The SPECIALIST'S OFFICE => Joint hypermobility disorders => Topic started by: victoriacat on July 14, 2013, 05:12:50 AM

Title: Maltracking Frankenstein Knees
Post by: victoriacat on July 14, 2013, 05:12:50 AM

I injured my knees over 20 years ago.  I did not know I was hypermobile.  No one knew about those things years ago.  Since that time, I have slowly lost mobility.  I lost the ability to stand up using my knees only.  I have to push myself up and put as little pressure on my knees as possible.  I have not been able to climb stairs in years. I could still walk as much as I needed to get things done, and I could be on my feet for an hour at a time.  Physical therapy helped over the years.   I was okay with this arrangement until the pain increased at a faster rate in my late 40's.   I know things loosen up in menopause.   PRP injections were a godsend.  They really tightened up my ACLs and my knees had not felt this good in years.  I still could not climb stairs and I still had to push myself up from a sitting position, but I was thrilled.  I could take long walks again.  They felt so good, I started climbing stars and inflamed them so badly.  I became bedridden.  The pain was horrible.  My knees were severely inflamed.   The doctor said I have maltracking patellas.  Back to physical therapy.  They came back.  My knees were starting to feel "normal" (for me).  Then I went to a social gathering and stood for a long time.  The next day I was bedridden.  Horrible pain.  Had to bend my knees while standing. I could hardly stand for a minute.   My knees felt like there was cotton in the joints.  I spent most of the day in bed.  Back to physical therapy.  I regained some mobility.  I have a full ROM again, but my knees feel like something resurrected from the dead.  They hurt and I have had to drop most of the exercises as my knees can no longer tolerate them. I have to spend a lot of time off my feet to keep the inflammation down.  I can't afford to become bedridden again.   I do shallow squats to keep muscle strong so I can get around.  Nothing has ever dislocated and the rest of my joints are fine.  No one I know has knees like mine. People say "Oh, I have bad knees" but they bike, run and ski.  My knees are nothing like that.  They seem to lack a solidity that others have, like they are made of paper mache, or something.  I am looking at knee surgery.  I have exhausted my nonsurgical options and if I do nothing, they will simply get worse.  I try not talk too much about this to my friends.   I have been checking out knee surgeons who work on hypermobile knees.  Dr. Steadman's assistant in Vail, Colorado is supposed to call me back on Monday.  I have a whole list of questions.  I just wanted to get this off my chest.   Thanks.  Vickie
Title: Re: Maltracking Frankenstein Knees
Post by: victoriacat on August 14, 2013, 09:23:12 PM
Update:  I am signed up for knee surgery in Michigan, in the US at the end of August, 2013 (this year).  This orthopedist has a special interest in patellofemoral disorders (so many surgeons don't know much about them) .  It is possible, in addition to the alignment, I will have a patellofemoral joint replacement since there is arthritis and wear and tear in back of the kneecap. A PFJR is less drastic than a total knee replacement.   He states that unless the knee is properly aligned,  the problem won't go away just because a new groove and clean patella backing are put in the knee.  He has also operated successfully on people with hypermobile joints.  He suspects that since my right knee is the worst,  I had a lateral release years ago in addition to debridement when I had it operated on.   I will post in a few months.
Title: Re: Maltracking knees: Surgery performed
Post by: victoriacat on August 31, 2013, 11:00:33 PM
On August 30, I flew to Michigan and was seen by Dr. David Shneider, who has 30 years of working on patella problems.  It is his specialty. He has operated successfully on hyper mobile joints.   He operated on my right knee and found that the maltracking was caused by a tendon that had grown in the wrong place and was tight, causing the patella to pull to one side.  I did not need a PFJR or full knee replacement.  Not much arthritis under the knee cap.  No scar tissue.   The next day, the hospital nurse had me  up and walking a bit with a walker and my knee in an immobilizer.  I did not need any pain meds.  I flew home by myself two days later.   I had minimal discomfort, and the airline staff was very helpful with wheelchairs.  I sat in the bulkhead rows so I could stretch out and elevate the leg.  Dr. Shneider does not want me to start physical therapy for another month.  I am to work on gently getting the knee to bend and do quad squeezes to wake up and strengthen the muscle.   I stay in the immobilizer for a month.   Three days after surgery,  I am up  every 1-2 hours and walk around the house with my walker.   My knee is bending at a 90 degree angle.  The pain is mild, really mild compared with the intensity several months ago, so it does not  really bother me.   I'll post later.
Title: Re: Maltracking Frankenstein Knees
Post by: victoriacat on November 15, 2013, 07:49:52 AM
