hi, new member

[Guest guest]

Luckily, other than the initial week after my injury, I haven't had to take any

narcotics, personally I'm not really keen on them. Sometimes I have some nagging

aches so I take Tylenol, and that seems to do the trick. And icing really seems

to still help at this point. But, for now, I'm pretty pain free. What I do have

is lots of odd...movement? It feels like a combination of crackling/small

pops/tugging, and sometimes it feels like parts of my knee is shifting around.

I'm assuming what I am feeling is my kneecap shifting in and out of joint and

the rubbing against the bones. I do have that, to a lesser extent, in my right

knee too, so I am wondering if I should have an MRI done on that one. Other than

specific injuries to my knees, I rarely have pain in them (since I stopped

playing high impact sports), so I was so shocked when he said I had no

cartiledge left on that side of my patella. I imagine it must have been just as

shocking to have your knees give out one day with no warning. I probably was

heading for the same thing. Maybe that's why I had such a bad injury from such a

small thing - the whole joint is just weakened.

Can you recommend any sites or materials that I should read up on? I'm not

familiar with what the different stages are yet. Luckily, I do have a very good

relationship with my OS, he's actually helped many members of my family, so in a

way, I have actually grown up with him and he really satisfied my curiousity by

going through my MRI slide by slide to show me exactly what he was talking

about. I will probably make a follow up appt with him after I have done some

further research and can ask educated questions. The other thing that further

complicates matters is that my husband and I are trying to start a family, so

that limits any medication I can take, and I do realize that the added weight

can be a real problem. So, I'm nervous about that, but figure...well, I'll deal

with that when it comes.

I really appreciate your candor. It helps to know there is light at the end of

the tunnel.

________________________________

From: Tara Gandy-Sanford <try2livehealthy@...>

chondromalacia treatment

Sent: Mon, September 27, 2010 7:27:10 PM

Subject: Re: Hi, new member

,

The OS basically said I can do what ever I want except kneel, run or any contact

sports. Supposedly I can ski, bike ride, play sports. I am 4 months out of

surgery and he said it will be a year before I really know if the surgery is

successful. I am able to do stairs but it is still hard primarily because of my

other knee. But each week I see it is getting better with my new knee. I am not

back to work yet because I have been out for 7 years. I had stage 4 cp in both

knees. Out of the last 8 years I have been on crutches close to 4 of them. If I

wasn't on crutches I have to use a cane. My quality of life was very poor.  But

our hope is to be able to go back to work after the right knee is done in

December.

The doctor and I are battling about whether or not I will be able to run after

the right knee is done. He says no I say why not? So we will have to see who

wins next year. There is a debate among OS whether or not patients should be

able to run after partial or total knee replacements. Some say you should others

say no because it wears the joint out faster.

I just say do your research and know more than the dr. going in to anything.

That was my first mistake with my first OS but believe me it has never happened

again. My dr now is very innovative. He does a lot of research when it comes to

me because my case was so unusual. He has spoken to other OS all over the

country trying to figure out the best course of treatment.  I didn't have pain

or warning signs that my knees were going bad. They both gave out at the same

time out of the blue. The first surgeon didn't tell me I had cp. He didn't tell

me that cp was a form of osteoarthritis.  He didn't tell me that there was a 10

to 15% chance that what he did in surgery might not work. I feel into that 10 to

15% that it didn't work and I continued to deteriorate. I ended up going through

6 more operations trying to avoid pfr and still ended up needing it. Now I have

had 9 operations and lost years of my life I can't get back. I can't stress

enough to do your research. And what ever the OS tells you research it. Get

other opinions if you have to. I have built such a relationship with my OS and

his staff that I know he doesn't have with anyone else. That's very important in

your treatment also. Feel free to talk to me if you need too. I will do my best

to answer any questions I can. Also get a good pain management dr. If the PM Dr

wants to give you narcotics first then he is not good. The first course of

treatment should not be narcotics.

