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Author Topic: 2nd opinion---osteonecrosis?  (Read 6435 times)

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Offline kathleenj

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2nd opinion---osteonecrosis?
« on: April 26, 2005, 02:13:38 PM »
Well I went down to Boston yesterday to get another opinion on this knee of mine.  I'm hoping some of you may be able to shed some light on what he said and any experiences you may have had. 

He seems to think that the reason I am not progressing and the reason I am developing more chondral defects is probably osteonecrosis.  He explained that it can happen from all sorts of things..lupus, diabetes, tumors and fractures.  Since I am healthy and have no tumors he believes the actual OATS could have fractured something and caused the blood supply to be cut off.  He also did not like that the chondroplasty I had done in 12/04 was done with a thermal technique.  He said that is not really used too much now as it has been known to damage more cartilage and bone.  He was a bit concerned as my pain has increased the past couple of months which may indicate the deterioration of the cartilage.  In addition to that he said I have sheets of scar tissue in my patella tendon and behind it as well as a lump of it above the kneecap. 

His recommendation is to have a scope...check out the condition of the bone, clean up all the scar tissue and debribe any cartilage lesions and then do microfracture(yes even the tibial one) He personally wouldnt have done the Oats on me to begin with as my orginal defect was just under 1 cm.   Exactly what to do with the osteonecrosis is what I am confused about.  It seems like, from what I read, it only gets worse and usually needs to be cut out and a bone graft replaced.  I'm not sure as most things on the internet refer to hip osteonecrosis. 

I'm really not ready for another surgery or another 6-8 weeks non weightbearing.  My husband says I really should just schedule this and get it done while I am off work this summer but I'm not sure.  The though of another summer on crutches makes me cringe!  Maybe I'm apprehensive because I have been thru this already but I'm just not prepared for surgery right now.  Ideally I would like to wait until after my fall work season ends which is in November but I'm not sure if the osteonecrosis would get that much worse or if I can even make it that long.  I'm almost tempted to just not do anything and wait until I cant take it anymore.  My husband says that is stupid. (gotta love the support huh)

ANY ideas or thoughts would be greatly appreciated. 
Thanks, Kathy
right knee oats 12/03 scope autograft
right knee revision oats 6/04 open autograft
loa, plica excision, chondroplasty 12/04
synvisc 5/05
patellofemoral OA
patella baja

Offline JG

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Re: 2nd opinion---osteonecrosis?
« Reply #1 on: April 27, 2005, 07:24:52 AM »
Hi Kathy,

So you saw Minas?  So what are your thoughts about the visit other than he recommendation?  I'm considering him for ACI in the future since my surgeon is not a fan of the procedure.  Don't overreact to what he said.  At my one year mark I had a MRI that showed what was most likely necrotic plugs in my MFC.  The surrounding area didn't look very good either.  At the one year post-op scope, I had tons of scar tissue including behind the patella tendon.  However, the grafts looked pretty good, they just needed more time to heal.  I ended up having an anterior interval release for the patella tendon scar tissue.   I'm not sure how he can tell you that it's probably necrotic unless he has x-ray vision even with the scope.  I tried to get away with not having a MRI at the one year mark rather just having the scope.  My surgeon said that although he was handsome and super like Superman, he couldn't tell the condition of the bone without a MRI.  Even with the scope, they can't tell the condition of the bone, they only see the surface, not the underlying bone.  I would ask him about the MRI to detect the osteonecrosis?  After that a better decision can be made.

I'm not surprised about his comment about the OATS.  Most physicians will start with the least invasive procedure (although NWB and rehab is long).  Too bad your surgeon didn't realize this is the first step with this type probelm.  Also, last year I asked to have microfracture on my tibia.  Turns out I developed so much scar tissue in the first year post mosaicplaty that it scarred over the TP defect.  Not as good as microfracture, but it has been a decent hold over for the last year or so. 

I continue to deal with stress type fractures in my MFC and LTP.  Interesting thing, when I first started having knee problems, I had an MRI that showed synovial fluid in a fracture going up my femur from the MFC.  They only way it could get up there was if I had no articular cartilage at the base of the fracture. About once per year it creeps up.  When one or both get bad, I go see the OS and he orders a MRI and we talk about whether I want to go on crutches or go into a brace (if it only in one of the compartments).

