done. Right now, I'm limited to certain counties in northern Wisconsin by insurance. For now I have mentally thrown up my hands and will get back to thinking about the whole situation after the holidays. I am taking a walk every day--slowly but without pain (which is so wonderful after so many horrible years!)--just have to be careful not to trip because of the non-bendy leg.

Gilina

 

[PolarBear60]

Cheers to a pain free walk.


Jean

LTKR (Stryker Triathlon): 21 April 2015
Right Knee Arthroscopy: 25 July 2006
Left Knee Arthroscopy: 10 February 2005

 

[Gilina]

Checking in...

One year today! Glad to hear about those doing well. In most respects, my leg with the TKR is doing very well, despite the lack of ROM--only about 90 degrees. I can walk OK (though slow) and go up stairs; going downstairs normally is not possible, but that is partly because my other leg also lacks ROM for other reasons (torn ACL--and they only want to replace that knee, not fix it and that will have to wait).

I had thought I would have had lysis of adhesions surgery by now. My own doctor was somewhat negative about the surgery (and I hate his PA). I called around where I live and no other surgeon would do it--they only do MUAs. Plus the two people who had offered to help me--one moved out of the area, the other ended up in the hospital with a very serious illness for 2 months and is now on the long road to recovery. My one other option was to stay with relatives in another part of the state--but now they are moving, too. Ack. I sometimes think the forces are against me.

I'm glad I had the TKR done--no doubt--though I do wish it had been a more complete result. My plans to be walking a mile by now have been defeated by weather, road conditions, and my non-op leg which is back in spasm mode (and a new doc who freaks out about muscle relaxers even though I have used them occasionally for 3 decades--sigh). But, activities of daily living are much, much easier, and for that I am grateful.

MY OS says I can have the LOA done any time. Opinions? @Josephine
I thought maybe when I can arrange to have my other knee done (though that may be a year or two) I could have the AOL done, too. Less traumatic than two knees at once, and they do that. I guess if I had known how difficult it would to get help and transportation where I live, I would have had this all done a decade ago before I moved when I still lived in the big city and had more options and all my friends nearby.

Well, it is what it is. Onward.

Gilina

 

[Rosydog63]

Gilina....just a thought. ...it works well for my nausea. ..Dramamine otc.

Wish you well.
Rosydog63

 

[Josephine]

I thought maybe when I can arrange to have my other knee done (though that may be a year or two) I could have the AOL done, too.

I doubt they'd do these two procedures together because it means two totally separate operations with two totally different lots of equipment. See when they do two knees, both knees are prepped and draped together so when the surgeon's finished one, he can leave his assistant to close while he started on the other. Or sometimes they get in a colleague and can do both needs simultaneously. But if they did these two, it would mean finishing the knee, stripping down, removing all the TKR equipment, bringing in the arthroscopy equipment and then prepping and draping the other leg. It would be time consuming.

 

[Gilina]

Thanks, @Josephine Inside info is always clarifying. I don't know what I will end up doing--and I don't want to have to think about it all the time either. I sort of just want to get on with my life, but it scares me to already be sort of decrepit and what that means for me in 10 or 20 years. My 90 year old mother has better knees than me!

I just hope my OS is correct and the ALOA can be done as some point down the road and waiting isn't an issue.

I'm actually still amazed that they can replace knees and other parts at all! I certainly can do a lot more now.

Gilina

 

[Gilina]

I guess I am still wondering if I can have the ALOA done "later" as my OS told me, or if waiting will cause me even more problems. Opinions from the knowledgeable? @Josephine or @PolarBear60 or @skigirl You are the folks who have the most information or experience on lysis of adhesions. Thanks.

BTW, have been very concerned about being able to get up if I fall down--well, I fell down last week, but did manage to get up because I was on stairs and my rear was higher than my feet by about 10 inches. Not sure how I got up, but I did. No damage.

Gilina

 

[skigirl]

It is frustrating to deal with adhesions---I know quite well all about it. first---90 degrees at one year is not a functional outcome, so something needs to be done with that knee. It would be ideal if someone who has done a lot of adhesions could look at it. There are specialists in adhesions, but they would probably involve travel. I don't have the money to do much of that, so I sympathize there too.

First, I want to tell you that one of the ski instructors had a knee like yours that just got worse and worse. Finally, she herself felt that she had a nickel allergy and she convinced her OS to replace the knee with a SMith and Nephew Oxinium knee. When he did that, he also found out that she had had an infection he felt maybe from her first surgery. It is an odd infection and requires a culture of two weeks instead of the more standard one week culture.. She went through a bout of antibiotics and now has a functional knee.

