Advertisement - Hide this advert





Author Topic: Arthrofibrosis success  (Read 25319 times)

0 Members and 1 Guest are viewing this topic.

Offline KatieO

  • SuperKNEEgeek
  • *****
  • Posts: 1056
  • Liked: 0
Re: Arthrofibrosis success
« Reply #15 on: July 04, 2006, 03:20:28 PM »
Well, I have surgery tomorrow for IPSC with Dr. Fulkerson himself. I have had 3 previous surgeries, the last of which was 3 years ago. How long my problem has  been arthrofibrosis is anyone's guess. I did have good mobilization after each surgery. I have not only been reading Dr. Noyse but have copied out parts IV and V for my PT, wanting to watch for the 2 to 3 week critical passage. I have found it interesting that some people may be genetically inclined to excessive scar tissue and that it was mentioned that it might be an auto-immune response. I also have Reynauds Syndrome (auto immune) and had RSD (also autoimmune). I am scared and excited and scared and excited.
KatieO
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline bear

  • MINIgeek (20-50 posts)
  • **
  • Posts: 24
  • Liked: 0
Re: Arthrofibrosis success
« Reply #16 on: July 26, 2006, 04:29:37 AM »
I know I posted a long time ago and just recently realized there was a fair amount of discussion afterward. 

An update today, July 25 - I jogged 3 miles this morning.  I usually jog three times a week.  I bike to work ~4 days a week, 10 miles round trip.  On a recent vacation I did a couple decent hikes (5+ miles), one with 2000ft elevation gain in 2.5 miles, and swam over a mile across a lake and back.  My knee seems to be handling all of this quite well (knock on wood) and I am headed for a backpacking trip in 10 days.  I recently took a job as an outdoor program coordinator, coordinating and leading hikes for a non-profit conservation organization.  Last fall I wasn't even sure I'd walk normally again, or be able to go up and down stairs, so this has been a very welcome turn around!!  As I told someone recently, I feel like I have my life back.  I look at those 5 months between 8/1 and 12/15 as being a very dark, scary time, but also as a pretty big personal challenge that has changed my outlook on just being able to walk.  I still marvel sometimes that my knee actually bends!! 

To clarify, I never had ACL surgery.  I developed arthrofibrosis just from the injury.  I still have not had my ACL repaired and am running around without one.  But I also, to date, have not had any instability.  I am quite sure that in my case a lot of the scarring came from those first few weeks of immobilization and not being given any timely instructions about how to treat an ACL tear. 

To the best of my knowledge, and I was pretty persistent with my surgeon and made sure she explained exactly what she was going to do in the operating room, she performed the MUA *before* the scope.  So,  I suppose, it was a little barbaric.  She could not get it to completely bend using force, so then she went in arthroscopically and did a lateral release.  She never said she did a lysis of adhesions, nor did she write it on the surgical report.  All I know is the process worked, however it was done...  she then filled my knee up with a steroid concoction to keep the swelling down.  And I dove into PT.

I think the arthrofibrosis course is a great addition to the site (I've read a couple of the chapters) and I am still thankful for this site.  I know it can get heated and testy, and I can understand why.  My main recommendation to anyone in this situation is to read a lot (educate yourself!), ask questions, and keep your hopes up!! 
ACL complete tear
MCL partial tear
Soccer, 8/1/05

Offline KatieO

  • SuperKNEEgeek
  • *****
  • Posts: 1056
  • Liked: 0
Re: Arthrofibrosis success
« Reply #17 on: July 26, 2006, 02:30:30 PM »
It was interesting for me to go back today and read this from the start. I am now 3 weeks post op. I am still scared and excited and hopeful, though from this side of the surgery. I would say that I am in the category of those with a genetic predisposition, so I am very nervous. The healing is going very well. I have a good range, lots of stiffness but it loosens up when I work my knee or when I walk for 10 or 15 minutes. I have very mild swelling and had no bruising at all. I know to keep watching and measuring with my PT to make sure the range continues to improve. I am nervous about how much inflamation I can cause by overworking my knee vs how much I need to keep pushing.
I know that all signs are good but I have been down (in pain,with severe limitations) for so long, I don't know what up looks like. I start a new job in a couple of weeks and look forward to a fresh start. I am weaning off the percoset now and going to take hydrocodone for a month, and then try for no pain meds. I have been on pain meds for years beyond count.
I can keep at the adhesions. How can I keep the scar tissue from taking up too much space under the patella and having that itself cause limitations? A scary but exciting time for me.
Katie
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline celinenj03

