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Author Topic: Knee replacements  (Read 2501 times)

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Offline BT65

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Knee replacements
« on: May 29, 2008, 02:09:47 PM »
I was wondering if anyone (who actually is HIV+) has had a knee replacement?  I've had trouble with my knees for years and I wear a brace on the left one.  I won't go into all the history.  I've seen an orthopaedist for years about them, and he's always been very hesitant to do anything, other than giving me the brace.  He did tell me years ago that what I needed was knee replacements, but he really didn't feel comfortable doing them.

This past weekend, I did quite a bit of walking and was up most of the first two nights home with pain.  Today, I saw the orthopaedist again.  He took x-rays, told me both knees have avascular necrosis (which I already knew about one), and there's no cartilage left in either, bone-on-bone.  He said he would in no way do knee replacements on me.  I told him he might want to talk with my doctor to put his mind at ease and he replied "your doctor might well want to put my mind at ease, but evidence out of the "academy" is that people with HIV who have knee replacements end up with terrible infections, often requiring amputation."  Now, this is what he told me years ago, so there might be new evidence that doesn't know about, or just doesn't care about.  I asked him about less invasive surgery-nope.  Physical therapy-nope.  I said "so, nothing can be done?"  He shook his head and smiled.  I wanted to kick him in the balls at that point and tell him maybe if I was a Notre Dame student (that's who they mainly take care of there) he might do something.  Anyway, when I got home, I e-mailed my doctor to see if he knows any ortho around here who works with people with HIV/AIDS. 

If anyone (again, someone who's HIV+) has experience with getting a knee replacement successfully, I would appreciate hearing about it.  Thanks.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline penguin

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Re: Knee replacements
« Reply #1 on: May 29, 2008, 04:33:20 PM »
give mr orthopod a quick kick in the knees, perhaps...cos this isn't based on evidence. if knee replacement is the appropriate treatment for this in an hiv - person, then it shoudl be offered to you.

on the whole, outcomes of orthopaedic stuff in hiv+ people are nearly comparable to the general population - particularly if you have suppressed viral load & relatively well functioning immune suystem.

get a second opinion,methinks, + some good painkillers
kate

Offline sharkdiver

  • Member
  • Posts: 1,350
Re: Knee replacements
« Reply #2 on: May 29, 2008, 04:46:25 PM »
I agree with penguin.  That's a load of BS

They weren't going to do my eye surgery a few years ago, because of the "higher chance of infection"  I demanded a second opinion and the second doc said "wtf that guy is relying on old info" and I had the surgery done.

How can we help you, what needs to be done?

Sending you hugs
Sharkie

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Knee replacements
« Reply #3 on: May 29, 2008, 05:15:20 PM »
Betty

No knee replacement here, but I'd be glad to help you strangle the jerk.  After that you might want to tell him his continuing education certificates appear to be a little out of date.  Googling "knee relacement HIV" turns up several recent papers in various Journals of Bone and Joint Surgery that appear to be focused on refuting some earlier study that claimed knee replacement was particularly dangerous for those infected with HIV.

See, 2005 paper
Long-Term Results of Primary Total Knee Replacement in Patients with Hemophilia
http://www.ejbjs.org/cgi/content/abstract/87/1/85
"The overall prevalence of infection was 16%. Twelve knees required removal of components, and the reason for the removal was late infection in nine of them. The prevalence of infection in HIV-positive and HIV-negative patients was 17% and 13%, respectively (p = 0.5). When component removal for any reason, survival free of infection at any point, and mechanical failure were considered to be the end points, the ten-year survival rates were 83%, 77%, and 96%, respectively. The Knee Society clinical score was excellent or good for 80% of the knees, and the Knee Society functional score was excellent or good for 97% of the knees. "

