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Author Topic: Hypermobility & MPFL Surgery Complication  (Read 6794 times)

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Offline vmarie

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Hypermobility & MPFL Surgery Complication
« on: January 24, 2009, 02:54:48 PM »
Hi, I just joined and have been reading about so many other people's challenges.  It feels great to know that I am not alone.

I had surgery in Oct 08 and am in dire need of help.  Something went terribly wrong and I can not articulate to my doctor what I am going thru.  I don't know if it is my quad or the  new medial patellofemoral ligament that I have but something keeps pull my newly realigned kneecap to the inside of my leg  I don't know if it is a spasm, quad engaging or what.  I am in an immobilizer and if I take it off just to try to bend my leg, my legs twists and the pain is so excruciating, I can hardly stand it.  I have benign joint hypermobility syndrome and have numerous dislocations.  I had 4 surgeries on my right knee and right ankle and nothing happened like this.  This was a different procedure and now my quality of life is going down the tubes.  Can someone please direct me or help me figure out what I should do next.  My home PT has no idea what could be causing it and I think my doctor disqualifies everything I have to say.  Please let me know your thoughts.  Thanks, Vmarie :'(

Offline Silkncardcrafts

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Re: Hypermobility & MPFL Surgery Complication
« Reply #1 on: January 24, 2009, 04:48:06 PM »
Hi there,

It sounds really weird what you are experiencing. Like you I have hypermobility syndrome and have had numerous operations for my patella instability on both knees.

I am surprised that you are still in an immobilizer several months post-op. Am wondering if your kneecap is medially coming out. I had surgery in May 2008 to fix medial instability of my knee cap in my left knee and has worked really well. Doesn't sound right though what is happening with your knee. Have you had any scans done ? If so, what have you had done ?

Whereabouts are you located ?

It doesn't sound like your OS is listening to you at all. If I was you I would definitely be getting another opinion. Try and find someone that specialises in patella problems.
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 vmarie

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Re: Hypermobility & MPFL Surgery Complication
« Reply #2 on: January 25, 2009, 02:17:32 AM »
Thanks for your reply KJWilkin.

I am seeing someone who came highly recommended in the Twin Cities of Mpls/St. Paul.  My surgeons that performed my other surgeries moved and practiced elsewhere.  They are now back and I am hoping to call both of them Monday because now I am really scared.

I am in an immobilizer because if I take it off to use a CPM machine, my legs twists like a pretzel and I am in so much pain, I can honestly hardly breathe.  I have only had an xray but may ask for a detailed scan of one of the two Dr's that I call.  When you say medially dislocating, what do you mean?

I have separated my shoulder dislocated my jaw and have degenerative disc disease in my back.  None of these conditions compare to what I am going through right now.  My current surgeon admitted that maybe she did too much now bettering understanding the extent of my hypermobility.  I have to admit, I was excited to see a response because I am really nervous, anxious, scared and have insomnia because of it.  My quality of life is really going down the tubes and I feel extremely hopeless.  I am going to keep the faith and hope one of my previous surgeons can help.

Offline Silkncardcrafts

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Re: Hypermobility & MPFL Surgery Complication
« Reply #3 on: January 25, 2009, 09:39:02 AM »
Hi,

I appreciate what you are going through. Something definitely isn't right.

Your surgeon obviously does not have a very good understanding of your hypermobility. Fortunately my OS understand my loose ligaments and hypermobility very well. I can't believe they didn't ask you more questions about your hypermobility and past history. Sounds a bit incompetent to me.

I definitely think you need more than x-rays. What is your current OS's plan for you at the moment ? Just makes me wonder if something wrong happened during surgery.

When I say medially dislocate the knee cap goes inwards, not outwards which normally happens. You shouldn't be having so much problems a couple of months after surgery.

Try not to worry too much. I am sure there will be a solution. :)
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 vmarie

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Re: Hypermobility & MPFL Surgery Complication
« Reply #4 on: January 25, 2009, 01:49:34 PM »
Thank you for your words of encouragement. 

My Dr admitted during my first post op visit that she did too much too soon and did not fully grasp the true understanding of my condition.  Right now, she wants me to wear my immobilizer when I walk but try moving to a hinged brace.  Immediately after surgery, this sort of thing happened when I was in a hinged brace.  She wants me to put the hinged brace back on an use the CPM machine to bend my knee.  I was doing that for a while and something has aggravated my leg and now I am back to this thing that continues to happen even when I just take my brace off just to adjust it.

