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Author Topic: Open Debridement and Proximal Z-plasty  (Read 185041 times)

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Offline captainruss

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Re: Open Debridement and Proximal Z-plasty
« Reply #735 on: February 16, 2012, 06:49:18 PM »
Pam,

You should write a book....as you know more than every doctor in Florida combined.  Thank you...I do have a intrathecal pain infusion pump for my back....but it is only as good as the doctor running it.  I am on my third pain specialist and they have not suggested any of the different medications listed in that Intractable Pain Handbook you put in your blog.  They have no clues about the topical lotion you are talking about.

I have asked for 2 years for hormone and supplements as I put on 40 pounds when on oxycontin.  I have detoxed a couple of times due to insurance screw ups or changing doctors and I drop weight in days.

My pump ran out a month ago as the pain doctor only works tuesday and thursday.  I had to wait five days after receiving heavy does of hydropmorphone, bupivicane, and cholonodine for the past 4 years.  I went to the ER, but they would not treat me unless I went inpatient and allowed them to put me in detox.  That was a tough 5 days.

I am starting to get aggressive.  With all the pill mills in Florida, you can't get pain medication in the doses I take.  The DEA has cut off everyone from CVS to the little guys.  The only ones they are hurting is the honest people.

I understand amputation is a huge step....but phantom pain cannot be any worse than the actual pain I suffer with every day.  I must get back to work.  I cannot get doctors to comprehend teenagers...college....cars .....insurance...food for 3 teenagers??
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline captainruss

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Re: Open Debridement and Proximal Z-plasty
« Reply #736 on: February 17, 2012, 04:35:01 AM »
Pam,

If I hit the lotto, I promise to contribute to the missmyknee foundation for the betterment of AF sufferers worldwide!!

The lotion that was compounded for you.  Can you give me a name and number of the pain doctor/pharmacy you utilized.

Yes, I go to pain specialists every month.  They are not very imaginative.  I have made a list of everything in the "Intractable Pain Hand Book" from your blog.  I have made an appointment and will either get some help or see another one.  I have actually had my OS refer me to another pain doctor just to get the ball rolling.  I have been so hesitant to demand the relief listed in this handbook, but now I have some backup. 

I did not think about the 80 percent deal.  I have out of network insurance.  Actually, if I wait to the second half of the calendar year, I get put on catostrophic level by my insurance.  I have no copay, coinsurance, or anything.  I would have to come up with the dough, but I would get reimbursed.  I know it is prying, but ball park...what did a denervation cost approximately?

I will try Dr. Scott Wolfort in Gulf Breeze.  I was looking at the web site for the Mayo Clinic.  I took my father to the Mayo Clinic in Minnesota when he was diagnosed with cancer.  Do you have any experience with the folks at the Mayo Clinic in Jacksonville FL?  It is 3 hours a way, but I can make that. 

Have you had any relief from accupuncture?  I am told that the doctors from China are best.  Any advice?

I apologize for the constant pestering.  If I get too annoying, just let me know.  I can't sleep....so I just think all of the time.  I am so excited just getting some alternatives.  I go crazy when they tell me "you need to live with it."

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline missmyknee

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Re: Open Debridement and Proximal Z-plasty
« Reply #737 on: February 23, 2012, 03:05:29 AM »
Hi Russ

I'd rather not give out the name of my pain doctor or the pharmacy. You pain doctor should be able to know how to create the lotion from the list of meds I gave you.

I live in the middle of the country, so I have no experience with any of the Mayo clinics.

