multiple scar tissue surgeries

[sm]

Jennifer,

I understand not wanting to broadcast "stupid guy's" name all over the internet, but could you send me a private message with his name?  I'm going to the S-H Clinic next Wednesday to see Dr. Sterett and would so much like to avoid a run-in with him.  Were you not able to see Dr S at all?  How can I avoid this kind of brush off?

Thanks,

Susan

[wofford99]

Callie-
I'm so glad to ready your post.  I've had the same issue of jumping/cluncking.  I had my 14th arthroscopy in October 2004.  I've had bilateral TTT, etc and nothing has helped my left knee.  After the surgery, I've still had the jump/clunk and my doctor doesn't understand why.  I've been so frustrated. He gave me another cortisone shot into my tendon 2 weeks ago which didn't help.  I posted under my folder that I had a large pop in my kneecap/patellar tendon junction today walking down the hall.  The pop was so loud my friends though it was my ACL.  I had severe pain at the patella/tendon junction.  I don't know if it's patellar tendon or meniscus.  It swelled, hurts terribly and my doctor won't see me b/c "he's too busy" and can't do anything else for me.  I think he needs to do an open procedure and clean out the tendon.  My PT thinks the tendon has been most of the problem all along.  I'm in horrible pain from this pop.  Margaret

[bajalady]

Margaret,

I've been refused cortisone shots into the actual patella tendon because of the potential for rupture. In the past, I've had cortisone soft tissue shots done into the fatpad and around the tendon into the scar tissue but not into the tendon itself despite much begging from me to my OS. He told me the chances of rupture from the cortisone were very very slim, but considering my run of bad luck if anybody would blow out their tendon from the injection, it would be me. I could not get mad at him because it was so true.

Well guess you have to wait to see your doc. These OS's get busy and even if you have a good relationship with them you can still get put at the end of the line. I really hope your tendon is ok. I just now saw you post. Take care and if it gets worse start yelling louder to get in to the OS.

If you really popped your tendon bad your patella will look "too high" I think. I do remember reading your posts some months back. You poor thing; you've just been through @#$$ haven't you. Not fair. 


Take care,
Callie

[Heather M.]

Jennifer,

I'm still waiting for a callback from Dr. Bugbee's allograft coordinator, so I don't know yet when I'll come out to So Cal.  The reason to see him would be to get his opinion on cartilage restoration--OATS procedure, in particular.  Dr. S. already said almost 2 years ago he wouldn't do microfracture on my knee, yet most doctors I've seen agree that the osteochondral leson is one of the two major culprits in terms of my knee pain.  Dr. B is the guru of OATS, so I thought I'd go straight to the source.  I'm also trying to get in to see Steady for a check on the scar tissue situation, and to see if he will change his mind about the microfracture.

I think it would be awesome to have a get together of the Heather's and Jennifers and anyone else who wants to come along.  I was suggesting that we should all meet in Vegas, so we could gamble...with our luck, at least ONE of us has to come out a big winner!  Or everyone could come to Sedona for the red rocks, healing vibes, and three different casinos...we really need to put together a retreat.

I'll keep you posted on Vail.  I've been playing phone tag with your buddy C for at least 10 days now...yesterday I got a call-back from Rae, so I guess that's progress, right?  It sounds like they are totally slammed there.  They are returning calls seven days a week.  I didn't think I had to get in the long, new patient queue, but since Rae is calling me back, maybe I do...?  The last time I arranged a consult and surgery, Adrienne was the one who screened new patients to see if they fell within the area of expertise of the clinic staff.  And then you got calls from Crystal when you were accepted as a patient, since she was the *only* scheduler.  Maybe things have changed...?

I wouldn't do surgery until late April or May though--don't want to pay high season rates or get stuck in snow/ice again if I can avoid it.

Heather

[Heather M.]

Jennifer,

You are correct, we definitely talked about meeting when I get out there.  I just have to find out when Dr. Bugbee can see me.  Unfortunately, it's going to be on a weekday, so I don't know how everyone will miss out on work/school, but we'll give it the old college try.

I'm off to play phone tag with Rae again.....

Heather

[bajalady]

Jennifer,

I was on for a second saw you were on site.

