New member

Posted September 3, 2005 · September 3, 2005

Hi Ann,

Thanks for your help as well. I am writing these things down for future

reference. I will ask the doc about a CT scan, and no I haven't had one of

those. Sounds like a good idea.

I'll go look for your posts on taping but whatever taping my therapist did

on me didn't seem to help.

As for my activities, I pretty much don't do anything that involves anything

much more strenuous than walking. I used to play tennis occasionally and

now I wouldn't dream of trying to run around any court, or run at all.

Forget bowling. Even something as simple as ping pong involves too much

twisting of the legs for me to really get into it. I used to hike a little,

but I find I can do less and less of that. But, until this setback, I would

at least attempt certain things. I enjoy bike riding, but I look for

places that are flat because there is no way I can take the strain of a big

hill. I had still been doing the treadmill but it was recommended that I

not go as fast as I had been. But now I'm dealing with something totally

different than before and don't know if I can hope to get back to where I

was prior to the swelling. I've had pains when stepping on the brakes, but

never really bad ones. I'd be afraid to drive if I did. Even though my

knee is not noticeably swollen to me, my therapist said she can still feel

the inflammation in there. It's been over 5 months now, and I am faithful

about exercising and using ice.

I don't quite dare to get my hopes up over this doctor, but time will tell.

A physical therapist recommended him and I just hope that is a good sign.

Usually nurses are the best sources for what's good and bad about a doctor,

so I'm sort of hoping the same would apply to a physical therapist. Had I

been thinking though, I would have asked my doctor if she recommended anyone

in particular but sometimes the brain doesn't always function properly:) I

definitely appreciate everyone's advice. It sure is overwhelming isn't it?

I try to read stuff on the internet and I just can't absorb it all.

Thanks so much,

Re: New Member

To what extent does your knee pain limit your activities? I had the same

problem standing on a hard floor that you did. Also there was one time I

was driving around looking at properties, so did a lot of braking, and my

knee was swollen for over a week. Nothing else I've ever done has caused my

knee to swell (that I could see).

Have you had a CT scan of your knee? If you get a 3-D CT scan, it should

show bone abnormalities better than MRI. MRI is better for soft tissue

(cartilage, tendons). I've encountered a problem recently with MRI's not

being very clear. I remember MRI's I had taken in the mid-80's were really

clear with good contrast, but was looking yesterday at one of my MRI's (I

keep my films -- can't trust labs or doctors to not lose them) and it was so

dark I don't see how anyone could read it.

Also, you might try to find out who the team OS is for a professional

basketball, football, soccer, etc. team near you. Those docs have to do a

good job or they get fired. Or, lacking that, find one who specializes in

knees. When my knee first went bad, the first doc I went to couldn't see

anything wrong & sort of lackadaisically said " Well, I guess I could go in &

look " . Yeah, sure. Might as well get my next door neighbor to go in and

look.

You might, though, end up having to let someone (who does know what s/he's

doing) go in and look. There are a couple of problems with that -- wherever

they poke a hole through your muscles, it'll scar (I haven't had any

problems from mine, though), and wherever the camera is, it can't see behind

itself.

I hope you can find a good doc -- don't trust any old OS -- some are way

better than others.

Have you seen my posts on kneecap taping (McConnell taping)? It's a good

test of whether your problem is just CP or not.

Ann

Posted September 4, 2005 · September 4, 2005

It's beginning to sound more like a torn meniscus or something else rather than

chondromalacia (esp. since the taping didn't work -- I'll send you my writeup

tomorrow). I had both. Since you can bicycle, you can stand having your knee

bend over & over -- that's another sign that it might not be chondromalacia.

Pain upon twisting your knee could be a torn meniscus. More later.

Ann

Re: New Member

To what extent does your knee pain limit your activities? I had the same

problem standing on a hard floor that you did. Also there was one time I

was driving around looking at properties, so did a lot of braking, and my

knee was swollen for over a week. Nothing else I've ever done has caused my

knee to swell (that I could see).

Have you had a CT scan of your knee? If you get a 3-D CT scan, it should

show bone abnormalities better than MRI. MRI is better for soft tissue

(cartilage, tendons). I've encountered a problem recently with MRI's not

being very clear. I remember MRI's I had taken in the mid-80's were really

clear with good contrast, but was looking yesterday at one of my MRI's (I

keep my films -- can't trust labs or doctors to not lose them) and it was so

dark I don't see how anyone could read it.