Tara

On Sep 27, 2010, at 9:50 AM, T wrote:

> Thanks, Tara...it really helps to know I'm not the only one to be going

through

>

> this at a young age. The more I research, the more I see that it's sadly

common

>

> in athletic girls. I'll have to do more research on PFR, but I have a feeling

> that is what my doc was referring to. So, after the surgery did your OS say it

> was ok to go back to athletic activities? How long was your recovery? Are you

> able to do stairs? Or sit for a work day?

>

> I know I will come to a time to need the surgery, but I also know that

>sometimes

>

> it's better to not forestall the inevitable. I probably have another year or

>two

>

> (based off my pain now) before it become intolerable. But, at least I still

>have

>

> a lot of stregnth in my leg. My dad needed partials in both knees a few years

> ago, and decided not to do it. He got to a point where he couldn't even get

out

>

> of a chair, let alone walk anywhere, so it progressed to where he needed two

> full replacements at the same time. It was brutal, but now he's happy to have

> done it. So, part of me is like I want nothing to do with this surgery, but

the

>

> other part of me is like, don't wait until you need even more drastic surgery

> and loose all your stregnth.

>

> I actually have a lot of problems with my joints, I have way too much collagen

> so it makes my joints hyper-mobile (hence my chronic subluxation). I had a

> problem with my right shoulder dislocating all the time, and the doc was like

> the surgery to fix this is horrible, wait until you have no other choice. I

> spent 5 years going to PT and in chronic pain. I mean, pain to the point of

> feeling like I was going to go crazy. It wasn't until I started loosing the

> ability to write from the nerve damage, that it became clear that I just

> couldn't wait any more. I had the surgery, and it was the most painful,

>horrible

>

> thing I have ever gone through. It took me over a year to recover back to

>almost

>

> normal. However, I have zero pain on most days, unless I've done something I

> shouldn't. I was able to ski again, and play lots of sports with some

> limitations (can't throw a ball, that position is BAD for me). And I actually

> wish I had done it sooner because I had wasted all that time being in pain and

> not having a life, when I could have been not like that. But, I also

understand

>

> in that you have to be mentally to a point where the pain you are going

through

>

> in recovery and post-op is well worth not having to go through what you were

> just feeling. So....I see a lot of people saying wait until you have no other

> option, but I'm wondering why that is. Is it that this is such a tough surgery

> to go through that you need to be mentally ready to go through it? Or that any

> surgery is something to be avoided? Or that many people have had bad

>experiences

>

> with their doc? Knowing what you know now, would you have opted for the PFR

> sooner?

>

> Thanks,

>

>

> ________________________________

> From: Tara Gandy-Sanford <try2livehealthy@...>

> chondromalacia treatment

> Sent: Mon, September 27, 2010 8:30:14 AM

> Subject: Re: Hi, new member

>

> ,

>

> I am 36 and just had a patella femoral replacement in my left knee in May. I

am

>

> going to have my right knee done in December. I had no choice. I had multiple

> surgeries done trying to avoid doing PFR because of my age and nothing worked

> well. My quality of life was so poor the last 7 years. I have had so many

>braces

>

> I can't even count. I have had cartilage transplants.

>

> I am not totally pain free but I am very close to being pain free in my left

> knee. I have not had this much relief in almost 8 years. Now I am hoping to

>have

>

> the same positive results in my right knee. So I can regain my life back.

> Although, it really hurts my right knee I am able to ride a bike again to help

> try and strengthen my legs. My legs are so weak.

>

> Wait on surgery as long as possible but just know when it's time you have to

do

>

> what you have to do. If you have any questions let me know.

>

> Tara

> On Sep 26, 2010, at 8:23 PM, T wrote:

