Scar tissue strikes again?

[Jaci]

Hello everyone.

I apologize, once again, for taking so long to update my thread.

I'm still in Vail, 13 weeks post-op. It's such a relief to be under the care of such compassionate and knowledgeable doctors and physical therapists. It has done wonders for my peace of mind. But, I hate to even say this, MY KNEE SUCKS!!!

I had surgery on 7/26, then 3 Synvisc injections, an insufflation, a cortisone injection, taken anti-inflams, and still had a flare-up at roughly 6 weeks post-op. Same pattern as my two prior surgeries. It's all down hill once the flareup begins. Dr. F had Dr. S take a look at my knee during one of my recent appts. They decided that a Medrol dose pack might be the only way to break the inflammatory cycle. Dr. S stressed that he only uses oral steroids when nothing else has worked. It helped for about 10 days, but now get heat and swelling after 30 minutes at the grocery store. Sitting for 20-30 minutes does the same thing.

Dr. S prescribed going back to basics on PT-- wall slides, SLR (I still can't do),  patellar mobes, no resistance biking (I can bearly do it because my kneecap catches on every rotation), crutches full time.

Pain has been hideous. Taking oxycontin 2x per day, percocet for breakthrough pain. I usually wake up with 3 or 4 level pain in the morning, the pain shoots up to 7 or 8 as soon as I have any type of activity. By the time night comes I have to use lidoderm patches, ice, and ambien to be able to go to sleep. I tend to wake up frequently and usually only sleep a few hours.

I see Dr. F again on 10/28 to see my MRI and plan my next surgery. He's been talking to Dr. S about my case and wants to arrange to have him assist with my surgery. Hopefully, next surgery will be early November and I can make it to 6 to 8 weeks without having a flareup.

Other bad news is that it looks and feels like the contracture may be getting worse. Knee cap is sitting lower, seems to get caught in the joint, then makes a loud snapping noise when it pops out. OWWW!

 As awful as my knee is, it's far better than it was before I came to CO.

For those thinking of coming here, Steadman-Hawkins website has info on local hotels. Since I knew I would be here 6 to 8 weeks or longer, I found a small appartment to rent. I got a copy of the Vail Daily and looked in the classifieds. Be forewarned that prices are higher during the peak ski season.

The Ambien has started to work, so I need to go to sleep.

Thanks, everyone, for letting me rant a little. I'm really tired of my knee. I just want walk again and have less pain.

Hope you are all well.

Take care.

Jaci

[jennifer123]

Hi Jaci,

Sorry to hear that things are still not as you (and we) hoped for your knee.  The pain, as always, sounds horrible.  I really hope that gets better soon.  Glad to hear that Dr. F and Dr. S will possibly be doing the next scope.  I should be in Vail around the time of your surgery, so let me know if you need a ride to the hospital, etc.  

Hang in there.  Hopefully you are one scope away from getting back to your life.  And, if that's true, it seems like you have the doctors who could make it happen.

Jennifer

P.S. Dr S is out of town for 10 days starting on the 7th of November.  So, maybe if he wants to do surgery on me too again before he goes out of town, we'll meet up in pre-op on the 6th!    (I'm kind of serious... I have a surgery reservation for the 6th).

[SarahSmile]

Jaci,

I was waiting to hear from you! I am SO sorry about what's going on though... my heart *and knees* really go out to you right now. Pain is a very evil disease... don't let it get the best of you as hard as that may be. Try to do things that you can do and focus on the bright future ahead of you and the prospects of a successful surgery with Dr. F and Dr. S. I believe you will get better and will have less pain.  Is there any hobby that you enjoy that you can do without aggravating your knee? I took up sewing and love it...but I just need to stop after about 1 hour because sitting bothers my knee. I also like to write, and I can do that while in bed with my knee elevated.  I'm trying to take up different hobbies that I've never thought of doing before. I think I may try knitting. It's actually becoming trendy in California  I'm also trying to think if there's any home-based business I can do to shift my focus off my knee since I recently lost my job and Dr. D doesn't want me returning to a desk job. Even if it's only for a couple hours a day, selling things off ebay, it will at least take the focus off my knee for a little while and give me a sense of my old life back.
I think the hardest part is adjusting to the *new* life and accepting the things that I can't do, and embrace the things that I can.
I hope you improve soon. You will be in my thoughts. Please keep me posted!