I am not trying to scare you or even to suggest that your situation is the same as hers---I am only pointing out the complexity of a stiff knee and why you need an expert to look at it and help you decide what is to be done.

In my own case, my spacer was a little small and I had some movement in my knee. Also, my knee bleed quite a lot the first day---bloody knees often develop adhesions. So, at the two year mark, when I could not ride my bike because of knee pain, he did a Lysis of Adhesions, which was successful for me.

I will give you some of the info I have collected on arthrofibrosis (adhesions). Feel free to ask any more questions--I know full well how frantic I became to get my knee fixed. And my friend suffered with a stiff knee--at the end she had a rom of 60--for almost five years. She now has a rom of 120. So, there is hope, you don't have to rush and be careful that the person who helps has the training and experience to help you.

My friend had some metal testing at a lab in Colorado where they found that she was allergic to Nickel . She ended up having her Stryker knee removed and in its place they put in a Smith and Nephew knee that is made from Oxinium.

I am going to tag @1ELISEA who will be able to tell you about the metal testing lab.

Then, is is not necessarily a metal allergy---which is also rare. It is possible that your system just makes too much scar tissue---but I think you will want to explore every avenue. I am going to give you a list of Doctors who specialize in arthrofibrosis (that is the 1% of knee replacement people who make too much scar tissue).

In addition, I am going to tag @RunA42K who has had successful removal of extensive scar tissue like yours. I see that you are in New Jersey and she is in Texas, but she is using a compounded cream to prevent the regrowth of adhesions. Bonnie has never given up and I hope you will not either---there is an answer out there for you, you just have to find it.

I just got an email from Lori my ski instructor friend and her doctor found that she is infected with Propionibacterium acnes: An Underestimated Pathogen in Implant-Associated Infections and he thinks that is the reason that she has had so much scar tissue. (article at bottom of this post)

Doctors who specialize in Arthofibrosis
Dr. Colin Eakin, Palo Alto Medical Foundation, California
Dr. Steadman, Steadman-Hawkins Clinic, Vail, Colorado
Dr. Peter Millet, Steadman Hawkins, Vail (as of 10/1/05)
Dr. Lonnie Paulos, Salt Lake City
Dr. Frank Noyes, Cincinnati Sports Clinic, Ohio
Dr. Wojitys, Ann Arbor, Michigan
Dr. Jason Folk Steadman-Hawkins Clinic of the Carolinas Greenville, SC
Dr. Shelbourne, Indianapolis, IN
Dr. Flandry, Hughston Clinic, Georgia, Alabama
Dr. Gill Boston Mass. General Hosptial and An asst. Prof at harvard
Dr. Tomas Sculo HSS
Dr. Answorth Allen HSS
Dr. Henry A Finn Weiss Memorial Hospital Chicago
Dr. Charles Bush-Joseph---Rush University Med Center.
Dr. Michael A. Terry Northwestern U Feinberg School of Medicine
Dr. Juan J. Rodrigo Baylor Schott and White Hilcrest Medical Center Waco, TX
Dr. Thomas N Lindenfeld Cincinnati Sportsmedicine and Orthopaedic Center
Dr. Friedrich Boettner HSS New York and the United Kingdom
Dr. Ajai Cadambi Texas Hip and Knee Center Forth Worth, TX

If you Google Frank Noyes, he has a series of articles on Adhesions and a book which you can get on Amazon. Also Peter Millet is one of the men who does not think you should have an open lysis of adhesions but instead have an arthroscopic lysis. Steadman Clinic in Vail, treats arthrofibrosis, but they will not treat it after a TKR

Also Dirk Kokmeyer, Pt wrote tutorials on Arthrofibrosis Rehab that I found really useful

Propionibacterium acnes: an underestimated pathogen in implant-associated infections.
Biomed Res Int. Nov 6 2013 Portillo ME1, Corvec S, Borens O, Trampuz A.

Abstract
The role of Propionibacterium acnes in acne and in a wide range of inflammatory diseases is well established. However, P. acnes is also responsible for infections involving implants. Prolonged aerobic and anaerobic agar cultures for 14 days and broth cultures increase the detection rate. In this paper, we review the pathogenic role of P. acnes in implant-associated infections such as prosthetic joints, cardiac devices, breast implants, intraocular lenses, neurosurgical devices, and spine implants.

