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Author Topic: Seeking best OS for 3rd opinion of necessity of TTT and MPFL  (Read 7038 times)

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Offline MCsMom

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Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« on: November 10, 2011, 09:08:44 PM »
Hello, everyone. I am the mother of a 16 year old girl whose left knee has dislocated no less than 30 times in the past 2.5 months. She is in terrible pain all of the time, and the minute she takes her immobilizer brace off and takes a step, there it goes. We have seen 2 knee experts in Atlanta.  The first said she has patella alta, increased Q angle, virtually no groove and early signs of arthritis due to all the trauma and pressure of chronic dislocations.  He said her knees were such a mess he honestly didn't know what to do, but he warned that our future included patello-femoral replacement and then eventually total knee replacement in both knees. Yesterday, we got a second opinion, and he immediately said no problem, I can fix this, she needs at TTT and possibly, once I get in there and look around, a MPFL.  I'm looking for best 2 out of 3, because it bothers me that one doctor was at a loss how to repair, and the other said "no problem".  Her right knee dislocated last week for the first time, but it has only happened once, while the left has happened so many times that her patella is extremely loose.  I am seeking the BEST OS in the US - we can travel anywhere to get another opinion to get some comfort on the best course of action. I have learned so much from reading all these postings, and have learned enough to be very frightened and cautious before letting anyone cut on my daughter.  Any help any of you can give would be greatly appreciated.  Who is the BEST? Thank you all in advance.

Offline aaa

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #1 on: November 10, 2011, 09:37:56 PM »
my understanding is that a TTT could correct the patella alta and also address increased Q-angle / TT-TG angle

However, a flat groove can be a problem, and there is a trochleoplasty procedure to deepen the groove.  AFAIK not many surgeons do trochleoplasty.

It is also important to check for rotational measurements, e.g. femoral version, tibial torison

may want to search for posts by user 'wenikio', and her post-op diary: http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=55423.0

bear in mind, a patellofemoral joint replacement isn't necessarily correcting the root cause of the problem, i.e. if there are misaligned bones than it would make sense to address this root cause
« Last Edit: November 10, 2011, 09:41:03 PM by yb »

Offline KW

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #2 on: November 10, 2011, 10:54:52 PM »
She is FAR TOO YOUNG to be even mentioning replacing anything.  Correct the problem now and nothing will need to be replaced later. 

Personally I would be going to see Dr Mark Sanders in Houston Tx and Dr Robert Teitge in Michigan.  These are two of the best Patella Femoral Ortho's in the US and you can't go wrong with either....both have quite the following on this site :)

Best of luck,
Karen
« Last Edit: November 11, 2011, 03:24:13 PM by KW »
Right Knee
2000 - 2002 - Scope,LR,TTT,Unscrewed
01-10-12 - PFJR

Left Knee
04/07†TTT/LR
08/07 Bone Grth Stim
10/07 Loose/Bent Screw
1/08 Unscrewed/MRI~NON-UNION
02/19/08 Lt† TTT Revision W/Graft
12/09/08†Scope
05/15/09 Scope
09/04/09 PFJR/Unscrewed

Offline Fathead D

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #3 on: November 11, 2011, 03:03:54 PM »
I agree with Mr Teitge or Dr Mark.  Dr Teitge is difficult to get into.  By that I mean he has a long waiting list due to him only seeing patients once a week.  His surgical calendar is also backed up over a year.  I have gone to see Dr Mark and would recommend him.  He knows his stuff and will give you a no BS diagnosis.  Check out his website at Sandersclinic.net and see what you think. 
11/29/2010 Lateral Release left knee
1/2011 Cortizone injection left knee
4/1/2011 Lateral Release right knee
5-6/2011 Supartz injection series (5)
12/12/2011 TTT and Lateral Release repair left knee

Offline MCsMom

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #4 on: November 11, 2011, 08:15:10 PM »
Thanks so much for these helpful replies.  I have a call in to Grelsamer, trying to see how quickly we can get her in to see him. I appreciate the help very much. I will begin calling these other names as well, see who can see us first.

