Re: Diagnosed with CP, very active lifestyle, no treatment working...What to do?

[Guest guest]

I know it's not what you want to hear, but as someone who has been through

something like this, the first thing you should do is commit to and accept that

you'll have to dial your activity WAY down for awhile and slowly build back up

again (bad doctors will say forever, but that is short-sighted). In my

experience anything that causes more than minimal pain and swelling should be

avoided, although sometimes you don't know until the next day. I play soccer,

so I know how much not being active can really suck. I've also pushed myself

and ended up regretting it and/or setting myself back even farther and not being

able to walk or sit is a really BAD position to be in, especially if you need to

work.

A number of people in this group know of great doctors, depending on where you

live. Finding one you trust is pretty key, as well as a really excellent

physical therapist, and not all of them are.

Try reading 's book:

http://www.amazon.com/Saving-My-Knees-Doctors-ebook/dp/B004JHYTEI

It mirrors so many of our own stories and might save you some heartache and get

you on the path to healing.

Good luck,

Zaz

>

> Thought I'd come and ask the 'like-kneed' folks for some advice.

>

> I am a marathon, endurance hiker (and martial arts dabbler) and have been

diagnosed with Chondromalacia Patella.

>

> Started as a slight clicking in my R knee for a couple years. Severely has

gone downhill and become increasingly worse and very painful, impacting my daily

life for the past 8 months. I have about every single 'cause' of CP--tremendous

Q angle and loss of arches in feet--to name the big ones. Have various back and

neck injuries from a bad car accident in 2004, along with 2 screws in my L ankle

from reconstruction after same accident.

>

> I don't have complete confidence in my doctor (orthopaedic surgeon) (and his

PA) both do not seem to really have an interest in my case.

>

> First: did a cortisone shot--which caused me immense pain and swelling for

days and made my knee worse.

>

> Second: did PT which has been unsuccessful.

>

> Knee keeps getting worse and I am in the middle of training for an upcoming

hiking challenge ~35 miles on 6/18, so I thought what-the-hell I will start

these injections because the knee is getting worse so how much could it screw me

up. (Mind you I've been hiking 20 miles each weekend for the past two months and

working out during the week, pushing through the pain.) After my last hike, knee

was so swollen I could have sworn I tore my medial menisus!

>

> Dr. said I didn't tear meniscus based on a 5 second physical exam. Ha!

>

> Last Thursday (5/26) got my first injection (of 5) of Supartz. For two days

the knee was swollen and hurting. Felt like it was tight and like the whole

joint was 'off track'. Dr. said I could hike 48 hours after my injection. Went

on an 18 mile training hike on Sunday...did decent...'not the same knee' though,

barely finished. Knee is in a lot of pain and still swollen. (Can anyone tell

me their experience with Supartz?? Worth continuing?)

>

> Really planning on doing my hiking challenge, but the knee is nearly making it

impossible to do normal daily things, let alone a hiking marathon. Any

suggestions on how to get my knee through this? Should I be doing it?

>

> I am looking to seek out a second opinion from another Dr. Hoping to get into

see someone within a couple weeks. Any specific things I should be asking?

>

> So I guess my question for everyone is...what can I do for treatment? I am 24

and live an active lifestyle, I hope for a treatment that will allow for full

recovery to maintain my extreme sports lifestyle! I have read about Lateral

Releases, arthroscopic surgeries to remove damaged cartilage...etc and they all

sound too invasive, little guarantee that it will actually work and long

recovery times.

>

> What is scaring me more is that the L knee is starting the slight 'click' that

the R knee started as...

>

>

> Any and all opinions/advice would be appreciated. (Sorry this is

semi-brief...it's a long story and just wanted to hit the highlights!)

>

[Guest guest]

I agree with alot of what Zaz has to say. My knee problems were small at

first but slowly getting worse over time. Rest was not the answer for me

because

I would try to become active again after resting for a while, but the rest

made my knee weaker not stronger.

I tried leg strengthening exercises, but that overstressed my knee.