The management of severe infections caused by P. acnes involves a combination of antimicrobial and surgical treatment (often removal of the device). Intravenous penicillin G and ceftriaxone are the first choice for serious infections, with vancomycin and daptomycin as alternatives, and amoxicillin, rifampicin, clindamycin, tetracycline, and levofloxacin for oral treatment. Sonication of explanted prosthetic material improves the diagnosis of implant-associated infections.

Molecular methods may further increase the sensitivity of P. acnes detection. Coating of implants with antimicrobial substances could avoid or limit colonization of the surface and thereby reduce the risk of biofilm formation during severe infections. Our understanding of the role of P. acnes in human diseases will likely continue to increase as new associations and pathogenic mechanisms are discovered.

Sorry for the very long post. Ask anything else and I will try to answer.

 

[Josephine]

Also Peter Millet is one of the men who does not think you should have an open Lysis of adhesions but instead have an arthroscopic Lysis

FWIW I totally agree with him!

Coating of implants with antimicrobial substances could avoid or limit colonization of the surface and thereby reduce the risk of biofilm formation during severe infections.

It's my understanding that all implants - and he listed quite a few - have biofilm from the moment they are exposed to human body fluids, which most likely means a few minutes before they are actually implanted. According to Dr Maale, in 99.9% of cases, the biofilm is in stasis and never develops. He said that they most important research now is to discover why the biofilm becomes active and what stimulates it to do so.

 

[Gilina]

Sorry for the very long post. Ask anything else and I will try to answer.

Thanks for the long post with all the information. Travel is a problem, not only from a money standpoint, but also insurance limitations and logistics--I am a full-time caregiver. Sooo...I hope next year to find an OS in southern WI. I'll have to plan ahead in many ways (change insurance, hopefully get my sister to come and take care of my mom while I'm gone, find relatives to stay with, etc. etc.) but just thinking about it makes me want to give up. Esp. since I will have to do something about the other knee at some point. Ugh. My surgical scar looked like it would be almost unnoticeable at first--and then the part above the patella sort of erupted into a large, raised scar a few weeks later and it is still very red and lumpy [the x-ray tech commented on it]--I always wondered if there was some connection to the adhesion formation. The lower part is almost unnoticeable.

I did lose a lot of blood during surgery and after (about 30%; Hgb was down to around 9.5 after) so that is an interesting bit of information/correlation. I also found the post-op [supposedly] sterile technique of handling my drain to be sorely lacking! Never had heard about the biofilm thing before, though I had read about that bacteria previously.

I'm sure I'm not the only one who just reaches a point where they don't want to deal with all of it anymore, esp. when there is no support and no one to help. I'll have to gear up at some point to deal with all of it, but in some ways I just want to get on with life. I am terribly envious of people with knees that bend, and not happy that I cannot do what I had hoped I would be able to do after surgery.

Thanks for the support I get here.

 

[PolarBear60]

Hi, Gilina. I'm sorry. I have no knowledge about lysis of adhesions, but you've been talking to people who can help. I haven't fallen down yet, but I have had to get up and down off the floor. I use a yoga pose called "Downward Facing Dog" as my technique. For the first six months after, I don't even do that. I'm getting better at being able to sort of crouch. Since I'm getting my second knee done on the 14th, it'll be another six months before I can do anything like it again.

 

[skigirl]

Gillina, do not give up. There is a solution out there for you. There is increasing evidence that the stiff, swollen knee has a relationship with nickel sensitivity. I know that Bonnie RunA42K did not give up and she has a knee now with a rom of 120. Don't give up. You might have to postpone, but don't give up.

 

[1ELISEA]

Hi @Gilina
@skigirl tagged me regarding the nickel testing. I did have both tests available. Both test for the basic sensitivities - nickel, chromium, etc. and one tests for bone cement while the other for many of the titanium alloys. My recommendation is to have an Allergist or Rheumatologist work with you on interpreting the results. They see the patients with reactive type issues with the body and may have ideas on moving forward if metal sensitivity is suspected.

My own TKR was with the nickel free Zirconium implant and to date it's been fine. It was the first Orthopedic Surgeon (OS) I saw, prior to my TKR, that suggested the nickel sensitivity and that I needed to find another OS that specialized in a nickel free implant. After interviewing several OS I found the one for me and gave me the Smith & Nephew nickel free implant, same as the one mentioned by Skigirl.

Regarding a lumpy surgical scar, my physical therapist worked on gently massaging that area and working on the lumps and bumps. It totally worked and today it is a flat, fairly faint scar.

I hope you find the cause along with a solution to your knee issues!

Link to more complete story of my search for a knee implant