2007 paper
Total knee replacement in haemophilic arthropathy
http://www.jbjs.org.uk/cgi/content/abstract/89-B/2/186
"Our results confirm that this is a reproducible procedure in haemophilia, even in HIV-positive patients with a CD4 count > 200 mm3 and those with inhibitors. Our rate of infection was lower than previously reported. This could be due to better control of the HIV status with highly active anti-retroviral therapy and the use of antibiotic-loaded cement. "

See also this note from somebody who was getting the saame sort of reaction and posted a question to the body on it
https://ssl.thebody.com/Forums/AIDS/SideEffects/Archive/Other/Q171640.html

Hugs
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Matty the Damned

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Re: Knee replacements
« Reply #4 on: May 29, 2008, 05:44:32 PM »
Hey Betty,

I agree with everything you've been told in this thread. The orthopod is a twat.

When I busted my wing last year there was considerable talk about having it pinned. I asked about the risk of infection arising from surgery and the senior specialist told me that as long as my neutrophil (a kind of white blood cell that deals with bacterial infections)  counts were ok, then I was at no greater peril of post surgical infection than anyone else. In fact prophylactic anti-biotic probably wouldn't be offered to me either.

MtD

Offline David_CA

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Re: Knee replacements
« Reply #5 on: May 29, 2008, 05:58:00 PM »
Betty

No knee replacement here, but I'd be glad to help you strangle the jerk.  After that you might want to tell him his continuing education certificates appear to be a little out of date.  Googling "knee relacement HIV" turns up several recent papers in various Journals of Bone and Joint Surgery that appear to be focused on refuting some earlier study that claimed knee replacement was particularly dangerous for those infected with HIV.

That's exactly what I found when I searched it.  I thought it was a load of BS and spend about an hour reading up on it (it sounds like a painful condition, BTW).  It seems like that Dr. is stuck in the late '80's to early '90's in terms of his HIV knowledge.  Is another Dr. available to you?  If not, this one sounds so out of touch that I'm not sure I'd want him to do much cutting on me.  Good luck with it.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
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You must be the change you want to see in the world.  Mahatma Gandhi

Offline anniebc

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  • Posts: 5,942
  • AM member since 2003
Re: Knee replacements
« Reply #6 on: May 29, 2008, 06:05:58 PM »
Hi Betty

Can't add anymore than what the guys have already told you...I'm sure you can look after yourself but if you need help then I'm more than willing to hold the
Quote
twat.
down while you kick the sh*t out of him... ;)

You deserve the best tretment you can get, I know how painful this must be for you..so don't take no for an answer.

Thinking of you
Hugs
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Basquo

  • Member
  • Posts: 3,260
Re: Knee replacements
« Reply #7 on: May 29, 2008, 07:09:10 PM »
I too don't have much to add to what everyone's said, and I've never had a knee replacement, but I've seen hundreds if not thousands of patients at my facility up and around and rehabing their war-wounded knees up and down the hallways, ramps, and the even the rehab pool.

If you like, I'll ask one of the rehab nurses what the course is; for example, how much time totally in bed, how much time on a walker, how much time with a cane, how much time until you can get the other one done...in fact, if you'd like, I can ask Phil, the rehab nurse from Friday Night Lights...since I used to date him  ;)

http://www.imdb.com/name/nm2422607/filmoyear

Offline Peter Staley

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  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Knee replacements
« Reply #8 on: May 29, 2008, 09:27:35 PM »
Betty -- sorry to hear about your knee problems.  I don't know anyone personally who's gone through this, but I agree with all who have commented already that you should get another orthopaedist, if you can.

People with HIV are now considered acceptable candidates for organ transplants (tell your doc about Larry Kramer's famous liver transplant), and have hip replacements all the time.  I can't see any reason why we can't have ANY type of surgery that neggies get.

Good luck as you explore all your options.