>

> > Hi, everyone, I'm new to the group and this whole chondromalacia thing. I am

>37

>

> >

> > and just found out that I have chondromalacia. I have to admit I am pretty

> > stunned, so everything is in a real fog, and bit by bit more of what my doc

> >said

> >

> > is coming back to me. I have been really bummed out since I got the news. I

> >have

> >

> > always had knee problems my whole life, but I pretty much just dealt with

the

>

> > pain and have lead a fairly active lifestyle. I always played sports, which

>of

>

>

> > course added to the pain, but I loved to play soccer and basketball and I

> > wouldn't listen to people who told me to stop. Never really had a firm

> >diagnosis

> >

> > of why I was always hurting though. In 2003 I had arthroscopy to repair a

>tear

>

>

> > in my meniscus that would create a flap and after that I was pretty happy

>with

>

>

> > the results, although I still always had a touch of pain, especially if I

>would

>

> >

> > land on it while snowboarding or doing a lot of stairs or cleaning, etc. So,

> > about a month ago I....as you will find out I am very VERY klutzy!...I was

> > carrying some stuff in my arms and stepped on my cat (not seeing her of

> >course),

> >

> > and did something to my knee as I bobbled back and forth. Went to my knee

doc

>

> > (he's great btw) because I thought I tore the same meniscus again. I was in

>so

>

>

> > much pain he could barely examine me, and I was very swollen with lots of

>fluid

>

> >

> > so it was hard for him to give me a clear diagnosis at the time of what

>exactly

>

> >

> > I did to myself. Week of bed rest with limited movement and ice and

> > anti-inflamatories really did help, and I just went back for my follow up. I

>am

>

> >

> > still really tender right in the area of my patella, which he says is due to

> > tendonitis, flared up from the injury. He said I did have a small tear, but

> > nothing he would operate on, but then he showed my my MRI and said...but you

> > have chondromalasia, and then proceeds to show me my patella and cartledge,

>and

>

> >

> > even I could see right off the bat that something was really really wrong.

>The

>

>

> > right side of my cartiledge had almost completely worn away! He said that in

>a

>

>

> > few years I would need a partial knee replacement, but that I should wait

>until

>

> >

> > it got to the point where I couldn't walk 5 blocks or so without pain. He

> > prescribed me a brace which I need to order, and said no contact sports (my

>mom

>

> >

> > has a hip replacement and participates in kickboxing so this is not as

>bizarre

>

> >a

> >

> > comment as you might first think for my family - we're nuts), and once the

>knee

>

> >

> > has calmed down a little further gave me some exercises to do to pull the

> > patella into the right space so maybe I will gain a few years. I am just so

> >sad.

> >

> > My dad just had to have both his knees replaced, and while I see how much

> >better

> >

> > off he is for it - he can walk the dog again, he can move around the house,

> >etc.

> >

> > - I also saw the pain he went through, but also he's in his late 60's! I'm

> > almost half his age and I need one too?! The thought brings me to tears.

> > Anyway, just wondering if anyone is in the same boat, or have been there.

> >Thanks

> >

> > for listening.

> >

> >

> >

> >

[Guest guest]

Yeah, this is the best attitude. There are those for whom the only has has been

a knee replacement. but for many of us, learning the new rules and pushing our

limits has worked very well to cope with the problem. Good luck to you, and

don't make any sudden moves!

Philip - http://panmanphil.wordpress.com

________________________________

From: T <alitji@...>

chondromalacia treatment

Sent: Tue, September 28, 2010 9:51:18 AM

Subject: Re: Re: Hi, new member

Thanks, Ady! I think your right in that I just have to see what else is out

there that I haven't tried before.I am just learning to golf, so hopefully that

will be something that I can keep doing, and I've been learning some yoga and

stuff...so maybe low impact isn't so bad. It's really made me feel better to see

that I'm not an " odd duck " for having this problem at my age. So...ok, I think

I'm finally getting to the point where I can take a deep breath and know this

isn't the end of the world.

________________________________

From: <biggles74@...>

chondromalacia treatment

Sent: Tue, September 28, 2010 6:38:29 AM

Subject: Re: Hi, new member

Hi

I know exactly what you are going through, I am 36 myself and was finding it

hard to come to the fact that in a few years my mobility will be severly

impared. Like you, I look at my dad and can see a snap-shot of my future in

front of me. My dad has got arthritis that has spread to his hands, hips, kness

and lower back and he didn't start with it until he was about 45!

I have now come to the reality of the situation and should probably be doing

what I can to preserve what I have got left of the joint for as long as I can. I

used to be quite ken on the martial arts but it would just be silly for me to

try to go back to them now. I am still interested in getting active but these

days only the more conservative sports such as hiking on flat ground and gentle

cycling. I am also considering learning to sail!. There is plenty more ways to

live a fulfilling life without running around like a bat out of hell all the

time, we just need to see what else is out there. Unfortunatly, the situation is

what it is, but the glass IS half full. We need to think about what we have got

instead of what we haven't got.

