The WAITING ROOM => GENERAL KNEE QUESTIONS and comments (good for new threads) => Topic started by: claire147 on February 18, 2004, 02:40:40 PM

Title: Been told to "live with it" - advice ple
Post by: claire147 on February 18, 2004, 02:40:40 PM
I had my second visit to my OS yesterday, where more x-rays of my knees were taken.  I had previously been diagnosed with chondromalacia patellae, but I know this isn't really getting to the root of the problem and hoped that yesterday I would.  Now I know the pain I have is nowhere near some of you guys, but I do have problems walking long distances, going up and downstairs, kneeling etc etc and they really ache if I'm sat down for too long (the usual symptoms).  

Anyway, I had more x-rays taken, which he looked at and said my left knee was perfect (admittedly I don't have as many problems with it as my right), and my right kneecap was slightly tilted.  There was nothing he could suggest and said that I'd have to live with it.  I wasn't expecting this as I thought there must be something that could be done.  He even asked a second opinion but he said the same thing.

I do regular exercises for my quads, and have previously taken a course of Celebrex (anti-inflammatories), however neither of these seemed to help.  So now I'm stuck and don't know what to do.  :(

Has anyone else been told this, or is anyone in the same position?

Thanks for any advice.

Title: Re: Been told to "live with it" - advice
Post by: Nettan on February 18, 2004, 04:06:44 PM
Hey !!

Go get even a third opinion before you know that's it's definately. You need a surgeon good at your problem. Sometimes surgery isn't the best option but there are a lot of other ways to sort kneeproblems out like brace,acupuncture, excercise in a hot pool, other meds, TNS so don't give up. I'm in that stage that they can't do anymore but i haven't given up yet. Research is going on every day and one day will be my lucky day.
Good luck to you and feel free mailing  me.

Best wishes from nettan  ::)
Title: Re: Been told to "live with it" - advice
Post by: Linds on February 18, 2004, 04:21:09 PM
I woudl get a few more opinions claire, if your stomach can handle it. I have tilted patella's albeit severely tilted. My OS performed a LR on the right one and the tilt is totally gone, still some lateral shift but no tilt, and I am going in for the same procedure on the left knee hopefully soon.
What sort of xrays did this OS take? Did he take horizon or skyline view? These are taken looking at the knee joint when it is bent so you can see how the patella sits in the trochlear groove.
Sometimes there is nothing that can be done. I to have Chondro have had for 15 years there is nothing that my OS is willing to do there, he doesn't feel anything he can offer would produce satisfactory results, he feels as far as the chondro goes it's better to let lie and see where it goes. IT means having to manage the pain but  ::) what ya going to do! I hope that helped, Hang in there
Linds ;)
Title: Re: Been told to "live with it" - advice
Post by: katied on February 18, 2004, 04:36:09 PM
Hi Claire,

I can really relate to how you are feeling right now.  My knees also hurt going up and down the stairs (especially carrying my 2 yr old son!), squatting and kneeling down.  My patella only goes off to the side very slightly and my knee doesn't tract very well.

I have never had an accicdent to cause these problems and they don't know what else they can do for me.  I started off by doing Physio for about 6 months then they referred me to an OS, who decided for me to have an arthroscopic investigation surgery.  I was 24 yrs old at the time when I had this surgery and at the same time they did a lateral release.  I didn't ask for this operation and didn't even know I had it done until I came out of recovery! Never mind.  Eight years on and my sysptoms are still they same.  I do regular leg exercices to increase the muscle in my quads . Now they have looked at my MRI scans and have now come up with the idea that it is something that I have been born with? they don't know what else they can do for me.

I am no doctor but I think you should go and see your GP and get some Physiotherapy to start off with and see how you get on.  They might refer you to an OS after physio and perhaps do some investigation surgery.  Or could you go back to your OS and suggest for an arthroscopic Investigation to be done? Have you asked them to do an MRI scan on your knees as they seem to pick up so much more info than X- rays? I don't think it is fair for them to leave you like this with the pain  :'(and really think you should go back and see your OS!  Hope you don't think I am being bossy but  sometimes you just have to keep going back until someone listens to you!

Hope this helps,  let me know how you get on.
Good Luck

Title: Re: Been told to "live with it" - advice
Post by: miltonia on February 18, 2004, 08:54:46 PM
I am in the same boat. I've had the same diagnosis and was also told to live with it until a bigger problem appears. i also had an xray and was told my knee tilts slightly when bent. it sucks, especially since i am only 31 with a 4-yr old and a toddler and i need to be able to run after them. good luck...
Title: Re: Been told to "live with it" - advice
Post by: Leentje on February 18, 2004, 09:02:57 PM

Don't "live with it"! I was told somthing similar, as a 14 y o I started to dislocate and my OS told me I would grow out of it! NOT! Have had serious problems since and already 2 surgeries! There are people a lot worse off than I am, but I don't want you to have these same damn pains 24/7 all day every day! Please find a good and understanding OS who is willing to help you, first conservative.

Hope this helps! You have my support!