Offline aaa

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #5 on: November 11, 2011, 11:00:25 PM »
good luck, for sure it is best to get multiple opinions, particularly the names mentioned earlier in this thread.

procedures to deepen the patellofemoral groove, or femoral / tibial derotation are certainly not called for in the majority of cases, but i would be asking the surgeon if they do these procedures at all and how they diagnose them. 

if not, then they might miss something, and the end result can be a failure and further surgeries.


Offline The KNEEguru

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #6 on: November 13, 2011, 08:46:19 PM »
You are wise to look for a patellar expert who will fully assess your daughter's knee and patellofemoral joint before undertaking any surgery. There are so many excellent knee surgeons in the USA that it would be hard to say who was 'the best' for PF problems, although we do maintain this list as a guide.

http://www.kneeguru.co.uk/KNEEnotes/node/1725

Many would probably point to David Dejour in France as a global leader in PF surgery and so I am happy to point you to these two links -

http://www.biomedexperts.com/Profile.bme/308403/David_Dejour
http://www.biomedexperts.com/Concept.bme/396886/Patellar_Dislocation

from which you will be able to identify those surgeons who publish in the orthopaedic literature on the topic of patellar dislocation.

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Offline Kaputt_Knee

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #7 on: November 14, 2011, 10:24:28 AM »
You could try the Shriners Paediatric hopsitals. They have a speciality in paediatic orthpaedics and an outstanding reputation (even I've heard of them over here in Germany!  ;) ) Here is a link to their locations:

http://www.shrinershospitalsforchildren.org/en/Hospitals/Locations.aspx

I believe the Boston hospital has an excellent reputation.

Failing that, if you do not get an early appointment for either Dt Teitge or Dr. Grelsamer, perhaps their offices can also recommend someone in your area or who is easy to travel too. They must know all the alternatives from their many seminars and teaching congresses.

Your daughter could very well have open growth plates in her long bones - I was only 4foot 10inches tall when I was 15, but by the time I was 19 I had "shot up" to 5' 3" - sadly it stopped there. I had frequent dislocations (luckily without much pain) when playing sport. A good ortho at the Cambridge University teaching hospital (Addenbrookes) told my Dad that I would most likely "grow out of it" as I had no other deformities. I actually did and played field hockey and volleyball at very high levels (if not tall ones  ;D ) I also trained as a Phys Ed teacher and did not have any further problems until I messed up my knees in my 30s while teaching skiing.

Good luck with your search.

BTW the doctor saying that there will be most likely a need for replacement surgery is probably correct BUT it will be a long time in the future. I think all of us here with a history of multiple trauma in our knees have to face up to the fact that there is a better than average chance of it happening to us at some point. And every operation we undergo is also a "trauma" for our knees!

1989 big trauma R. knee - sorted
1990-2004 3ACL recons and 20+ arthroscopies -RK
3/06 LK ACL torn!
4/06 ACL recon, kneecap broken
09 &10/06- 2x meniscus trims
3/07 - Notch Plastic & Lateral Release
14/8/08 complete revision ACL plus LCL/PLC recon
6/2/09 returned to skiing! Whoopee

Offline Driden

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #8 on: November 14, 2011, 01:50:48 PM »
I agree with previous posters regarding Dr. Sanders and Dr. Teitge. Unlike in continental Western Europe, most American OSs do not diagnose with CT, and fix, severe bony deformities (except the tibia tubercle), even though rotated long bones or shallow groove might be the heart of the problem. This holds true even for PF specialists. Having seen 4 OSs in my state and 3 out of state, I feel fairly confident in this statement. If the growth plates are open, the doctor may propose a permanent fix in a year or two and a less extensive surgery for now, such as mpfl repair.