My knee did not improve until I did an exercise program. After reading Doug

Kelsey's blog, I adopted a program of exercises that were below the load

tolerance of my knee. I tried to avoid activities that stressed my knee too

much. At first, this meant no running, jumping, walking my bike up hills,

avoiding stairs. etc. I think I became a little paraniod about this, but

eventually I was able to sense the load tolerance of my knee by the feedback it

would give me. I began to realize that healing is an up-and-down thing, not a

linear thing and I had to rest at certain times.

It took quite a while for me to notice improvement because as Doug says,

cartilage heals very slowly. Eventually my knee joint became stronger, then I

could focus more on strengthening my quads, hips, and glutes. My PT says this

is

important to have a properly functioning knee. Slowly, I could add activities

such as running, biking up hills, hiking, etc.

I also agree with Zaz that finding a great physical therapist is important.

Good luck,

Larry

________________________________

From: zazerh <zaz@...>

chondromalacia treatment

Sent: Wed, June 1, 2011 12:54:50 AM

Subject: Re: Diagnosed with CP, very active

lifestyle, no treatment working...What to do?

 

I know it's not what you want to hear, but as someone who has been through

something like this, the first thing you should do is commit to and accept that

you'll have to dial your activity WAY down for awhile and slowly build back up

again (bad doctors will say forever, but that is short-sighted). In my

experience anything that causes more than minimal pain and swelling should be

avoided, although sometimes you don't know until the next day. I play soccer, so

I know how much not being active can really suck. I've also pushed myself and

ended up regretting it and/or setting myself back even farther and not being

able to walk or sit is a really BAD position to be in, especially if you need to

work.

A number of people in this group know of great doctors, depending on where you

live. Finding one you trust is pretty key, as well as a really excellent

physical therapist, and not all of them are.

Try reading 's book:

http://www.amazon.com/Saving-My-Knees-Doctors-ebook/dp/B004JHYTEI

It mirrors so many of our own stories and might save you some heartache and get

you on the path to healing.

Good luck,

Zaz

>

> Thought I'd come and ask the 'like-kneed' folks for some advice.

>

> I am a marathon, endurance hiker (and martial arts dabbler) and have been

>diagnosed with Chondromalacia Patella.

>

>

> Started as a slight clicking in my R knee for a couple years. Severely has

gone

>downhill and become increasingly worse and very painful, impacting my daily

life

>for the past 8 months. I have about every single 'cause' of CP--tremendous Q

>angle and loss of arches in feet--to name the big ones. Have various back and

>neck injuries from a bad car accident in 2004, along with 2 screws in my L

ankle

>from reconstruction after same accident.

>

> I don't have complete confidence in my doctor (orthopaedic surgeon) (and his

>PA) both do not seem to really have an interest in my case.

>

>

> First: did a cortisone shot--which caused me immense pain and swelling for

days

>and made my knee worse.

>

> Second: did PT which has been unsuccessful.

>

> Knee keeps getting worse and I am in the middle of training for an upcoming

>hiking challenge ~35 miles on 6/18, so I thought what-the-hell I will start

>these injections because the knee is getting worse so how much could it screw

me

>up. (Mind you I've been hiking 20 miles each weekend for the past two months

and

>working out during the week, pushing through the pain.) After my last hike,

knee

>was so swollen I could have sworn I tore my medial menisus!

>

>

> Dr. said I didn't tear meniscus based on a 5 second physical exam. Ha!

>

> Last Thursday (5/26) got my first injection (of 5) of Supartz. For two days

the

>knee was swollen and hurting. Felt like it was tight and like the whole joint

>was 'off track'. Dr. said I could hike 48 hours after my injection. Went on an

>18 mile training hike on Sunday...did decent...'not the same knee' though,

>barely finished. Knee is in a lot of pain and still swollen. (Can anyone tell

me

>their experience with Supartz?? Worth continuing?)

>

> Really planning on doing my hiking challenge, but the knee is nearly making it

>impossible to do normal daily things, let alone a hiking marathon. Any

>suggestions on how to get my knee through this? Should I be doing it?

>

> I am looking to seek out a second opinion from another Dr. Hoping to get into

>see someone within a couple weeks. Any specific things I should be asking?

