Severe Patellar Tendonitis and Patellar Baja - New to Board, Help!!

[srick]

I had arthroscopic knee surgery last August for a torn meniscus.  I also had to have a lot of shaving under the knee cap to smooth it up.  I had a lot of swelling from the get go.  Seemed to me to be more than the norm.  During my third week after surgery, the doctor started me on physical therapy.  That is where my problems seemed to start.  More swelling immediately.  I had to wait a week or so to start again.  ROM and strength were poor.  Then the therapist started E-stim on my quads to make my muscles contract and had me do leg lifts at the same time.  This became immensely painful.  I told him of the pain right below the knee and the joint line, but he continued this therapy.  It finally got to where I couldn't do the leg lifts at all and he would lift my leg for me during E-stim.  At my 6 week checkup with the surgeon, I explained to him I seemed to be getting worse and below my knee cap was killing me.  He gave me a steroid shot, oral steroids and told me to take a week off from therapy but then to go back because he thought it would help.  He did say that some people have an adverse reaction to physical therapy, but didn't think that was what was happening.  Continued my therapy and just got worse.  My leg eventually got so weak and my extensor mechanism became nonproductive.  I cannot extend my leg and my quad muscles have atrophied. My doctor released me in November and I told him that my knee was weak.  He told me it would come with time.  My knee began giving out on me and I started falling.  I went back to my surgeon and told him something had to be done.  When he realized that I could not extend my knee at all he became concerned, finally.  He did X-rays, a bone scan, and hit my patellar tendon so hard with his little hammer, I was in tears.  He said I definitely have tendonitis.  He thought I had RSD and referred me to another doctor.  This doctor also did a nerve conductor test and ruled out RSD.  He finally did another MRI which showed I had severe patellar tendonitis and progressive patellar baja, and a decrease in the size of the fat pad of Hoffa.  This doctor has put me in a knee brace where I can't bend my knee and has me on crutches.  He said I had to rest it - for a long time.  He started doing ultrasound therapy on it and it started swelling up.  He basically has shaken his head and now tells me to be off work for 1 year and apply for long term disability.  It seems to me that anything that is progressingly getting worse and decreasing in size, should not just be left to heal itself.  I am at my wits end with the doctors and the pain.  Please, anyone who can help, I would love to hear from you.

[Heather M.]

Your story is just about an exact duplicate of so many of us who are suffering from excessive scar tissue, patellar tendinosis (it's not tendinitis after it goes on this long) and the dreaded patella baja.  I'm afraid that this is a pretty rare condition, and very few doctors know how to treat it properly--as you've just seen.  I WOULD NOT WAIT if I were you--the longer your knee is in the baja position, the more chances you have of developing permanent changes.

Where do you live?  Can you travel to see a specialist, especially if it means getting your life and your knee back?  In the interim, while you look for a good orthopedic surgeon, can you find a GREAT physical therapist who has a lot of experience with patellar taping and dealing with tough cases?  Usually these are found in the smaller PT clinics, but it takes some time to find a good one.

I strongly recommend that you go to the Soft Tissue Healing Problems section down below, and read up on arthrofibrosis (excess scar tissue), patella baja, and related topics.  You will see a pattern:  people told they are not working hard enough, that they have nerve damage (HA! Total cop out!), and that things will get better if they either a) push through the pain or b) wait around for the pain to end.  I can't stress enough to you how important it is to be seen by a doctor who has a lot of experience dealing with this problem.  It's one of the toughest complications you can have in orthopedics, however you are right in the 'window of opportunity' where you can be benefitted dramatically from appropriate surgical intervention and physical therapy.  The philosophy of the therapy is NO PAIN, NO SWELLING.  As you've seen, pushing through the pain doesn't help, and can make the problem worse.

If you can post the region where you live, we can hopefully point you to the appropriate surgeon.  You may well have to travel--I'm leaving in five days (gulp) to travel 1000 miles to see my current surgeon, who specializes in tough scar tissue and patella baja cases.  I know it's stressful and expensive and painful to travel for treatment...but so is getting worse and worse and being written off and abandoned!  People on this board who have seen the right kind of doctor within 6-12 months of onset of their scar tissue problems have done well--they are back running and skiing.  People like me, who waited and lost valuable time seeing doctors who had no clue how to treat this problem (or worse, said it was tendinitis and/or nerve damage and/or IN MY HEAD) have had permanent complications set in.  The longer your knee sits in the patella baja position, the harder it is to treat...and the greater the chance that it will stay like that.  I know you don't want that!!