I completely understand about going through it again.  You know, maybe you ask for the MRI then discuss the next step.  If the next step is scope, do it when it works for you (pain-wise and schedule-wise).  The crutch thing sucks.  And you need to live your life!

I'm going in next week at my two year mark to discuss three things.  First, my physiatrist thinks the scar tissue on my peroneal nerve needs to be cleaned off.  That doesn't sound good and freaks me out more than any knee surgery (other than a bad TP fracture).  Second, I have tons of clunks and some TP pain (might be nerve related).  I think the scar tissue that formed over the TP defect is loose.  And third, when should I have mosaicplasty on my LFC and his thoughts on ACI for my TP defect.  Since he doesn't do ACI, I need to find a surgeon to do it.  Also the timing is tricky.  Basically, I think I would go on the allograft waiting list maybe next winter (Dec-Jan), hopefully have the mosaicplasty procedure by Mar or April. During that procedure have the harvest for the ACI.  6 weeks later, I would have the ACI on the TP by either Bugbee, Mandelbaum, or Minas.

Keep my informed...Janice
Sept-99 - L knee LR
Aug-02 - L knee LR/menisectomy
Apr-03 - L Knee Mosaicplasty Using Allograft (18 grafts)/LR/debridement/menisectomy; Right Knee menisectomy.
Apr-04 - L Scope - LR/Lysis Adhesions

Offline kathleenj

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Re: 2nd opinion---osteonecrosis?
« Reply #2 on: April 27, 2005, 01:58:40 PM »
Hi janice,

Thanks for your insight.  I didnt see Minas yet.  My appointment with him isnt until Sept but I'm on a waiting list.  I saw Dr. Gill.  I actually was very impressed by him.  He has a presence about him and he speaks frankly and what seems honestly.  He definately took the time to explain things and didnt have 'his hand on the door waiting to leave'.   I asked about an MRI for the necrosis but he said that the mri will definately show irregularities and it would be difficult to determine if it was from healing or necrosis.  He said since I have had 3 surgeries on that area even the best radiologist would have a difficult time determining which it was.  A bone scan would be the best way to go but he said its quite expensive and a scope would reveal more as far as the effects of the necrosis.  He explained that I am a very healthy person, I have no alignment issues and no deformities of the hip and ankle, therefore, I should not be continueing to have the cartilage fall off my bone...the only thing that explains that would be necrosis.  He is not 100% certain but says that is the only thing that makes sense. 

So now of course is my decision making...do I wait for Minas' opinion in Sept, go with what Gill says, seek another opinion in the meantime.  Oh and btw, I'm staying away from my original OS for numerous reasons but mostly because I think he hasnt been completely honest with me and like to 'cut'. 
Decisions, decisions...Dr. Gill said he would send me a complete report so I can take everything in again and research anything and then call him with any questions before I make a decision.  I think for now I'll wait to get that report.  My husband is really pushing for me to do this this summer, I only wish I didnt have to wait to see Minas until Sept.  If I could see him now I would feel a bit better. 

Boy, you really do have a plan for yourself dont you?  That nerve thing really sounds a bit scarey.  But hey, if its really causing you lots of problems I suppose you should have it taken care of.  As for the rest...let me know what the doctor says I'm curious about the ACI on the TP defect.

I'll keep you posted on what I decide.
Kathy
right knee oats 12/03 scope autograft
right knee revision oats 6/04 open autograft
loa, plica excision, chondroplasty 12/04
synvisc 5/05
patellofemoral OA
patella baja

Offline blackbeltgirl

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Re: 2nd opinion---osteonecrosis?
« Reply #3 on: April 27, 2005, 02:57:02 PM »
Janice -

I'm also curious about ACI on the TP.  Or were you having the mosaicplasty there?

I've got 3 lesions, and have yet to decide how to deal with them.  One takes up the lateral half of the tibial plateau, 1 on the LFC, 1 in the trochelar groove.  All of them are too large for OATS.  My surgeon recommended leaving the TP alone, and just addressing the 2 lesions on the femur.  I'm at least a year away from a decision, so I'm trying to absorb everyone else's advice. 

Have you seen Minas, Bugbee, or Mandelbaum?  I know Minas is in Boston - where do the other 2 practice?

