Is the community alive?

[Guest guest]

Hi,

I am a newly diagnozed chondromalacist with constant kneepain since 6 months

back. I am desperate to find others in my situation and to find a cure. Thie is

only a short message to find out whether anyone is still active on this

community.

Thank you

Lotta

[Guest guest]

We're here. Let us know how we can help!

Doug

>

> Hi,

> I am a newly diagnozed chondromalacist with constant kneepain since 6 months

back. I am desperate to find others in my situation and to find a cure. Thie is

only a short message to find out whether anyone is still active on this

community.

> Thank you

> Lotta

>

[Guest guest]

Hi Lotta - I'll just chime in and say good luck and keep trying hard to find

relief - do the things that don't aggravate your situation, and try to focus on

doing only those things that you can do without damaging your knee. My knee

pain started in 1981 and after a few scopes and a salvage procedure, I finally

had a partial replacement, which I had last February.  I'm still in recovery

mode and feeling good about the whole thing, in spite of the big pain and

discomfort that is guaranteed with any knee replacement surgery.  As a veteran

of this syndrome, I can honestly say that the patellar replacement was

definitely my last resort, but in reality, the only procedure that has truly

addressed the issue head on.  I know there are many who will totally disagree

with me on that point and I will certainly tell you that I wouldn't even think

of drastic measures after only 6 months diagnosed.  So take it slow and do not

give up!  Keep your quads strong

and keep the motion as stress free as possible. I cycled for 20 years after

being diagnosed - maybe that will get you by for a while too. Good luck.

From: dougfromct2002 <dougfromct2002@...>

Subject: Re: Is the community alive?

chondromalacia treatment

Date: Sunday, April 22, 2012, 8:25 PM

 

We're here. Let us know how we can help!

Doug

>

> Hi,

> I am a newly diagnozed chondromalacist with constant kneepain since 6 months

back. I am desperate to find others in my situation and to find a cure. Thie is

only a short message to find out whether anyone is still active on this

community.

> Thank you

> Lotta

>

[Guest guest]

Dear and Dough,

Thank you for your replies. It certainly seems that the community is no longer

active.

Let me just tell you about my situation and my current state of mind. After

doing my MRI, one sportsmed doctor and an orthopedist have both basically said

that it is not the worst form of CP they had seen and that it should not keep me

from doing sports, however no long distance running. That sounds fine, but it is

enough for me to take a walk, do 15 min on the eliptical or swim with my legs

kicking for a half an hour for the rest of the day and the day after to be

unbearably painful, keeping me from concentrating on my studies. I am so afraid

of deteriorating my condition.

Secondly, I have not grasped that I am to live with this for the rest of my

life. If mine is actually not the worst form of CP, can there not be anything I

can do to live normally and become myself again? I am not asking to run again

ever, I just want to be able to do some swimming, biking and be pain free. " Let

pain be your guide " is basically what I have been told, which I feel would

sentence me to bed for the rest of my life. PT does not seem to help really, but

I keep doing it, since I am sure it is good to keep strong. But I do not know

what exersizes I should do to help my particular condition - I know all are

different.

I am so desperate right now to find a way out of this, I have not come to grasp

the fact that I am to live with this forever. I cannot believe, with so many

people suffering from this, that this so called advanced medical technology of

ours cannot help. The only peoplle who seem to have been helped by anything -

and I have probably read a large part of all the CP related fora out there -

seem to be those in real need of surgery anad who have done that. I know that

surgery would most likely worsen my condition and I am not considering that.

SO one thing I am hoping from this community is to find people with my kind of

story who have gotten better. With chondromalacia, but not as bad as in need of

surgery. I am still looking for a cure, while deep inside knowing I might just

be in a state of denial.

Thank you for including me in your community,

Best,

Lotta

p.s: I found some good comments on the kneeguru-blog about CP by Dr. Grelsamer

at Mt. Sinai Hospital in NY and scheduled an appointment with him. If anyone has

seen him, please let me know of your experience.

> >

> > Hi,

> > I am a newly diagnozed chondromalacist with constant kneepain since 6 months

back. I am desperate to find others in my situation and to find a cure. Thie is

only a short message to find out whether anyone is still active on this

community.