Take care,


Sarah

[Jaci]

Greetings from beautiful Vail, CO.

First, a bit of good news. I saw Dr. F last week. Went over my MRI. There is a lot of scar tissue, especially around the fat pad and patellar tendon. The good news is that it appears to be far less than what showed on the MRI prior to my last surgery. Dr. F feels things seem to be moving it the right direction. Because some areas, like the suprapatellar pouch, don't show up well on MRI we won't know exactly what's going on until my next surgery.  

Surgery is planned for this Friday, 11/5. Dr. S will be performing this one. I have a pre-op appt with Dr. S on thursday. I'll see what he thinks about whether I'll need another surgery after this one. He originally thought it would take 2 or 3 to get the scar tissue under control. Also, have a few questions about the infrapatellar contracture (will it get better?) and a small knot on the bone where my patellar tendon connects to the tibia. (Maybe a bone spur?) It really hurts sometimes.

Still doing light PT, just the basics, and trying to avoid anything that might irritate my knee.

In general, I'm feeling better than I have in a few months. It took a good two months to get over the altitude sickness. Plus, I stopped taking percocet and oxycontin. I ran out while Dr. F was on vacation. Within a few days of running out, I realized that, although my knee hurt like crazy, I wasn't feeling depressed. I actually didn't know I had been depressed until I wasn't. :-/ Does that make sense?

I'm now taking Ultracet. It's less likely to cause depression, according to Dr. F. It works okay, but I still have periods of high level pain and use Ambien and lidoderm patches or cryocuff so I can go to sleep.

Anyway, that's the latest. I'll be glad to get this surgery over with and get started with recovery and rehab. I'm trying to stay optimistic, but also know I have to be realistic about my expectations. I don't care if I never run again, but I really want to walk and hike. I'll even be happy with the easy trails.

Jennifer-- I'll see you next week in PT.

Sarah-- Thanks so much for your suggestions. A new or renewed hobby is a great idea. I brought my colored pencils and sketch pads with me. So far, I've only brought myself to sharpening the pencils. As you said, accepting this new life is the hardest part. I don't think I'm there just yet.

Take care, everyone. Wishing you good knee days.

Regards,

Jaci

[hottubpam]

I've just read all of the posts in this thread about arthrofibrosis and am very interested in participating in these discussions.

In February 04, I had a terrible ski accident and completely severed my ACL, tore my PCL and lateral and medial meniscus.  I had ACL reconstruction using an allograft in March 04.  Even though I went to PT shortly after surgery my ROM was limited and remained at about 17 degrees extension and 90 flexion.  The surgeon just kept telling me it takes time, but after about 4 months, I decided to get a 2nd opinion.

Went to the University sports doctor and he said I have severe arthrofibrosis.  He did arthroscopic surgery 10/4 and removed the ACL graft and "a ton of scar tissue".  I was in a straight leg cast for a week (although it was changed daily) and have been in PT since the day after surgery.  I now have extension of close to 0 and flexion of about 115.  However the scar tissue is back.  My current surgeon is telling me this is as good as it gets and that I will never return to any level of any sport.  I told him that was unacceptable.  He does not want to perform any additional surgeries, because he says he can actually make the condition worse.  I am currently looking for a new dr. who will take a more aggressive course of action with my knee.  I have read about the Steadman Clinic and called there today, they said they would call me back in 1-2 days, but I realize it will probably be a 3-4 month wait to get in.