You've helped me find hope and strength and I thank you for that.  It is just really difficult when I try to do something without my brace and am not ready for the medial dislocation.  When it happens and I scream out in pain, my poor youngest daughter is so compassionate that she just hugs me and cries with me.  I know this too shall pass.

My plan is to see one of my previous Dr's as quickly as possible.  Thru the grace of God I am able to work from home, so that is one less worry.  Now, I need to focus on the best method for recovery.  Interestingly enough after surgery, I was suppose to be in the hospital overnight and it ended up being 10 days.  All because of what is continuing to happen now.  It feels like a dislocation but my Dr told me that it could only happen on the outside of my leg.  Now, I need to do some research on medial dislocations. 

How are you doing with your hypermobility?  Many challenges because of it?

Offline vmarie

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Re: Hypermobility & MPFL Surgery Complication
« Reply #5 on: January 27, 2009, 11:34:45 PM »
So I went to see a different Dr today.  I can't figure out why they don't believe my patella is dislocating medially.  I have no idea what I should do next.  :P

Offline Silkncardcrafts

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Re: Hypermobility & MPFL Surgery Complication
« Reply #6 on: January 29, 2009, 03:01:34 PM »
Hi there,

I really feel for what you are going through right now.

What did the second opinion say ?

You really need to get some other scans done to work out what is actually going on with your knee. Wish you were in Australia and could go and see my OS as he is great with difficult cases. I can tell you now that medial instability does exist as I have had it as a result of a complication from lateral releases on both knees. My left one is fixed but the right one still does it. Not sure whether I will have surgery to fix that one too. Still trying to recover from my op last year. You also need to find a surgeon that believes in medial instability. Otherwise, they will not know how to fix it. Telling you that only lateral instability happens is just rubbish. I get really angry when health practitioners think that. It's a rare condition but does exist and can be fixed. In most cases further surgery is need as it generally won't heal on it's own. The options for surgery depend a lot on your own anatomy. I know that Dr Teitge believes in it and has helped a number of people on this site.

Something just doesn't add up to me.

My hypermobility is constantly a challenge for my doctors and I to manage as any injury I sustain often takes a long time to recover. At present I am still recovering from a car accident I had last year. In addition to my knee I also injured my back and shoulder. I have been told that if you have loose ligaments that you will have double the impact from a car accident and takes longer to heal. It is important that your doctor understands this condition properly as being too aggressive with treatment often doesn't work as you have already experienced.
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 Helen_ uk

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Re: Hypermobility & MPFL Surgery Complication
« Reply #7 on: January 29, 2009, 03:39:07 PM »
Hi
I am an oldy here returned so a bit of a newby to alot of you. I moved last year broke my lap top and had to get e new one.. only just got it and now back in the fold Phew..
i have hyoermobility and have had since my teens {now nearly 45}. I am diagnosed as billateral multi directional joint instabilty and bilateral hypoplastic displasia.
My joints arent formed properly so with that and the joint hypo am pretty much and enigma.
So medial dislocation... I used to present at casualty with this and they would look at me and say yes laterateral disloaction, now I ahvent been to medical school but I could clearly see the dislocation was on the inside and sadly took along time and actually having to demonstate this to my surgeon.... not nice.
So yes what your saying is extremely painful and dibilitating.
You really need someone who knows a fair bit about your condition or is prepared to take an interest in your condition and help and listen
Any help I can give dont hesitate to ask.
Unless someone has been in this situation I dont think they can comprehend how dibilitatating it is and how it can affect your quality of life

H xxx
Facing my  66 th operation. Psoratic arthritis hyper mobile joints.Permanantly disabled but mobile thanks to skill and patience of a lovely surgeon.Married with two daughters.Had unstable and shallow joints had tiny knee caps now removed. constant battle to stay mobile using crutches or wheelchair.

Offline vmarie

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Re: Hypermobility & MPFL Surgery Complication
« Reply #8 on: January 30, 2009, 03:56:25 AM »
KJ & Helen,

Thank you both for writing to me.  You are helping me keep my sanity.

The Dr that I saw on Tues will not dispute what my orig surgeon said.  When I told him that I spoke with people via the web who have hypermobility and have dislocated their patella medially, he really had nothing to say.  I was in so much pain because it had happened again Friday night and was still extremely sore, I refused to have him touch me because he didn't believe what I was saying.  I do think that I may have found a ray of hope.