Offline allyd

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #9 on: November 14, 2011, 03:42:48 PM »
We are overeducated patients sometimes. Like any profession, we should remember each OS has their own style/criteria for tests and exams Ė which can all be effective. It is very true that many, many OSís do not fully understand patella instability and pain. But what tests are ordered does not make or break the OS. I think the simplest advice came from YB above in that you simply need to ask the surgeon if they perform all of the associated procedures and/or how they diagnose them.

I found this article interesting during my research pre-surgery. Good insight on what a few doctors look for when a case of patellafemoral pain presents itself. Doesnít directly address instability, but still interesting. http://www.orthosupersite.com/view.aspx?rid=3609

Excerpt:
Arendt: I rarely order a CT scan. In my practice, I do not believe it adds further information. Classically, the CT scan was used to look for tilt and subluxation. Additionally, one could use the CT scan to find the TT-TG (the millimeters between a line drawn down the center of the trochlear sulcus and the center of the tibial tubercle), which is one objective measurement of the degree of lateralization of the tibial tubercle. In my hands, I find that we have other ways to gather this information than a CT scan. A CT scan has the possibility of exposing the patient, typically a young female, to higher doses of radiation. Therefore, in my practice, this is not a test that is frequently ordered.
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Offline Driden

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #10 on: November 14, 2011, 06:35:33 PM »
I flew to see a very highly regarded patellofemoral instability specialist at a world remowned institution.† He remarked in his notes that my patellofemoral alignment and lower limb alignment were "unremarkable," "normal," and "noncontributory" to my problem.† I think spent about $1,500 in travel costs to see this doctor.

A subsequent ct scan ordered by another doctor (see my diary) showed moderately excessive femoral anteversion, extreme external tibial torsion, and severely abnormal TT-TG, necessitating derotation surgery and TTT.   We will never know if the first doctor's fix would have worked, but i have serious doubts.

I have talked privately with somebody who went to see another doctor mentioned in this thread. He commented that the bones did look malaligned but would not get the problem quantified with a rotational study. I can only assume that is because he does not do limb derotations and therefore has no use getting a precise diagnosis for a problem he does not fix.

All OSs, even among PF specialists, are not equal in finding and fixing the root problem(s).

Offline Driden

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #11 on: November 14, 2011, 07:06:17 PM »
It is interesting, also, that Arendt never mentions the use of ct for measuring rotational deformities. I have a good guess as to why she does not mention the concept of rotation in that excerpt ... Informed by the fact that, having read several of her articles, i have never seen any indication that she does derotation surgery. 

I do not mean to criticize any particular doctors, but I do believe that, if more doctors appreciates rotational deformities and were more skeptical of lateral release, the world would live in harmony...okay maybe not that outcome but at least better than the status quo

Offline The KNEEguru

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #12 on: November 14, 2011, 08:16:01 PM »
MCsMom, I am not sure if all this is making your task simpler or more complicated! Still, you are doing the right thing and educating yourself about this really troubling problem, and with that in mind you may like to take a look at this very recent publication on the topic of recurrent patellar dislocation - http://www.ncbi.nlm.nih.gov/pubmed/21533537
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Offline The KNEEguru

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #13 on: November 14, 2011, 08:20:42 PM »
And in terms of your dilemma regarding the different opinions of knee surgeons, here is a study including some of the big names where the researchers conclude that even the 'experts' differ in their interpretation of the clinical findings - http://www.ncbi.nlm.nih.gov/pubmed/21715175
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Offline The KNEEguru

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Re: Seeking best OS for 3rd opinion of necessity of TTT and MPFL
« Reply #14 on: November 14, 2011, 08:26:59 PM »
This 2008 paper may also be of interest to you - http://www.ncbi.nlm.nih.gov/pubmed/19047722

and here is another recent paper - http://www.ncbi.nlm.nih.gov/pubmed/21205763
« Last Edit: November 14, 2011, 08:35:41 PM by The KNEEguru »
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