Also, you might try to find out who the team OS is for a professional

basketball, football, soccer, etc. team near you. Those docs have to do a

good job or they get fired. Or, lacking that, find one who specializes in

knees. When my knee first went bad, the first doc I went to couldn't see

anything wrong & sort of lackadaisically said " Well, I guess I could go in &

look " . Yeah, sure. Might as well get my next door neighbor to go in and

look.

You might, though, end up having to let someone (who does know what s/he's

doing) go in and look. There are a couple of problems with that -- wherever

they poke a hole through your muscles, it'll scar (I haven't had any

problems from mine, though), and wherever the camera is, it can't see behind

itself.

I hope you can find a good doc -- don't trust any old OS -- some are way

better than others.

Have you seen my posts on kneecap taping (McConnell taping)? It's a good

test of whether your problem is just CP or not.

Ann

Posted September 4, 2005 · September 4, 2005

Hi Ann,

My therapist wondered if there might be a tear inside they didn't see on the

MRI. I don't know how that could happen, but I suppose anything is

possible. They said I can ride my exercise bike (although I can't do that

lately) for therapy, so long as there isn't much tension and I don't go for

long. That just depends on how I feel on a given day. I'm quite sure I do

have chondromalicia though. This has gone on for 9 years now, and I've

always had the pain when bending the knee (standing up or trying to take

stairs). It's just that the pain was never as pronounced and I recovered

much more quickly. My knee was doing well when I took my real bicycle out,

but that didn't last long:)

Thanks again,

PS. I've decided that when I see this doctor if he asks me what my problem

is I'll just be upfront and tell him I want him to tell me his opinion

before I tell him my story. That ought to work.

Re: New Member

It's beginning to sound more like a torn meniscus or something else rather

than chondromalacia (esp. since the taping didn't work -- I'll send you my

writeup tomorrow). I had both. Since you can bicycle, you can stand having

your knee bend over & over -- that's another sign that it might not be

chondromalacia. Pain upon twisting your knee could be a torn meniscus.

More later.

Ann

Posted September 4, 2005 · September 4, 2005

Yes, it's definitely possible for an MRI not to show something. As for tearing

a meniscus w/o knowing it, that's what happened to me. I think the cause was my

employer making me crawl around under desks getting computer serial numbers for

2 years, but there was no acute event. And when I went to my OS, with what I

knew was a new and different pain, he said " Oh, it's just arthritis " , but it

didn't feel like bone on bone, so he did an X-ray and agreed that it wasn't

arthritis. Then he said " It's probably patellar tendinitis " . But the pain

wasn't in the patellar tendon. It was deep inside the knee. He lost interest.

Later, having been reduced to using a cane, I went back. He said, irritatedly

(and mind you, he never ordered an MRI during this time), " It's possible that

you have enthesopathy. " I asked what that was. He said it was an inflammation

of the tendons, related to RA. I told him I'd just had all the autoimmune tests

done & they were negative. He said " You can have enthesopathy with negative

tests " . So then I worried about having an RA-related disease. Finally I gave

up on him & went to another OS (without the clinic notes from the first one),

who did an MRI, found the torn meniscus, went in, removed part of it (I thought

this would end up with bone on bone & more pain, but it hasn't), smoothed out my

CP. It didn't help the CP, but at least it got me off the cane.

Good luck,

Ann

Re: New Member

It's beginning to sound more like a torn meniscus or something else rather

than chondromalacia (esp. since the taping didn't work -- I'll send you my

writeup tomorrow). I had both. Since you can bicycle, you can stand having

your knee bend over & over -- that's another sign that it might not be

chondromalacia. Pain upon twisting your knee could be a torn meniscus.

More later.

Ann

Posted September 5, 2005 · September 5, 2005

My MRI showed a torn miniscus and surgery was scheduled to repair it, when he

got in the meniscus was fine, he did a LR and cleaned up my knee cap. Strange

how we can all be misdiagnosed time after time. Some of us time after time after

time......................

Ann <ruby2zdy@...> wrote:Yes, it's definitely possible for an

MRI not to show something. As for tearing a meniscus w/o knowing it, that's

what happened to me. I think the cause was my employer making me crawl around

under desks getting computer serial numbers for 2 years, but there was no acute

event. And when I went to my OS, with what I knew was a new and different pain,

he said " Oh, it's just arthritis " , but it didn't feel like bone on bone, so he

did an X-ray and agreed that it wasn't arthritis. Then he said " It's probably

patellar tendinitis " . But the pain wasn't in the patellar tendon. It was deep

inside the knee. He lost interest. Later, having been reduced to using a cane,

I went back. He said, irritatedly (and mind you, he never ordered an MRI during

this time), " It's possible that you have enthesopathy. " I asked what that was.