It's been 2 1/2 months after surgery.  One and a half months ago I was using a walker and a immobilizer.  The rehab can last as long as 6 months.  I know a knee replacement is about 5 months of rehab. The swelling is down somewhat, and I  am in physical therapy.  It's nice to have a right knee that is not constantly a bit stiff when walking.  The therapist is careful and not aggressive since he knows my history.  He is impressed with my ability to walk without a limp. He likes the surgeon's work; he says the knee cap glides nicely now. I work on strengthening every day.   However, I am far from being able to walk as much as I would like.  When my knee gets to a certain level of pain, I get off my feet, throw my weight on the other leg when standing.    There is no "pushing past the pain" with my knees.  If I do that, the pain simply increases and my stride simply decreases when walking.  Too much inflammation at that point.  I read about people who are in great pain after knee surgery and taking pain meds.  I wonder if some are simply not honoring where the knee is in the healing process. It's too early to assessment the success of my surgery.  Although there are knee diary categories on this website, I am posting mine here because I do have hypermobile joints and they are a different animal.  My goal is to be able to take long walks again.  Nothing fancy.  I'll post in a few months again.
Title: Re: Maltracking Frankenstein Knees
Post by: victoriacat on March 15, 2014, 07:13:46 PM
It has been seven months since my successful surgery to realign the patella in my right knee, and it has been nothing short of a hypermobility rollercoaster since then.  After six months of rehab, I realized that although the kneecap was tracking better, I did not have the mobility or strength I anticipated.   SURPRISE! The hypermobility overshadowed most of the surgical progress.  There is certainly no reason to have the left one done.  Besides, it isnít as bad as the right one was.   I have already compromised the right one with two surgeries.  Then about a month ago, I inadvertently inflamed both knees walking through a rocky, dried riverbed and landed back on the bed, crippled, in severe pain, legs straight out, with maybe an hour of day on my feet and not continuously.  This has been happening for the last two years.  I do the exercises, get back some walking ability and do one thing which undoes everything. Itís not like I am careless.  Keeping these knees functional for the last 3 years has been like trying to unlock a door with a boiled carrot.  Then it takes two months of exercise to get my knees back to a relatively pain free state and some decent mobility, all the while, overall, I am losing the ability to walk as the joints continue to loosen up.  So I made an appointment with my doctor who did my platelet injections in my knees several years ago.  He assured me they would still work.  The knees were already inflamed badly.  The shots made things even more painful.  It took a wheelchair to get me back to the car and then from the car to the bed.  Over the next few days, the platelet inflammation slowly receded.  Seven days later, I obtained permission from the doctor to start a gentle exercise program.  I decided not to use a physical therapist.  I would go broke if I had to use a one now.   I do have Obamacare, which I am grateful for, but I donít have the Rolls Royce health insurance I had when I was working.  As you probably guessed, by the last sentence, I live in the USA.  I put together a gentle, low resistance program from all my vast knowledge accumulated over 20 years of physical therapy when I had good health insurance.  I read one a website that says exercise helps increase the efficacy of the platelet injections.  For me, reps and resistance are increased very slowly over weeks.  For example, the 10 squats I do each day will increase to 11 next week.  Better safe than sorry.   Then, right on target, two weeks later, I am feeling the positive effects of the platelet injections.  I respond well to them, thank goodness.  The major pain is gone.  I can get off the bed more frequently.  I can now sit at the gardening table and work, even with my knees somewhat bent.  I can sit at the sewing machine.  I can work in the garden in the front yard.  I can run an errand a day.  Over time, as the lax connective tissue tightens up, I will be able to walk even more, but continue to be very careful.  The new rule:  No more stairs or walking on uneven ground, ever.  The plan is to have platelet injections every six months, indefinitely.  I will always have to be careful because even though the connective tissue becomes tighter and stronger, it is still mine and still defective.  Iíll post in a few months. 
Title: Re: Maltracking Frankenstein Knees
Post by: MDAL on April 05, 2014, 10:37:20 AM
One question Victoria, you mention PRP every 6 months, do you mean a series of PRP every 6 months, or 1 single injection every 6 months?

I did 6 consecutive PRP shots 1 week apart, and it helped a lot both tendons and pain. Well, I did have the typical reaction for 3 days after each shot, which gets sored and inflammated, but anyway, I get the same reaction with any shot, including Hyaluronic Acid.

But once it clears out (couple of days), it improved greatly.

One thing I noticed with PRP, is that before I had the knee always inflammated for 1 year (since surgeries), and 6 days after the first shot, the knee was amazingly clear of tenderness (I was like... what the hell happen here?!?). It was the first time in a year that I could clearly feel the side and lateral texture of my patella, and other bones around. Pain improved dramatically too.

After the the full series, I can say that the results were far better than I expected. I am still dealing with a lot of atrophy and a bit of hypermobility, I can move the medial side of the tibia back and forth, but everything is incredibly weak even my quads, because I was immobilized for months, and I am still fighting all the atrophy.