I developed insulin resistance/ metabolic syndrome from my intractable pain and from the extreme stress I was under from just having had an ankle fusion and my mother's illness and death. I was left in charge of the funeral and disposition of the house and household goods. Because of that , I was probably putting out high levels of cortisol. I gained a lot of weight , esp in the belly, insatiable sugar cravings, extremely high BP, high cholesterol and triglicerides and insulin resistance , which is TOO much insulin in the body. I kept telling my doctors about my alarming weight gain, which I NEVER had a problem with my whole life. I started searching my weight gain combined, sugar cravings along with my alarming high BP ( which got as high as 210/109) and came across the terms, insulin resistance, metabolic syndrome. I asked my doc to be tested for insulin resistance. The lab did a fasting blood sugar. The lab results showed I was correct. My doctor put me on a drug called metformin. This is usually used for type 2 diabetes. Metabolic syndrome is a precursor to type 2 diabetes. My cholesterol levels were high, which I never had before. I was started on a medication called, Simvastatin. I had been on the cymbalta for about 2 yrs. I had read where cymbalta can cause this. My problems also coincided with the start of cymbalta. The cymbalta was started because it has neuropathic pain qualities. I told my doctor I wanted off of the cymbalta for that reason and a few others... side effects such as tinnitus, night terrors, memory loss. It took about 3 mos to wean off. I also take 2 other meds for high BP

My pain ( increase in the burning pain) picked up a bit from stopping the cymbalta , but worth it to get off that med. I've lost about 20lbs so far. I have about another 15lbs, before I get back to the weight and clothing size I was, when I first started pain management.

I've never tried acupuncture. I don't believe it could help if it is a nerve problem esp encased in scar tissue. I feel my problems are way beyond acupuncture.

Pam
 

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 captainruss

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Re: Open Debridement and Proximal Z-plasty
« Reply #738 on: February 24, 2012, 04:16:16 AM »
Pam,

I understand regarding your pain specialist.  I can imagine your concern if he told you some crazy guy in Florida called him wanting a topical remedy he heard about on the internet! 

I also totally relate to the weight gain.  It is really hard as I had oral pain medication.  I have the medtronics pain pump, which you would think would keep me from detoxing if I stop taking oral meds, but it does not.  I have had two experiences detoxing once when I moved from michigan to florida and my doctor in michigan stopped treating me.  I had been receiving 3 month scripts and traveled to michigan once every 6 months to be checked.  He went on vacation, and a fill in freaked when he heard my refill request.  My doc had me on three times the maximum dose.  So, I am less than a week before I run out and he gets confronted by a partner and cuts me off.  Wow.  The thing I did find was I dropped huge weight when I am not on the oral meds.......40 pounds in two weeks.  I gained it right back when I went on it and I am over weight from normal.  I used to swim every day between my lunch cruise and dinner cruise. 

I am just trying to find anything that helps with the pain.  My GP had me hospitalized once as my BP was thru the roof because of pain.  He told my wife I was going to die (widow maker) with a heart attack.  I had no choice, but get screamed at by the cardiologist because he says I am healthy enough to run a marathon after a brutal stress test and cath. 

The toughest part for me is I cannot sleep.  I take sleep medication, pain medication, and muscle relaxers....and I dance with joy if I can sleep 2 hours.  Usually up every hour.  I get so tired I fall asleep sitting in my chair...at the dinner table...reading a book.

I refill my polar cooler.....move to another position (back, side) and take another muscle relaxer to try to get 4 hours each night.  Last night I slept less than 3 hours...but kept waking up the wife.  She hates sleeping alone so a lot of the time I just lay there.   3 a.m. last night I got up and worked on homework.  She gets up for work at 6 and then I try to get another hour or two...but have to get the kids up and start school.

Now I am really worried about my daughter.  She has a knee problem and I am so afraid I will get it wrong?

Do you have any advice on a patellofemoral specialist??

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline missmyknee

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Re: Open Debridement and Proximal Z-plasty
« Reply #739 on: February 24, 2012, 05:15:53 AM »
Hi Russ

Besides the suggestions I gave you in another post, you can try sending an email to Sue B Westin. She is Dr Noyes director of clinical and applied research and has her own consulting. She is located in Florida. She might be able to direct you to someone in Florida. She is good about answering emails.    Her Email is      [email protected]

There is a doctor that posts on kneeguru occasionally down in the patellofemoral section. His name is Mark Sanders. He is located in Houston. He is a PF specialist but might know of someone in Florida to see. He goes by drmark on KG. You can send him a private message to get his opinion

Another Dr That posts occasionally on KG is Dr Ron Grelsamer. He has even contributed material for the Information Hub.