  • SuperKNEEgeek
  • *****
  • Posts: 1688
  • Liked: 0
Re: Arthrofibrosis success
« Reply #18 on: July 27, 2006, 07:48:52 PM »
Katie, I had the same and you'll find the loosening up lasts longer and longer and the stiffness starts to fade. YOU'RE DOING GREAT!!!! And Bear, that is awesome that you are running again and all without your ACL. Amazing! I'm really impressed. I rode my stationary bike a lot after injury, after partial meniscectomy and after ACLR and so far no scar tissue. Keep the knee moving, it really does wonders. God bless you both!
Terrible Triad - 1/16/06 - Basketball
3/15/06 - Scope/Cleanout of to achieve full ROM
5/3/06 - Surgery-ACL Reconstruction-Allograft
9/12/07 - Large Loose body removed;Grade 4 Lesion on LFC
9/17/08-Microfracture, Lateral Release (all right knee)

Offline KatieO

  • SuperKNEEgeek
  • *****
  • Posts: 1056
  • Liked: 0
Re: Arthrofibrosis success
« Reply #19 on: July 29, 2006, 02:41:29 AM »
I know this is a bad question, but how soon is soon??? I know that is impossible since every surgery is different but I am getting impatient with this healing stuff and want to move on to having  a happy and mobile knee!!! Someone put me to sleep until this is over. Oh, that is happening. I nod off a couple of times a day for these long naps. Sigh...
Katie
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline bear

  • MINIgeek (20-50 posts)
  • **
  • Posts: 24
  • Liked: 0
Re: Arthrofibrosis success
« Reply #20 on: August 29, 2006, 06:03:16 AM »
Another update...  It's August 28, and I just returned from another backpacking trip, this one 3 days and 23 miles, with about 4200 ft of elevation gain.  My husband and I went off trail for much of the trip and traversed some very steep, rocky, uneven terrain and my knee never gave me a problem.  I use hiking poles religiously, which help a lot.  This trip was a goal of mine for over a year, since I was first on crutches and learned about the area. 

So, happy to report that all is well.  I've scheduled a meeting with my surgeon in about a month, to discuss an ACL repair.  I'm 50-50 on whether I will have it done.  Since I can do so much as it is, except play soccer and other similar sports, I'm not sure it's completely necessary and worth the risk.  Part of me thinks I should just accept what I've gained and live with it! 

Anyway, just an update.  Again, I am still incredibly thankful I can even bend my knee. 
ACL complete tear
MCL partial tear
Soccer, 8/1/05

Offline KatieO

  • SuperKNEEgeek
  • *****
  • Posts: 1056
  • Liked: 0
Re: Arthrofibrosis success
« Reply #21 on: August 30, 2006, 12:18:31 AM »
That's going to be a very tough call. You have such fabulous mobility now, I could sure imagine "why mess with a good thing?" That is just awesome about your backpacking trip! Life is good, eh???
Katie
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline favouritesearcher

  • Forum Faithful
  • ****
  • *
  • *
  • Posts: 201
  • Liked: 0
  • User's Text
Re: Arthrofibrosis success
« Reply #22 on: August 30, 2006, 04:33:49 AM »
Hi Bear,

Thanks for posting an update; I'm envious of your fuctional knee, though I have managed to go on a 1.5 day hike myself (7hrs + 4hrs), and also ascended the Gros Piton which is 2 hours straight up and another 2 straight down (the painful 2).  I'd also probably say "no" to an ACL reconstruction because of the risk, expecially if the surgeon messes around with the patellar tendon ... plus you'd have a year or so of rehab which is no fun.  Over time, a lot of ACL-Rs stretch anyway.  It's still interesting that you needed a lateral release to get your full rom back.

