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Author Topic: Cramping, instability. Patellas dislocate. Need advice Adelaide  (Read 1152 times)

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Offline emloupe

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Hello

Firstly, apologies about long post and lack of medical terminology.

I am wondering if anyone has any advice for me. I am a 33 year old female and have experienced severe knee pain since I was a young child. I was a very flexible child until my knees started to lock up around the age of 6 or 7. I am still very flexible with the other joints in my body and have of late experienced locking in my shoulders too now. Since then I have been unable to sit cross legged and I have to be very careful with the positioning of my legs. Something that has become second nature and a constant though pattern.

I would get up from a sitting position and the excruciating pain in my knee would lock my leg in a bent position. My family doctors put this down to growing pains. My left knee is particularly bad.

As I got older this started happening more.

Eventually I had a L patella realignment when I was 18 as my kneecap would dislocate when I was simply walking around and I would find myself on the floor, this happened quite a few times while I was out and about as I got older resulting in a trip to hospital in an ambulance. Hardly a good night out……. But go the nitrous oxide  ;)

My patella’s are quite small and they do not sit into a groove so they just sort of float there. The patella tendons on both are attached to my tibia to the left of the tibia but since the surgery the left leg is now centred.
I have experienced constant pain and instability in my L knee since surgery however the same pain and instability is also felt in my right knee. The skin on the left side of my leg has been numb ever since the operation. This numbness covers an area approx 20cm long starting just above the knee and approx 10cm in width.

I live my life constantly tensing both knees due to the feeling of instability and this causes my muscles to be constantly sore and jumpy. I get severe cramping in both knee joints. I find falling to sleep very difficult without the aid of heavy sleep medication as I am too frightened to “let go”. I do understand that a percentage of my problem may be emotional due to the length of time this has been going on in my life and the intensity at which I have to concentrate constantly on keeping things tense and in line. My Mum had to take me to the hospital during a particularly bad cramp I had one night. My muscles cramp around the knee joint and do not release.

I find it very difficult to allow anybody to touch either of my knees. I am hypersensitive which makes investigation difficult.

I am tired. I am tired and sick of this ruling my life. I am tired of the restriction. I feel physically ill even looking at people that sit cross legged. I am unable to have any material or covering over my knees as the feeling of even a thin skirt brushing over my knees makes me feel ill and brings on cramping. I sleep on my back with my knees elevated and sticking out of the quilt so the material does not touch them. I just cannot imagine how they do it.

I have asked for above knee amputation of both of my legs and the emergency physician just laughed at me. Maybe that sounded like a humorous request?  :-\

I am so frightened regarding the 10 year tag on total knee replacements but I can’t stand this feeling anymore. I can’t believe that it would be any better than it is now? I wouldn’t want to go through something like that and still feel the pain.

Does anyone know of an Orthopaedic Surgeon and/or a Physical Therapist in Adelaide, South Australia?

How do you relax with the constant thought of trying to keep everything stable?

What type of tests or x-rays should I ask for to find out exactly what is going on?

I am so far out of the loop so sorry about not putting in technical or medical terminology as I have had my head in the sand about this.

I have had physio but this does not seem to do anything as I am still completely restricted with my day to day movements.

Thank you

Offline tanyap

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Re: Cramping, instability. Patellas dislocate. Need advice Adelaide
« Reply #1 on: August 16, 2007, 12:47:10 PM »
Hi Emloupe,

First of all - Im sorry youre knees are giving you such a hard time. I suffer from recurrent dislocation of the right patella, have been operated on, 19 years later, still have problems.

You dont mention how long it is since you have seen an OS.
You need to be referred to an OS to discuss your situation immediately. You need to be educated in what is going on in your knees, why, and what can be done about it.

The secondary problems of cramping/being unable to bear things touching your legs - these issues may look after themselves if you actually get your knees sorted out.

Please go to your doctor and ask for a referral to an OS as soon as possible. you cannot live your life like this!

1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline emloupe

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Re: Cramping, instability. Patellas dislocate. Need advice Adelaide
« Reply #2 on: August 16, 2007, 01:26:12 PM »
Hello Tanyap
Thankyou for your reply. I can't believe you had 150 dislocations in 2 years. What a nighmare. I don't know how you have dealt with that sickening pain that many times. I have only had 20 or so full dislocations that required manipulation from a Doctor for realignment. I admire you so much. I will try to find an OS. I will start seeing if I can find information about someone suitable in my area.
The last time I saw an OS was when I had my operation 15 years ago. I have been too frightened to go back. I have not had the screws taken out.

Offline Leentje

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Re: Cramping, instability. Patellas dislocate. Need advice Adelaide
« Reply #3 on: August 16, 2007, 01:43:08 PM »
First of all You need to relax those muscles!! Really!

Secondly, train them (the muscles) so you can keep your kneecap on track. Getting musclesspasms won't resolve the problem but it'll aggreviate it.

Can't help you on recommending an OS, sure you'll find one.

Had realignment myself 5 years ago, wonderfull results, same problems as yours. Used to dislocated even turning around in bed or take a misstep.

Hope you'll find some help soon and the knees will settle down.

