Re: don't know how much longer I can wait.

February 17, 2001

Hi Tina and " surfacehippies, "

I just joined this group a few days ago, have only been lurking for a short

while. I also have severe osteoarthritis in both hips, and the right one

has been bone on bone for quite a while. I also developed severe persistent

pain in my right knee, like Tina I was told it was referred pain and X-ray

of the knee was normal. But it REALLY hurt, including ruining my sleep. The

doc also said that " the knee will hurt until you get the hip replaced -

period. " I'm of a mindset to do just about anything to stay away from

surgeons so about 6 months ago I started physio treatment, hoping it might

be a good stopgap measure. I've used a cane for 4 years and as a result

have generalized muscle atrophy and weakness on the right side from the hip

down. I also had congenital hip dysplasia and the hip has moved " out " a bit

since becoming arthritic. The point is, my physio thought that the

misalignment and muscle weakness on the right side had caused kneecap pain.

(Even though most of the pain is not felt right at the kneecap.) Anyhow she

gave me an exercise program specifically to strengthen the muscles that

keep the kneecap properly aligned...and it worked! Now the knee doesn't

hurt (it had been bad for a good 8 month stretch)...but the hip is still

nasty.

Tina, like you I was convinced that I had damaged my knee, and couldn't

bear the thought of having a third wrecked joint. Most depressing, and the

docs didn't recommend the physiotherapy, I just decided to get it myself.

They offer painkillers, canes and surgery - all useful of course, but they

might be overlooking the value of physiotherapy in coping with all this

" pre-op. "

Hope this helps,

Debbie MacKenzie

BTW, What's a " compassionate use exemption? " - any chance that would be

available to a youngish Canadian who doesn't relish having the tops sawed

off her femurs? (Surface replacements are not done in Canada.)

At 09:46 PM 2/16/01 -0000, you wrote:

>Hi surfacehippys,

>

>I am experiencing so much pain right now I don't know how much longer

>I can wait for the resurfacing...//... Has anyone else on this site had

knee pain

>as a result of a bone on bone hip?

February 17, 2001

Dear Tina,

I am very sorry that you are having so much pain and I hope you will be

able to get your hip resurfaced soon. I don't know if my situation is like

yours, but I often had knee pain on the same side as my bad hip (which I

had resurfaced on 1/30/01). It turned out to be due to weak muscles, since

I was favoring that side so much, and I was able to get through it by doing

strengthening exercises such as knee extensions. You can do these from a

seated position without putting much stress on you hip. You might also try

icing your knee. Good luck to you.

Jeanne

At 09:46 PM 2/16/01 -0000, you wrote:

>Hi surfacehippys,

>

>I am experiencing so much pain right now I don't know how much longer

>I can wait for the resurfacing. I am on and off my crutches

>especially during the evening. I am waiting to see if and when I

>will be approved for a Compassionate Use Exemption at the JRI for the

>metal/metal resurfacing. SO....I'm in limbo waiting. Even though my

>right hip is bone on bone and extremely painful I am experiencing the

>most pain with my right knee. Two ortho docs have said that it is

>referred pain. They did Xrays and the joint looks fine. I also

>have a few bone spurs on the knee but have been told that the spurs

>shouldn't be causing the pain that I'm in. It is excruciating at

>times excruciating. My Rheumy doc has scheduled me for an MRI to

>rule out anything else. Has anyone else on this site had knee pain

>as a result of a bone on bone hip? Anyhow, I don't know how much

>longer I can go on like this. I am so depressed. I would have the

>surgery done tonight if I could. I feel like crying all the time. I

>am so frightened that because I have waited too long to have the hip

>done I have caused damage to my knee.

>

>Also--before I sing off has anyone had a THR on one hip and a

>resurfacing on the other. I would love to glean info. from someone

>who has since I had a THR a year ago on my left hip and am now

>looking at Resurfacing for my right hip? It be would so encouraging

>to talk to someone who has the same situation.

>

>Thanks for all your help. Tina

>

February 17, 2001

Hi Debbie and other surfacehippys,

I can't tell you how comforting your words were. I really hope that

all will be well with my knee when I have the MRI. I want to follow

your suggesion about seeking physiotherapy. What exactly is

physiotherapy? Is it the same as physical therapy? Do I just look

in the yellow pages to get help for this? Would you mind sharing

some of the exercises that you were told to do on this site. It

would be very helpful!!! I am so hopeful that I too can eradicate

this severe knee pain. Isn't it interesting that a knee that looks

fine on xrays can be so debilitating and a hip that looks horrible

isn't nearly as painful as the knee. Strange!

Also, regarding the " Compassionate USe Exemption " --initially I tried

to be a candidate for the Metal/Metal resurfacing clinical trials

being held at the Joint Replacement INstitute in Los Angeles, CA.--

however, I was excluded because I have Ankylosing Spondylitis (an

inflammatory type of Arthritis). Dr. Schmalzried at JRI is

attempting to qualify me for this so called " compassionate Use

Exemption " in order to still receive the surgery. Chuck ,

Executive Director at JRI is very helpful and kind--he would be able

to provide you with accurate details and info. about the

Compassionate Use Exemption and more details about the procedure. It

may be something you might want to consider. You may even qualify

for the clinical trial because your condition and type of arthritis

may not be an inflammatory type. HOpe this helps. Tina

> >Hi surfacehippys,

> >

> >I am experiencing so much pain right now I don't know how much

longer

> >I can wait for the resurfacing...//... Has anyone else on this

site had

> knee pain

> >as a result of a bone on bone hip?