Thanks,
Jess
ACI was supposed to be 2/21/06.  On 6/29/06 Insurance co said have another scope, and if it still looks good, they'll ok the ACI.
Microfracture Dec 7, 2004
   3cm x 6cm lesion, LFC; 3cm x 1cm lesion, trochlear groove; lateral tibial plateau lesion
2nd degree black belt, tae kwon do (had to stop)

Offline kathleenj

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Re: 2nd opinion---osteonecrosis?
« Reply #4 on: April 27, 2005, 03:53:11 PM »
Janice,
I just re-read your post.  In regards to the MRI.  You said that you had one and it showed that the plugs may have been necrotic but when you had the scope they looked good but were still healing.  I think this is what Dr. Gill was referring to when he said that the MRI wont be very helpful.  In your case the docs and radiologist said it was necrosis but it was if fact healing bone...Dr. Gill said it is really hard to determine the difference on an MRI.  If he does the MRI it will most definately show an irregularity but it will not determine if its healing bone or necrosis.  Kinda stinks huh?
Kathy

Oh, and one more thing.  If you are seriously considering coming to Boston to see Minas I would highly recommend making that appointment now.  He seems to have about a 6 month wait for an appointment..gosh, I wish I knew that, I would have made an appointment months ago when I was considering seeing him in the future.  Dumb me!!
« Last Edit: April 27, 2005, 04:09:26 PM by kathleenj »
right knee oats 12/03 scope autograft
right knee revision oats 6/04 open autograft
loa, plica excision, chondroplasty 12/04
synvisc 5/05
patellofemoral OA
patella baja

Offline JG

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Re: 2nd opinion---osteonecrosis?
« Reply #5 on: April 28, 2005, 06:13:52 AM »
Jess,

I was planning on having the mosaicplasty on the LFC and ACI on the LTP.  I too was told after my very first with my current surgeon that my defect was way too big for OATS and I was a good candidate for TKR.  I just wouldn't have it.  My largest defect was my trochlea (more lateral).  It took 13 grafts (10-12 mm across and 10 mm deep).  The smallest is the MFC which took 5 grafts (same size).  Although grade IV, I didn't have the LFC done primarily due to the fact that it almost runs into the trochlea on the lateral size.  He felt that was too risky to run the grafts all the way from the trochlea to the LFC.

As far as the ACI goes, it is being done on the TP.  Problem is that the access to the TP is bad.  To my understanding they have to detach the LCL and popliateal ligaments to gain access.  OATS or large allografts on the TP is very technically challenging according to my surgeon.  With the OATS they use a retrograde approach (bottom to top thru the tibia).  I think this is really rare.  The large allograft for TP has been done most by Allan Gross in Toronto.  This is not a shell graft or small plug but basically replacing the entire TP with one huge graft. Think about having your entire TP taken out and replaced.  You can imagine the problem...the donor TP graft surface would have to almost match your old one exactly.  I'm not sure that I would ever try either of these, maybe if I had a really bad TP fracture.

In terms of the other surgeons, Bugbee is one of the biggies in terms of cartilage docs.  He is in San Diego.  Mandelbaum to my understanding is an ACI guy and is in Irvine (LA area).  My surgeon recommends him.  I'm in the SF area so these two are probably the best for me.

Who is your OS and where do you live?  Have you talked to one of the OS's who specialize in this. They see really big cartilage problems (salvage cases) so maybe yours is not as big as you think and they would have other options.  Seriously, don't mess around with anyone else. 

Why are you waiting a year to make the decision.  It won't get better nor will you get younger.  I'm in my mid 30's and have to admit that I don't heal like I did at 18 or 28 for that matter.

Janice
Sept-99 - L knee LR
Aug-02 - L knee LR/menisectomy
Apr-03 - L Knee Mosaicplasty Using Allograft (18 grafts)/LR/debridement/menisectomy; Right Knee menisectomy.
Apr-04 - L Scope - LR/Lysis Adhesions

Offline JG

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Re: 2nd opinion---osteonecrosis?
« Reply #6 on: April 28, 2005, 06:29:43 AM »
Kathy,

My surgeon is on the same page as yours.  Basically he used the MRI to look at the underlying bone and the scope to confirm necrosis (thru allograft death) or healing (which was the case for me).  The MRI can tell you the extent of possible necrosis (such as depth).

