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Author Topic: Osteoarthritis next step advise for 30 year old  (Read 9507 times)

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Offline bizzylizzie

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Osteoarthritis next step advise for 30 year old
« on: February 03, 2013, 07:56:02 PM »
Hi I'm a 30 year old female with osteoarthritis of my right knee. I am just looking for some advise on possible treatment options so I know my options before I see my consultant again next week.

The OA has got especially bad over the past year and currently it seriously restricts what I can do. Theres not a day it doesnt hurt and i can/feel hear my grinding when I walk up/down stairs etc. I recently had an arthroscopy to repair a tear in my meniscus and to smooth the damaged cartilage. But this doesnt seem to have had any effect.

My consultant said after the arthroscopy the damage was a lot worse than he thought and it was 'bone on bone'. I think the damage is mainly in the patellofemoral part. When I was in my teens I had a lateral release following several dislocations and he is happy with the alignment of my joint.

What I'm wondering now is what else can be done? I have 3 young children and am a primary school teacher and to be totally honest am completely fed up of the pain and not being able to do the things I want to do esp with my own children. I know I need to see what my consultant says but I just wanted to have an idea of my options before I saw him. So any advise would be great, thank you.

Offline LindaM

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Re: Osteoarthritis next step advise for 30 year old
« Reply #1 on: February 04, 2013, 01:27:43 AM »
Hi there,

Sorry to hear you are in pain and bone-on-bone so young.  I am also a teacher and understand how difficult it is to be on your feet each day when every step sets your teeth on edge from pain.  I had over 20 years of arthritis before I tore my meniscus, had surgery, and had my knee go downhill rapidly to bone-on-bone over the course of the school year.  I had my first PKR that summer and had the second last year.

Being so young, your doctor's first choice will probably be to try to delay a knee replacement or a partial knee replacement as long as possible.  They don't last forever and future replacements will probably be necessary. One of the first things will be to suggest physical therapy to strengthen everything around your knee to help support it.  This will help a little, but probably not nearly enough. You might be recommended to try synvisc or one of the other injectables to buy time.  If you are bone-on-bone they really are unlikely to work for you.  According to my rheumatologist, a cortisone shot is just as likely to work and about $800 less expensive.  That being said, neither one is very likely to help at this point very much.  A custom brace can be made to take the stress from your knee, and I found it somewhat helpful but not good enough if you are on your feet all day.  I suppose if I were 80 and spend most of the day in my chair at the home it would be good enough, but not for anyone active.

For people with small defects there are procedures that move a bit of cartilage to the damaged area.  I will let someone who has had that kind of surgery talk about it, but it sounds from your post that your knee is not in good enough shape for that.  Read up on some of the posts to see if you have other options. 

When you meet, let your consultant know how much this affects your life, your real pain levels, everything with complete honesty.  Listen carefully to your options, ask your questions.  Be open to trying some of the delay tactics I mentioned, but if in the end you find that those are not enough to allow you to live your life fully with a tolerable pain level, you will need to work hard to get that PKR or TKR and do that with the realization that you are choosing to be more mobile now with the risk that in the future you will need another TKR and may not have as much success with that one.

 There are many people on KG that have had a TKR much earlier than either they or their doctor would have preferred and have faced the choice you are facing.  Browse around for their stories and learn from them.

Good luck

Linda :)
>20 yrs. osteo and inflammatory arthritis, fibromyalgia
meniscus repair Sept. 2009
right PKR June 2010
left PKR Feb. 2012

Offline Adobec

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Re: Osteoarthritis next step advise for 30 year old
« Reply #2 on: February 04, 2013, 01:52:38 AM »
I think Linda covered everything :-). I am also in my 30's and have severely degenerated knees... Right much worse than left.  Depending on the location of your pain/damage, you might be a candidate for an osteotomy - to take the pressure off of your medial/lateral, or pf compartment.

I have had microfracture as well as a ttt (maquet) to help my left patellofemoral compartment.  Happy to answer any questions you may have.  My right knee is in "hospice" , nothing can be done except tkr, which I am delaying as long as possible.