John
Mar 04 - Tibial spine avulsion fracture (skiing). Open surgery to fix, 1 screw.  Max passive ROM 20-75, active ROM 30-45
Aug 04 - Diag. severe arthro. Scar tissue clean up (LOA, removal of scar tissue).
Feb 05 - Discharged from surgeon's care. ROM 3-125.
Apr 05 - Discharged from physio. Same ROM

Offline celinenj03

  • SuperKNEEgeek
  • *****
  • Posts: 1688
  • Liked: 0
Re: Arthrofibrosis success
« Reply #23 on: September 02, 2006, 06:33:22 PM »
Great for you Bear!!! Having had an ACLR and knowing the risks of possible loss of range of motion, scar tissue, etc. why roll the dice yet again? If you are functioning good and happy and satisfied with your life, cash in and go home! ;)
Terrible Triad - 1/16/06 - Basketball
3/15/06 - Scope/Cleanout of to achieve full ROM
5/3/06 - Surgery-ACL Reconstruction-Allograft
9/12/07 - Large Loose body removed;Grade 4 Lesion on LFC
9/17/08-Microfracture, Lateral Release (all right knee)

Offline bear

  • MINIgeek (20-50 posts)
  • **
  • Posts: 24
  • Liked: 0
Re: Arthrofibrosis success
« Reply #24 on: September 30, 2006, 05:28:14 AM »
Well, I met with my surgeon again yesterday to discuss ACL reconstruction.  Her gut was "no."  I have had no instability, and am even coaching a soccer team these days, though I don't play much.  Why do surgery just to gain more confidence?  In the meantime, I will step up my sports, try some lateral movements and see how it goes.  I think some members of my family think it wouldn't be a big deal, but I know the recovery would be long and there are risks, given the previous bout of scar tissue.  So...  at this point I am going to postpone and go from there.  Anyway, that's where I'm at.
ACL complete tear
MCL partial tear
Soccer, 8/1/05

Offline KatieO

  • SuperKNEEgeek
  • *****
  • Posts: 1056
  • Liked: 0
Re: Arthrofibrosis success
« Reply #25 on: September 30, 2006, 02:20:06 PM »
I think that is a smart plan. While ACL R is do-able, it is a big deal and not to be taken lightly. It's always an option IF you need it. Avoiding surgery is a great thing to do!
Katie
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline Carmen

