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Author Topic: Trochlear dysplasia and patella tilt  (Read 3572 times)

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Offline Sophietara

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Trochlear dysplasia and patella tilt
« on: February 26, 2015, 09:10:59 PM »
Hey guys, been doing a lot of googling recently and stumbled upon this and just wanted to share my story and get some advice

So I've been dislocating my left kneecap since I was 9 and I'm now 23 (turning 24 on Sunday  ;D), so it's been a while! I didn't know what was happening at the time, and just carried on thinking it was okay/normal. I finally went to the docs in my teens and was told it was normal and was referred to a physio. Had a few months of that then was discharged. It didn't help so I went back and was referred to another physio. Again, didn't feel it had any effect and I just stopped pretty much all exercise and just got by by adjusting my walk and being very careful. Just before Christmas last year it dislocated again just by walking, and I was stuck on my own on a path in the cold and that was the last straw! Went to a&e thinking they may take it seriously, seeing how much pain I was in but when I saw the doctor he sniggered and said that he could see it wasn't dislocated. He didn't offer me crutches or anything and I had to insist to have a doctor at the fracture clinic see me. At the fracture clinic I was referred to have an MRI scan and was told if the tracking was normal then it would just be more physio. I came out of the appointment crying, I hoped the scan showed something because physio just wasn't enough! So results came back and I've seen two consultants and they've been amazing. They thoroughly examined me and explained what was going on...

Basically I have a very shallow trochlear groove and patellar sits very laterally and my kneecap clunks significantly as it engages and disengages with the groove. I also have full thickness cartilage loss behind my kneecap. The procedures I'm having are: arthroscopy plus patella-femoral chondroplasty plus open lateral release and medial reefing plus tibial tubercle transfer

I've been told there's a 30% chance it won't work, and if it doesn't then I will go to Bristol for a trochlear groove deepening procedure. Hopefully it won't come to that though because from what the consultants said, it sounded risky.

Has anybody had the same surgeries I will be having? What is reefing as opposed to reconstruction? Will recovery be longer because of the fact that I'm having lots done?

Also although I've never dislocated my right knee, it often hurts more than my bad left one. I didn't tell the consultants that - in hindsight I should have but I just forgot! It was a lot to take in! If these surgeries help with the pain I get on a day to day basis, could I have the same thing done on the other knee?

Sorry for all the questions!! Any info would be really appreciated! Always felt so alone with my knee, so it will be nice to hear from others :)

Many thanks

Sophie

Offline Silkncardcrafts

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Re: Trochlear dysplasia and patella tilt
« Reply #1 on: February 27, 2015, 11:51:27 AM »
Sorry to hear you've had to suffer for so long.

I've had a chrondroplasty and several arthroscopes which didn't do a lot.

If you have trochlear dysplasia my question is why they don't do a trochleoplasty straight away.

I would be getting another opinion from Mr Eldridge who consults in Bath and Bristol who is the main PF specialist in the UK.
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline Sophietara

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Re: Trochlear dysplasia and patella tilt
« Reply #2 on: February 27, 2015, 09:01:54 PM »
What were the arthroscopes for? I don't actually know what it is. I don't really expect much from the chondroplasty from what I've read, but hopefully it will stop the catching sensations. Hopefully if my kneecap is less tilted and tracks normally then there will be more even pressure and less pain

In regards to a trochleoplasty, my consultant sort of said that it would be a last resort because they aren't very successful. I asked what exactly he meant and he said it would fix the instability but he said lots suffer with pain after. He said it would be best to address everything else tat once to see if it fixes it then go from there

Do you not think that it is sound advice? How would I go about getting another opinion? I'm a bit worried now in case these procedures will be unhelpful

What are your experiences with trochleoplasty?


Offline kchan808

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Re: Trochlear dysplasia and patella tilt
« Reply #3 on: February 28, 2015, 08:53:36 AM »
Hello after reading what you have been going through I recommend you get another opinion. I'll give you a brief history of what I have been through with my knees. I first dislocated my left knee playing soccer and just like you thought it was normal. After that incident it was never the same. I dislocated every other year almost from basketball, lateral movements, and unstable surfaces. So from age 10-18 I had to deal with this. finally had a surgery called lateral release at age 18 and 2 years later I dislocated again. It was hard to deal with knowing that after the surgery and all the hard work I still dislocated. It made me distrust surgeon and everything they tell you. Last year I was playing basketball. Yes I know I should stop playing basketball but I love the sport too much to let it go. I was wearing a brace and when I jumped someone went under me and I landed on there foot and my ankle twisted but did not sprain and my knee dislocated and went outside of the brace. That was very painful because it went back in with the restriction of the brace. I did all the research about dislocating because I had the last straw with this. I stumbled upon trochleoplasy and thought that this would be my solution. I sent out my mri images to various doctors and even saw a bunch in California. Most of them jus recommend mpfl repair. But a surgeon named lars blond in denmark replied back to my emails and stated that I have a shallow groove and that doing the mpfl would not be enough. Lars is the only one that performs the trochleoplasty arthriscopic. So after many months of email and Skype I figured why not I take the risk and fly there which i did. I had the surgery and stayed in the hospital for 2 nights and stayed in a hotel for 2 weeks just to gain range of motion so I could get back on the plane. It has now been 5 months since the trochleoplasty and mpfl surgery that was done to the left knee performed by lars blond. I am 100% range of motion I started slowly jogging and can do weights at 50% from my 1 rep max. Please email or send your mri to lars and he can give you his expert opinion on this matter. To hear people say trochleoplasty is a failure etc is false. I would say I wish I would have had this surgery when I was 21 I am now 29. If you have any more questions email me at [email protected] I'm not on here often. Take care

Offline Silkncardcrafts

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Re: Trochlear dysplasia and patella tilt
« Reply #4 on: March 02, 2015, 02:57:20 AM »
It is standard practice to have an arthroscope when having any surgery to make sure there is no other damage.

Your surgeon is wrong. I know of quite a lot of people that have had trochleoplasties and had very good results. It took away a lot of the pain I was having. It is a lot of surgery your surgeon is suggesting. Usually the least invasive is tried first.

Definitely get another opinion. Mr Eldridge sees patients through the NHS in Bristol and privately in Bath and Bristol.
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline Sophietara

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Re: Trochlear dysplasia and patella tilt
« Reply #5 on: March 02, 2015, 08:09:46 PM »
I've seen that a lot of people have had successful trochleoplasties but surely my consultant must have some grounds to say that it's not? I feel he just wanted to tackle everything else that is wrong first just in case it's enough to override the dysplasia? I don't know :(

I'm confused about the whole thing and actually my kneecap subluxed again yesterday so I'm feeling super stressed out about it. I just want it fixed so bad.

I'm going to get in touch with dr Eldridge I think... I'll see if I can get copies of my scans from my gp for him to review or something.

Thanks for the helpful suggestions people x


Offline vickster

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Re: Trochlear dysplasia and patella tilt
« Reply #6 on: March 02, 2015, 08:18:43 PM »
You'll need your GP to refer you to him formally for a second opinion even if you pay to see him privately.  A UK specialist will almost certainly not just look at some emailed images without doing a formal history, assessment and examination.

Make an appointment with your GP to discuss your concerns, although be aware it is extremely unlikely that your GP will understand such a specialist situation

As a surgeon, he'll be Mr Eldridge (not Dr :) )  He's probably got a website if you Google

Good luck :)
« Last Edit: March 02, 2015, 08:20:32 PM by Vickster »
Came off bike onto concrete 9/9/09 (lat meniscus, lat condyle defect)
LK scopes 8/2/10 & 16/12/10
RK scope 5/2/15 (menisectomy, Hoffa’s fat pad trim)
LK scope 10.1.19 medial meniscectomy, trochlea MFX
LK scope 19.4.21 MFX to both condyles & trochlea, patella cartilage shaved, viscoseal, depo-medrone

Offline Sophietara

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Re: Trochlear dysplasia and patella tilt
« Reply #7 on: March 02, 2015, 09:11:01 PM »
Thanks! I plan was to ring up and jump through all the hoops so that's a better place to start :)

Stupid question... Will my consultant at the moment know that I've asked for a second opinion? I won't make a difference but i would just want to know if he knows.

Mr, noted ;)

Despite being experienced in knee problems, you can tell I'm new to all of this!

Thanks again :)

Offline vickster

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Re: Trochlear dysplasia and patella tilt
« Reply #8 on: March 02, 2015, 10:12:52 PM »
If I were you, I'd actually meet with your Consultant, express your concerns and say, given the magnitude of the surgery, you'd like to get a second opinion. He can refer you for that probably rather than the GP.  These guys ALL know each other very well, especially in such a specialised part of knee orthopaedics.  I expect, etiquette would dictate that he will share the findings.  Two heads are often better than one. 

I'd go the open and honest route.  Ask him why in your own specific case (forget everyone else, no two knees are the same) he does not think a trochleoplasty is the right solution for you.  Ask him what the success versus failure rate has been among his patients and why did those fail that failed.  I'd ask him how many has he done.  There are probably only a handful of surgeons in the whole country who have done many of these operations

Meet with him, be open and honest, say you've done some research and want some clarification.

Bear in mind if you do want to see him you may well wait months for an appointment (unless willing to pay to go private) and then even longer for surgery if you can transfer onto the NHS list (private surgery would probably cost £10k or more for something major with rehab etc). 

How far is Bristol from you?  Do you have a support network that can take you to appointments, what if there are complications? What will your family do while you are in hospital for a few days?  Think about the logistics.  I was referred to another surgeon, probably about 40 miles away the other side of London.  I spent 3-4 hours travelling for a 15 minute appointment and it was an utter pain, I really resented it in the end (it was due my private insurance company being a'holes rather than any surgeon issues).  I'm now back with my original surgeon 10 minutes away, although my case is pretty straightforward in comparison and the local knee surgeon is excellent

Good luck :)
Came off bike onto concrete 9/9/09 (lat meniscus, lat condyle defect)
LK scopes 8/2/10 & 16/12/10
RK scope 5/2/15 (menisectomy, Hoffa’s fat pad trim)
LK scope 10.1.19 medial meniscectomy, trochlea MFX
LK scope 19.4.21 MFX to both condyles & trochlea, patella cartilage shaved, viscoseal, depo-medrone

Offline Silkncardcrafts

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Re: Trochlear dysplasia and patella tilt
« Reply #9 on: March 03, 2015, 10:09:48 AM »
Just get your GP to refer you directly to Mr Eldridge. No need to tell your surgeon.

Surgeons that don't do trochleoplasties will often say those types of things in my experience.

As your case is obviously complex I'd definitely get another opinion.

Good luck !

11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline Sophietara

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Re: Trochlear dysplasia and patella tilt
« Reply #10 on: March 04, 2015, 08:43:51 PM »
So my company luckily have private healthcare which disregards pre existing medical conditions yay. So I'm going to go back to my gp and get an open referral then go from there. Hopefully this way I won't be waiting goodness knows how long, i will be able to see multiple physios (on in London for prehab near my work, and one back where my parent's live for when I have had the op and am living with them) and i will get to have a second opinion from mr Eldridge I think as they have a second opinion policy.

Had a chat to someone about the policy and my current situation and it sounds all promising :) has anybody else got experiences with private?

Thanks guys and give an update on a second opinions and surgery

X

Offline vickster

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Re: Trochlear dysplasia and patella tilt
« Reply #11 on: March 04, 2015, 09:32:52 PM »
I've had all my treatment and operations privately over the last 5 years. The process does vary from company to company.  I've never heard of an open referral, my GP letters are directly addressed to the specialist.

You also need to get sign off on appointments for specific specialists and hospitals usually. Not all specialists are covered by all companies.
If it's bupa, for example, you can search for specific providers and see if they are what is called 'fee assured' so if the policy is a good one, you should be ok. I presume other companies do similar.

Depends on the policy that your company has too in terms of limits and coverage. Some for example don't cover hospitals in central London due to the cost.

 Also, they may not cover surgery that is deemed 'experimental', a trochleoplasty could fall under that maybe as it's quite new and rare? Usually, if it's NICE validated, a private company will also cover (as long as it's within the terms of the policy etc).  But you should be able to clarify that with the company. 

I guess that covers some of it. Let me know if you need to know anything else.
Came off bike onto concrete 9/9/09 (lat meniscus, lat condyle defect)
LK scopes 8/2/10 & 16/12/10
RK scope 5/2/15 (menisectomy, Hoffa’s fat pad trim)
LK scope 10.1.19 medial meniscectomy, trochlea MFX
LK scope 19.4.21 MFX to both condyles & trochlea, patella cartilage shaved, viscoseal, depo-medrone

Offline Plumie

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Re: Trochlear dysplasia and patella tilt
« Reply #12 on: March 09, 2015, 03:56:13 PM »
Sophie
I too have shallow patella femoral grooves to both knees ie, hardly any groove. I am 49 so have some years of experience on you.  I had quite a few of those procedures you first noted (following numerous dislocations), TTT, Lateral release, medial reefing etc but nothing worked (on one knee)  up to the age of 27 then I was told my only option was a patellectomy, a procedure which is heresy these days.  Do go to the top for evaluation,you need a specialist who has dealt with numerous odd knees as ours are!
Best wishes
Sarah















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