> > Thank you

> > Lotta

> >

>

>

>

>

>

>

>

>

>

[Guest guest]

Hello,

I've had the diagnosis of Chondromalacia since high school, so the late 80's/

early 90's. If its in the early stages, your best bets are: keep your weight

down (know I have no idea of your weight, so I'm not implying anything!!), get

your quads as strong as possible, and know exercises like running can very well

hurt your knee (hence, CP sometimes referred to as runner's knee). I had some

success with the taping they did in the 90's, as well as some braces.

There are some surgeries that can be done if its Progressing to a point that you

are simply in too much pain. The lateral release isn't too hard to recover from

(in my opinion). That didn't work for me so the next year I had a tibial

turbicle relaginment surgery. I had 5 surgeries on my knee and was told in

college that I'd need a replacement by age 30--- I just got that replacement

but at age 39! So, once they get it figured out, they may very well be able to

stall the progression/ surgery.

Some folks have had good results with cortisone and also with Syncisc injections

(neither worked for me but it made sense to try it). Some clinics are doing

other alternative treatments.

The problem most of us find is that SO many docs do not understand the disease.

So, being told its not that bad or that you will have to live with it are

unfortunately uncommon things most of us have heard. If you don't believe the

statement or treatment the doc is giving you, then by all means advocate for

yourself and get a second opinion. I'm in Rochester, MN and we have the world

famous Mayo Clinic. However, the sports med doc told me exactly those two

things: it's not that bad and live with it-- though I was in massive pain. I

didn't buy that and sought a second opinion at Mayo in sports med. THe MD said I

needed to replace my knee (patellafemoral)if I was ready, and I asked when she

could schedule it!

Do know you don't have to live with it, nor should you have to. I'm happy to

help answer any questions too!

Sue

chondromalacia treatment

From: no_reply

Date: Sat, 12 May 2012 23:15:27 +0000

Subject: Re: Is the community alive?

Dear and Dough,

Thank you for your replies. It certainly seems that the community is no longer

active.

Let me just tell you about my situation and my current state of mind. After

doing my MRI, one sportsmed doctor and an orthopedist have both basically said

that it is not the worst form of CP they had seen and that it should not keep me

from doing sports, however no long distance running. That sounds fine, but it is

enough for me to take a walk, do 15 min on the eliptical or swim with my legs

kicking for a half an hour for the rest of the day and the day after to be

unbearably painful, keeping me from concentrating on my studies. I am so afraid

of deteriorating my condition.

Secondly, I have not grasped that I am to live with this for the rest of my

life. If mine is actually not the worst form of CP, can there not be anything I

can do to live normally and become myself again? I am not asking to run again

ever, I just want to be able to do some swimming, biking and be pain free. " Let

pain be your guide " is basically what I have been told, which I feel would

sentence me to bed for the rest of my life. PT does not seem to help really, but

I keep doing it, since I am sure it is good to keep strong. But I do not know

what exersizes I should do to help my particular condition - I know all are

different.

I am so desperate right now to find a way out of this, I have not come to grasp

the fact that I am to live with this forever. I cannot believe, with so many

people suffering from this, that this so called advanced medical technology of

ours cannot help. The only peoplle who seem to have been helped by anything -

and I have probably read a large part of all the CP related fora out there -

seem to be those in real need of surgery anad who have done that. I know that

surgery would most likely worsen my condition and I am not considering that.

SO one thing I am hoping from this community is to find people with my kind of

story who have gotten better. With chondromalacia, but not as bad as in need of

surgery. I am still looking for a cure, while deep inside knowing I might just

be in a state of denial.

Thank you for including me in your community,

Best,

Lotta

p.s: I found some good comments on the kneeguru-blog about CP by Dr. Grelsamer

at Mt. Sinai Hospital in NY and scheduled an appointment with him. If anyone has

seen him, please let me know of your experience.

> >

> > Hi,

> > I am a newly diagnozed chondromalacist with constant kneepain since 6 months

back. I am desperate to find others in my situation and to find a cure. Thie is

only a short message to find out whether anyone is still active on this

community.