For what it's worth, I have hope this surgery will be the one that fixes you. Since he's opening a little this time, I bet he will find a problem (maybe scar tissue and maybe something else) that all the scopes have not been able to correct. I told you in the past, this happened to me. I know how you feel. I really really do. Don't worry about waiting to do this surgery. You needed a break.  A person can only take so much and we all hit the wall. Mentally, surgery after surgery after surgery gets to the strongest person. You have to back off or you'll just go nuts. Literally. I've been there. These mutiple surgeries will wipe a person out. And your knee is probably happy it got a rest and maybe it won't react as violently to this surgery as it has in the past. Take care, Callie 

[hottubpam]

Jennifer,

I am so sorry to hear about your upcoming surgery.  I've only had 4 (so far) and I can empathize with what you are feeling.  Do you really feel the only improvement you have had since going to SH is "more strength"? 

As you might remember I am seeing Dr. E in Palo Alto who was a fellow at SH and follows the SH protocol for arthrofibrosis.  Although I'm not "cured" at least I have made significant gains in my extension, it's 0.  I still have to work on my flexion though and may need one more surgery to get it to where I want it.

I do think all of us suffering from this dreadful condition must retain HOPE that we will see improvement.  I think mental state has a lot to do with healing - at least it does for me.  And everytime I come away from Dr. E.'s office I have a very powerful feeling of hope. 

At least SH is being pro-active and they are NOT giving up on you, so you need to hang in there!!!  You know your fellow knee geeks (especially those of us in the soft tissue healing section) support you and care about your recovery.   


Please hang in there.  We're rooting for you!

Pam

[bajalady]

Jennifer,

Bajalady is still talking. HA! Just to comment on hottubpam. Yes, thank goodness they have not given up on you.

There is nothing worse than the day every OS available to you says, "Sorry, we're done."   

I still have a good feeling about this surgery for you. I really do.

I know everybody on soft tissue feels like they "know" you from reading your posts and we'll all be praying or lighting candles or whatever we do in times like these. Callie

[sm]

Jennifer,

How many surgeries have been done in Vail by S-H?  I so feel for your situation.  What are we KG's to do?  What are the options?  We can sit around because our knees won't let us do anything else, and most of us were active (that's how we hurt our knees).  It goes against our grain to sit around, but the multiple surgeries keep us down, too.  So we find the best surgeons we can and try again.  I've been busy rehabing my knee after surgery 5 weeks ago, and there are times I wonder if I'll ever walk my dog or hike again.  But then I think that without the last surgery at least, I would be ruining my knee with the almost constant bleeding that had been going on in there.

Knee surgery isn't hopeless, or no one would bother having it.  I agree with Callie that you needed a break and maybe your knee will respond better after a break.  I also understand how you feel.  You know what you are walking into.  You know all too well the PT and at home exercises and the time you'll spend icing and elevating when everyone you know can skip down a flight of bleachers or bound across the parking lot with a lift in their step you're almost afraid to dream about. (Sorry, that happened to me just yesterday  )  It does make you want to cry at times.  It's probably good to let it out once in a while; and you know you can whine to us without worrying about offending or putting us out. 

I'll be praying for you this week.  How long will you be in Vail?  I have an appt on 3/9 w/Dr Sterett.  I'm not that far away that if you "kneed" company, I might be able to arrange a trip up the hill.   Let me know.

Susan

[arsenal]

Oh Jennifer!    My heart Goes out to u. Hang in there.
I will pray for u that something positive will  come out of your meeting with him over the weekned.

Good luck!

tse

[sm]

Jennifer,

This is awful!  I hope you get some better news this weekend.  Can you describe what your knee is like now.  After 3 surgeries (only one at SH in Vail) I can do all of my exercises without pain but I can't walk.  I don't think I'd make it around the block with my dog.  I'm only about 6 weeks post op, so there may be hope.  I, too, have had improvement in strength because I've not had the horrible swelling I had before the surgery, but I'm not doing anything I used to do that would cause swelling, like living a normal life!   My ROM is good, but it doesn't help if I have too much pain to use it.  Do you have ROM?

I'll be thinking of you.

Susan

[favouritesearcher]

It sounds like a very negative appointment with your doctor, the sort no-one wants to have. 

But if he wants to look at you again on the weekend then maybe he just needs a bit of time to think about what to do next, because with such a difficult problem it's hard to work out how to proceed in one short meeting.  It could be that he's trying to figure out why it keeps coming back, or if there's something he missed.  It's good that he's taking the time to do that.

Success and failure are always relative ... to others, to what you want, and to what you had before.  It's important to be positive because being miserable makes everything else seem worse.

I hope for the best for you.