All the best

Ady

>

> Hi, everyone, I'm new to the group and this whole chondromalacia thing. I am

37

>

>

> and just found out that I have chondromalacia. I have to admit I am pretty

> stunned, so everything is in a real fog, and bit by bit more of what my doc

>said

>

> is coming back to me. I have been really bummed out since I got the news. I

>have

>

> always had knee problems my whole life, but I pretty much just dealt with the

> pain and have lead a fairly active lifestyle. I always played sports, which of

> course added to the pain, but I loved to play soccer and basketball and I

> wouldn't listen to people who told me to stop. Never really had a firm

>diagnosis

>

> of why I was always hurting though. In 2003 I had arthroscopy to repair a tear

> in my meniscus that would create a flap and after that I was pretty happy with

> the results, although I still always had a touch of pain, especially if I

would

>

>

> land on it while snowboarding or doing a lot of stairs or cleaning, etc. So,

> about a month ago I....as you will find out I am very VERY klutzy!...I was

> carrying some stuff in my arms and stepped on my cat (not seeing her of

>course),

>

> and did something to my knee as I bobbled back and forth. Went to my knee doc

> (he's great btw) because I thought I tore the same meniscus again. I was in so

> much pain he could barely examine me, and I was very swollen with lots of

fluid

>

>

> so it was hard for him to give me a clear diagnosis at the time of what

exactly

>

>

> I did to myself. Week of bed rest with limited movement and ice and

> anti-inflamatories really did help, and I just went back for my follow up. I

am

>

>

> still really tender right in the area of my patella, which he says is due to

> tendonitis, flared up from the injury. He said I did have a small tear, but

> nothing he would operate on, but then he showed my my MRI and said...but you

> have chondromalasia, and then proceeds to show me my patella and cartledge,

and

>

>

> even I could see right off the bat that something was really really wrong. The

> right side of my cartiledge had almost completely worn away! He said that in a

> few years I would need a partial knee replacement, but that I should wait

until

>

>

> it got to the point where I couldn't walk 5 blocks or so without pain. He

> prescribed me a brace which I need to order, and said no contact sports (my

mom

>

>

> has a hip replacement and participates in kickboxing so this is not as bizarre

>a

>

> comment as you might first think for my family - we're nuts), and once the

knee

>

>

> has calmed down a little further gave me some exercises to do to pull the

> patella into the right space so maybe I will gain a few years. I am just so

>sad.

>

> My dad just had to have both his knees replaced, and while I see how much

>better

>

> off he is for it - he can walk the dog again, he can move around the house,

>etc.

>

> - I also saw the pain he went through, but also he's in his late 60's! I'm

> almost half his age and I need one too?! The thought brings me to tears.

> Anyway, just wondering if anyone is in the same boat, or have been there.

>Thanks

>

> for listening.

>

>

>

>

>

[Guest guest]

Hi

 

I wouldn't worry about the pain killers too much, people are too dependant on

them these days. When I broke my hand I never took any pain killers the whole

time. I also knew somebody who broke both of the bones in his ancle and didn't

have any pain killers until after he had his surgery. You might be able to get

by without them. I have to admit though, when my sinuses are really swallen, I

have to admit defeat.

 

Ady

[Guest guest]

Hi

 

I was exactly the same when I was told that things were not going to get any

better in my knees.  But since then I have come to know a 3 year old boy (who my

3 year old son is pals with), who has numerous heart problems and spends a lot

of time in hospital wired up to machines. Learning about what he has been

through made me feel selfish for worrying about my problems. I might only be 36

but have still had a better crack at life than a lot of other people. Take it

easy with your knees from now on and make them last for as long as you can,

don't worry about the future just yet. What is the point worrying about things

you can't change. I would much rather be tall dark and hansom and be attractive

to at least a few women than short and bald and only attractive to.. (I am still

working on this problem but will let you know when I find the answer), but it is

just the hand we have be delt and we have to make the best of it.

 

Ady