Genetic hyperextention in my knees and subluxation/disclocations

[byclops77]

Hi everyone...have just discovered this forum and it seems great! So much info.

I have genetic extreme hyperextention in my legs (thanks mum) that my sister and I are blessed with - along with that we have knee caps that subluxate and dislocate. My sister is 15 years older than me, and many many years ago underwent two LRs on one knee, one on the other (all failed) and the TTT on each knee.

So you can see I was destined for knee issues!!! Every since I was about 10 I experienced knee pains and in early teenages years probably the subluxations began. It was just something i've learned to live with.

3 years ago I met with a surgeon/specialist who seemed to think surgery wasnt an option and told me basically to ignore it as long as I could and go to PT. The past two months now my left knee has been in agony. I have booked in to meet with another surgeon to discuss options and have been going weekly to PT to work on the VMOs etc. Still in awful pain.

So that's basically where I am - counting down the days till I meet with the specialist (3 weeks) to discuss options. I KNOW surgery is last resort but i'm willing to do anything right now to get rid of this pain. My physio is great and has explained the pain is a viscious cycle of blood in the joint and swelling but there's not much I can do for now other than ice and take anti-inflammatories.

Would love to hear anyone elses experiences with options to help the subluxations/dislcocations in hyperextensive patients....from what i've read LR is not an option so TTT is the way to go???

[shade]

Hi,

Maybe standalone LR is not the way to go with your condition, but they could do a medial reefing and/or VMO advancement with an LR to correct your knee problems.  Not every OS will recommend a TTT straight out of the gate.
Research these procedures and hopefully you'll get answers at your OS appointment.  Good Luck.  ~Shade

http://www.kneeguru.co.uk/html/steps/step_05_patella/lat_release.html

[doublea21]

I have very similar problems to you based on your description.  All the girls on my mom's side of the family have the same thing to varying degrees.  I am the lucky one of the family and my knees are the worst.  I would wait to see what your OS thinks but I can tell you what i have had done on my knees to somewhat alleviate the problems.  Had LR and VMO advancement on both knees which did not help much due to the fact that I also have very shallow trochlear grooves that the kneecap sits in as well as an extreme Q angle.  Then I had a TTT with VMO advancemnet which has helped my knees a lot.  One of my knees is still doing very well with that one.  THe other is not due to a fall that I had which caused my knee to dislocate and pull the VMO stretch the MPFL.  Now I'm waiting for these structures to be repaired so that my knee will hopefully stop subluxing.  PT is important because you really need to build up the quads especially the VMO. 

Let us know what your OS says in a couple weeks and feel free to ask me any questions.

Amy

[byclops77]

Thanks for the info everyone!! I'll be sure to keep everyone posted.

[byclops77]

*sigh* well i'm now up to about 6 weeks of near on contsant pain in my left knee. I guess on a scale of 1-10 in pain (10 being the worst) the first 2 weeks or so were a 7-8, then it dropped down to a 5 or so (but nearly constant). I dont know why, but the past 3 days it's back up to an 8 - SO SORE.

I'm trying to rest as much as I can, ice, and take anti-inflammatories, but its still not easing A week and a half to go until my specialist appointment. Im reallly hoping that when I see him he can recomend something like a cortizone injection to ease the pain while we investigae further.

I'm trying not to dwell on it all, but i'm panicing a little. I have a long weekend interstate trip planned in 6 weeks (going to a ball, so i'm guessing i'm not going to be able to dance much like usual grrr) and in Oct/Nov we were spending a month in China backpacking. Gawd, I hope I can make it. We paid deposits, but i'm yet to book flights or anything yet until I can meet with the specialist and get a better handle on whats going on with my knee.

Anyways, I guess this was just a vent for me. I feel so bad whinging to my husband and friends and family about it, and I know they're all frustrated as they cant do anything to help either.

