KNEEtalk

The LIBRARY => NOTES - Your success stories => Topic started by: MelP on February 21, 2006, 05:44:44 PM

Title: Victory over patella baja & arthrofibrosis including new patellar tendon
Post by: MelP on February 21, 2006, 05:44:44 PM
I have a functional knee after six surgeries at Cincinnati Sports Medicine to correct severe patella baja and arthrofibrosis!  I feel so fortunate to be walking normally again.  By reading the experiences of others on this website, I was pointed in the right direction for treatment of these conditions.  I hope this story gives others some comfort, knowledge, and hope.

My patella baja and arthrofibrosis resulted from a "routine" surgery in November 2004 to remove a ganleon cyst, part of which was growing under my patellar tendon.  After beginning physcial therapy 5 weeks after surgery and immobilization, I became stuck at 70 degrees of flexion.

My husband I and sought a second opinion at Duke University in February 2005.  The news we got was unexpected and alarming.  I was told I had a very serious knee condition that would be difficult, if not impossible, to treat.  The orthopedic surgeon (OS) used the word, "disaster" to describe my knee.  I had severe patella baja and my patella was completely frozen into place by scar tissue (arthrofibrosis).  He correctly recommended that I not have the manipulation procedure scheduled with my original OS.  This OS at Duke made it clear he did not want to be associated with my case, but that I should find help quickly.  As he was backing out of the examination room in what would be the last time we spoke with him, I was furiously writing on the back of a magazine the names of surgeons throughout the country he thought might tackle my case.

This news was devastating and frightening.  I thought, "I am an athlete, runner, hiker, and cross- country skiier.  I also have a three-year-old and one-year-old to keep up with!  Who is going to help me if a premier institution like Duke won't even try?"   

I recognized one of the names on my magazine list from growing up in Cincinnati - Dr. Frank Noyes.  It was so comforting to find the Keegeeks Bulletin Board and learn there were others dealing with the same conditions.  From the online conversations or "strands," I was able to understand the causes, unpredictability, and difficulty of treating my diagnoses, as well as a list of surgeons throughout the country who are qualified to treat it, which included Dr. Noyes.

My first appointment at Cincinnati Sports Medicine was in March 2005.  I was afraid Dr. Noyes might not take my case.  When he came into the room, there didn't seem to be a question that he would try to help me.  He confidently stated, "We know exactly what to do," to address my condition.

I was immediately introduced to his therapy staff to begin quad strenghtening and treatment of my lack of extension at 11 degrees.  This serious problem with my extension was barely mentioned or addressed by my original OS.  I observed how a proper physical therapy room should function - with doctors dropping by at least a couple times a week to check on their post-surgical patients, communicate with therapists, and adjust treatments.  The therapists at Cincinnati Sports Medicine (two of which had worked there over twenty years) are well-versed in techniques and protocols that they themselves have developed to address issues like lack of extension.  I began the painful process of "hanging weights" - propping my heel up on a towel or foam roll and setting 20 lbs. of weight on top of my knee for 10 minutes.  I faithfully followed instructions to do this and other exercises 6-8 times a day.

Shortly thereafter, I was put into an extension cast.  This is a torturous process where a grown man pushed down on my leg with all of his weight to straighten my leg, then casts it into place.  I was brave until it was all over and then needed to break down and cry.

Dr. Noyes ordered an MRI and my patellar tendon was not discernable.  When Dr. Noyes did my first surgery in April 2005, he found that my patellar tendon was merely a fragment of scar tissue.  I had a series of four surgeries to prepare for an anticipated patellar tendon reconstruction.  These surgeries included scar tissue removal, z-lengthening, releases, and an innovative procedure to address an unusual skin healing problem.  Becasue of being immobilized and losing range of motion (rom) for several months, I didn't have enough elasticity in the skin on my kne for an incision to heal.  Dr. Noyes twice put a balloon in my knee that was gradually injected with saline (used for mastectomy's) to grow additional skin.  At some point, Dr. Noyes moved my patella back up into the correct position.

I was having an average of oen surgery per month.  This was a very difficult time for me personally and for my family.  I temporarily left my home in North Carolina and moved in with my mom near Cincinnati while my two little girls went to live with my husband's parents in Kansas for four months.  I was weak and underweight.  I was down to 94 lbs. from and original weight of 111.  I began seeing a psychologist while in Ohio to help me thru the depression.  The uncertainty of the outcome was stressful and difficult to bear.  After the first two surgeries, Dr. Noyes conservatively estimated that I probably would not achieve more than 70 degrees of flexion.  Fortunately, he proved himself wrong and after the third surgery I immediately gained 30 degrees and then another 10 degrees gradually.