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
Re: Traumatic Injury and Arthrofibrosis
« Reply #26 on: June 15, 2008, 07:27:18 AM »
I noticed in reading all these comments on arthrofibrosis that one very important contributing factor has been overlooked.  The severity of the trauma plays a substantial role in increasing ones propensity for developing the condition.  Certainly surgeons and rehab can be a factor but sometimes its just the reality of the injury and overcompensation of the knee.  Other genetic factors contribute as well.  For example, in the civil war men who got arthrofibrosis had a genetic advantage in that they got to keep their knee unlike the poor sap whose knee was too unstable to ever walk again.  Prior to the modern age it may have been a blessing rather than a curse.  Furthermore there are often corresponding complications such as reflex sympathetic dystrophy (also known as complex regional pain syndrome or causalgia (sp?)).  Anyway,  I'd like to here more about treatment and success stories with arthrofibrosis occuring after high velocity impact injuries or knee dislocations.  I really think its quite an oversimplification to say arthrofibrosis is very preventable given all the variables that might or might not go into a particular persons situation.  It would also be helpful to me to know what peoples qualifications are when they assert certain things.  Many are excellent at explaining that they are patients but others I'm not so clear.  As for me I dislocated me knee sledding with my kids (technically its not a knee dislocation since by some great miracle I didn't have arterial damage for which I'm thankful since I was in a remote location in Alaska when it happened) but according to the surgeons I had every other injury consistent with a full dislocation.  Basically everything blown to bits in places other than their place of origin and 100's of hairline fractures in the patella and several in the tibula.   
I have a "moderate" case of arthrofibrosis according to the doctor (can't imagine what a bad case is).  I have 70 degrees of flexion and within 20 degrees of full extension after months of PT and the gym and the pool and a recent steroid injection.  In August (I'm out of town and jammed at work) I'm having surgery to remove the scar tissue and possibly quadriplasy and tendon lengthening (forgive me I don't know the jargon or the acronyms).  I have a doctor with a stellar reputation and got a second opinion from another doctor with a stellar reputation.  The only area they differed is one would do the ACL repair and scar removal at the same time and the other not.  I stayed with my original doctor who prefers the two step process (research favors his approach).  I already had one surgery in the beginning to get rid of all the debris and put things back where they belonged (my knee cap also dislocated so there was debris caught underneath from when it snapped back).  Anyway, long story short I'd like more info if anyone can provide it on recovery from severe knee trauma.  My injury has been likened by three orthopedic surgeons to hitting a guard rail unprotected at 80 miles an hour.  To give you a visual the outside edge of my foot (side with pinky toe) was about three inches from the top of my hip at one point.  Before that it hyper extended and rotated and then snapped back.  Not wanting to ruin my kids fun I sat out there for another 1.5 hours before I realized something was really wrong.  I didn't have arthrofibosis before surgery though but I did have a knee that was unable to bend or straighten and it was larger than a soft ball but not quite as big as a volley ball.  I'm told if the scar tissue removal goes well I can have ACL repair 6 weeks later.  I'm not sure I can do formal PT everyday though cause I have 3 kids under 6 and my husband and I have very high demand jobs.  I could work out everyday because that's more flexible with hours and there is a daycare there (I have a hard time taking the kids out of daycare just to put them back into another one).  Thoughts/ experiences on high trauma would be great.  Thanks. Carmen
« Last Edit: June 15, 2008, 07:32:24 AM by Carmen »

Offline missmyknee

  • SuperKNEEgeek
  • *****
  • *
  • Posts: 2083
  • Liked: 20
  • From the Land of OZ
Re: Arthrofibrosis success
« Reply #27 on: June 15, 2008, 06:18:08 PM »
Hi Carmen

Welcome to the forum, but sorry you have come because of your injury and arthrofibrosis. Your disocation was very traumatic , did you suffer any other damage to the other ligaments like the PCL, posterolateral corner, LCL or the MCL ? 

I've been a forum member since 2003 and have had arthrofibrosis since 2000, that started when I broke my leg in 4 places. I was thrown from a horse who fell after jumping.  I had 2 fracture to the fibula one which was to the ankle and 2 fractures to the tibia. 3 of the fractures were displaced. I had 2 surgeries to the leg and ended up having another one to surgically rebreak my tib-fib because it was set crooked. We have a section above this one on soft tissue and arthrofibrosis  . You will find several pages of posts over the years from many who have asked about arthrofibrosis. There is also another part of this website called the Community Hub, with a section all about arthrofibrosis. We are very fortunate to have the moderator of this website, who is a physician, taking an active role in supplying a large amount of information on arthrofibrosis by acquiring many medical articles on arthrofibrosis, or AF as we call it and by getting other professionals involved in supplying medical information. We are very fortunate to have one of the foremost experts on arthrofibrosis write a tutorial on it , so far in 6 parts with more to come. This is a very easy to read, but detailed explanation of everything you would like to know about arthrofibrosis. He also just wrote a 9 part tutorial on ACL reconstruction Failures and Revisions. There is a link to a compilation of current and previous threads from forum posters with some of the more indepth discussions on AF. When I first joined this forum in 2003 , there was very little information out there. In the beginning the information we had was from past forum users doing their own research finding medical articles and posting links to them and our own experiences. The more articles found, we noticed alot of the same names of physicians who were researching and developing treatments and rehab for AF. After exhausting treatment from our local docs and still having problems , several of us have found we needed to travel to one of the "names" on those articles to be treated by an OS who had extensive knowledge in treating AF. Some. of us have gone to Vail  Co to see Dr Steadman and Millett., Paulo Alto CA to see Dr Eakin, Cincinnati Ohio Dr Frank Noyes, Houston Texas Dr Lonnie Paulos, Ann Arbor Mich Dr Wojtys, South Carolina Dr Folk to mention a few  I myself, have spent 8 yrs of constant researching thru medical journal articles, my own experiences with AF, my relationship with my OS ( Dr Noyes) who is one of the experts, the extensive rehab for this and the education from my OS's PTs have given me an extensive knowledge base to help others. Over all these yrs there is now an excellent source of information on AF on this website. I also started my own blog on my experiences of the last 8 yrs and 13 surgeries with AF.  I will post all the links for you. Sometimes you need to click on the end of the link to get it to work.