He said it was an inflammation of the tendons, related to RA. I told him I'd

just had all the autoimmune tests done &

they were negative. He said " You can have enthesopathy with negative tests " .

So then I worried about having an RA-related disease. Finally I gave up on him

& went to another OS (without the clinic notes from the first one), who did an

MRI, found the torn meniscus, went in, removed part of it (I thought this would

end up with bone on bone & more pain, but it hasn't), smoothed out my CP. It

didn't help the CP, but at least it got me off the cane.

Good luck,

Ann

Re: New Member

It's beginning to sound more like a torn meniscus or something else rather

than chondromalacia (esp. since the taping didn't work -- I'll send you my

writeup tomorrow). I had both. Since you can bicycle, you can stand having

your knee bend over & over -- that's another sign that it might not be

chondromalacia. Pain upon twisting your knee could be a torn meniscus.

More later.

Ann

Posted September 5, 2005 · September 5, 2005

I'm astounded he did a LR on the fly but I'm not surprised by the

misread MRI. I think these misread MRIs are the result of cut-happy

surgeons. Doctors make a lot more money from doing surgery than

referring you to PT.

Don

On Sep 5, 2005, at 12:49 PM, shannon webb wrote:

> My MRI showed a torn miniscus and surgery was scheduled to repair it,

> when he got in the meniscus was fine, he did a LR and cleaned up my

> knee cap. Strange how we can all be misdiagnosed time after time. Some

> of us time after time after time......................

>

> Ann <ruby2zdy@...> wrote:Yes, it's definitely

> possible for an MRI not to show something. As for tearing a meniscus

> w/o knowing it, that's what happened to me. I think the cause was my

> employer making me crawl around under desks getting computer serial

> numbers for 2 years, but there was no acute event. And when I went to

> my OS, with what I knew was a new and different pain, he said " Oh,

> it's just arthritis " , but it didn't feel like bone on bone, so he did

> an X-ray and agreed that it wasn't arthritis. Then he said " It's

> probably patellar tendinitis " . But the pain wasn't in the patellar

> tendon. It was deep inside the knee. He lost interest. Later,

> having been reduced to using a cane, I went back. He said,

> irritatedly (and mind you, he never ordered an MRI during this time),

> " It's possible that you have enthesopathy. " I asked what that was.

> He said it was an inflammation of the tendons, related to RA. I told

> him I'd just had all the autoimmune tests!

> done &

> they were negative. He said " You can have enthesopathy with negative

> tests " . So then I worried about having an RA-related disease.

> Finally I gave up on him & went to another OS (without the clinic

> notes from the first one), who did an MRI, found the torn meniscus,

> went in, removed part of it (I thought this would end up with bone on

> bone & more pain, but it hasn't), smoothed out my CP. It didn't help

> the CP, but at least it got me off the cane.

>

> Good luck,

> Ann

>

> Re: New Member

>

> It's beginning to sound more like a torn meniscus or something else

> rather

> than chondromalacia (esp. since the taping didn't work -- I'll send

> you my

> writeup tomorrow). I had both. Since you can bicycle, you can

> stand having

> your knee bend over & over -- that's another sign that it might not

> be

> chondromalacia. Pain upon twisting your knee could be a torn

> meniscus.

> More later.

>

> Ann

>

Posted September 5, 2005 · September 5, 2005

Well, that's strange. I'm at a loss, now. Obviously something's wrong. Good

luck with the new doc. Keep us posted.

Ann

Re: New Member

It's beginning to sound more like a torn meniscus or something else rather

than chondromalacia (esp. since the taping didn't work -- I'll send you my

writeup tomorrow). I had both. Since you can bicycle, you can stand having

your knee bend over & over -- that's another sign that it might not be

chondromalacia. Pain upon twisting your knee could be a torn meniscus.

More later.

Ann

Posted September 5, 2005 · September 5, 2005

He may not have done it on the fly. My last OS noted in his surgeon's report

that my patella was laterally subluxed, so apparently they can tell that from

the inside. Unfortunately MINE didn't do a LR. He was banking on my being able

to pull the kneecap over by strengthening the VMO. I wish he'd done the LR.