After reading your messages, I saw Dr. Eakin's name and called his office.  I have an appt. scheduled with him Nov. 29.

One other name I was told to consider was Dr. Clancy in Aspen.  I have been told he has a lot of experience with arthrofibrosis.  Has anyone heard of him or know anything about him?

It looks like many of you have been suffering with arthrofibrosis for many years.  I feel your pain.  I remain hopeful, but I know I have to find a new dr.

Any additional information on this subject will be appreciated.

Your new arthrofibrotic compatriot,
Pam

[hottubpam]

Hi Jaci,

How are you doing since the 11/5 surgery?  I am really hoping for the best.  I would really like to hear of a success story for treatment of arthrofibrosis.  I am new to this web site and fairly new to the condition, but I know how debilitating and depressing it can be.

I am now officially on the wait list to see Dr. Steadman and was told it will be a 2-3 month wait.  In the meantime I will follow through with my appts. to see Dr. Eakin and Dr. Clancy.  My arthrofibrosis is getting worse and I also have contracture.

I am very much interested in hearing about your progress, so when you feel up to it, I'm hoping to see a post from you.

Best of luck to you, and I'll light a candle for your knee.

Pam

[azgirl]

hello jaci and all,

i have not been able to write since going to vail due to comp problems.  i saw Dr. S on the 28th of oct. and he said that my knee was "bad" and may take 2-3 surgeried to fix, had surgery on the 29th.  all went well, and stayed in vail for a week with pt 2 times a day.  knee was doing well with movement and not much swelling.  Got to come home and start pt here in phx.  friday at pt my therapist told me she thinks that i will probably need another surgery cuz it is stopping and not progressing anymore. :-/  Ugh!!  i will go back and see dr. S in Jan or Feb, after holidays.  my knee is better than it was before surgery, but not as good as it needs to be.
it was good to finally meet you jaci.  boy does it get cold in vail.  many nice and knowlegable people there.  this knee stuff sure does get tiresome, don't you think?  i am sorry that your knee is being so stubborn jaci. stay strong and please try to stay warm.
my prayers are with everyone having to go through this, it is a long and hard process.
take care of yourself,
chemaine

[Jaci]

Greetings everyone.

I'm finally home. I got home this past Sunday, just in time to miss the current cold front and snow storms passing through Vail. The cold didn't really bother me, but the ice was down right scary!!!

I had surgery on 11/5 performed by Dr. S with Dr. F and one of the fellows assisting. Dr. S performed a lysis of adhesions and anterior interval release under general anesthesia. I had severe pain in post-op recovery, so a femoral nerve block was performed. However, it didn't work for me as it only numbed part of my inner thigh and the medial area of my knee, not the lateral side where the worst pain was. Ended up staying in the hospital overnight for pain control. PT the next morning. Went home (to local apartment) with a CPM and ice machine.

NWB except for feather toe-touch for two weeks, then partial weight bearing since. Dr. S wants me to continue using crutches (at least one) as long as I have pain. Not sure how much longer that will be. I can sometimes walk-- well it's actually more of a shuffle--about 5 to 10 steps. Not far enough to go anywhere, but getting around in the kitchen and bathroom is a lot easier. I have no spring in my step, I try to push off with my left foot and it just doesn't happen. I end up taking tiny steps, just barely lifting my foot off the ground.  

The question of performing surgery on a "hot knee" came up recently elsewhere on the board. Dr. S does take that into account and will not perform surgery if the knee is actively inflamed.

I also have to take issue with the statement that scar tissue grows back heavier after each surgery. I've not found that to be the case since going to Steadman-Hawkins. With my recent LOA some scar tissue was fluffy-- sort of like cob webs. With my prior LOA it was solid sheets and thick masses and cords. One of the main reasons I went to Vail was the techniques for early intervention and reducing the effects of inflammation with insufflation and injections of Synvisc &/ or steroids.