Peter

Offline BT65

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  • Member
  • Posts: 9,974
Re: Knee replacements
« Reply #9 on: May 30, 2008, 10:52:16 AM »
Thanks everyone for your replies.  I contacted my doctor after I got home via e-mail.  He said he's talked to the ortho and he (ortho) is doing research.  I'm thinking seriously of looking for a 2nd opinion.  I've got the word out to a couple friends who might be able to give me the name of a good bone doctor.  Until then, I'm really alright.  My knees have been like this for a long time.  Hopefully something will present itself soon.

Thanks again.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bear60

  • Member
  • Posts: 4,104
Re: Knee replacements
« Reply #10 on: May 30, 2008, 11:20:21 AM »
Betty...
Good luck.
Are you SURE that you've exhausted all possibilities as far as treatments without surgery.....
this SYNVISC stuff works pretty well and can just be injected into the joint.  I think its done evey six months.
Keep us posted.

Joel
Poz Bear Type in Philadelphia

Offline leatherman

  • Member
  • Posts: 6,272
  • Google and HIV meds are Your Friends
Re: Knee replacements
« Reply #11 on: May 30, 2008, 11:30:46 AM »
I don't really have anything to add either; but my support, Betty.  :-*

I hope you can find the right surgeon to do the op. My OhioMom had both knees done 2 years ago, was in the hospital doing rehab for 2 weeks. Now she does long walks in the park with her dog, and is a holy terror playing in the swimming pool.  ;D I hope that you can get as good an outcome as she did. ;)

 ;D :-* mikie


leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline AlanBama

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  • Posts: 3,639
  • Alabama: the 'other' 3rd World Country!
Re: Knee replacements
« Reply #12 on: May 30, 2008, 12:10:36 PM »
Betty,

He's full of baloney.   Sounds like his HIV education ended in 92....

Hope you can find a COMPETENT doctor.   I don't envy you, having to have knee replacement.   I may deal with that at some point in the future, but for now mine are holding up pretty well, just a touch of arthritis.  I know how painful knee problems are.

Best of luck honey.

hugs, Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline rondrond

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  • Posts: 1,712
Re: Knee replacements
« Reply #13 on: May 30, 2008, 12:50:55 PM »
Hi Betty,

I have never had a knee replcement, though I do get sharp stabbing pains in my left knee here lately. Katie has had two total knee replacements so I have lived through the therapy of bending and then the machine that would bend your leg for you.

It didn't seem anytime at all before she was able to transfer to her bed and toilet again. Of course, she had me helping and cheering  her on  as I was just as motivated as she was...ya know, that potty bucket thing.. ::)

I know that you're going to find a doctor to who will listen and 'do'..

ronnie
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
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Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
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*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline redhotmuslbear

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Re: Knee replacements
« Reply #14 on: May 30, 2008, 01:25:45 PM »
Betty,

Even if the asswipe with an MD has a great revelation, I'd still look for other care.  For being outmoded on his thinking, he does not deserve the income from the procedure.

I've had five surgeries since learning I was HIV+ ten years ago.  The first was a fistual repair, and the colorectal surgeon sees so many Queermen with HIV that he brings up anal sex and viral matters on his own.  The second was the removal of a large epidermal cyst on my left leg.  By that time I had been labelled an LTNP and was off meds, and the surgeon was more excited to work one of these rare specimens than he was concerned about infection risk.  Next were my two carpal tunnel release surgers with much the same enthusiasm from the surgeon.  The neurosurgeon who did my recent ventriculosotomy was pretty tight-lipped about HIV, though it was truly a fairly low-bleed procedure--he did, however, "show his ass" (as my grandmother would say) regarding sexual orientation and is in the process of reaping his reward for it, thanks to a major publication on diversity.... where an emoticon with devil horns on it?

As trying as it may be, kick him to the curb and start over.

Namaste,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
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10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline next2u

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  • Posts: 1,762
Re: Knee replacements
« Reply #15 on: May 30, 2008, 10:01:14 PM »
hey betty,

hope that works out well for you. i don't have anything new to add, just wanted to throw in my support. your dr sounds like an ass, be forceful if needed - remember who's working for who : )

best of luck,
d
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
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