Title: Re: Been told to "live with it" - advice
Post by: Clarkey on February 18, 2004, 10:25:38 PM
Hi Claire,

I see in your profile you are from the UK like myself and would like to know if you are seeing a NHS OS or Private OS. Like the others have said go and see another OS who listed in Kneeguru list of OS's in UK. I saw a NHS OS who was terrible at his job, may be luckly and see a good NHS OS. Private OS usually have more time who show more dedication in their Job.

Here a link of private OS's in the UK, that might be helpful to you, from a posting response I gave to a Member last year.;action=display;num=1068139320

Hope the above link is useful and hope you find an OS thats more helpful then last, good luck, Nick :){2004}:)
Title: Re: Been told to "live with it" - advice
Post by: claire147 on February 18, 2004, 10:45:40 PM
Thanks for all your replies.

I have had a course of physio, which seemed to make things worse not better!  I am persevering with the exercises though but am not holding my breath that they will help a great deal.

I had x-rays taken from the side and from the top (not very technical I know!) while my knee was bent - I had x-rays taken from the front previously.  That showed that my right patella was tilted slightly.

I was going to go in and ask about having some sort of arthroscopic investigation done, but all that went out of the window when he started telling me there was nothing that could be done.  So you think it may be worth having this done?  Would this show how bad the chondromalacia is (as x-rays don't)?  It's difficult when your OS starts making you feel like you're wasting their time...

It did make me laugh when he said it might just go away - it's been 10 years so I hardly think it's going to go overnight!!!

Nick - I've only seen an NHS OS.  I'm not sure I could afford to see anyone privately, however thanks for that link - I'll definitely have a look.

I think I will go for another opinion anyway, otherwise I'll feel like I've given up before really trying!

Thanks again  :)

Claire x
Title: Re: Been told to "live with it" - advice
Post by: Linds on February 18, 2004, 11:16:14 PM
Hey Claire, any OS that's worth his salt will want to make sure of what's going on in far as them making you feel like you are wasting there time...They work for you, not the other way they can stuff it!
I hope you get some help because constant chronic pain is so disruptive to daily life.
HUGS and hope
Title: Re: Been told to "live with it" - advice
Post by: stgiles16 on February 19, 2004, 02:23:42 AM
GET ANOTHER OPINION!!! My first OS  told me that I had to live with it. The second one wanted to cut or do nothing. The third was willing to try pt before surgery and it turned out that my problem was worse than originally suspected. I also agree with the others who say get an MRI. X-Rays do not show ligaments and such.
Good Luck ;D
Title: Re: Been told to "live with it" - advice
Post by: Janet on February 19, 2004, 02:44:56 AM

I would also suggest getting another opinion, but this time try to find an OS who specializes in patella problems. Unfortunately, there aren't a lot of options for problems with the patella.

My OS told me that the patellar articular cartilege doesn't show up well on x-rays or MRIs, so don't think that an MRI will magically show something. It might, but you can't count on it.

So don't give up. While my situation is different than yours, I had been told by three doctors that there was nothing else that they couldn't do anything else for me. Luckily, one of them suggested I see a "big name" OS who specializes in my problem. I have had another surgery, and have had significant improvement. However, the chondral defect is still there, so the pain is still there....there just isn't anything they can do about it surgically. But maybe there are other options for you non-surgically that haven't been explored. For example, I am going to try Synvisc later this spring.

Don't give up! Don't live with it until you've exhausted every possibility. It may take some investigation to find the right doctor, but you can do it. Good luck!

Title: Re: Been told to "live with it" - advice
Post by: Sharon on February 19, 2004, 06:46:35 AM

Definitely don't "just live with it." I was told that by several different OS's and each time as hard as it was to do it, I just had to keep pushing on and getting another opinion. I have also had OS's tell me that it will "just go away"with time. It's just so horrible that they do that to us just to almost make us be quiet and go away. I agree that you should push to get an MRI because while it might not show anything, it's a good thing to do in case it does show something. Pretty much you just have to keep pushing until you get some answers from someone. Try to see one of the big names in orthopedics or see someone who specializes in patella problems. I had to see a bigger name OS and he was the one who did the bigger surgeries that were necessary in order to at least get the tracking in my knee better. I still am having problems with patella baja and pain but thats another story. If you do some research I'm sure you'll be able to find a doc who is good for you. Good luck!!

Title: Re: Been told to "live with it" - advice
Post by: Reddee on February 21, 2004, 05:37:16 PM
Hi people,
I'm very new to this board, this being my first posting...
Was looking for some advice/answers to my knee problem but came across this first:

Does it seem to you guys that the majority of people being told to live with it are female

I don't know if it's a sexist thing or not, but I was in the very same boat not long ago.  The best knee surgeon in Ireland, supposedly, told me the very same thing after 2 scopes, some repair work etc..

Basically, the fact that i was able to walk with out pain seemed to be a suitable fix to my problem.. :o

Being overly active, I wanted to continue sports and felt very hurt, insulted and annoyed by his comments.  I felt that if I was a guy of the same age (early 20s) and as active in football (university team) then i feel his actions would have been different and he would have done more to ensure my sport activity.

I'm off to find the right forum to post about my knee misery...but to those who've replied in this thread..

I feel you pain :(...and to those medics: it's not good  >:(enough