> > Thank you

> > Lotta

> >

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Lotta:  I hear you loud and clear.  I never, ever thought that I would have

to deal with CP.  I was training for the NYC marathon in 1981 when it showed up

under my left kneecap.  That was the last year I ever ran, but I did get 20

years of cycling before the CP sidelined me from the road.  It is really hard

to grasp but that has been my life and the only option that was left to me was

the pattelo femoral replacement procedure, which I had in February.  Its not

going great right now, still sore, still feels foreign and uncomfortable, and I

am not even sure my body is reacting to these foreign pieces of hightech metal

and plastic in the correct fashion.  But I am told that the healing of sawed

bones takes a very long time before the real results of the surgery are felt. 

I am hopeful, thats all I can say ...I am hopeful that someday soon, my knee

will feel strong, and that I will at least get back on my bike for easy

riding.  I know that I

will never run again, and frankly, since running ruined my knees in the first

place, I have such a resentment against it that I dont care.  I think my

friends that still run in the Boston marathon are idiots and are asking for big

trouble -they just dont know it yet.  Hang in there. Good luck.

From: lotta_moberg <no_reply >

Subject: Re: Is the community alive?

chondromalacia treatment

Date: Saturday, May 12, 2012, 7:15 PM

 

Dear and Dough,

Thank you for your replies. It certainly seems that the community is no longer

active.

Let me just tell you about my situation and my current state of mind. After

doing my MRI, one sportsmed doctor and an orthopedist have both basically said

that it is not the worst form of CP they had seen and that it should not keep me

from doing sports, however no long distance running. That sounds fine, but it is

enough for me to take a walk, do 15 min on the eliptical or swim with my legs

kicking for a half an hour for the rest of the day and the day after to be

unbearably painful, keeping me from concentrating on my studies. I am so afraid

of deteriorating my condition.

Secondly, I have not grasped that I am to live with this for the rest of my

life. If mine is actually not the worst form of CP, can there not be anything I

can do to live normally and become myself again? I am not asking to run again

ever, I just want to be able to do some swimming, biking and be pain free. " Let

pain be your guide " is basically what I have been told, which I feel would

sentence me to bed for the rest of my life. PT does not seem to help really, but

I keep doing it, since I am sure it is good to keep strong. But I do not know

what exersizes I should do to help my particular condition - I know all are

different.

I am so desperate right now to find a way out of this, I have not come to grasp

the fact that I am to live with this forever. I cannot believe, with so many

people suffering from this, that this so called advanced medical technology of

ours cannot help. The only peoplle who seem to have been helped by anything -

and I have probably read a large part of all the CP related fora out there -

seem to be those in real need of surgery anad who have done that. I know that

surgery would most likely worsen my condition and I am not considering that.

SO one thing I am hoping from this community is to find people with my kind of

story who have gotten better. With chondromalacia, but not as bad as in need of

surgery. I am still looking for a cure, while deep inside knowing I might just

be in a state of denial.

Thank you for including me in your community,

Best,

Lotta

p.s: I found some good comments on the kneeguru-blog about CP by Dr. Grelsamer

at Mt. Sinai Hospital in NY and scheduled an appointment with him. If anyone has

seen him, please let me know of your experience.

> >

> > Hi,

> > I am a newly diagnozed chondromalacist with constant kneepain since 6 months

back. I am desperate to find others in my situation and to find a cure. Thie is

only a short message to find out whether anyone is still active on this

community.

> > Thank you

> > Lotta

> >

>

>

>

>

>

>

>

>

>

[Guest guest]

I am the same, couldn't believe that I was going to have to face this and that

my active life could be over. But it didn't turn out that way for me. I have

been lucky and after a couple of years of learning my new rules, have become

just as active as I had been before and now only have minor pain on some days. I

no longer run other than short trail runs with a cross country ski team I coach.

I still have trouble on the cycle on a long pull with a steady force like a head

wind. But I can cross country ski or roller ski with little problem, and cycling

on hills or doing sprints with easy spinning between is ok too for me. I will

trail hike, and do strength workouts, minus squats. Yoga is good. Paddle water

sports are a great idea to stay active. 

During the worst of it when I was first diagnosed after developing pain on the

bike, I could barely get on and off the toilette. I gained weight and drank a

lot more often. I had to learn that for me, no pain no gain is a recipe for lots

of pain. I'd find something I could do and then add to that with pretty regular

setbacks. I was really fortunate to be a cross country skier because the lack of

pounding, and in skate skiing the different way the knee is stressed, I was able

to learn some pain free activities pretty quickly. 