In terms of Minas, I don't see how it will work for ACI.  First, I would have to have my surgeon coordinate with Minas.  My surgeon would have to take the cartilage for the Carticle procedure and send it to Genzyme.  So I would have mosaicplasty and at week 6 fly to Boston for ACI.  I don't think any of my physician will allow me to fly 5 hours across the country.  I have had multiple DVTs and 1 PE.  I have a rare blood problem.  Flying 1 hour to see Mandelbaum or Bugbee is more reasonable.

You should do the bone scan, I've had a few of them.  Like I said, I seem to struggle with stress fractures and possible necrotic bone.  I'm still not convinced that he can tell if the bone is necrotic by the scope.

For me there is not good reason why my cartilage is falling off the bone.  I have my theories, but that's all they are.  Hey attached a very old scope picture of my trochlea defect.  I'll have my mosaicplasty scanned an load them.

Janice



[attachment deleted by admin]
Sept-99 - L knee LR
Aug-02 - L knee LR/menisectomy
Apr-03 - L Knee Mosaicplasty Using Allograft (18 grafts)/LR/debridement/menisectomy; Right Knee menisectomy.
Apr-04 - L Scope - LR/Lysis Adhesions

Offline blackbeltgirl

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Re: 2nd opinion---osteonecrosis?
« Reply #7 on: April 28, 2005, 12:41:05 PM »
Janice -

Thanks for the advice.  Now I know why my OS was planning on leaving the TP alone at this time.

My OS is in Richmond, VA, and I do have confidence in him.  But I will be traveling to NY/NJ and possibly Boston for some additional opinions (by surgeons who have larger repertoire of treatment options) before signing uip.  I am waiting a year because I need to get my weight down.  I'm currently 50-60 pounds overweight, after losing 45 pounds.  The chances of success go down greatly with the extra weight, and there's no point doing the ACI and having it fail due to my weight.  I figured, when I get down another 20 pounds I will start making my appointments for 2nd and 3rd opinions.  That way, if I decide to see Minas it won't mean delaying any treatment.

Thanks again for the answers. 
Jess
ACI was supposed to be 2/21/06.  On 6/29/06 Insurance co said have another scope, and if it still looks good, they'll ok the ACI.
Microfracture Dec 7, 2004
   3cm x 6cm lesion, LFC; 3cm x 1cm lesion, trochlear groove; lateral tibial plateau lesion
2nd degree black belt, tae kwon do (had to stop)

Offline JG

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Re: 2nd opinion---osteonecrosis?
« Reply #8 on: May 03, 2005, 03:50:09 PM »
Hey Kathy,

So as much as I'm trying to not have a surgery this year, I'm going to see my surgeon today about having my peroneal nerve decompressed.  Sounds like I need to see one of the other surgeons in the group to actually have it done.  I'm a little more concerned about this type procedure than my mosaicplasty.  I finally got a chance to talk to my PT last night about my nerve problem (Although she is around when I rehab on Mondays, I'm not on her schedule so we rarely talk at length).  I didn't realize that my trainer hadn't updated her about the magnitude of the problem.  My PTs inital reaction was, "you have to have it decompressed".  It was mainly driven by the fact that parts of my foot are numb and that it is really sensitive to dorsi- or plantar flex the ankle.  I'm not too thrilled, but as long as I am under, I'm going to have the knee cleaned out.  I was going in to talk to him about three things, the nerve, the clunks (primarily due to the scar tissue that was coving my LTP defects came loose during my fall in December), and my next mosaicplasty procedure and ACI for the LTP.  We will see what he says.  One thing that I did find out from my PT was that the surgeon who does the nerve decompression surgeon does ACI and has done tibia ACI.  It's great to know that I am not forced to travel to have the ACI.

How have you been feeling?  I've been great outside of the nerve.