I was doing therapy literally all day long.  By the time I had finished one round of stretching, several exercises, hanging weights, and icing it was time to start again.  I didn't use the CPM for long before I got an "ermi" (End Range of Motion - www.GetMotion.com) machine at home.  The ermi is indispensible for patients trying to increase range of motion.  Every therapy room should have one.

I was conservatively prescribed a prednisone pack only once to try to reduce scar tissue formation.  I was not given any cortisone injections.  I remember getting up every few hours at night to use the CPM machine - I worried scar tissue would form in my knee if I lay unmoving for too long.  During one surgery, Dr. Noyes noticed signs of infection.  The infection was localized and not too serious, but it warranted a "pick line" - a semi-permanent intravenous line sticking out of my arm for many weeks to inject powerful antibiotics directly to large veins in my chest.  It was scary laying in a steel, windowless room having this line inserted into my body.

Finally, my knee was ready for the patellar tendon reconstruction in August 2005.  It was more accruately a tendon creation in my case.  What Dr. Noyes did, I think is amazing.  For tissue, he used strands of hamstring from my good leg in addition to cadaver tendon.  He felt it was important to use my own tissue because it would heal much quicker and become much stronger.  He drilled holes thru the length of my patella to thread this tissue thru.  He wired it up for 6 months to support the tendon as it healed, although I could still work on my full range of motion on the ermi.

I moved back home 4 weeks after this surgery and continued a daily therapy routine on my own at home and at the gym.  I worked to teach myself how to walk again, which took a few months and was much more difficult than I anticipated.  I used a treadmill at the gym to concentrate on the mechanics of my good leg, trying to make my "bad leg" do the same thing. 

The wires were removed in Feb. 2006.  I have about 115 degrees rom, no chronic pain, my patella in the right spot, and a new patellar tendon.  One hundred-fifteen degrees might not sound like a lot, but it is SO functional compared to 70 degrees.  I can walk without a limp, step in and out of the shower, and go on day hikes with my family.  These things are all so huge!  I expect to be able to cautiously cross-country ski again next year.  I have another year of therapy and strenghtening ahead, but I will be home with my family after a really long, tough, year.

If you have any specific questions, don't hesitate to contact me thru this website.
 

Title: Re: Victory over patella baja & arthrofibrosis including new patellar tendon
Post by: missmyknee on February 21, 2006, 07:38:14 PM
Mel

What a truly impressive story......as a fellow baja and infrapatellar contracture patient, I am in awe !!!! I am also a patient of Dr Noyes. My journey with him started in June 2004, after my baja repair. My tendon was scarred down to the tibia and fat pad, shortened from being immobilized from a broken leg 5 1/2 weeks, 2 of those weeks were post surgery ,and then no PT for 7 weeks and severe quad atrophy. No open release would budge it. Mine was repaired with a DeLee osteotomy. However the damage done to the patella was severe. After one more surgery , I ended up seeing Dr Noyes.....my knee was not salvagable so he did a TKR last Jan 05. He just did surgery again 4weeks ago ...had an open arthrotomy LOA to the MCL and posterolateral complex, neurectomy and fabellum removal. I have suffered a set back with a dislocation 2 weeks ago and found out when I saw him last week , it did damage the knee. I will be back in about 3-4 weeks. He has been a godsend for me and the PT dept is top notch . I hate living out of town and having to drive 10 hrs from Kansas to see him. People of Cinn are so lucky.

I hope the other baja people read your story and see that your repair was successful especially for the intricate procedures you had done and your journey all the way. You really were totally devoted  all the way and sacrifices made to accomplish it. I'm glad you made it thru and with such good results

I hope you continue with such good news .......great story !!!

Pam
Title: Re: Victory over patella baja & arthrofibrosis including new patellar tendon
Post by: missmyknee on February 21, 2006, 07:44:06 PM
P.S,

I rented the Ermi for 2 months post op TKR and think it is just a great piece of equipment for flexion. I had a love/hate relationship with it...it was painful ,but I actually felt better right after using it........then got hooked on it and used it 4-5 times day when I had it at home. I just spoke to the Ermi rep today when I saw him at PT.

Pam
Title: Re: Victory over patella baja & arthrofibrosis including new patellar tendon
Post by: KTee on February 22, 2006, 04:13:35 AM
Wow!
What an amazing story...
Thank you so much for taking the time to share the details with us.  I'm sure lots of people will find your post extremely helpful.
And for those of us who have had difficult knee problems and multiple surgeries, a story like yours gives a lot of hope.
I'm glad that you were able to perservere through the hard times and were rewarded with a functional knee in the end.
Thanks again for sharing...