So for me no surgery, and frankly at the time, the options offered up weren't

too great. There have been some here that have gotten some relief after having

tried many many things before. 

Philip - http://panmanphil.wordpress.com

________________________________

From: PETER FORD <pombou51562000@...>

chondromalacia treatment

Sent: Tuesday, May 15, 2012 1:48 AM

Subject: Re: Re: Is the community alive?

Hi Lotta:  I hear you loud and clear.  I never, ever thought that I would have

to deal with CP.  I was training for the NYC marathon in 1981 when it showed up

under my left kneecap.  That was the last year I ever ran, but I did get 20

years of cycling before the CP sidelined me from the road.  It is really hard to

grasp but that has been my life and the only option that was left to me was the

pattelo femoral replacement procedure, which I had in February.  Its not going

great right now, still sore, still feels foreign and uncomfortable, and I am not

even sure my body is reacting to these foreign pieces of hightech metal and

plastic in the correct fashion.  But I am told that the healing of sawed bones

takes a very long time before the real results of the surgery are felt.  I am

hopeful, thats all I can say ...I am hopeful that someday soon, my knee will

feel strong, and that I will at least get back on my bike for easy riding.  I

know that I

will never run again, and frankly, since running ruined my knees in the first

place, I have such a resentment against it that I dont care.  I think my friends

that still run in the Boston marathon are idiots and are asking for big trouble

-they just dont know it yet.  Hang in there. Good luck.

From: lotta_moberg <no_reply >

Subject: Re: Is the community alive?

chondromalacia treatment

Date: Saturday, May 12, 2012, 7:15 PM

 

Dear and Dough,

Thank you for your replies. It certainly seems that the community is no longer

active.

Let me just tell you about my situation and my current state of mind. After

doing my MRI, one sportsmed doctor and an orthopedist have both basically said

that it is not the worst form of CP they had seen and that it should not keep me

from doing sports, however no long distance running. That sounds fine, but it is

enough for me to take a walk, do 15 min on the eliptical or swim with my legs

kicking for a half an hour for the rest of the day and the day after to be

unbearably painful, keeping me from concentrating on my studies. I am so afraid

of deteriorating my condition.

Secondly, I have not grasped that I am to live with this for the rest of my

life. If mine is actually not the worst form of CP, can there not be anything I

can do to live normally and become myself again? I am not asking to run again

ever, I just want to be able to do some swimming, biking and be pain free. " Let

pain be your guide " is basically what I have been told, which I feel would

sentence me to bed for the rest of my life. PT does not seem to help really, but

I keep doing it, since I am sure it is good to keep strong. But I do not know

what exersizes I should do to help my particular condition - I know all are

different.

I am so desperate right now to find a way out of this, I have not come to grasp

the fact that I am to live with this forever. I cannot believe, with so many

people suffering from this, that this so called advanced medical technology of

ours cannot help. The only peoplle who seem to have been helped by anything -

and I have probably read a large part of all the CP related fora out there -

seem to be those in real need of surgery anad who have done that. I know that

surgery would most likely worsen my condition and I am not considering that.

SO one thing I am hoping from this community is to find people with my kind of

story who have gotten better. With chondromalacia, but not as bad as in need of

surgery. I am still looking for a cure, while deep inside knowing I might just

be in a state of denial.

Thank you for including me in your community,

Best,

Lotta

p.s: I found some good comments on the kneeguru-blog about CP by Dr. Grelsamer

at Mt. Sinai Hospital in NY and scheduled an appointment with him. If anyone has

seen him, please let me know of your experience.

> >

> > Hi,

> > I am a newly diagnozed chondromalacist with constant kneepain since 6 months

back. I am desperate to find others in my situation and to find a cure. Thie is

only a short message to find out whether anyone is still active on this

community.

> > Thank you

> > Lotta

> >

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi,

Thank you so much for your responses. I will be meeting with a Dr. Grelsamer in

Mt. Sinai Hospital, NY, next week. If anybody has experience with him, please

let me know. I understand that the first thing to do is to get a good view of my

damages.