Pam
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 captainruss

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Re: Open Debridement and Proximal Z-plasty
« Reply #740 on: February 24, 2012, 12:22:36 PM »
Pam,

As always, excellent information.  I have sent an email to Ms. Sue Westin.  I will track down Mark Sanders.  I will travel anywhere to get my daughter treated.  Do you have an opinion on a doctor diagnosing a subluxation and chondromalcia......suggesting a lateral release for the patient at 14 years old?  I have read some alarming material about considering her entire leg and its rotational stability.  She fractured a growth plate years ago and they put a cast on it.  Now her one growth plate is longer than the other.  He indicated he could go in and staple one side so the shorter one can catch up? 

He actually stated he did not think she needed that or to worry about this.  My other question is if he does a LR does that not make the patella that much more unstable?  If it is tracking incorrectly and you loosen it, does this not cause more instability?  I also read that it might heal on its own as she continues to grow?  She is pretty tall and has been nearly two years on her cycle so I am not sure how much more she will grow.  He believes there is one more growth spurt in her?

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline missmyknee

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Re: Open Debridement and Proximal Z-plasty
« Reply #741 on: February 24, 2012, 06:35:26 PM »
Hi Russ

I wish I could help you on your LR questions. The most I know is that it is done for lateral tilt. You definitely need professional opinions on that. Kids knees and bone problems are tricky esp where growth plates are concerned. Here is Dr Sanders's website. He does all that limb malalignment care. He is a very straight forward answering man.                   

http://www.sandersclinic.net/

The best Dr in country for malalignment issues is Dr Robert Tiege in Michigan.

Pam
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 captainruss

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Re: Open Debridement and Proximal Z-plasty
« Reply #742 on: February 24, 2012, 07:28:14 PM »
Pam,

I thank you.  I am contacting Dr Tiege's office and will see if we can get an appointment.  We are probably going to make a road trip and visit the relatives in Michigan while checking this out.

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline captainruss

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Re: Open Debridement and Proximal Z-plasty
« Reply #743 on: February 24, 2012, 11:57:44 PM »
Pam,

I went to Dr. Sanders web site and put in my name and cell number.....he called me back personally an hour ago while I was taking the girls to Civil Air Patrol!  We talked for almost 30 minutes and I am going to fly Kiani out there for an appointment.  He says there is no way my OS could diagnose Kiani with out a CT scan and that her being either knock kneed or bow legged (I don't know how to tell which) guarantees that she needs to be straightened.  I know that is not the medical term, but it works for me.

We were all kind of surprised he called me personally.

I am waiting for a call back fro Dr. Tiege.  Question:  If I can only afford to fly Kiani to either Michigan or Texas, which doctor to I go see and which do I send copies of the CT/MRI/Xrays and ask for a long distance opinion??????

Where would you take your daughter??  I also wanted to thank you again for your help.  I know I don't say that enough, but you are really keeping me from ripping my hair out.

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline missmyknee

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Re: Open Debridement and Proximal Z-plasty
« Reply #744 on: February 25, 2012, 05:41:45 AM »
Hi Russ

I'm glad Dr Sanders called you back. BTW, your daughter's name sounds pretty  ;D  Dr Sanders certainly has a following down in the patellofemoral section. Crankerchick has used him and biggest fan. From what I can see on his website, he follows Dr Teige's teachings when it comes to malalignment issues. Dr Teige is much older and the "Father" of this method. Several on this forum , some girls, have used Dr Teige. A friend of mine used him to have a femoral osteotomy for malalignment while in her 40's. Something she had problems with all her life. Had a TTT for it but still had problems til she saw Dr Teige. There was a 15-16yr old (older now) girl named Lindsey on the website who had both legs done ( one at a time) for malalignment. When there are issues with bowing or the opposite, it is called miserable malalignment. She saw Dr Teige for that and had surgery. Put Lindsey in the search box and you will bring up all her posts. She even lists email address for contact. Those are the ones that come to mind. I don't visit the patellofemoral section too often.

