4 weeks down the long ACI road

[bioprof]

I'm so glad to have found this forum.   I'm 44 yrs, married with 2 young kids.  I'm 4 weeks ACI post-op.  I had a trochear and a MF condyle lesion repaired.   As you may have guessed from my username, I am a biology professor, so the biology of ACI is intriuging, but from a patient's perspective it's scarey as hell.   It really has been helpful and encouraging to read about other experiences with ACI.

The nightly pain has finally subsided.  What a relief it is to be done with the 2 am Vicodin!  One my biggest frustrations and concerns is trying follow my surgeon's rehab protocol, which differs from the standard Carticel protocols, in some cases signficantly.  For example, I was only on the CPM for 2 weeks, at which point we had it dialed up to 0^o extension and 120^o flexion.  No brace at all.   My surgeon is very bright and personable, but is somewhat challenged in the communications area.

One question I have is how everyone chose a PT?  The one I'm working with (just started last week) seems very competent, but has no ACI experience.  Should I seek one that does?

Thanks.

[DJF]

Wow, Bioprof.  I don't know how I missed this post.

How is it going?

With my first surgery (Lateral Release) I had SEVERE pain in themiddle of the night.  I would have to bend my leg which hurt REAL bad for before the pain would subside.

Is that the type of pain you had at night?

Did you ever get an immobilizer?  PT?

I have told my surgeon I want the recovery to go slow and careful.  He is not beig on rehab either.  My intention is to MAKE hime follow the Carticel recovery protocal from the webiste.

Don

[DJF]

Bioprof,

Didn't you get a Carticel Rep?  ou might give them a call.  They are very interested in your recovery as the reputation of the company is a stake.

Don

I am lucky enough to have a PT who has helped several Carticel patients.

Are you on crutches?  Partial weight bearing?

Fill me in
Don

My Implant date is Oct 17th.

[bioprof]

Hi Don.  I've really benefitted from your posts throughout this forum.  Thanks.

I wish you the best of luck and a speedy (relatively speaking, of course) recovery.

The best way to describe the pain the first 2 weeks post up was a prolonged category 5-7 toothache, i.e. throbbing pain.  Vicodin (7.5 mg) knocked it down to a 2-3.

The brace/immobilizer experience was a fiasco from the beginning.  My OS prior to surgery said I would be in it 24/7 for at least 4 weeks.  As I was being discharged, I asked about the brace which was sitting on a shelf.  The nurses looked at each other and finally admitted that none of them new how to attach it.  Two PTs were called in, but after about 10 min and a helluva lot of pain, it was clear they didn't have a clue either.  I demanded that they call my OS.  I didn't hear from him until that afternnoon, at which point he told me he decided not to use the brace!  He apologized for the confusion.

I'm NWB w/crutches.  I see my OS in 3 days, at which time he may order PWB.  I have a hunch that he his varying rehab protocols on his ACI patients to evaluate which works best.  Who knows?

My OS's coordinator gave me a list of PT's in my area, but provided no information about who may be best for my ACI rehab.  I have a PT who is young and very personable, but has no experience with ACI patients.  That, combined with my OS's inconsistent communication, concerns me.  I think it'd time to use your assertive tactics on my OS.  The problem is that his office blockades patient calls directly to him, routing all calls through his coordinator.  I'll give my Carticel rep a call.  Thanks for the suggestions.

With all that said, my knee is feeling much better.  I just hope all those little chondrocytes are happy and do their thing!

[DJF]

First off, I'm glad your getting better.

Your OS's protocal is VERY different and a little scarey.  SO, I assume you jest try and keep the leg straight? 

For my Lateral Release, my OS did not prescribe any rehab.  And he ownes the rehab center!!!!  I finally went to another OS for a second opinion on the Carticel.  He agreed that Carticel my be a good alternative for me, but said he would not operate on me with the muscle tone I had in  my quads.  He thought I was too weak and with another surgery it would be VERY VERY difficult to come back.

I too that information to my current OS who then prescribed rehab.  I have been doing the rehab exercises sincce March and have noticable improvement in my leg.

This time, I have the protocals with me every time I go see the OS and we WILL follow them with only minor variations.

Rant off.
Don

[Nick_Knack]

1) There are few PT's who have considerable experience w/ ACI alone as this is not that mainstream of a surgery.  So, my experience, was just concentrate on finding a PT who generally has a lot of experience w/ knees and works at a high volume place.

2) Carticel will give you- via your surgeon- a pretty detailed rehab protocol.  So, just be knowledgeable as to what is prescribed and question anything that seems odd or against the protocol.  PT's should have tons of experience w/ ACL's and Total Knee Replacements and be tempted to apply what they know there for ACI.  But in ACI, you want to protect the knee through certain Ranges of Motion (for trochlea) and open vs. closed chain excercises in the early stages.  I don't believe these restrictions exist in ACL's or TKR's where the point is to get the swelling down and the knee moving as quickly as possible.

3) I like PT's that do manual work.  That is: efflurage/ petrosage or lymph drainage techniques (i.e. where they manualy work and "massage" the lymph or swelling down from your knee into your draining lymph nodes of your groin.  I made sure that the PT worked w/ her hands and didn't just watch me doing a bunch of exercises.  The manual work really helps reduce swelling and restore range of motion quicker. 

4) after the first 3-4 weeks, you will be much more independent and able to do majority of rehab on your own, w/ the PT's guidance.  I stopped going to rehab now and just do it at gym where I can combine it w/ a cardio workout  (i.e. stairmaster, elliptical and leg weights on my own)>


Best of Luck,

Nick

[bioprof]

Thanks Nick.  You mentioned that it is advisable to "protect the knee through certain ranges of motion" with trochear lesion repairs.  Are you referring to limiting flexion?  I read the reab guidelines for trochear ACI and it does seem that the schedule is more conservative.  I don't have a clue why my OS hasn't adhered to this.  I will be sure to ask that question and others when I see him in 3 days.  If this forum does anything, it empowers patients through knowledge.