>

> So I guess my question for everyone is...what can I do for treatment? I am 24

>and live an active lifestyle, I hope for a treatment that will allow for full

>recovery to maintain my extreme sports lifestyle! I have read about Lateral

>Releases, arthroscopic surgeries to remove damaged cartilage...etc and they all

>sound too invasive, little guarantee that it will actually work and long

>recovery times.

>

>

> What is scaring me more is that the L knee is starting the slight 'click' that

>the R knee started as...

>

>

>

> Any and all opinions/advice would be appreciated. (Sorry this is

>semi-brief...it's a long story and just wanted to hit the highlights!)

>

[Guest guest]

Thank you Zaz and Lawrence for the words of encouragement.

I am located in the Pittsburgh area, so if you know any CP knowledgeable

physicians please share!

I've done the strengthening exercises for quads, hips, glutes, you name it and

nothing has helped. I was given a brace to wear that would push the patella

medially to put it in alignment--but as most of you probably know, if you're

active, braces just don't stay in place correctly to continuously keep the

patella in place. I was also instructed in the ways of taping the patella.

Problem is when I workout, I sweat way too much and the tape never stays!

My insurance will no longer pay for PT...I've went over my # of visits

allotment. So now doing the workouts on my own.

So like I said in my first post, I received my first Supartz injection. It's now

been 6 days from the injection, and I have to say once the swelling (and the

swelling that I induced from an 20 miles hike this weekend!) went down--it is

starting to feel better--not miracle better, but at least not swollen and in

constant pain. I get my second injection tomorrow morning. I have heard that the

2nd injection is the most painful/debilitating one...so I am a little worried.

Any Supartz stories??

I have a 17 mile hike on Saturday, that I would really like to complete. So

here's to hoping I'm capable!

I plan to rest after my hiking challenge. It's the one thing I've been wanting

to do this year and have trained (through the pain) for and wish to complete.

After I'm finished, I'm resting!

Miranda

________________________________

From: Lawrence Terbell <lterbell@...>

chondromalacia treatment

Sent: Wed, June 1, 2011 12:59:00 AM

Subject: Re: Re: Diagnosed with CP, very active

lifestyle, no treatment working...What to do?

I agree with alot of what Zaz has to say. My knee problems were small at

first but slowly getting worse over time. Rest was not the answer for me because

I would try to become active again after resting for a while, but the rest

made my knee weaker not stronger.

I tried leg strengthening exercises, but that overstressed my knee.

My knee did not improve until I did an exercise program. After reading Doug

Kelsey's blog, I adopted a program of exercises that were below the load

tolerance of my knee. I tried to avoid activities that stressed my knee too

much. At first, this meant no running, jumping, walking my bike up hills,

avoiding stairs. etc. I think I became a little paraniod about this, but

eventually I was able to sense the load tolerance of my knee by the feedback it

would give me. I began to realize that healing is an up-and-down thing, not a

linear thing and I had to rest at certain times.

It took quite a while for me to notice improvement because as Doug says,

cartilage heals very slowly. Eventually my knee joint became stronger, then I

could focus more on strengthening my quads, hips, and glutes. My PT says this is

important to have a properly functioning knee. Slowly, I could add activities

such as running, biking up hills, hiking, etc.

I also agree with Zaz that finding a great physical therapist is important.

Good luck,

Larry

________________________________

From: zazerh <zaz@...>

chondromalacia treatment

Sent: Wed, June 1, 2011 12:54:50 AM

Subject: Re: Diagnosed with CP, very active

lifestyle, no treatment working...What to do?

I know it's not what you want to hear, but as someone who has been through

something like this, the first thing you should do is commit to and accept that

you'll have to dial your activity WAY down for awhile and slowly build back up

again (bad doctors will say forever, but that is short-sighted). In my

experience anything that causes more than minimal pain and swelling should be

avoided, although sometimes you don't know until the next day. I play soccer, so

I know how much not being active can really suck. I've also pushed myself and

ended up regretting it and/or setting myself back even farther and not being

able to walk or sit is a really BAD position to be in, especially if you need to

work.

A number of people in this group know of great doctors, depending on where you

live. Finding one you trust is pretty key, as well as a really excellent

physical therapist, and not all of them are.

Try reading 's book:

http://www.amazon.com/Saving-My-Knees-Doctors-ebook/dp/B004JHYTEI

It mirrors so many of our own stories and might save you some heartache and get

you on the path to healing.