John

[bajalady]

Jennifer,

Old school thoughts on scar tissue have always been wait untll it matures and it can stretch out and soften up with time. If, of course, you have halfway decent ROM. Time "can" be good thing. Sorry I backed down from yelling this at the top of my lungs (fingers) I knew it long ago. When I first signed on and found the site everybody (on site) was saying just the opposite, I did not know what to say on board. I still don't really. So many unknowns concerning scar tissue. There is not one clear answer that applies to everyone. Stay strong. We'll "talk" to you later. Callie

[Heather M.]

I think the 'back off and wait' way of proceeding is pulled out when interventions haven't been effective.  Yes, scar tissue can contract and harden as it matures.  But it can be kept limber and flexible in a patient who has decen ROM and applies himself/herself to stretching daily.  Sometimes myo-fascial release and other deep tissue treatments can really help in this process.

I have to say, though, that if a person has just been diagnosed with scar tissue or if they suspect it, and if no measures are taken to deal with it, you run a huge risk by waiting things out.  It hasn't worked for too many of us.  On the other hand, you don't want to be doing procedures every 1-3 months to take out the scar tissue.  Again, it's all a matter of balance.  And having a surgeon with the experience to make the tough calls.  Since Jennifer has had multiple interventions, and has had some improvements with respect to pain and such (though of course it's not as good as it can be) then it might make sense to give the knee some time to calm down and see if things change.  Or if it can be brought to the point that she can live with it.  This is exactly what I've been doing for the last two years.  It doesn't mean the doctor doesn't care or is abandoning the patient--it just means that multiple interventions have been done, and the surgeon is at the edge of his/her comfort zone and is concerned about reaching the point of diminishing returns with more procedures.

I know it's frustrating, but there really aren't too many other choices.  I've spent the last two years trying very hard to live with things as they are.  I've given up every physical activity, and most non-physical ones.  Still the pain goes on.  And I'm having increasing problems in some other areas.  So it might be time to go to the next step for me.  But not for someone else.  Give things a chance to calm down, and give yourself time to adjust to the idea that the knee is permanently changed.  It doesn't have to be a bad thing.  And there are MANY non-surgical treatments that you can try in the meantime--most of these have been hugely successful for me with respect to improving function, keeping my ROM at a level which is 'excellent' given my knee situation, and addressing soft-tissue restrictions. 

Anyway, I just think it's important to note that time can be your enemy with scar tissue that has never been addressed or fixed.  Studies are quite clear on the decreasing chance for return to full function as time goes by.  On the other hand, you also reach a decreasing chance for full or even partial function with multiple procedures in a short period of time.  Dr. S. told me that 6 scopes on my knee would be the outer boundary of his comfort levels, and I agree.  That's why I've been trying to give it time.  But there was no way I could have or would have given things time when my knee was frozen at 55 degrees of flexion. 

There just aren't any absolutes, I guess.  You have to follow a case very carefully and hope for the best.  If the knee is in a terrible state, you might want to be aggressive with interventions.  If the knee is liveable (for the present) then the doctor might want to hold off and take a wait and see approach.  I'd be uncomfortable with a doctor who said "I always wait" or "I always intervene in x number of weeks" because I've learned that 'always' is not a good starting point when you are dealing with a knee that has arthrofibrosis!   I think we've all learned that...usually the hard way.

Heather

[bajalady]

Jennifer,

In your past post you stated that Dr. S said he is "hoping that the scar tissue will loosen up over time."

Then you said, "I thought it was supposed to get more rigid. What have you all heard on this?"

Sure in some cases the scar tissue "can" soften, loosen, and break up over time. Evidently this point has been missed on board or you would not have asked the question in the first place. In my experience it's common knowledge that fibrosis CAN soften and change with time. Especially in the fat pad area.   

And the mutiple scopes thing is what most OS's are referring to when they "quit" and say ok let's wait now and see if time can change some things. They all seem have a different idea of how many is too many. The OS only has two choices. Go in again. Or wait. Or the third is refer you to another OS for consult.  

For the next two months you, or a PT, or both massage and mobilize the heck out of that fat pad/tendon.Then ice after you do it. Let the "heat" factor be you guide.

Another suggestion and this is up to you entirely. Would it be so bad to have a second opinion on that "Clunk" that none of the scopes have addressed? Not with an arthrofibrosis OS but maybe one who does complex knees (functional problems) There is a geek on here near you I think; her id says something like "horrible knees." Who is her OS? In Calif I think. Heather G? Or maybe try another OS who takes real complex patella tracking problems?    

Everybody who responds to you is trying to help in their own way. 

Callie