I also have young kids - 4... And am a nurse.  So hard not to be active, even more discouraging not to be able to care for my family or work.  Good luck!
1991 - R ACL patellar tendon, med. meniscus removed (50%)
2002 - R ACL revision, cadaver, lat. meniscus removed (50%)
2011 - L ACL patellar tendon, med. and lat. meniscus REPAIR. 
3/2012 - L Medial meniscectomy (didn't heal from 2011), microfracture
11/6/12  - L TTT (maquet). Micro fully healed

Offline Brambledog

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Re: Osteoarthritis next step advise for 30 year old
« Reply #3 on: February 04, 2013, 08:55:57 AM »
Hi bizzylizzie,

I had a very active job that I loved and have had to give up due to my knee, it must be horrible to have spent so long training to be a teacher and then have the job you love bringing pain every day... I hope your doc can talk you through some options and help you feel a bit more hopeful.

Just wanted to say not to underestimate the power of PT. So often the muscles around the knee are either not strong enough, or are not strong in the right places, pulling your knee out of its proper alignment. It is always worth delaying any further surgery - as the other posters say, once you start looking at any kind of PKR or TKR you are removing bone, and with the life of a replacement being (v roughly) between 3-10 yrs for a PKR and 10-20 yrs for a TKR, you have to think the mathematics of it out. Personally, I am of the opinion that anything could happen when you're old, and I want my life NOW if I can have ir ::), not when I'm an old lady  :o but each person's circumstances are different...

Any surgery is a risk, but can also have huge benefits if all goes as you want it to. Bone-on-bone at 30 is rough, I do feel for you. I am in constant pain myself with very limited mobility, and if I had the option and PT hadn't worked, I would probably be pushing for an op to give me back some of what I have lost. Do whatever you have to, but really give physio and a gentle exercise programme a go for a few months first if you can, because if you can delay that next stage by even a few years... Plus, if you do end up having a PKR or TKR, you will need your leg muscles to be as strong as possible in both legs to help with your rehab after.

Really good luck with your appointment, and I hope all goes well.

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline bizzylizzie

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Re: Osteoarthritis next step advise for 30 year old
« Reply #4 on: February 04, 2013, 09:27:59 PM »
Thanks all for your replies, really good to hear your experiences/opinions. Like Brambledog says I really feel like I want to be able to live my life fully now, while my children our young, I'm young etc. and worry about what may happen later when it happens! I'm thinking it's not likely that my consultant will want to do any kind of knee replacement because like you say the combination of my age and how long it would last.

I have spent the past few months doing exercises from the physio with no obvious effect in terms of the pain. So I'm reluctant with the idea of just having physio because I cant really see that its going to make a significant difference.

Can I ask is an Osteotomy or TTT an option if the alignment of your knee is good? The lateral release when I was younger seems to have sorted the alignment and my consultant has mentioned hes happy with the alignment so would this rule out either of these?

Adobec did you get any significant benefit from the microfracture in terms of pain and what you could do?

Also does bone on bone mean that a replacement is inevitable at some point?

I really don't know much about any of these things so am really grateful to hear anyones opinions or experiences so I feel a little better prepared when I see the consultant.




Offline JTB

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Re: Osteoarthritis next step advise for 30 year old
« Reply #5 on: February 05, 2013, 01:15:34 AM »
Sorry to hear about your troubles with OA at such a young age and with such a full life. The best and the brightest have given you good advice here already...

Am older than you, but our ailments and diagnosis (by my original operating OS) are similar. Keeping the story short: I live in the US and my advice to you is to get a second and a third opinion and to get into a higher-end learning hospital if you can, to get the collective OS' there to look at your problem. Something about different perspectives.

                                Good luck. Will keep an eye on your posts.
Bike racer electing sport-med scope Jan 2011 for patella catch: shave patella, MFC and trochlea (with sneaky lateral release) Grade 3 findings. @ 1 year, CRPS, pain inhibition, muscle atrophy, osteopenia, sudden bilateral chondromalacia. in free-fall 2 1/2 years.
Today on Strava riding well.

Offline Adobec

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Re: Osteoarthritis next step advise for 30 year old
« Reply #6 on: February 05, 2013, 03:41:23 AM »
Since you think your OA is worse in your PF compartment, I'll stick to that area.

You can have a TTT (Maquet) for that area.  It's an osteotomy where they elevate the tibia so there is less pressure between the patella and femoral trochlea.  This surgery isn't done much any more -- so you have to find someone who does LOTS of them!  My surgeon sent me to another who is older and does lots of these procedures.  Most younger surgeons have never done a maquet.