Helena
Bilat patellar malalignment/PFdysplasia
00/06/83 L wrist #
11/12/00 L knee LR + chondroplasty
21/08/02 L knee TTT
02/03/04 L knee stretched PCL
11/09/07 L ankle dislocation/medial avulsion #
25/05/09 L ankle medial avulsion # AGAIN!
05/06/13 R ankle dislocation

Offline tanyap

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Re: Cramping, instability. Patellas dislocate. Need advice Adelaide
« Reply #4 on: August 16, 2007, 01:58:14 PM »
i never got the screw taken out either - bone has grown over it - it doesnt bother me at all.

my 150 dislocations arent as bad as they sound, my muscles had becme so weak from my 'guarding' them that my kneecap would just slide out of place, i never had to get anyone else to relocate it - id do it myself.

helena ktf is absolutely right - muscles can be trained. im currently trying to awaken my VMO - its been sleeping for a loooong time - in the past 10 weeks you can see there is a difference in muscle bulk - but its still not firing automatically so im still quite gammy legged getting around.

dont be frightened about going back into the medical system - they are there to help you. it is much more frightening to leave the problem there and not have it addressed because things will just continue to worsen.

because you are tensing to try and control things you are actually locking those muscles in position and not 'using' them - therefore they will weaken - its no wonder you are experiencing instability - im exactly the same, wasnt even aware i had been trying to protect myself until my dislocations suddenly became very frequent, saw a physio and her reaction to my right leg was 'look at the state of your quads' - i could not even extend my right leg - id been using it like a pole for god knows how long, never putting any weight through it in a bent position and as a consequence the muscles just wasted away.

your brain performs 'muscle inhibition' to prevent you from using a muscle after injury. all your dislocations have probably sent your brain into constant inhibition mode. you are tensing muscles that are probably so weak that they cannot take the strain.

none of this is a conscious decision on your part - dont feel frightened about having it addressed - the brain tries to protect the body, compensation is an unconscious mechanism.

definitely get yourself a consultation. i wouldnt worry too much at this point about who you see. you need to make a start - start with your regular doctor, you will be referred, if you dont like the OS you are referred to you can find another. but its important you get on the road to recovery.

youve done very well to make a start on this website - thats a great first step - you have recognised that there is a problem that needs to be addressed.
you will get loads of support here. keep posting, and let us know how you get along finding some help for your knees.

1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline Silkncardcrafts

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Re: Cramping, instability. Patellas dislocate. Need advice Adelaide
« Reply #5 on: August 19, 2007, 05:17:33 AM »
Hi Emloupe,

Before seeing an Orthopaedic Surgeon I'd recommend going to see a good sports physician that specialises in knees. They may have some good ideas for you. They often have a much better understanding of these sorts of problems. I get very annoyed when doctors just say it was growing pains. You've obviously got loose ligaments which predisposes your joints to come out. I have loose ligaments and I only got onto the right doctors about 5 years ago. It is also important that you go to a physio that specialises in knees, particularly patella problems.

Like you, I have had patella instability for a long time. I have been managing the problem for over 13 years now in both knees. I am pleased to say that I don't require anymore surgery at this stage after 6 operations over 13 years and maintain my knees by doing regular exercise including clinical pilates, gym and the hydro pool. I am pleased to say that I can run a bit too. In Melbourne I'm working as a sports trainer for a VFL team and need to run a bit. Thankfully I've had a top knee surgeon in Melbourne and also see a great sports physician that works closely with my knee surgeon. It's a far cry from where I was 9 years ago when I couldn't walk and was using crutches all the time.

I understand that Sportsmed SA has some great sports physicians and knee surgeons.

Good luck !! :D
« Last Edit: August 19, 2007, 05:19:10 AM by kjwilkin »
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 tanyap

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Re: Cramping, instability. Patellas dislocate. Need advice Adelaide
« Reply #6 on: August 20, 2007, 09:27:17 AM »
hey kjwilkin,
how are you doing?
i havent been on my home email in a while - the home pc was out of action for a week or two - ill be back on that account this week.

hope all is well with you? you sound great in your posts!! very upbeat!!

im doing well - knee is aching a lot - the cyclying is great during, but i get stiff and sore after..... but nothing that would put me off!!

im back with my physio aug 27th so probably get the isokinetic testing done again....
tanya
1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline Silkncardcrafts

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Re: Cramping, instability. Patellas dislocate. Need advice Adelaide
« Reply #7 on: August 20, 2007, 11:56:42 AM »
Hi Tanya,

I'm doing pretty well. Although I had a car accident last week which has put my shoulder rehab back about a month. So, very disappointing. Fortunately my knee doesn't seem to have been too badly impacted by the accident. Am back to doing physio twice a week until my shoulder and neck settle down from the accident. My shoulder is very sore after the physio I had tonight, but hopefully it should be feeling better tomorrow.

Saw some of your other posts and glad your surgeon isn't going to operate at this stage. Keep up the good work !! I think my knee surgeon will be really surprised with my progress when I see him at the end of October.

I accepted a new job on Friday and should get the contract tomorrow. So, things seem to be coming together which is very pleasing.

Keep us posted on your progress !!  :D
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















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