It probably would help to talk to posters who have used either doctor. Both are nice, easy to talk to, informative. Dr Sanders gives his personal cell phone # to his patients to get a hold of him 24/7 and it was impressive he called you personally. Here is a section on his website discussing patellofemoral issues make sure you page down , he mentions Dr Teige's teachings.

http://www.sandersclinic.net/common_patello.html

Dr Teige
http://www.sportsmd.com/DoctorDetail/id/960/ai/+/sp/+/state/michigan/n/robert_teitge.aspx

Hopefully Dr Teige will call you soon so you can talk to both before deciding.

Pam
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

drmark

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Re: Open Debridement and Proximal Z-plasty
« Reply #745 on: February 26, 2012, 01:19:07 AM »
I just read this post, and couldn't help but be amused.
Dr. Noyes and Teitge are both about half a generation older than I, and they have been my principle friends and teachers.  Sue BW and I are good friends, and we just published a paper together in the American Journal of Sports Medicine.  Its pretty much a done deal that if this young lady sees Dr. T, Dr. N, or myself she will probably hear the same story.  As a young kid of 55,  am honored to be in the company of giants.

Offline captainruss

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Re: Open Debridement and Proximal Z-plasty
« Reply #746 on: February 26, 2012, 05:51:07 AM »
Dr. Sanders,

I was very impressed with the fact that you would call me personally.  Please understand that when I started asking questions about my daughter's condition, the OS that has operated on my knee stated she needed a LR.  He did this after having XRAYS and an MRI.  No CT scan and despite my asking about her alignment (she looks bow legged or knock kneed) he did not think it needed addressing.  Prior to your call on another thread, the moderator of this site stated he/she knew Dr. Tietge, but had no specific knowledge on you.  The poster I was speaking with, "missmyknee" is one of many who have known people who recommend you.

I am bringing my daughter to Dallas, but I am being very cautious as I explained to you briefly on the telephone, I have had multiple surgeries.  First, I was told my knee was bad enough to warrant a TKR at 47.  I am the one who took that diagnosis without a second or third opinion.  My knee was inflamed, hot, and very painful right out of recovery.  My first OS actually had me in the operating room for a second TKR (new joint laying on the table next to me) when he took a fluid or tissue sample while I was on the table.  It came back negative like the previous tests.  He cut out a pile of scar tissue and closed me.  I was pretty good for a couple of weeks and then the stiffness, inflammation, etc. returned to a higher degree.  OS #1 now tells me there is nothing more he can do for me.

I am recommended by friends (unfortunately did not know about KG) to see a doctor in Orlando who was the team doctor for the Orlando Magic and actually did surgery on Shaq's knees.  I went to him and despite multiple tests and cultures (all negative) he told me he needed to take out the TKR, put in an antibiotic spacer, and six weeks of vancomycin.  He promised me that if he took the samples from inside my tibia and fibula he would know specifically in 2 weeks what the infection was and how to treat it.  I again agree without a second or third opinion.  Two weeks post op and no cultures grow.  He actually ignores me and after 13 weeks the home care people call the infectious disease doctor and complain about the extensive use of vancomycin.  Instead of six weeks, six months later and he is still ignoring me stating that my knee is so bad, he must have a plastic surgeon standing by to close my wound when he puts the knee back in.  He never did replace my knee joint.