[byclops77]

Well, I had my third night in a row with barely any sleep. I think now i'm functioning on total hours of sleep over the three nights equivalent to what I usually get in one night 

I had myu specialist appointment today (finalllly). It went ok. I really like the guy, he's friendly and nice etc so that helps. We had a discussion about how i've bene the past 3 years since I saw him last and then how i've bene the past 6 weeks. He poked and prodded around and felt my knee.

The BAD knees is that there is very little swelling in the knee and no fluid, so an injection into the joint will not help the pain, and nor will anti-inflammatory tablets. The other bad news is he has ordered various scans of my knee (x ray, CT scan of the joint and arthrogram where they inject in dye and do a scan) and the earliest I can get in for that is TWO weeks. I tried every clinic in town that does the arthrogram *sigh* (even one that is an hours drive away). And the earliest I can get in to see the specialist again AFTER that appt is a further week (so three weeks from now).

I'm trying not to dwell on another 2-3 weeks of my life being on hold etc etc. I am seeing my gp tomorrow morning to ask for some stronger pain meds and possibly sleeping pills. Im really not loving this idea but have to face the fact that I need to be able to (at a bare minimum) work and get some uni assignments done the next month or so and I cant do that if I only get 2 hours sleep a night.

I guess the GOOD news is that the specialist is very open to discussing surgery, but of course dependant on my scans. Its all speculation - but perhaps it is a easy as there being some crap in behind my knee cap that can be cleaned out arhtroscopically, but potentially there is unfixable damage and we also need to discuss surgery to dicsuss prevention of reoccurence (lateral release/vmo advancement and also tibial transfer). He did make it very clear he cant cure knee pain, but he could make it "different" (anything would be an improvement for me right now).

So....i'm holding it together...I am fearful of living the next few weeks in as much pain as I have been the last few, and I am fearful that my scans wont show anything that is fixable, but I just have to be PATIENT and wait and see really.

Oh yeh, in the mean time I do have to get fitted for orthotics (new that was coming) grrr, my health insurance doenst cover that so i'll be WAY out of pocket but it will help a little bit now and in the future.

[doublea21]

I'm glad to hear that you like your OS, I'm still in search of one that I like, but I'm sorry that you didn't get the answers you were hoping for and have to wait for all the scans to get answers for your pain.  Hopefully your GP will be able to help you to get your pain under control so that you can sleep.

Keep us updated as you get results for the test and see your OS again. 

Amy

[byclops77]

Well I managed to have my aunty pull a few strings and got in for my scans yesterday - YAY!!! I pick up my results in a few hours. I know this may strange but im REALLLY hoping they show up something (which means my pain is justified and can hopefully be fixed!!!).

[hopalongcasualty]

Byclops77,

I was researching this brace for another subluxator today and thought you might be interested as well.  This is a product that treats the patella issue only anddoes not add other problems by over bracing.

http://www.allegromedical.com/orthopedics/knee_thigh/trulife_camp/neoprene_patella_stabilizer.P215084

Post injury my OS had me use the CAMP patella stabilizer to keep the patella from dislocating laterally.

It worked, and it could be worn all the time without weakening the ligaments and other soft tissues.  It has a strap above and below the knee with a pad that gently puts pressure on the side of the patella that keeps it from sliding over the condoyle to dislocate.  I am not saying it is the perfect solution.  It worked for me when I had shredded the medial retiniculum and MCL.  My patella was actually floating over the face of the lateral femoral condyle without the brace.  This brace was ONLY for patella stabilization on one side of the joint.  When I wore the brace, the patella was tracking in the troclea but was still tilted.  It WAS enough for me to put off surgery long enough to do the pre-op PT and still work and walk pre-op.

I have nothing to gain from recomend this product.  It simply worked for me and it might work for your daughter. 

Good luck

Hopalongcasualty

[Natalie.D]

Bycyclops77,

I hope all goes well for you and your results show something that can be worked with.  I just wanted to add that I am hypermobile with very shallow, or non-existent trochlear grooves, I had the LR, didn't work but then went on to have the TTT which has been an incredible success for me, I have not dislocated or subluxed since having them done (one over 10 years ago, the other a few years ago), I was constantly dislocating, hyperextending, subluxing - you name it I did it    So hopefully the TTT will be an option for you and will be as successful as mine have both been.  Good luck.