Janice
Sept-99 - L knee LR
Aug-02 - L knee LR/menisectomy
Apr-03 - L Knee Mosaicplasty Using Allograft (18 grafts)/LR/debridement/menisectomy; Right Knee menisectomy.
Apr-04 - L Scope - LR/Lysis Adhesions

Offline kathleenj

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Re: 2nd opinion---osteonecrosis?
« Reply #9 on: May 03, 2005, 07:39:02 PM »
Janice,

I totally understand about trying to avoid surgery this year!!  Although, if this nerve problem is a concern you really should have it taken care of and heck, a scar tissue clean can only make things better.  Besides, it should give you a good idea of whats going on in there, check out that tibial area too. Do you think he will want to just do it all, mosaicplasty and all, kind of a tag team thing since you will be out anyway?  How exactly do they do a nerve decompression?  I really cant imagine that, although it does sound a little concerning.  Let me know what the docs say today.

As to how I am feeling, I'm doing ok.  Functioning.  The knee is holding up ok but the pain, especially at night for some reason, is getting a bit tough.  A couple of nights I've had to pop a codeine just to get a full rest.  To say the least, the lack of sleep is making me grouchy!!  I've never really had a major problem sleeping except after the surgeries so this has me a little concerned. 

I am still waiting for the report from Dr. Gill so I'm still in limbo as to what to do.  Like I have said, my husband says I really should get this taken care of. And the sooner the better.  I would like to hold off until I can see Minas but I honestly dont think I can.  In the meantime, I have made yet another appointment for next week to see another knee specialist.  He is up in NH, apparently a very highly regarded knee specialist who is the team physician for the US Ski Team.  He has been running a knee clinic up there since 1989 and specializes in only knees.   My husband, of course, wants me to get one more opinion.  I think he is so disgusted with the fact that this has been going on for so long and is looking for someone else to convience me that this needs to be addressed.  I cant really blame him.  Especially when he hears that I probably had the wrong procedure to begin with and then that the original OS hadnt been honest with me.  He just wants me to be better, I suppose.  Besides, he's the one I'm elbowing when I am tossing and turning at night. 

Anyway, Let me know how the appointment goes today.  I'll keep you posted on what I decide to do.

Take care,
Kathy 
right knee oats 12/03 scope autograft
right knee revision oats 6/04 open autograft
loa, plica excision, chondroplasty 12/04
synvisc 5/05
patellofemoral OA
patella baja

Offline JG

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Re: 2nd opinion---osteonecrosis?
« Reply #10 on: May 04, 2005, 03:14:11 AM »
Hi Kathy,

I just got back from my surgeon.  Seems like my physiatrist had talked to my surgeon after my last visit because my surgeon was up to speed on what was going on with my nerve.  Basically the last nerve block I had was less of a "relieve" the pain thing and more a "are the symptoms really coming from the nerve" thing.  Because I got relief from the block, the pain is indeed coming from the common peroneal nerve.  He said the next step is to decompress the nerve by both scrapping the scar tissue away from the nerve and I believe releasing any areas that are trapping the nerve (similar to LR, but for the nerve).  The incision goes from about 3 cm above the posterior aspect of the knee, runs down down to the posterior aspect of the fibula, wraps around the fibular head and runs to the anterior part of the fibula.  So all in all, I think the scar is 7 or 8 cm long (maybe longer). He said recover was really easy, like 4 to 6 weeks.

I did mention that I wanted to have surgery-free year and he said we could wait another 7 months...we chuckled.  So I threw out looking at my knee and he said sure stating that it gives him another "data point" in determining what to do with the tibia and LFC.  He reiterated that the tibia is a problem since access is poor at best.  I agreed that this was a fair and good next step.  At the same time, I'm not going to rush anything.  I'm kind of shaking my head, but not in a really bad way. We'll see.

That's it for now...Janice
Sept-99 - L knee LR
Aug-02 - L knee LR/menisectomy
Apr-03 - L Knee Mosaicplasty Using Allograft (18 grafts)/LR/debridement/menisectomy; Right Knee menisectomy.
Apr-04 - L Scope - LR/Lysis Adhesions

Offline kathleenj

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Re: 2nd opinion---osteonecrosis?
« Reply #11 on: May 06, 2005, 06:12:09 PM »
Janice,

Sounds like the appointment went well...or as well as could be expected.  Good to hear that the surgeon was up to speed with the nerve issue.  That helps. 
So are you going to wait a while?  Your post wasnt very decisive.  I understand your hesitation but let me know what you have decided.