Good luck,

Zaz

>

> Thought I'd come and ask the 'like-kneed' folks for some advice.

>

> I am a marathon, endurance hiker (and martial arts dabbler) and have been

>diagnosed with Chondromalacia Patella.

>

>

> Started as a slight clicking in my R knee for a couple years. Severely has

gone

>

>downhill and become increasingly worse and very painful, impacting my daily

life

>

>for the past 8 months. I have about every single 'cause' of CP--tremendous Q

>angle and loss of arches in feet--to name the big ones. Have various back and

>neck injuries from a bad car accident in 2004, along with 2 screws in my L

ankle

>

>from reconstruction after same accident.

>

> I don't have complete confidence in my doctor (orthopaedic surgeon) (and his

>PA) both do not seem to really have an interest in my case.

>

>

> First: did a cortisone shot--which caused me immense pain and swelling for

days

>

>and made my knee worse.

>

> Second: did PT which has been unsuccessful.

>

> Knee keeps getting worse and I am in the middle of training for an upcoming

>hiking challenge ~35 miles on 6/18, so I thought what-the-hell I will start

>these injections because the knee is getting worse so how much could it screw

me

>

>up. (Mind you I've been hiking 20 miles each weekend for the past two months

and

>

>working out during the week, pushing through the pain.) After my last hike,

knee

>

>was so swollen I could have sworn I tore my medial menisus!

>

>

> Dr. said I didn't tear meniscus based on a 5 second physical exam. Ha!

>

> Last Thursday (5/26) got my first injection (of 5) of Supartz. For two days

the

>

>knee was swollen and hurting. Felt like it was tight and like the whole joint

>was 'off track'. Dr. said I could hike 48 hours after my injection. Went on an

>18 mile training hike on Sunday...did decent...'not the same knee' though,

>barely finished. Knee is in a lot of pain and still swollen. (Can anyone tell

me

>

>their experience with Supartz?? Worth continuing?)

>

> Really planning on doing my hiking challenge, but the knee is nearly making it

>impossible to do normal daily things, let alone a hiking marathon. Any

>suggestions on how to get my knee through this? Should I be doing it?

>

> I am looking to seek out a second opinion from another Dr. Hoping to get into

>see someone within a couple weeks. Any specific things I should be asking?

>

> So I guess my question for everyone is...what can I do for treatment? I am 24

>and live an active lifestyle, I hope for a treatment that will allow for full

>recovery to maintain my extreme sports lifestyle! I have read about Lateral

>Releases, arthroscopic surgeries to remove damaged cartilage...etc and they all

>sound too invasive, little guarantee that it will actually work and long

>recovery times.

>

>

> What is scaring me more is that the L knee is starting the slight 'click' that

>the R knee started as...

>

>

>

> Any and all opinions/advice would be appreciated. (Sorry this is

>semi-brief...it's a long story and just wanted to hit the highlights!)

>

[Guest guest]

Hi Miranda,

After a year and a half of dealing with this, this is the advice I have to

offer.

Find a good PT or Chiropractor, or some other doctor who will examine your

entire body and tailor healing practices to your specific needs.

I went to two orthopedic surgeons (who only gave shots, directed to PTs or

suggested surgery that *might* work), and two PTs (who continued to do weight

bearing exercises on my damaged joint...not wise) with no success.

I finally found a Sports Medicine Chiropractor

(http://www.chirosportspecialists.com/about-us/dr-troy-van-biezen/) who does ART

(Active Release Therapy) in addition to exercises tailored to my issues, stem,

ultrasound and icing. He also sent me a guy to get CUSTOM (not the sent off kind

that my Ortho Dr. did and didn't help) orthotics since my feet were causing most

of the issue. You can look up ART doctors on the ART website.

If you have swelling, you should ice every day. Eventually you will see it go

down.

The problem with braces, surgery and shots is that they don't correct the way

your body has adapted to create the issues in the first place.

I would advise not going on that hike. My ortho told me I could go skiing with a

brace if I did greens and blues only and after I returned (didn't feel pain

while I was skiing for a week) I literally could not sit or stand without

intense pain. It set me back a lot.