My previous OS is an outstanding surgeon with excellent credentials. He did a fellowship with Dr. Douglas Jackson who produced one of the seminal works on cyclops syndrome and extension loss after ACL reconstruction. My previous OS's experience included excision of cyclops lessions, however that did not translate into the knowledge and experience to treat the global type of scar tissue that I have. When I read his post-operative report and compared it to what I've read in journal articles and saw on the Cinn Sports Med DVD, it appears that he may have missed scar tissue. I have no way to know for sure, since he would not do an MRI before my surgery or when the scar tissue appeared to be growing back. However, the MRI done at S-H showed masses of fibrotic tissue; it's hard to imagine that it formed and became that fibrous in the 18 weeks between my first LOA in CA and my appointment with Dr. F.

In addition, my previous OS refused to do a cortisone injection at my 4 week post -op visit saying it was too soon. I knew adhesions were growing back, I could feel them starting about a week post-op. He finally gave into my begging and cries for help at 6 weeks post-op, but had great difficulty getting the needle through the scar tissue. That's what prompted me to seriously look for an OS with more/different arthrofibrosis experience. I found what I was looking for in Vail.

I'm not out of the woods yet. My knee is barely functional, but the pain is far less. I no longer have daily thoughts about amputation. Dr. S wants to give my knee a rest, so I'll go back again in March and we'll decide on the next course of action to take. In the meantime, I'll keep doing PT and be thankful for this board and the advice to see an arthrofibrosis specialist. It's made all the difference to me.

Happy holidays, everyone.

Take care.

Jaci

[Heather M.]

Jaci,

I was feeling really down today--just having a pity party before the holidays, you know?  Anyway, it was great to read your post and hear that you are doing better--and more importantly, that you have HOPE.  That means so much to me and everyone else here who is following your story along with their own.  I feel like we are all connected in some virtual, across the World Wide Web kind of way...I think what most helps me is that we all are going through different phases at any one time.  So when someone is feeling down, others can cheer them up, give them hope, and help them to see that they are better than they were before, and hopefully will improve further as the weeks go by.  Then, when I'm feeling lower than a snake's belly, I read a post like yours, which acknowledges how far you have to go but is so grateful for the ground that's been covered thus far.  So thank you for that.  It helps me to remember that I was in truly desperate straits before I had surgery with Dr. Steadman.  I had no functionality and a steady level of pain (wasn't in formal pain management at that time).  After my two procedures with him (LOA and then insufflation at 2.5 weeks of surgery), I had more than twice the function, and about the same pain levels.  I thought it was a good trade--but I still wanted more.  I was working toward that when I had my latest setback at Thanksgiving last year...85 pound dog meets bad knee.  My pain levels doubled overnight, and haven't gone down since...despite a 'clean' MRI.  We all know how good those puppies are for telling the whole story, right?

Anyway, I'm really grateful for the function I got back.  I can now walk without a severe limp (my knee was catching with each and every step before I saw Steady).  I like to joke that before my procedures I was in a place that was 'unbearable' and after I improved to merely excruciating...you guys get that, which is what I need when I log in.

I'm glad to hear that you are home again and doing a bit better.  And it's FANTASTIC news to hear that you didn't have sheets of scar tissue.  That's what Dr. S. found when he did my scope--a continuous sheet of scar tissue down the entire anterior face of the knee.  My video was kind of funny--or rather, my reaction to it.  I watched it months after my scope, and I knew that serious osteochondral (arthritic) lesions had been identified on the back of my kneecap, so I expected to see them on the scope.  The video starts with the whirring scenery as the scope is inserted into my knee, and then you can see water moving and some bubbles, and this big wall of white.  It looked like bone, and I figured by the order of what I had done that this was the patello-femoral compartment and that the wall of white was the back of my kneecap.  So I studied the screen closely, wanting to see these lesions.  Nothing happens, you can just see bubbles and the camera moves slowly as it explores the entire wall of white from top to bottom and side to side.  I started to get confused, because I couldn't see any lesions--it looked clean and smooth and beautiful to me.  Then suddenly this big silver THING punches right through the center of the wall of white and starts 'chewing' it up with this little aligator looking instrument--that wall of white was the sheet of scar tissue that they found on the anterior face of the whole knee!!  