I now go to OS #3 who was actually my back/shoulder doctor.  He was not permitted by his previous partners to do revisions.  He goes out on his own and rushes me to surgery because I have been on an antibiotic spacer for 7 months and grinding down my leg bones.  He cleans us my knee the first time...the second time he actually puts in a TKR.  I have immediate trouble with flexion, heat, and inflammation.  He does a third surgery to lengthen my tendon and put in a different size spacer in the TKR.  I am still suffering from inflammation and heat...no ROM so he does a 4th procedure and revises what he refers to as massive scar tissue.  He takes out what he can and puts me in immediate PT (day after release from hospital) five days a week to aggressively flex my knee to hopefully combat the AF that my wife discovered while reading about my condition on the web.  That aggressive PT has reduced the progression of the AF, but I am lacking in ROM and my pain increasing almost on a daily basis.  He does Xrays and MRI only to find that I now have Heterotropic Ossification.  My hero...the guy who has fixed my back and shoulders now tells me he can do no more for my knee except fusing it solid to eliminate the pain or to amputate it and go to a prosthetic.  He believes another surgery to revise the HO and subsequent radiation to prevent its return will expose me to a risk of infection....

I am 2 years out of work....have spent everything I saved working the past 25 years, can barely get around with a walker...and have a 14 year old daughter who has an excellent chance of going to the U.S. Naval Academy.  By the way, my original knee injury 29 years ago cost me an appointment to Annapolis from then Senator Jack Welborn of Michigan.  So....I am scarred to death of making a mistake with my daughter.  I pretty much have one shot of visiting your clinic and then trying to send your results to get a second opinion.  Why, because I did not get a second opinion on myself. 

The sad part, is although I was in pain 2 years ago and my knee swelled, I was working 70 hours a week and supporting my family.  I could do everything except run any distance.  I could run a short distance and walk long distances.  I am now much worse off than I was prior to the initial surgery.  By asking questions, I am not in any way disrespecting your knowledge or ability.  In all honesty, I trusted my three previous OS thinking they would know any possible complications.  If you throw in all of the surgeries, PT, and a 9 day hospitalization with pneumonia, I am justifiably cautious.  Especially with my beautiful little girl. 

I do thank you for calling me back.  That was very reassuring to both myself and my daughter sitting next to me.  We will be "UP" to see you as soon as your schedule permits.  Thank you for your personal interest.....she is definitely worth your time to guarantee her future.

Respectfully,

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

drmark

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Re: Open Debridement and Proximal Z-plasty
« Reply #747 on: February 26, 2012, 12:42:30 PM »
I can certainly understand where you are coming from.  There is a problem with multiple opinions.  If you go by the "majority rule" I can assure you from where you are standing now, it will be do a lateral release, its minimally invasive, and lets see what happens.  This is the standard arthroscopic surgeon's response.

People mentioned in my previous post will be more likely to all the testing, and tell you that if there is a crooked bone, it needs to be straightened.  This opinion would be considered radical by the arthroscopic lateral release doctors.

Everyone in 1930s England, thought Churchill as nuts as he ragged on about Hitler.  People in France though DeGaulle was crazy as he believe the Maginot line wasn't  impregnable.  As I hope you have learned by now,  being right constitutes a true majority of one.
« Last Edit: February 26, 2012, 02:38:03 PM by drmark »

Offline captainruss

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Re: Open Debridement and Proximal Z-plasty
« Reply #748 on: February 26, 2012, 09:42:24 PM »
Dr. Sanders,

Absolutely.  Please don't misunderstand my asking for another opinion (yours) as a capitulation to mob rule!  I am certainly not one of the brightest bulbs in the lamp, but having suffered with a knee and the penalty for taking the first answer provided, I knew the opinion to proceed with a lateral release and without treating the underlying condition of her inequality side to side with her growth plates simply means the condition will repeat itself. 

I look forward to meeting you. 

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline missmyknee

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Re: Open Debridement and Proximal Z-plasty
« Reply #749 on: February 27, 2012, 02:31:25 AM »
Hi Russ,drmark

Dr Mark, I was directing him to the "giants" , which included you  ;)

This is a pretty interesting presentation done by Dr Lonnie Paulos. Too bad he is no longer in practice.

http://etelligentmedia.com/ghsortho/Dr._Paulos-The_Maligned_Patella_7_23_10%5B1%5D.ppt.

Pam
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