Ann

Re: New Member

>

> It's beginning to sound more like a torn meniscus or something else

> rather

> than chondromalacia (esp. since the taping didn't work -- I'll send

> you my

> writeup tomorrow). I had both. Since you can bicycle, you can

> stand having

> your knee bend over & over -- that's another sign that it might not

> be

> chondromalacia. Pain upon twisting your knee could be a torn

> meniscus.

> More later.

>

> Ann

>

Posted September 6, 2005 · September 6, 2005

Re: New Member

Doctors make a lot more money from doing surgery than

> referring you to PT.

My experience was that I had more doctors who were a little too conservative

and didn't listen to my cries for help and continued to send me to PT even

when it no longer helped. Good doctors don't need to solicit business, they

have plenty of it. The best doctors listen to their patients and realize

every case is different, especially where CP is involved.

Mike

MT

Posted September 6, 2005 · September 6, 2005

My experience has been like Mike's too. Except that I haven't run into all that

many doctors who give a damn about my mobility.

Ann

Re: New Member

Doctors make a lot more money from doing surgery than

> referring you to PT.

My experience was that I had more doctors who were a little too conservative

and didn't listen to my cries for help and continued to send me to PT even

when it no longer helped. Good doctors don't need to solicit business, they

have plenty of it. The best doctors listen to their patients and realize

every case is different, especially where CP is involved.

Mike

MT

Posted September 6, 2005 · September 6, 2005

Re: New Member

>

> Doctors make a lot more money from doing surgery than

> > referring you to PT.

>

> My experience was that I had more doctors who were a little too

> conservative

> and didn't listen to my cries for help and continued to send me to PT

> even

> when it no longer helped. Good doctors don't need to solicit business,

> they

> have plenty of it. The best doctors listen to their patients and realize

> every case is different, especially where CP is involved.

>

> Mike

> MT

>

Posted September 6, 2005 · September 6, 2005

Just out of curiousity, how many doctors have you all been to see before you

found one willing to help. If I go for another opinion this will be my 5th one.

All my former opinions tell me that I am free to work just not stand, bend,

lift, or walk any. Now I cannot sit legs bent for more than 30 minutes without

stiffening and pain. I want desperately to go back to work and I need a doctor

who can figure out how to make me comfortable enough to do that, or at least

give it a try. Also, now that I think back to the doctor that did my LR (back in

december of 2003) his office was ALWAYS backed up because he was running late

from one of his surgeries. Maybe this man was cut happy!

Mike Bernhardt <mlbernhardt@...> wrote:

Re: New Member

>

> Doctors make a lot more money from doing surgery than

> > referring you to PT.

>

> My experience was that I had more doctors who were a little too

> conservative

> and didn't listen to my cries for help and continued to send me to PT

> even

> when it no longer helped. Good doctors don't need to solicit business,

> they

> have plenty of it. The best doctors listen to their patients and realize

> every case is different, especially where CP is involved.

>

> Mike

> MT

>

Posted September 6, 2005 · September 6, 2005

The seventh OS I saw in the last two years (including one at Mayo) did the

first two arthroscopic surgerys on me. The eight one (recommended by the

sixth OS from OHSU in Portland OR) did the last two surgerys last winter.

Mike

MT

Re: New Member

>>

>> Doctors make a lot more money from doing surgery than

>> > referring you to PT.

>>

>> My experience was that I had more doctors who were a little too

>> conservative

>> and didn't listen to my cries for help and continued to send me to PT

>> even

>> when it no longer helped. Good doctors don't need to solicit business,

>> they

>> have plenty of it. The best doctors listen to their patients and

>> realize

>> every case is different, especially where CP is involved.

>>

>> Mike

>> MT

>>

Posted September 6, 2005 · September 6, 2005

Mike, was the Portland surgeon good? I live 100 miles from there now.

I can't remember what all you had done & why you needed so many surgeries & what

your " ability " status is now.

Ann

Re: New Member

>>

>> Doctors make a lot more money from doing surgery than

>> > referring you to PT.

>>

>> My experience was that I had more doctors who were a little too

>> conservative

>> and didn't listen to my cries for help and continued to send me to PT

>> even

>> when it no longer helped. Good doctors don't need to solicit business,

>> they

>> have plenty of it. The best doctors listen to their patients and

>> realize

>> every case is different, especially where CP is involved.