It was truly freaky to see how thick and solid that wall of adhesions was...unreal.  It sounds like you had something similar.  And it sounds like maybe you had something similar, so just know how optimistic it is that the second scope showed only fluffy bits of scar tissue instead of solid sheets.  I'm so happy for you.

Please keep us posted, and enjoy the early Christmas present your knee has given you.  And on the crutches...if you want my unsolicited advice...don't push getting off them too quickly.  Dr. S. gave me the same advice--weight-bearing only as tolerated and with strict monitoring of pain and swelling.  Every time we added more weight my knee swelled and the pain in the patellar tendon was excruciating--so we backtracked a lot.  And it wasn't so bad to go bit by bit by bit, slowly adding about 10% more of my weight with every couple of days that went by.  It took me over 5 weeks to get off crutches, though I still used them after that for another 10 days or so in public or for longer spans of time on my feet.  I truly feel being NWB and then only PWB on crutches was one of the single most important aspects of my successful post-op protocol.  I had been on crutches for the better part of a year at that point, and was really bitter when I heard about being 100% NWB--in the snow and ice--after my surgery.  But it really helped.  So did the ice crampons for the crutches!  I still have mine, and may well need to get them out as my next doctor visit is in OH, where they just got a ton of snow.

Hang in there and keep updating your post.  It's really helpful to all of us, regardless of what our current knee status is.

Heather

[Jaci]

Hi Heather.

I'm so glad my post lifted your spirits. Afterall, I do owe you and a few others a debt of gratitude for all the help and advice you've given me.

I know what you mean about feeling lower than a snakes belly as I've been there many times since this ordeal started last December. I cringe at the thought of what this year would have been like had I not found this website. Pure hell!!

I'm still having extreme pain in the patellar tendon, it feels like it's going to rip out from the tibia when I try to do straight leg raises or put weight on my bent knee. So I'll continue using the crutches for a while. What's another few months after nearly a year on crutches? Besides, the workout makes my triceps look fabulous!!

Have a wonderful holiday!

Regards,

Jaci

[bajalady]

Jaci,

So glad your doing better. Your October post said "knee sucks" now two months later you are so much better. You certainly deserve it after all you've been through.

Maybe we should all chip in on a co-op in Vail. Kidding, but not entirely. And how you got your insurance to pay for the specialized post-op is a big question to me and I know some others. Later discussion on that one.  

If there is a key to getting any of us "out from under" a scarred up knee (or two) it seems to be a combination of the right OS "before" you become a mutiple surgery mess, the right post-op care, the right rehab. and even some luck.

Still thinking insurance companies should "find" an arthrofibrosis specialist and be forced to do so.

Happy holidays, everyone. Now if this thread gets "locked" for any reason, I'm going to get a complex I really am.  

Callie

[hottubpam]

Hi Jaci,

So glad you made it home for the holidays and it looks like you will be home for a couple of months.

I share your gratitude for this web site.  It has been a tough 10 months for me, but everytime I start to feel sorry for myself and read the posts of those of you that have been dealing with this for so much longer.

I have high hopes for my upcoming surgery with Dr. E on 12/29.  I'll post the  results as soon as I am able.

Please keep us posted on YOUR progress both at home with PT and when you go back to Steadman clinic in March.

Happy Holidays and I'm hoping your pain levels continue to decrease.

Pam

[Jaci]

Hi everyone.

I'm a little depressed lately. My knee was doing pretty well in terms of pain level, until about a week ago. I had stayed in Vail until I reached the 6 week mark (the point post-op where I previously had inflamation flare-up) and seemed to be doing okay at my last visit with Dr. S. I had mild patella tendon pain at that point, and Dr. S felt there might be some scar tissue growing. He didn't want to do more cortisone or Synvisc. Felt it was better to take a wait and see approach.