[bioprof]

I know many veterans of this forum are aware of the Carticel Rehab Guidelines on their website, but for those nubies like me, here is the address for the guidelines document(note:  It's a pdf document):  http://www.carticel.com/pdfs/carticel_rehabilitation_guide.pdf

It's a very informative document that I believe all current and perspective ACI patients should have in-hand when they meet with their OS and PT.

[bioprof]

I had my 1-month post op visit with my OS yesterday.  He was generally pleased with the progress so far.  I'm about 0 extension/105 flexion.  I still have general aching pain at night, and pain with full extension and leg lifts.  My OS finally fitted me with a brace and directed 25% WB, with a two week goal of being full WB.  And that's where things got interesting.

After the examine,  I let him know that I was not satisfied with the level of communication between his staff and me, including their failure to provide names of PT's with ACI experience.  I told him that even though I was working with a very pleasant and competent PT, I was concerned about her lack of experience with ACI.  It turns out my concerns were well founded.  My OS apologized, and referred me to a PT with ACI experience.  I called the new PT immediately and met with him that day.  Bottom line, the new PT concluded that the activities and protocols set by my first PT could have jeopordized my ACI recovery.  They were simply too aggressive for the trochear and MFC lesions I'm recovering from.  I was both relieved and angry.   It is frustrating to consider that the huge commitment and scrafice I and my family have made could have been wiped out by this lack of communication.

As I told my OS, I learned from a previous surgery on my R. shoulder several years ago.  I failed to ask questions about my rehab and ended up with a frozen shoulder that required very painful rehabe to fix.  I will not make the same mistake twice.  Ask questions folks!  And if you're not satisfied with the answer, ask again until you are!  Do not feel that you're going to insult you physician.  They're trained to answer tough questions. 

[Nick_Knack]

Thanks Nick.  You mentioned that it is advisable to "protect the knee through certain ranges of motion" with trochear lesion repairs.  Are you referring to limiting flexion?  I read the reab guidelines for trochear ACI and it does seem that the schedule is more conservative.  I don't have a clue why my OS hasn't adhered to this.  I will be sure to ask that question and others when I see him in 3 days.  If this forum does anything, it empowers patients through knowledge.

yeah,

for trochlear/ patellar lesions, you want to limit the open chain quad exercises to 0-40 degrees, I believe, in beginning.  Also, not to "snap" or fully extend on close chain quad strengthening.  Also, limit bicycle resistance in beginning of rehab.  Also, listen to your knee.  If you over do it at gym/rehab, it'll feel sore.  The stair master i have found is excellent.  a) You get cardio b) it isolates each leg so can't compensate c) limit range of motion so don't over do it.


Best of luck.

[DJF]

Glad you got the rehab straightened out.  I was very nervous for you when you described what you were doing.  Now, you can get back on track.  It is a little scarey that all the pain and commitment could have been wasted.

Congrats
Don

[dillon24]

You guys have me a little nervous.  I'm in the process of trying to find a PT with ACI experience, but my OS's office hasn't let me know who in my area has that kind of experience.  My other problem is finding a place that accepts my insurance. You would think Cigna would be covered almost everywhere.

Anyway, the place I went for my chondroplasty, the PT's had never even heard of ACI much less treated someone with it.  I'm a little "gun-shy" to go there for PT, but I don't want to have to pay out of network charges ($40 -$60 per visit) each time I go. That could get rather expensive.

Dave

[DJF]

Dave,

I think worst case, I would take the Carticel rehab protocals with me to the PT and make sure they follow it.  THey may even call your Carticel rep. for assistance.

The more I read, the more lucky I feel that my OS practice also owns the PT practice and they hav elots of ACI experience.

Good luck
Don

[bioprof]

Dave,

I think your experience so far and mine with trying to find a PT experience in ACI rehab underscores a weak point in the Carticel process.  Through their printed material and website, Carticel does a good job of educating patients about the procedure and the stages of recovery.  They fall short, however, in providing information about where ACI-trained PT can be found.  I'm guessing that they haven't invested any resources in a PT training program for ACI.  Ironic, given the critical importance of PT rehab to the entire procedure's success.

If they agree with this assessment, I would encourage other members of this forum to contact Carticel and express their concern. 

Mike

[Nick_Knack]

You guys have me a little nervous.  I'm in the process of trying to find a PT with ACI experience, but my OS's office hasn't let me know who in my area has that kind of experience.  My other problem is finding a place that accepts my insurance. You would think Cigna would be covered almost everywhere.

Anyway, the place I went for my chondroplasty, the PT's had never even heard of ACI much less treated someone with it.  I'm a little "gun-shy" to go there for PT, but I don't want to have to pay out of network charges ($40 -$60 per visit) each time I go. That could get rather expensive.

Dave

i don't know about CIgna, but w/ the bastards at Oxford I have had to fight for everything from CPM post op, to rehab, to even getting ACI approved in the first place.  I won all three external appeals and the bastards had to pay each time.  Am I bitter?  Only slightly..... but the point is that you have to fight for everything w/ money-hungry insurance companies and you should and you will often win the external appeal (i.e. via the state's insurance reviewer).

I am not necessarily a big proponent of rehab.  Having had so many surgeries, I know what to do myself.  However, ACI is a bit different and you may need guidance and motivation.  My rehab person didn't have any ACI experience, but was a great therapist and followed Carticel's detailed protocol to the letter. 

YOu don't need to go to someone specializing in ACI rehab.  Just find a good therapist who does a lot of knees and seems open minded and not set in their ways.


Best of Luck,

Nick