Hope you are doing ok.
kathy
right knee oats 12/03 scope autograft
right knee revision oats 6/04 open autograft
loa, plica excision, chondroplasty 12/04
synvisc 5/05
patellofemoral OA
patella baja

Offline JG

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Re: 2nd opinion---osteonecrosis?
« Reply #12 on: May 07, 2005, 07:33:35 PM »
Kathy,

It did go well.  He said that I'm not going to get much relief from additional nerve blocks, so I am having the surgery.  The nerve just never seems to turn off at this point.  I've had 4 days of constant nerve pain, so it's time to take care of it.  I've been complaining for almost two years and have had 3 nerve blocks.  The first gave me relief for for about 4 months, the second about 3 months and the third about 3 days.  So I'm ready, just need to get a date, hopefully some time in May.

Talk to you later, Janice
Sept-99 - L knee LR
Aug-02 - L knee LR/menisectomy
Apr-03 - L Knee Mosaicplasty Using Allograft (18 grafts)/LR/debridement/menisectomy; Right Knee menisectomy.
Apr-04 - L Scope - LR/Lysis Adhesions

Offline kathleenj

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Re: 2nd opinion---osteonecrosis?
« Reply #13 on: May 10, 2005, 03:55:31 PM »
Well I just got back from the Doc.  This was now my 3rd opinion.  Hearing about possible necrosis kind of scared the bejesus out of me and made my husband insist on another opinion.  I'm really glad I did!!!  I havent felt this positive about my knee in a long time.  Basically this doc doesnt see it being necrotic.  Good thing...but he did say its probably a degenerative thing.  He said not to give up hope on the knee and there are a few things we can do.  First and foremost...avoid surgery!!!  I was so happy to hear that.  He would like me to get fitted for heel wedges that will take the pressure off my medial joint and wear a brace to help reduce the swelling.  He also said that right now I have a pretty significant tilt to my kneecap which may be from the atrophy I still have.  I have come a long way with the muscles but still have a bit to go but have been stuck in a rut recently because of the inability to progress due to pain. He is not sure how much of my pain is coming from my medial compartment or from the kneecap itself.  I can pretty much tell when I have the pain from the chondral lesions...that ice pic stabbing pain...but the general all over hurting knee is hard to tell if its chondral or kneecap pain.  So...he wants to try Synvisc.
He is hoping that the Synvisc will calm things down a while and allow me to progress some more with the rehab so that the tilt can be corrected.  He did seem a little concerned with the alignment of this dumb knee.  Q angle high, tilted kneecap and I apparently sublux as well.  I knew I was popping out a little but just thought it was due to muscle weakness and some scar tissue. 
So theres the plan.  I'm so happy I can avoid surgery for a while!!!  I'm willing to try the synvisc at this point because nothing else seems to be working.  He wants to give it until Sept to see what kind of results I have with the shots, wedging and brace.  If at that point, things arent improving then we will consider other options.  Those options being microfracture and a lateral release. 
For now I am a very happy camper!!!!
Kathy   
right knee oats 12/03 scope autograft
right knee revision oats 6/04 open autograft
loa, plica excision, chondroplasty 12/04
synvisc 5/05
patellofemoral OA
patella baja

Offline Beauzer

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Re: 2nd opinion---osteonecrosis?
« Reply #14 on: May 11, 2005, 03:17:33 PM »
Glad to hear the good news, Kathy!  It certainly is nice to avoid surgery for awhile (hopefully a long while).

I just sat down and really read through this whole section for the first time, having come back from my post-op visit and having been told that the crux of my problem was a deep area of osteonecrosis under the artritic areas they grafted with the OATS.  Not what I (or my OS, for that matter) had expected, and hinted at, but not obvious on MRI, I might add.  So, that being said, I was suddenly VERY interested in this. 

Because of this, they used big plugs (1cm diameter, 2 cm deep - 2 plugs total).  He thought that they got down to good solid bone stock too.  I also had 2 thermal procedures (to my MCL and medial capsule, though, not the MFC) in the past.  I wonder if those contributed to this?  ???

Danielle
32 - R knee gone to hell
lat. meniscus 94
ACL, chondroplasty 98
Chondroplasty 99
Screw fell out into joint, med. meniscus, microfracture 99
MCL/med. capsule recon, med. meniscus 00
Chondroplasty 04
Chrondroplasty 1/05
OATS 4/05 for OCD lesion
AVN, MFC fracture 10/05