Anyway, about a week ago I slipped a little while going up the stairs. Caught myself before completely falling, but put way too much weight on my bent knee. I iced immediately. There was no increase in swelling, but it's becoming increasingly painful on a daily basis. ARRRGH!!!!

I've also had a few too many reminders of how long this ordeal has been going on. My GP is out of town, so I went to urgent care on Monday to get a prescription for pain meds. Of the 6 or 7 doctors there, I ended up with the same doctor that saw me the day I injured my knee. I recognized him immediately, and after talking a bit he remembered me (injured knee by falling off high heel shoe). After I recounted whole story of battling scar tissue-- he'd never heard of such a thing-- he responded it's "amazing that a seemingly minor incident can have such a huge impact on one's life." Amazing indeed!! BTW, he's not an OS, but he was the only doctor I saw in my area that correctly diagnosed my original injury as an LCL tear.  

After I saw him, I did a little grocery shopping. Got run into by a senior citizen's grocery cart. I go to that store because the seniors are as slow as me and don't become impatient with my slowness.

Then went to pharmacy to fill prescription. When I got to the counter, the pharmacist asked if I was still on crutches or if it was a new thing. She hasn't seen me in awhile since I've been out of town. And, she did ask in a very nice, sympathetic way, but it was all I could do to keep from bawling my eyes out.  I've been on crutches over a year, now.    (Actually, I started crying as I walked out to the car. It was pouring rain, I got completely soaked, so no one could tell that the mascara running down my face was from tears, not rain.)

My apologies to those who have far more serious knee issues, or who have had them longer. I've been floating around in the pity pool a bit too much lately. I don't really like to talk to other people when I'm feeling this way, because I don't want to get "it" on them. I tend to put on a happy face and sugar coat what's really going on, especially when I talk to my family. Other than all of you, I only have three friends that I actually tell the truth too. One of them is a KneeGeek, too.

I hope 2005 is a better year for all of us.

Regards,

Jaci

PS-- Another kick in the pants!! As I was typing this message, my gynecologist office called. I'm way overdue for my annual exam.   I completely avoided it last year because I was dealing with my blasted knee!!

[sm]

Jaci,

I doesn't matter that others have more serious problems or have had them for longer.  You are still struggling, and venting for awhile is ok.  I know I'm new here, but isn't that part of this site?  

The disappointment of a setback can really hit hard, especially when you've done all you know to do and travelled so far for good care. I will pray for you and that this is a minor set back.  I know you just want to wake up tomorrow and have it be a bad dream.

You are a blessing and help to a lot of people: hopefully that is some solace.

Take care of yourself.

Susan

[hottubpam]

Jaci,

I'm so sorry to read your status per your latest post.  Remember one of the Steadman philosophies is that it is 3 steps forward and 2 steps back.  Have you called your OS at the Vail clinic to talk about what's going on?

These knee problems have created an emotional and physical roller coaster that so many of us share.  That is the beauty of this site.  We can vent when we need to, share our frustration and sadness and realilze that others out there are going through the EXACT same thing.  It is very comforting.

Please hang in there, I enjoy reading your posts (the ups and the downs) they give me strength and I still believe that if we all perservere we will get through this and come out stronger then before.

Don't get me wrong, I have my down days too.  Right now I'm suffering through the claustrophobia of being housebound, not only due to the knee, but we have had such an unbelievably bad winter.  Tons of snow, roads are impassable - friends and relatives have a difficult time getting to my house for a visit.

I think you are in Calif. and I know you are having a really bad winter too, lots and lots of rain - very depressing for those of us with knee issue and those of us that  are used to sunshine.

Keep posting to this site - the good, the bad, the frustrating, the hopeful.  We are all here for each other.


Take Care,
Pam