I have found a Dr. in Michigan who is willing to see me.  He believes and knows that what I am saying to be true.  I am going to ask for copies of my records including xrays pre & post op.  I am hoping my insurance company will pay for some of it but am not sure.  I just have to foot the bill for a trip from Mn to MI.  KJ, I too wish I lived in Australia.

In this world of technical advances in science and medicine, why is it so difficult for supposed world reknown Drs to find that they have something to learn from all of this.  This is what perplexes me the most.  Having spent 10 days screaming in a hospital and now experiencing some of the worse pain in my life, the mental pain of not being believed is far more tramatic.

How are you both handling it all with your hypermobility?  Do you find that anything helps with pain?  Are you concerned about the heart condition that can accompany hypermobility?  Just curious. 

I have decided to go back to school and get a Master's in Healthcare Admin. so that I can be the one who helps people from facing what I am facing.  And to tell them that there are some amazing people in the world such as yourselves who help a stranger through very challenging times.

For this, I am extremely grateful.

KJ - Are you doing okay?   You said that you were in an accident and are recovering slowly?  I pray that you are not experiencing too much to bear.  You are always so uplifting in your writing, no one would ever guess you have your own cross to bear.

I wish you both well.  I'll write again soon.  Thanks again for your words of encouragement.  I sincerely appreciate it.

Vmarie ;D

Offline Silkncardcrafts

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Re: Hypermobility & MPFL Surgery Complication
« Reply #9 on: January 30, 2009, 03:30:29 PM »
Hi Vmarie,

Half the battle is often finding an OS that understands your problem and is willing to help.

I will send you a PM with the details of my OS. If you email him he should be able to help in giving you some names of some top OS's in the US that specialise in patella problems that understand medial instability. He's listed on this website. I know that a member on here emailed him and was very helpful.

It has been really hard to find a way of treating my medial instability. Fortunately the trochleoplasty I had in May last year has made a massive difference and no longer happens. It was really the last option as conservative treatment had failed miserably and two other operations I had didn't help. My knee surgeon is a magician I think.

With hypermobility it is really important to keep active. I go to the hydro pool regularly, do a gentle gym program and also do clinical pilates. I find clinical pilates is one of the best forms of exercise with this condition. There are some many things you can do. I was concerned about heart problems after I had to go to an independent medical examination for the TAC. TAC stands for the Transport Accident Commission and are supposed to pay for reasonable cost of treatment from car accident injuries. They sent me for an independent medical examination and the OS I saw started talking about it and really freaked me out. He was an absolute arsehole and damaged my knees, which is another story altogether. I spoke to my doctor about it and said that I don't have enough symptoms to warrant further testing. So, I was extremely relieved. He said they would have tested me a long time ago if they thought there was a problem. I find by keeping active helps keep my pain at bay generally. Using ice packs and heat pack also helps. My situation is a lot more complicated by the fact that I have had 2 car accidents in the last 18 months. When you have hypermobility it takes much longer to recover from things such as car accidents. I was told by a doctor at A&E when I first had my accident that you get double the impact.

At the moment I am struggling quite a bit. I re-injured my knee about 7 weeks ago and the conservative treatment really isn't helping much. I have hurt the postero lateral corner of my knee. Seeing my knee surgeon on Monday and can't come soon enough. Just hope he can do something. I had a car accident last year and sustained injuries to my knee, shoulder and back in the accident. My shoulder and back have not been very good since being back on crutches. The TAC who are supposed to pay for reasonable costs of treatment are a nightmare to deal with and are really stalling my recovery. I've had to get a lawyer to help deal with some of the stuff as they are just so incompetent, it's not even funny. Also applying for a lot of jobs at the moment as my current one finishes at the end of next week. So, I guess I am under a lot of stress right now. Fortunately I have a week's holiday planned after I finish at the end of next week. Am going to Newcastle and the Myall Lakes to some friends and family. Can't wait !!!

Helen, I read somewhere that you have had over 60 operations. How come you have had so many ? I've had 11 operations since 1996, which has included 5 on my left knee, 2 on my right, 2 on my left ankle and one on each shoulder. So, I know how frustrating and trying it can be. My doctors only consider surgery as a last resort if conservative treatment fails and is no other alternative.

Hope this gives you some food for thought.

Have a good weekend. :)
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