>>

>> Mike

>> MT

>>

Posted September 6, 2005 · September 6, 2005

Hi Ann & ,

I feel so horrible with all you've been through. I can't hardly remember

what my first military told me other than there really wasn't much they

could do besides physical therapy. As I would have bad spells over the

years my husband would tell me to go to the doctor's and I figured there

wasn't anything they could do to help and I usually worked through it on my

own. I also have a problem with my whole legs aching which my mother and

grandmother had and no one could ever tell them what was wrong so I just

don't hold much faith in doctors. I knew the day would come when I'd have

no choice, but until then I wasn't budging! So I guess my search for a good

doctor could just be beginning. This last one I saw never even told me

there was a surgery they could do for this, I found that on the internet!

Not that I'm in a hurry for surgery, but it's nice to know all options.

Well, got to get ready for work. Good luck everyone.

Re: New Member

My MRI showed a torn miniscus and surgery was scheduled to repair it, when

he got in the meniscus was fine, he did a LR and cleaned up my knee cap.

Strange how we can all be misdiagnosed time after time. Some of us time

after time after time......................

Ann <ruby2zdy@...> wrote:Yes, it's definitely possible for

an MRI not to show something. As for tearing a meniscus w/o knowing it,

that's what happened to me. I think the cause was my employer making me

crawl around under desks getting computer serial numbers for 2 years, but

there was no acute event. And when I went to my OS, with what I knew was a

new and different pain, he said " Oh, it's just arthritis " , but it didn't

feel like bone on bone, so he did an X-ray and agreed that it wasn't

arthritis. Then he said " It's probably patellar tendinitis " . But the pain

wasn't in the patellar tendon. It was deep inside the knee. He lost

interest. Later, having been reduced to using a cane, I went back. He

said, irritatedly (and mind you, he never ordered an MRI during this time),

" It's possible that you have enthesopathy. " I asked what that was. He said

it was an inflammation of the tendons, related to RA. I told him I'd just

had all the autoimmune tests done &

they were negative. He said " You can have enthesopathy with negative

tests " . So then I worried about having an RA-related disease. Finally I

gave up on him & went to another OS (without the clinic notes from the first

one), who did an MRI, found the torn meniscus, went in, removed part of it

(I thought this would end up with bone on bone & more pain, but it hasn't),

smoothed out my CP. It didn't help the CP, but at least it got me off the

cane.

Good luck,

Ann

Posted September 6, 2005 · September 6, 2005

Unfortunately, I am in the position that every doctor I see " wants to help " so

much so they want to jump into surgery first visit! Forget all the MRI's and

other things to even see if it is necessary. I have made two mistakes that

way...I am being very careful and leery now and pretty much practicing my own

medicine through the help on this list and the internet.

Joya

Re: New Member

Just out of curiousity, how many doctors have you all been to see before you

found one willing to help. If I go for another opinion this will be my 5th o

Posted September 6, 2005 · September 6, 2005

Re: New Member

> Mike, was the Portland surgeon good?

I actually really liked him although he referred me to a former colegue of

his formerly from the east coast who was closer to me. That doctor actually

did the two anterior interval releases on me. Here is the web page for the

doctor I saw in Portland;

http://www.ohsu.edu/academic/som/orthopaedics/crawfordd.htm

Dr. Crawford also wrote this exercise page that I used extensively and

helped me about as much as any PT;

http://www.ohsu.edu/orthopaedics/dc_knee.htm

>

> I can't remember what all you had done & why you needed so many surgeries

> & what your " ability " status is now.

I had a LR and AIR done on both knees. Neither doctor wanted to do both

knees at the same time. Each type of surgery seemed to help, but I still

need to wear Tubigrips to keep the chronic inflammation down. It is still

hard for me to do most activities that require much knee bending, but at

least I can walk, sit, and sleep reasonably comfortable now.

Mike

MT

Posted September 6, 2005 · September 6, 2005

I want to put this question out to the group.... with your C.P. do you

experience thigh pain and pain from the knee cap up the thigh? I had an MRI

down which noted C.P. along with weight bearing defect of some other bone.

My knee is locking more than ever to the outer edge especially after

physical therapy with ultrasound massage.

My doctor thought I had a torn meniscus because I had pain with giving out

in the inner knee. Now, if I turn quickly, I still get pain in that area but

my worse pain is in the knee and thigh.

Upon the good advice of one of the members, I am requesting a 3-d contrast

CT scan to look at my knee. I am also wondering if I need to ask them to

bend my knee slightly for better pictures-- anyone have any ideals on

this????

Thanks all!