This is for the AF section of the forum.

http://www.kneeguru.co.uk/KNEEtalk/index.php?board=9.0

This one is to the tutorial by Dr Frank Noyes. It is in 6 parts. Be sure to read all 6

http://www.kneeguru.co.uk/KNEEnotes/node/753

To all the professional articles:

http://www.kneeguru.co.uk/KNEEnotes/node/217

Great threads of AF:

http://www.kneeguru.co.uk/KNEEnotes/node/433

My blog on AF. Begin with the story on AF from IM nailing

http://www.kneeguru.co.uk/KNEEnotes/blog/2

Community Hub

http://www.kneeguru.co.uk/KNEEnotes/node/632

Once again, welcome   ;D    If you have any questions one of us would be glad to help .

Pam



« Last Edit: June 15, 2008, 06:25:14 PM by missmyknee »
4Fx Clsd red
IMrod fib plate
derotate osteotmy tibfib
AF
IPCS patbaja
DeLeeOsteotmy,LOA,LR Zplasty,bongrf,chondrplty
chondrplty,LOA,fatpad remvd
TKR
openLOA,neurectmy,ITB Zplasty,fabela
PLC recon,revison,LOA,synovec
MCL,revison LOA
openLOA,prox Zplasty
openLOA, 6 neuromas excised,synov
3 Fusions

Offline Carmen

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
Re: Arthrofibrosis success
« Reply #28 on: June 18, 2008, 07:28:15 AM »
Thanks Pam;

I have checked out some of the links you attached but it's great to have them all in one space.  I wrote my message and then thought I could post it in any forum I chose but it got stuck here otherwise I would have put it somewhere else.  As for your question regarding did I damage anything else.  I meant what I said when I said i blew the whole knee. Literally everything. ACL blown to bits - pieces all over the place, torn PCL, MCL, totally shredded the medial retnaculum (sp ? - bands on the inside edge of the of the knee), folded the meniscus and connective tissue in half (lost 1/3 of each front meniscus).  Messed up tissue on the bones and up and down the bones - lots of bone bruising in addition to the hundreds and hundreds of hairline fractures.  Tons of just shredded soft tissue.  Of tens of thousands of knee surgeries this surgeon and the other I consulted said they had only seen or heard of a handful of knees this messed up and still have a leg.  Its as a mess but neither of them was fatalistic they just encouraged me to be patient.  Amazingly it healed it just didn't stop healing.  Now there are adhesions all over but probably not in the joint just around it which I'm told is much better except that it may have adhered my quadricep muscle to the bone - we'll see when he gets in there.  Well I'm tired and I did want to check out those other sites.  Thanks again. Carmen 

Offline Carmen

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
Re: Arthrofibrosis success
« Reply #29 on: June 18, 2008, 07:46:40 AM »
Hi - I'm Carmen I put a post on here last week in this thread under Carmen.  Shouldn't be too hard to find I've only posted that and now two more.  I'm wondering if you could check it out and share it/ post it in any forum you think might yield better results. I'd really appreciate it - thanks - Carmen















support