Hope that helps!

Abby

> >

> > Thought I'd come and ask the 'like-kneed' folks for some advice.

> >

> > I am a marathon, endurance hiker (and martial arts dabbler) and have been

> >diagnosed with Chondromalacia Patella.

> >

> >

> > Started as a slight clicking in my R knee for a couple years. Severely has

gone

> >

> >downhill and become increasingly worse and very painful, impacting my daily

life

> >

> >for the past 8 months. I have about every single 'cause' of CP--tremendous Q

> >angle and loss of arches in feet--to name the big ones. Have various back and

> >neck injuries from a bad car accident in 2004, along with 2 screws in my L

ankle

> >

> >from reconstruction after same accident.

> >

> > I don't have complete confidence in my doctor (orthopaedic surgeon) (and his

> >PA) both do not seem to really have an interest in my case.

> >

> >

> > First: did a cortisone shot--which caused me immense pain and swelling for

days

> >

> >and made my knee worse.

> >

> > Second: did PT which has been unsuccessful.

> >

> > Knee keeps getting worse and I am in the middle of training for an upcoming

> >hiking challenge ~35 miles on 6/18, so I thought what-the-hell I will start

> >these injections because the knee is getting worse so how much could it screw

me

> >

> >up. (Mind you I've been hiking 20 miles each weekend for the past two months

and

> >

> >working out during the week, pushing through the pain.) After my last hike,

knee

> >

> >was so swollen I could have sworn I tore my medial menisus!

> >

> >

> > Dr. said I didn't tear meniscus based on a 5 second physical exam. Ha!

> >

> > Last Thursday (5/26) got my first injection (of 5) of Supartz. For two days

the

> >

> >knee was swollen and hurting. Felt like it was tight and like the whole joint

> >was 'off track'. Dr. said I could hike 48 hours after my injection. Went on

an

> >18 mile training hike on Sunday...did decent...'not the same knee' though,

> >barely finished. Knee is in a lot of pain and still swollen. (Can anyone tell

me

> >

> >their experience with Supartz?? Worth continuing?)

> >

> > Really planning on doing my hiking challenge, but the knee is nearly making

it

>

> >impossible to do normal daily things, let alone a hiking marathon. Any

> >suggestions on how to get my knee through this? Should I be doing it?

> >

> > I am looking to seek out a second opinion from another Dr. Hoping to get

into

> >see someone within a couple weeks. Any specific things I should be asking?

> >

> > So I guess my question for everyone is...what can I do for treatment? I am

24

> >and live an active lifestyle, I hope for a treatment that will allow for full

> >recovery to maintain my extreme sports lifestyle! I have read about Lateral

> >Releases, arthroscopic surgeries to remove damaged cartilage...etc and they

all

>

> >sound too invasive, little guarantee that it will actually work and long

> >recovery times.

> >

> >

> > What is scaring me more is that the L knee is starting the slight 'click'

that

>

> >the R knee started as...

> >

> >

> >

> > Any and all opinions/advice would be appreciated. (Sorry this is

> >semi-brief...it's a long story and just wanted to hit the highlights!)

> >

>

>

[Guest guest]

Miranda, I feel your pain -- both figuratively and literally! I would caution

you on the " I'm doing the hike at all costs! " mindset. Is it worth having a

total knee replacement for? Would you be willing to forego the hike if you knew

it would avail you the opportunity to rehab the knee without such drastic

measures?

I didn't have Supartz injections, but did have a series of 5 Hyalgan injections.

Like you, I kept training thru them, because I was preparing for a 100K race in

May, my goal race for 2011.

Well, I missed my race, as well as a 50 miler and a marathon, and am now unable

to run for even 1 mile. I was so focused on my race, and so willing to numb the

pain with Celebrex, ice, Advil, etc., I really messed myself up. I now have

Grade IV chondromalacia with full thickness cartilage loss.

I have not yet figured out how to dig myself out of this hole, but I am learning

to listen to my body, and am trying to learn to love other activities as much as

I love running. I hope we're both back to doing the things we love most --

without pain -- soon!