Concerning my micro -- I didn't even know I had a 1.5x1.5cm pothole in my femoral trochlea.  I'd had an acl repaired a year prior and everything was fine.  Well, a year of PF tracking issues, undiagnosed, caused the pothole.  So it's hard to judge whether or not the micro helped :)

I had lingering PF tracking issues even after the micro.  So, 8 months after my micro, I  had my TTT.  Lo and behold, the surgeon found two more potholes on the medial side of my trochlea!  These were not micro'd at the time, I'm not sure why -- maybe the joint is too far gone? 

So I'm not able to answer the question - did micro help your pain?  Too much other stuff going on to tell -- :)

But that would be an interesting post :)
1991 - R ACL patellar tendon, med. meniscus removed (50%)
2002 - R ACL revision, cadaver, lat. meniscus removed (50%)
2011 - L ACL patellar tendon, med. and lat. meniscus REPAIR. 
3/2012 - L Medial meniscectomy (didn't heal from 2011), microfracture
11/6/12  - L TTT (maquet). Micro fully healed

Offline believev

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Re: Osteoarthritis next step advise for 30 year old
« Reply #7 on: February 05, 2013, 06:35:36 PM »
I had similar situation to you at 29-30.  It was about 4-5 years ago.  I was very active. running biking, lifing weights and I never ahd knee pain, not once.  I started out with some minor swelling after walking, and it eventually got worse to the knee was swollen all the time for months. I went to see best knee doctor in area and he tried scope and a cortizone shot. MRI showed nothing.  He eventually asked me to wear a brace for 2-3 month which I did.  This was all after about 6 weeks of pt which did nothing even therapist said there was no strength imbalance or anything.

my downfall was the knee brace, the combination of knee brace and swelling caused severe muscle atrophy and by the tiem i had a scope done the quads were completely atrophied.  the surgeon found a patch of cartlidge on my febor htat had worn through and tried to do a micro fracture type of procedure on it.  I have been in pain ever since.

Most of my pain is from the weak quads and VMO which I just can't seem to get back to normal so I would avoid any braces, try to keep muscles as strong as possible.  and in my spot I have to consider an ACI or some cartilage transplant type of procedure.  I live with my activities, I'm less active than I was but I get around ok. after a few really bad years it seems to have settled I do have good and very good days and bad and very bad days.
but my advice is not to use a brace for too long if you can avoid it, because it caused most of my current problems, i'm still tryin therapy off and on to get muscles back to 100%, because of the muscle imbalance my back is weaker on the weak knee side, hip flexors got weak ectra, it just seems to cause unlimited problems so keeping your strength and muscles balanced is my top advice

then go see a cartilage specialist and see what can be done. everyone told me forget about pkr or total replacement for 20 years. so i'm trying to find the right time to see if something like denovo or stem cel therapy might help me. still haven't pulled the trigger on either though
good luck

be CAREFUL with brace, it caused me so much damae, i can't even begin to explain i couldn't even contract my quad at all when i first took it off after only 2.5 months of wearing it.  alot had to do with swelling shutting down the muscles though.

Offline JTB

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Re: Osteoarthritis next step advise for 30 year old
« Reply #8 on: February 05, 2013, 07:33:01 PM »
Also, you say you "recently" had a chondral shave (smoothing damaged cartilage). These procedures can take a long time to heal- Many months sometimes. You mention that certain activities make the pain worse, speaking from my experience trying to heal from chondral shaving of the patella, if the activity hurts, I generally stay away from it (if you can avoid stairs, do so, or find a way to navigate them that doesn't hurt, no matter how silly you think you look) and I think this has helped my cartilage heal. Yes you want to keep quad strength up, but there is a balance you have to strike with pain as swelling causes a vicious cycle of cartilage destruction. 
Bike racer electing sport-med scope Jan 2011 for patella catch: shave patella, MFC and trochlea (with sneaky lateral release) Grade 3 findings. @ 1 year, CRPS, pain inhibition, muscle atrophy, osteopenia, sudden bilateral chondromalacia. in free-fall 2 1/2 years.
Today on Strava riding well.