A couple of questions that some of you might have some insights in:

Arthroscopy: I am about to schedule a time for that, just to look into the knee.

That is not dangerous in any way, is it, just the checking that there is nothing

in there that the MRI missed? What should you press the doctor to look for, so

that he does not just stick the camera in there, says all is fine and you can go

home now, live with it, etc.

I do not know about your pain experiences, but I feel it is not the cartilage

itself that hurts. Mostly, it is the VMO, and the back of my knee, making any

bending of the knee while standing and walking painful. So either the cartilage

spreads its pain around, or it is actually the soft tissue around there that are

screwed up, so that if that can be fixed, the cartilage does not have to be

repaired for the pain to go away.

Finally, my hope now lies basically in all I read about prolotherapy. Dough -

please if you read this, you have written that you had success with this, please

tell me your story.

Thank you everybody. Happy for any input.

Best,

Lotta

> > >

> > > Hi,

> > > I am a newly diagnozed chondromalacist with constant kneepain since 6

months back. I am desperate to find others in my situation and to find a cure.

Thie is only a short message to find out whether anyone is still active on this

community.

> > > Thank you

> > > Lotta

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Lotta, I feel for you. But I've been living with this my entire life. I was

first diagnosed at 10 years old. That's when I had my first lateral

release, well before arthroscopy. Since then I've had 6 procedures on each

knee. My 13th procedure was a patellofemoral replacement on my right knee

in November. I can tell you from experience, it is not the cartilage itself

that hurts. The problem is that your cartilage is wearing away. The pain

you are experiencing is the knee cap bone rubbing against bone. I also know

from experience, that this can cause referred pain, meaning you experience

pain away from the site of the kneecap.

My guess is that if you have the arthroscopy done, they will clean up and

worn cartilage they find. When you see pictures of it, the worn cartilage

looks a bit like shredded crab meat. Some of those loose pieces can create

pain in knees as they move around. The standard protocol is to start with

the least invasive treatments and then progress as needed. I progressed

through every option . My fulkerson osteotomy and microfracture did the

trick for 10 years. Eventually there was no cartilage behind the knee and

the replacement was needed.

There is no magic bullet and each and every one of us in this group have

had our own experiences. My patellofemoral replacement hasn't relieved all

of my pain, but it was the only option left to me. Surprisingly, my left

knee looks worse on film than my right, but the pain hasn't gotten to be

unbearable yet.

I am only 43 years old and have a lot more living to do. I walk a great

deal and try to stay active. Given that I've been living with

chondromalacia for 33 years, my physical activities have always been

limited. I'm sure it's a more difficult transition for someone who've been

running for year.

On Tue, May 15, 2012 at 7:34 AM, lotta_moberg <no_reply >wrote:

> **

>

>

> Hi,

> Thank you so much for your responses. I will be meeting with a Dr.

> Grelsamer in Mt. Sinai Hospital, NY, next week. If anybody has experience

> with him, please let me know. I understand that the first thing to do is to

> get a good view of my damages.

> A couple of questions that some of you might have some insights in:

> Arthroscopy: I am about to schedule a time for that, just to look into the

> knee. That is not dangerous in any way, is it, just the checking that there

> is nothing in there that the MRI missed? What should you press the doctor

> to look for, so that he does not just stick the camera in there, says all

> is fine and you can go home now, live with it, etc.

> I do not know about your pain experiences, but I feel it is not the

> cartilage itself that hurts. Mostly, it is the VMO, and the back of my

> knee, making any bending of the knee while standing and walking painful. So

> either the cartilage spreads its pain around, or it is actually the soft

> tissue around there that are screwed up, so that if that can be fixed, the

> cartilage does not have to be repaired for the pain to go away.

> Finally, my hope now lies basically in all I read about prolotherapy.

> Dough - please if you read this, you have written that you had success with

> this, please tell me your story.

>

> Thank you everybody. Happy for any input.

> Best,

> Lotta

>

>

> > > >

> > > > Hi,

> > > > I am a newly diagnozed chondromalacist with constant kneepain since

> 6 months back. I am desperate to find others in my situation and to find a

> cure. Thie is only a short message to find out whether anyone is still

> active on this community.

> > > > Thank you

> > > > Lotta

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >