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Author Topic: Trochlear Dysplasia.....Help!!  (Read 2465 times)

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Offline LeanneWhite87

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Trochlear Dysplasia.....Help!!
« on: March 23, 2015, 05:58:28 PM »
Hi everyone,

I posted here around Christmas time after I had an accident which resulted in a dislocated patellar for the 6th time in recent years. I'd been having issues with my knee since I was 5 years old but never got anyone to take me seriously.

I was referred to a consultant by a physiotherapist after my accident and today I got the results of my MRI scan.

I have Trochlear Dysplasia with a ruptured patellar femoral ligament. The groove where my kneecap sits is cone shaped and there is nothing in between the back of the patellar protecting it.

My consultant said this is a rare condition that I would have had since birth, he said there are only a small number of consultants in the country (UK) who understand and can treat this condition so he has referred me to the one closest to me.

I've been reading up and I'm now completely petrified about what this will mean for me in the short and long term. Are they likely to do surgery or will I just have to live with the pain and instability?

Does anyone else on this forum have this condition?? I could really use someone to talk to right now.

Thanks in advance
1992 - first left knee subluxation age 5
1992 onwards multiple subluxations and dislocations, physical therapy.
2007 1st arthroscopy removal of loose body
2012 2nd arthroscopy removal of synovium
2015 MRI reveals ruptured MPFL and Trochlear Dysplasia
awaiting trochleoplasty

Offline Plumie

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Re: Trochlear Dysplasia.....Help!!
« Reply #1 on: March 23, 2015, 06:03:34 PM »
Hi Leanne
I too was born with non existent Trochlear grooves.  It has been super challenging I won't say otherwise but the knowledge of the knee and has advanced significantly since my problems first showed when I was 10 in the mid 1970s!  Because of this I believe you may have a better chance of stabilisation without too many procedures.  Can I ask where you have been referred to? Sarah

Offline LeanneWhite87

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Re: Trochlear Dysplasia.....Help!!
« Reply #2 on: March 24, 2015, 07:42:16 AM »
Hi Sarah,

Thank you for replying. I've been referred to the Norfolk and Norwich hospital which luckily is only 35 miles away from me. In the past my husband was sent to the royal orthopaedic hospital in Stanmoore for a different problem so I was dreading being sent there.

In a weird way I feel relieved that I finally have a diagnosis. I've been fighting for one since I was 5 years old, seen numerous specialists and physiotherapists, most of which have told me there was nothing wrong even denying my dislocations because I've never had to have them manually fixed. I've had 2 previous arthroscopies to repair damaged meniscus and yet still nothing was noticed. So now that some of the shock has worn off I'm actually a little relieved to know that it wasn't all in my head.

I can't help but wonder what the next step is though and as an anxious person it's been playing on my mind a lot. Is surgery likely do you think? I'm guessing that the ruptured ligament will need to be reconstructed as the specialist I saw yesterday said but what of the trochlea? I was also given a set of crutches and told to use them because any fall could cause more damage and a displacement is even more likely without the ligament for support.

Any advice or info you can give me will be very gratefully received.

Thanks
1992 - first left knee subluxation age 5
1992 onwards multiple subluxations and dislocations, physical therapy.
2007 1st arthroscopy removal of loose body
2012 2nd arthroscopy removal of synovium
2015 MRI reveals ruptured MPFL and Trochlear Dysplasia
awaiting trochleoplasty

Offline Plumie

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Re: Trochlear Dysplasia.....Help!!
« Reply #3 on: March 24, 2015, 04:36:03 PM »
Hi Leanne
It was once described to me as comparable to balancing a pea on a ball, the patella on a non-grooved trochlea.  The pea is tethered by various ligaments and with trauma (dislocations) these tethers are compromised making the instability worse.  The one on surgery I had that has 're-tethered' my patella was an MPFLR or medial patella femoral ligament reconstruction - fairly new procedure but is now done by keyhole. Sometimes this is enough to control the instability.  But this can be done in combination with a Trochleoplasty where the groove is created.  I think you maybe lucky as Prof Simon Donell at Norwich maybe your man to discuss this with.
Best wishes
Sarah

Offline Georgie28793

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Re: Trochlear Dysplasia.....Help!!
« Reply #4 on: March 24, 2015, 06:28:36 PM »
Hi Leanne,

I am in the UK and have also been diagnosed with trochlea dysplasia. Like you, I dislocated my patella for the 8th time in August and had scans etc which led to a final diagnosis of trochlea dysplasia along with rotated tibias, patella alta and a torn MPFL ligament.

I am scheduled for surgery to correct these in April. Because of the various issues, my surgeon has said there is no point correcting one problem and not addressing the others as they all work against each other. Therefore I am due a recession trochleoplasty (and some other procedures) to correct the trochle dysplasia.

If your dysplasia is bad, your surgeon may suggest a trochleoplasty as like you said, you will already be having the ligament reconstructed. It may be worth arranging an appointment (or even emailing) your surgeon and asking, as it can be quite stressful not knowing what will happen with your knees!

Good luck :-)

Georgie
2000/14 - multiple dislocations of both knees
August '14 - bad LK dislocation
April '15 - LK MPFL reconstruction, tibial tubercle osteotomy and supramalleolar derotational osteotomy

Offline LeanneWhite87

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Re: Trochlear Dysplasia.....Help!!
« Reply #5 on: March 24, 2015, 07:31:26 PM »
Thank you for the replies :)

Sarah is this the professor you mean? http://www.nnuh.nhs.uk/person.asp?id=211

I'm sorry but a lot of this stuff I don't understand :/ All I know is that I have the ruptured ligament and the dysplasia which is apparently slightly convex meaning it's stage 3?? (according to the specialist I saw yesterday)

It's just so unnerving having to wait, this is completely unchartered territory for me. I'm so used to being told I have nothing wrong.

So the MPFL surgery is pretty much a dead cert then?
1992 - first left knee subluxation age 5
1992 onwards multiple subluxations and dislocations, physical therapy.
2007 1st arthroscopy removal of loose body
2012 2nd arthroscopy removal of synovium
2015 MRI reveals ruptured MPFL and Trochlear Dysplasia
awaiting trochleoplasty

Offline Plumie

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Re: Trochlear Dysplasia.....Help!!
« Reply #6 on: March 24, 2015, 07:47:50 PM »
Hi, yep that is him.

I'd definitely go for a second opinion.  Unfortunately with the condition you (we) have ie your convex surface rather than concave the physio option never really works.  Years ago the function of the MPFL wasn't understood and surgeons would do all sorts of other procedures ie TTT, medial reefing or lateral releasing (some prob still valid)  to sort out instability but if the MPFLR was around then then I would have avoided all other surgeries I believe..  Not in a position to say if it's for you but do get some other views on it.

Chin up and stay a patient patient - knees are too tricksy to rush! 
Sarah

Offline LeanneWhite87

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Re: Trochlear Dysplasia.....Help!!
« Reply #7 on: March 25, 2015, 01:33:16 PM »
Thanks Sarah,


Can I just ask, is an MPFL reconstruction an inpatient surgery? I've had previous arthroscopies where I've been in and out the same day.
1992 - first left knee subluxation age 5
1992 onwards multiple subluxations and dislocations, physical therapy.
2007 1st arthroscopy removal of loose body
2012 2nd arthroscopy removal of synovium
2015 MRI reveals ruptured MPFL and Trochlear Dysplasia
awaiting trochleoplasty

Offline Plumie

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Re: Trochlear Dysplasia.....Help!!
« Reply #8 on: March 25, 2015, 06:01:50 PM »
Hi
Mine was one overnight following the keyhole procedure.  They just make sure you are ok on crutches and stairs etc, the usual.  Good luck.  Let me know what you decide to do. Sarah

Offline LeanneWhite87

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Re: Trochlear Dysplasia.....Help!!
« Reply #9 on: March 26, 2015, 07:58:29 AM »
Thanks Sarah,

good luck to you too
1992 - first left knee subluxation age 5
1992 onwards multiple subluxations and dislocations, physical therapy.
2007 1st arthroscopy removal of loose body
2012 2nd arthroscopy removal of synovium
2015 MRI reveals ruptured MPFL and Trochlear Dysplasia
awaiting trochleoplasty

Offline ema_b85

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Re: Trochlear Dysplasia.....Help!!
« Reply #10 on: March 30, 2015, 12:34:24 AM »
Hi Leanne, I too had trochlea dysplasia, patella Alta and a ruptured mpfl.and had difficulty getting a consultant to take me seriously, I've had this issue since being 14, and will more than 20 subluxations knew I had to try again with consultants, so at 28 I was re referred to hospital and diagnosed with the above conditions.
I had surgery on sept 2014, I had tibial tubercle transfer (fulkersons osteotomy) mpfl reconstruction and microfrature.
The Ttt was due as my tendon connected to far to the outside of my knee and because I had patella alta (knee cap that sits high) I had to have this procedure as it was the only way possible to move the position of the knee cap.
I had arthroscopic mpfl reconstruction and microfrature surgeries but unfortunately the Ttt isnt.
I had 6 weeks none weight bearing with a leg brace locked at 0-90 degrees. Rehab is hard but well worth it, I'm just 6 months post op and I have to say my knee finally feels strong, my kneecap now sits in the correct position and tracks perfectly in what groove I have.
Hope this helps, feel free to ask me if you have questions and you think I maybe able to help
Emma xx
Fall whilst kickboxing aged 14yrs (2000)
subluxations >10 over 15 yrs
MRI scan: 12/13
Diagnosis 02/14: trochlea dysplasia, lateralisation of the patella, patella Alta, mpfl rupture, damage to back of knee cap ++
22/09/14 - Fulkerson osteotomy, MPFL Reconstruction, Microfracture, chondroplasty

Offline LeanneWhite87

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Re: Trochlear Dysplasia.....Help!!
« Reply #11 on: April 07, 2015, 02:05:16 PM »
Hi all,

Today I received an appointment to see Mr McNamara at the Norfolk and Norwich University hospital for the 15th of May.

I thought I would feel relieved when I finally had an appointment but now I just feel terrified about what's next for me :/

It's going to be a long 5 weeks wait
1992 - first left knee subluxation age 5
1992 onwards multiple subluxations and dislocations, physical therapy.
2007 1st arthroscopy removal of loose body
2012 2nd arthroscopy removal of synovium
2015 MRI reveals ruptured MPFL and Trochlear Dysplasia
awaiting trochleoplasty















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