Offline bizzylizzie

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Re: Osteoarthritis next step advise for 30 year old
« Reply #9 on: February 08, 2013, 10:40:56 PM »
Certainly your replies have given me lots to think about and I seem to have spent ages reading other posts and confusing myself even more! I was thinking I'd see my surgeons reaction to an Osteotomy but now I'm not even sure thats possible when the damage is mainly behind my knee cap. I guess I will have to wait and see what my surgeon suggests on Tuesday. I have definately decided though that something needs doing because I cannot live my life like this. It's hard to avoid doing the things that make my knee hurt because even sitting on the sofa seems to do that! Besides I have 3 young children who need me! So fingers crossed for Tues and some kind of solution even if temporary.

Offline Brambledog

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Re: Osteoarthritis next step advise for 30 year old
« Reply #10 on: February 08, 2013, 10:47:02 PM »
Good luck!

I hope you can find some answers out of the maelstrom of possibilities. It must be so confusing, but just go in armed with some questions, and use a simple voice-recording app on your phone (in your pocket ;)) to record it so that you know exactly what they said (and not what you thought they said!) and can re-check later on. I do it all the time and it is insane the things you think they said, and you check back and actually it wasn't quite as you remembered...

Fingers crossed.

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline bizzylizzie

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Re: Osteoarthritis next step advise for 30 year old
« Reply #11 on: February 08, 2013, 10:49:45 PM »
Lol what brilliant advice, I always forget the majority of what is said! I shall def be arming myself with my phone on record this time. Thank you.

Offline Brambledog

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Re: Osteoarthritis next step advise for 30 year old
« Reply #12 on: February 09, 2013, 10:43:40 AM »
Lol, thank you!  ;D

Just be subtle about it and start the recording before you go in. I've never asked permission, as I think because it's just for my own sanity and recollection it's ok, and definitely not worth having them say no, or be cagey about everything they say.

Good luck,

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline bizzylizzie

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Re: Osteoarthritis next step advise for 30 year old
« Reply #13 on: February 12, 2013, 04:12:10 PM »
Not a good day! I saw my surgeon again he delivered the bad news of worse damage than he thought and bone on bone wear with the added bonus of telling me my cruciate ligament has also completely gone. His suggested action was there is nothing he can do! He has said too young to do anything and he does not need to see me again. I am gutted, was really hoping he would suggest as least some solution. But no apparently nothing he can do.
So not only is the osteoarthritis worse than originally thought but I also have a totally reptured ligament and there is nothing at all that be done, would you guys agree? Is there nothing that can be done even to help a little because I am in serious pain everyday and cant live my life. Have I really just got to lump it and carry on like this? Advice would be brilliant of anyone elses experiences/opinions coz I just find it hard to believe you can say your knee is screwed but nothing we can do!

Offline Brambledog

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Re: Osteoarthritis next step advise for 30 year old
« Reply #14 on: February 12, 2013, 04:40:47 PM »
Hi again,

IMHO the answer is NO, you don't have to just put up with it. Personally I hate that "you're too young for us to consider a more invasive solution, so just go away and wait until you're 60" approach. Undoubtedly something such as a TKR (which I think you would have to consider if you are bone on bone) has only a limited lifespan of approx 15 years, hopefully more, before needing a revision - it depends whether you would rather live more normally now and be prepared to struggle more in your later years, or wait now and then get a (hopefully) second lease of life in 20 or so years time. I know what I would choose!! TKRs might be more normally done around 60 years old, but they have been successfully done on people of your age where the circumstances are appropriate.

I think you should definitely get a second opinion (asap) and see what another surgeon has to say. 30 is way too young to be given up on, you deserve better advice than he has given you at this appointment. Also, I'd go and see your GP and tell him what you've been told, and ask for a referral to pain management. They cannot solve everything, but they can help with the pain and psychological aspects of dealing with a painful and debilitating condition such as arthritis.

Really good luck with all this. It must be a horrible feeling right now, and I do understand it. Pain alone is scary, pain and loss of function/mobility is devastating. Vent your feelings here or feel free to PM. You have to fight sometimes to get the treatment you deserve, but you can do it - make it something to focus on and fight against, don't let the system grind you down and make you give up  :)

Crappy day myself, just remember that tomorrow can always be better, and you are always worth fighting for.

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)