Lori

[Guest guest]

Definitely agree that the hike has got to go. I went through quite a depression

when I had to put my bike and walking/running shoes away, but it is the only

way. Continuing to abuse the joint is going to hurt it worse and worse. Sorry

to deliver the sad news, but in the long run, it will hopefully help save your

knee!

Jenni

________________________________

From: zazerh <zaz@...>

chondromalacia treatment

Sent: Tue, May 31, 2011 12:54:50 PM

Subject: Re: Diagnosed with CP, very active

lifestyle, no treatment working...What to do?

I know it's not what you want to hear, but as someone who has been through

something like this, the first thing you should do is commit to and accept that

you'll have to dial your activity WAY down for awhile and slowly build back up

again (bad doctors will say forever, but that is short-sighted). In my

experience anything that causes more than minimal pain and swelling should be

avoided, although sometimes you don't know until the next day. I play soccer,

so I know how much not being active can really suck. I've also pushed myself

and ended up regretting it and/or setting myself back even farther and not being

able to walk or sit is a really BAD position to be in, especially if you need to

work.

A number of people in this group know of great doctors, depending on where you

live. Finding one you trust is pretty key, as well as a really excellent

physical therapist, and not all of them are.

Try reading 's book:

http://www.amazon.com/Saving-My-Knees-Doctors-ebook/dp/B004JHYTEI

It mirrors so many of our own stories and might save you some heartache and get

you on the path to healing.

Good luck,

Zaz

>

> Thought I'd come and ask the 'like-kneed' folks for some advice.

>

> I am a marathon, endurance hiker (and martial arts dabbler) and have been

>diagnosed with Chondromalacia Patella.

>

>

> Started as a slight clicking in my R knee for a couple years. Severely has

gone

>downhill and become increasingly worse and very painful, impacting my daily

life

>for the past 8 months. I have about every single 'cause' of CP--tremendous Q

>angle and loss of arches in feet--to name the big ones. Have various back and

>neck injuries from a bad car accident in 2004, along with 2 screws in my L

ankle

>from reconstruction after same accident.

>

> I don't have complete confidence in my doctor (orthopaedic surgeon) (and his

>PA) both do not seem to really have an interest in my case.

>

>

> First: did a cortisone shot--which caused me immense pain and swelling for

days

>and made my knee worse.

>

> Second: did PT which has been unsuccessful.

>

> Knee keeps getting worse and I am in the middle of training for an upcoming

>hiking challenge ~35 miles on 6/18, so I thought what-the-hell I will start

>these injections because the knee is getting worse so how much could it screw

me

>up. (Mind you I've been hiking 20 miles each weekend for the past two months

and

>working out during the week, pushing through the pain.) After my last hike,

knee

>was so swollen I could have sworn I tore my medial menisus!

>

>

> Dr. said I didn't tear meniscus based on a 5 second physical exam. Ha!

>

> Last Thursday (5/26) got my first injection (of 5) of Supartz. For two days

the

>knee was swollen and hurting. Felt like it was tight and like the whole joint

>was 'off track'. Dr. said I could hike 48 hours after my injection. Went on an

>18 mile training hike on Sunday...did decent...'not the same knee' though,

>barely finished. Knee is in a lot of pain and still swollen. (Can anyone tell

>me their experience with Supartz?? Worth continuing?)

>

> Really planning on doing my hiking challenge, but the knee is nearly making it

>impossible to do normal daily things, let alone a hiking marathon. Any

>suggestions on how to get my knee through this? Should I be doing it?

>

> I am looking to seek out a second opinion from another Dr. Hoping to get into

>see someone within a couple weeks. Any specific things I should be asking?

>

> So I guess my question for everyone is...what can I do for treatment? I am 24

>and live an active lifestyle, I hope for a treatment that will allow for full

>recovery to maintain my extreme sports lifestyle! I have read about Lateral

>Releases, arthroscopic surgeries to remove damaged cartilage...etc and they all

>sound too invasive, little guarantee that it will actually work and long

>recovery times.

>

>

> What is scaring me more is that the L knee is starting the slight 'click' that

>the R knee started as...

>

>

>

> Any and all opinions/advice would be appreciated. (Sorry this is

>semi-brief...it's a long story and just wanted to hit the highlights!)

>