Natalie.

[Stacye]

Hi I am in the same boat where I had the TTT on the left leg about 13 years ago and was great til about at year ago and now sublexes evertime you try to extent it. They did a Lateral Realease on my right leg which failed so now I can t walk at all they are trying to decide which surgery to try next and which leg first. I have the almost flat grove big Q angle and hyperextention. Next week will be my 5th speciailist. 

[Silkncardcrafts]

Well I managed to have my aunty pull a few strings and got in for my scans yesterday - YAY!!! I pick up my results in a few hours. I know this may strange but im REALLLY hoping they show up something (which means my pain is justified and can hopefully be fixed!!!).

Hi there,

I've just read your story and is very similar to my own.

I suffer from ligamentous laxity and my knees hyperextend quite a lot. Also have extremely mobile kneecaps. Initially I had physio for about a year, but unfortunately didn't help so I had surgery. First I had surgery on my right knee, then on my left knee. I ended up having 2 operations initially on my left knee as the first operation (a lateral release) didn't help enough. I then underwent a patello-femoral ligament reconstruction which made a huge difference. Unfortunately my muscles over-developed and then my knees started dislocating medially. I've had further surgery on both knees and now doing very well. It's been about 5 months since my last operation and gradually getting there.

After many years of seeing different doctors my physio referred me to a sports physician. They have a much better understanding of my problem and have been able to make suggestions that my GP had never thought of. Now I never see my GP for joint related problems as they really have no idea. When I lived in the UK I saw a new sports physician and suggested that I try pilates. When I returned to Melbourne I started clinical pilates, which has made a huge difference. I have done a lot of work strengthening the muscles around my knee, hips, glutes and hamstrings. Initially I didn't much strengthening of my glutes, hips and hamstrings with my first physio but my current physio includes a lot of strengthening of my hips, glutes and hamstrings too. It is so important.  I have also started swimming which my knee is coping with well. I never do breast stroke as my knee surgeon advised against it a long time ago.

It's also really important to go to a physio and surgeon that specialises in knees. It can make a huge difference.

If possible I'd encourage to go and see a sports physician. They may have some other ideas to manage your pain. Give clinical pilates a go too.

Good luck !!!

[cherising]

I have hypermobility syndrome which pretty much means I have tons of hyperextension, particulary in my knees.  I was a dancer all my life and no one could figure out why i kept injuring myself (multiple dislocations, sublaxing, etc).  They told me I would never dance again.  Hard time in my life.  Now ten years later I am trying to dance again thinking my knee was fine but it popped out again in Oct.  Now it just won't stay in.  So I have been dislocating and sublaxing since I was 14 years old.  Never had surgery until now       Having medial patellofemoral ligament reconstruction and Lateral Release in Sept.   I am hoping this will stop the sublaxing and I can go back to my busy active lifestyle.  It took me forever to realize that my hyperextension was a huge part of why my knee does what it does. 

[Red Shirt crewman]

Although you have had a lot of posts I'd thought I'd put my two cents in.  I have found that they do a better job these days of dealing with this than they did in the sixties.  I had a modified Hauser in 67.  20 years later I needed a knee replacement but was too young.  Had to wait 20 years to get that and now have problems in flexing.

I am sure you have had many posts providing info on how to deal with the pain.  I actually got to the point I didn't notice it.  Goes to show what self-dilusion - and some self-medication will do.

[Silkncardcrafts]

Hi there,

I am actually thinking of writing a book about loose ligaments and hypermobility as there is so little literature about it. What do you reckon ?

Unfortunately my loose ligaments has affected both shoulders, both knee and my left ankle.

It has taken me a long time to find the right treatment, but feel I have the right people to treat me now.

Clinical pilates has one thing that has really helped me and looking at doing a pilates instructor course next year.

Enjoy the rest of the weekend !!!