Let us know where you live and what your potential to travel for proper treatment is.  And maybe we can recommend a surgeon and a PT to help you.....

Heather

[hottubpam]

srick,

Heather is right!!!!  You need to get to an orthopedic surgeon who has experience in dealing with scar tissue (arthrofibrosis).  I went through much the same treatment(s) as you from my first and 2nd surgeons, but then I found this bulletin board and did the research and found a dr. just a few hundred miles from where I live.  If I hadn't incurred the additional expense and hassle of traveling out of state I would be in really bad shape right now.

However, I'm one of the success stories because after all I went through I am back skiing.  I was in the 6-12 month window that Heather talks about and it looks like you are too.  Don't waste a minute.  Post where you live and maybe someone on this board can recommend a competent OS for you.

Pam

[srick]

Thank you for replying.  I live in Springfield, Missouri.  My insurance is through a HMO and am limited to the doctors I can see and I don't have thousands of dollars myself to go out of my network.  I have decided that I probably need to get a second opinion and see if that doctor will do anything.  None of the doctors that I have seen have said anything about scar tissue build up.   Would that not show on an MRI or something?

[hottubpam]

srick,

Sometimes scar tissue shows up on an MRI sometimes it does not.  You need a very skilled OS and/or radiologist and a
"state of the art" MRI machine to even hope to detect it.

You might read the "fine print" of your HMO policy, if you do have arthrofibrosis it is such a rare condition that maybe your policy will cover you to see a "specialist" that has dealt successfully with scar tissue.

Pam

[bajalady]

Srick,

I can't figure out why you are in a brace. To keep you from falling?

Progressive baja is just what it sounds like. Your patella willl drop lower with time. Hope you can get to somebody (OS) who can help you.

There are some who go to a big orthopedic place in Kansas City. Cannot remember who. Post somewhere else on board like over on the soft tissue area and title your new thread something like "NEED MISSOURI OS!"

In progressive baja, the fat pad and sometimes the tendon itself contracts and keeps on contracting and down goes your patella. Also called fat pad contracture when the tendon is not as involved.

***OK HEY scar tissue patients on board-----if this is so rare, I gotta ask, why do we have so many new posters on with OUR nasty little problem? Have you guys noticed this? What we need is a good lawyer with a bad scarred up knee to change some medical insurance guidelines to include "arthrofibrosis" OS subspecialists on all the provider lists!

HEATHER M go to law school! 

Callie

[Teresa_S]

Srick, I am not sure from the description of your surgery, how you developed the complications that you seem to have. I, too, developed the swelling that just would not go away, and the PT seemed to make it better for about 2 weeks and then it just went backwards, and the swelling continued to increase.It sounds like you need a good second opinion, BEFORE deciding what is even wrong. It is not uncommon for surgeons to desert us , unfortunately, but to give you a brace and just say rest if for a long time, is strange. I don't think the brace is going to particularly help, unless he is using an unloader brace for some reason, to switch the weight on the knee. I, too , live in MO, and in a small rural area with a PPO insurance company. IS the Univ. OF MO on your HMO?, IF so, there are several NEW physcians there that have arrived in the last 6 months or less. You might try there, or there is the Univ of Kansas, where Dr. Munn is, and if you haven t had multiple procedures, he might be an option, but he just dismisses those with multiple procedures. The other groups that are private in Kansas City, would have to be part of you insurance HMO. Also, with an HMO, I believe you can ask for a referral for an orthopedic consult.Also, the University has outreach clinics in Jefferson City, and may have one at the Lake. You would need to check their website and get the names of the OS and then check them against you HMO list. Teresa

[Heather M.]

I think there are a lot of logical explanations for why so many arthrofibrosis and baja patients are concentrating here--it's the beauty of the Internet, the great funnel.  If you go to a search engine and type in 'arthrofibrosis' or 'scar tissue knee' or 'patella baja' then Kneeguru is the first web page to come up--in the US, UK, Europe, Australia and the English speaking world in general.  So we have hundreds of millions of citizens who, if they looked up arthrofibrosis, would be directed here.  It's the law of averages.