Kelly
Title: Re: Victory over patella baja & arthrofibrosis including new patellar tendon
Post by: Sharon on February 22, 2006, 05:03:40 AM
Thats an amazing story and it's really an inspiration to those suffering from patella baja! I'm a fellow patella baja sufferer and went through a similar surgery to your last one. My OS completely replaced my patellar tendon with a piece of my quad tendon as I'm too short for them to have found me a cadaver tendon of the right length. It sounds like it was a similar procedure to yours though. I too have gained back some flexion(went from less than 90 before the surgery to about 110 now) and my patella is now in a reasonably normal position. My OS said it will never be in a completely normal position but it's as good as he expected and hoped. My problem now is that I'm still suffering alot of pain from the damage that's been done to my cartilage and patella from the position my kneecap was in for so long. We're trying me on an anti-inflammatory now called cataflam combined with tylenol which I've been taking for 5 days now with no results but I'm hoping that in the 2 week trial period I'm on it will start to work. It's nice to know that I'm not the only one who's gone though this surgery because I know it's very very rare. Thanks again for sharing your story-you really are an inspiration!!

:)
Sharon
Title: Re: Victory over patella baja & arthrofibrosis including new patellar tendon
Post by: Janet on February 23, 2006, 02:14:50 AM
Mel:

Thanks so much for sharing your success. I'm so happy for you! You were fortunate to get to Dr. Noyes so quickly. It took me four years and three doctors before someone finally recommended I see Dr. Wojtys or Dr. Noyes. Since Dr. W is only 45 minutes from my house, I chose to see him. He was able to give me much more function and reduce the pain, but the damage to my knee from the patella baja still causes problems.

We are now re-evaluating my knee to see if there is anything else to do. I have pain from so many different areas....from the quad tendon area where the repair was, from the chondral defect behind my patella, from the chronic patellar tendon pain, and more. I usually keep the pain at a tolerable level, but only by strict restrictions on my activity. I'm tired of living like this. You give me inspiration that maybe something really can be done to help!

Thanks again for posting. Keep up the good work!

Janet
Title: Re: Victory over patella baja & arthrofibrosis including new patellar tendon
Post by: Jennifer_G on February 25, 2006, 04:02:10 PM
Hi Mel!!

Not sure if you remember me or not but we were in PT together alot while you were seeing Dr. Noyes.  I am so inspired and glad to hear how this all turned out.  I remember you coming out of your doctor appt. when he had told you that you would most likely only have 80-90 degrees of flexion and how upset you were.  I am thrilled to hear that today you are at 115 degrees and walking normally!!!  You worked so hard and inspired me to keep pushing myself!  Keep up the good work and start enjoying life again!

Jennifer G
Title: Re: Victory over patella baja & arthrofibrosis including new patellar tendon
Post by: MelP on February 27, 2006, 07:07:02 PM
Pam, sorry to hear about your setbacks.  It sounds like its been a tough road for you.  Hang in there with your recent procedures.  I agree, the therapists at Cincinnati Sports Med. are "top notch." 

Jennifer, of course I remember you, have thought about you and wonder how you are doing.  I remember you were wrapping things up with Noyes and looking forward to a new stage of life!
Title: Re: Victory over patella baja & arthrofibrosis including new patellar tendon
Post by: MelP on February 27, 2006, 07:49:23 PM
Thank you to the "SuperKNEEGeeks" and veterans of this condition (Janet, Sharon, Pam, et. al.) who contribute lots of postings to give others advice.  I can attest that your advice really makes a difference. 

Sharon, I hope you get your unresolved pain resolved.  I am also very petite in stature, and had read about the possible difficulty of getting a cadaver graft the proper size to fit me from a posting on the board about a year ago - maybe from you?  So, leading up to my patellar tendon reconstruction, I repeatedly asked Dr. Noyes and his Fellows if this was going to be a problem for me, and they kept saying, "no," -that they could just size cadaver tissue to fit me and that they had access to a large bank of it.  I don't know enough about the surgery to understand the inconsistencies between our stories.  I just wanted to point it out.

Sincerely,
Melissa
Title: Re: Victory over patella baja & arthrofibrosis including new patellar tendon
Post by: KatieO on May 06, 2006, 12:02:13 AM
Thank you all for your stories. It's funny (not really). I know that my knee pain is absolutely the ruling force in my life and I hate that, but my condition (as far as I know) is so much better than the starting places of all of you. Does that mean there is hope for me and my little patella baja? I don't know. I feel for Mel, oh my goodness, to be away from her children through all this. I am grateful that my girls are in college now, even though I have gone through pain and surgeries for 8 years. I hate for them to know what I am going through. I know they are actually embarrassed that their mom is out of work now, like, why don't I just push through the pain and act like a "normal" parent. This is not a happy thing for me!!!!
I am waiting to hear from two doctors near me, Dr. Fulkerson, himself, and Dr. Minas in Boston, to see if they want to see me. In the mean time, I am trying to find my own vitality through the pain and limitations of all the simple things that everyone else (or so it seems) can do. I am even going to start running spiritually based groups (generic spiritual) for people with chronic pain.
Here's to healing, in any form!
KatieO