February 18, 2001

Hi Tina,

Yeah, you may well be able to be optimistic regarding your knee. I know

that " referred pain " does occur, but the muscle weakness that results from

the hip pain can clearly cause a misalignment of the kneecap and result in

" direct " knee pain. My hip still hurts, but the pain is no longer

" referred " to my knee and I have to credit the exercise program. It took

about 2 months to work, but it definitely did the trick. I think

" physiotherapy " in Canada is the same thing as " physical therapy " in the

U.S. And you need an individual assessment of course, it would not be

appropriate to just assume that you should do the exact same things that I

did. However here is a bit of information on the topic that you can read

online:

This article describes how the kneecap pain develops - the thing only needs

to be slightly out of it's groove to cause pain.

http://physicaltherapy.about.com/health/physicaltherapy/library/weekly/aa091

200a.htm

This article describes the same thing and illustrates a couple of the

exercises. The first one shown, the " wall slide " was one that was important

for me in " recruiting " the muscles on the inner thigh to work at pulling

the kneecap back toward the center. And strengthening the quadriceps is

very important.

http://www.orthohealth.com/askthedoc/anteriorkneepain.cfm

Beyond that, in my case I was also given exercises to strengthen the arch

in the foot since mine tends towards flat, another factor that can

aggravate the misalignment problem.

Here we have physiotherapists that are hospital-based (that's who I see, on

a referral that I requested from my family doctor) and also physios that

work in private clinics. They will take referrals from doctors or

self-referrals from patients.

Best of luck,

Debbie

At 10:42 PM 2/17/01 -0000, you wrote:

>Hi Debbie and other surfacehippys,

>

>I can't tell you how comforting your words were. I really hope that

>all will be well with my knee when I have the MRI. I want to follow

>your suggesion about seeking physiotherapy. What exactly is

>physiotherapy? Is it the same as physical therapy? Do I just look

>in the yellow pages to get help for this? Would you mind sharing

>some of the exercises that you were told to do on this site. It

>would be very helpful!!!

February 18, 2001

" Surfacehippies " (I think that's cute, you're only hippies on the surface,

right? Flower tattoos?...),

I just noticed that the first link that I put in my last post is so long

that it got broken - if you click on it you do not get the article that I

was trying to point you to. I guess you'll have to cut and paste it into

your browser or something...the article title is " Needy Knees... "

Here it is again:

http://physicaltherapy.about.com/health/physicaltherapy/library/weekly/aa091

200a.htm

cheers,

Debbie

February 18, 2001

Isn't it interesting that a knee that looks

>fine on xrays can be so debilitating and a hip that looks horrible

>isn't nearly as painful as the knee. Strange!

Not at all. I am waiting for insurance approval for resurfacing, and I

have had problems with my left knee (my left hip is the worst of the two)

off and on for at least a couple of years. I visit a chiropractor and get

a massage on a regular basis (more often now as surgery looms ever closer).

I also exercise as much as I can tolerate (mostly swimming and stationary

biking at this point), and stretch on a regular basis. The idea is to

strengthen what is weak and stretch what is tight. Turned out that the

knee pain was because of weak abductors and tight adductor muscles. Pulled

everything in the knee every which way and that was the cause of the pain.

Best to you,

February 18, 2001

Tina,

I've not had either operation as of yet, but I am writing to encourage you

to hang in there, and don't let depression keep you from focusing on the

positive wonderful things life daily offers (a child's smile or hug, a sunny

day, the ability to breathe and conversate with another - simple things that

bring joy). I know it is very very painful, for I am dealing with the bone

on bone pain and daily experience pain in my knee. I am scheduled for a THR

(right) on 2/27 and a fvfg on May 15 (left). I opted not to do the metal on

metal resurfacing, for when I contacted Dr. Vail's office at Duke to inquire

about it, I was told that it wasn't FDA approved as of yet, the device is

investigational, and there is not any long term data available. I am a

somewhat conservative person and feel more comfortable with the THR, which

I've heard great things about. So, I cannot answer most of your questions

directly, but I can certainly sympathize with you. Although I do not walk

on crutches, I am very reliant on a cane and I, too, am very much looking

forward to surgery because I haven't slept real well since 1/00 when the

pains first started (diagnosed AVN in May of 2000) and I have about a one

hour drive to work every day that sometimes seems unbearable. I am

consistently tired because I rarely sleep well and I would have never

figured that at 28 I'd be dealing with such pain and enduring a major

surgery at 29. Yet, I tell myself that we all, as humans, have both

positive and negative unexpected events in life that we are forced to deal

with, and when they happen we must choose to fight and survive (mentally and

emotionally), for to choose otherwise is a sort of death - for to be in a

depressed state is to be without the fullness of life. Its okay to cry

periodically, the release of tears is sometimes necessary. If it helps to

cry (and it does), then do it, but do not linger in your tears, for

depression will not help make the situation any better. " Weeping may

endure for a night, but joy comes in the morning. " " And after you have

suffered a little while, the God of all grace will perfect (complete),

establish, strengthen, and settle you. " These are not cliches that I throw

out haphazardly. I live by them and totally depend on God daily to keep my

attitude positive and the pain bearable and eventually nonexistent. I have

my down days but they are few and far between. Take care, Tina, and again,

hang in there. Feel free to contact me by direct email if you so choose.

February 18, 2001

One more thing, Tina, I forgot to ask. Have you tried heat therapy ( a

heating pad or sleeping under an electric blanket? or massage and water

therapy? They are temporarily effective in easing the pain.

don't know how much longer I can wait.