I also think national health care, HMO's, and insurance plans that involve long waits, delayed PT, limitations on number of visits, etc., sets up a situation where arthrofibrosis can grab hold in knees.  Some people don't see their surgeon for 4-8 weeks after a procedure!!  And they're lucky to get a medically competent person to remove sutures.  4-8 weeks post op--that's plenty of time for arthrofibrosis to set in.

Finally, I really believe we are seeing an epidemic of knee problems and procedures on women between 20 and 45...the 'Title IX Knee' is what my dad calls it...those of us who were in public schools between 1975 and 1990, and who played for the first time all the sports that had previously been reserved for boys...like soccer, basketball, softball/baseball, track and field, etc.  It was in about 1990 that surgeons started realizing there had been a huge surge in female knee injuries--and these doctors discovered that girls have different knee mechanics and need different protections than boys!!  Now these same girls, with the Title IX knees, are reaching their late 20's and early 30's, some into their 40's...the time when articular cartilage problems suddenly start to become painful.  That subluxing grind and snap that for decades hasn't hurt, starts to ache a little bit.

And we all know that once you go into a knee--especially for a traumatic patellar realignment--you've got a chance of developing scar tissue.  Pair that surgical risk with the HMO/insurance limitations on PT, and I really think you set up a disaster waiting to happen.  And it's happening to some of us.

Anyway, that's my opinion on why we have so many arthrofibrosis cases on the board.  It's the power of numbers.  If 4 million people each year have scopes (just scopes, not including open procedures) and if approx. 1/2 of 1% of scopes end up with a person having arthrofibrosis, that makes for 20,000 cases in the US alone each year (4,000,000 X .0005 or 1/2 of 1%).  20,000 is a large number if you're all together in one place, but considering the number of scopes done each year, 20,000 is a VERY VERY SMALL GROUP.  You can't look at the absolute number and say "Wow, there are 20,000 people who developed arthrofibrosis after a scope, it's not rare at all."  Because you have to look at the group of scope patients overall.  20K compared to 4 million is a tiny number, one half of one percent.  That qualifies as rare.  Now, there are lots and lots of other arthrofibrosis patients who had open or mini open procedures, like TTT's and ACL recon with open incision for patellar graft, and tibial plateau fractures, etc.

It's all a numbers game.  If only 1/4 of all scope patients with arthrofibrosis goes to the Internet and does a search, that's still about 5,000 patients a year that might come to THIS web page!

Heather

[bajalady]

Heather,

I wish you the best of luck with your surgery.

And then----go to law school!!!!

Callie

[Heather M.]

Heather,

I wish you the best of luck with your surgery.

And then----go to law school!!!!

Callie

Thanks for the vote of confidence.  I think it's going to take one of the major arthrofibrosis surgeons doing a study to show how much money is LOST when patients are treated improperly.  My insurance company has shelled out at least $50K in my treatment, and I've probably paid out at least half that in out of pocket expenses.  All because I wasn't properly treated for a 'routine scope' the first time around.

As for law school--foreget it!  I'm too old, I've already got a career I love and a Master's Degree that I don't use....no more school for me!

H

[bajalady]

Heather and all,

Ok, we'll get Jaci to go to law school. Jennifer? Hottubpam---nah, she's up on the slopes. The law school comment was mostly said in jest. BUT----serious point is wouldn't it be nice to have somebody with a personal stake in the scarring nightmare be in a position to make some changes in insurance law? Someone with power. Just a thought.

EDIT---yes the only way insurance companies change anything is if they are convinced the "new way" will save them money. It's ALL about money no matter what kind of coverage a person has. Some plans are better than others, but none of these companies really care if any of us walk right again. Cynical. I know.

[missmyknee]

If You are looking for a OS in Kansas City for baja. I am the one who has the baja OS. If you IM me I will give you his name. He repaired my patella baja and gave me back a mechanically functioning knee. He is the only one here that does baja. Time does matter. I was in baja for 18 mos and it caused extensive damage to my patella cartilage.....ended up with knee replacement because of the damage.

Pam

[missmyknee]

I got your IM and sent you his name

p.s We love Tablerock Lake south of Springfield and have always vactioned there

Pam