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Author Topic: Please Help Me...I need some advice  (Read 1221 times)

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Offline Mr.F

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Please Help Me...I need some advice
« on: September 09, 2005, 06:53:40 PM »
Let me tell you about my situation, and then could you please give me advice.....So here we go........... When I was 14 years old I had an operation on each of my knees.  I had micro surgery and re-alignment.  Everything looked great, rehab went as planned, and the doctor told me "to keep up your physical therapy" and all sould be fine.  Well 4 and 5 years later I had another operation on each knee.  This time I had micro surgery, Lateral and Distal re-ailgment and some hardware place in my legs.  Surgery went great, no problems with rehab, and the doctor said all looks great (just keep up the physical therapy and you should be fine).  Oh, in the worst case situation you could have some complications 20 years down the raod and need TKR or what would be a spacer/washer place under the patella.

Well its 16 years later and have have reached the "down the road" situation.  I am not at the stage where I can have TKR.  I have a new doctor.  I saw him again today and he told me about my options.  I have tried the OTC medications for pain relief, physical therapy, cortozone, and synvics (I refuse to take pain killers because they mask the pain.  The problem is still there and more damage can occur).  My options are: 1)Do nothing and wait, 2)Pain management speciallist, 3)Patellectomy (removal of my kneecap-both legs), or 4)Patella-Femoral Replacement (placing a washer/spacer) under the kneecap to eliminate pain (I was told this surgery has a low success rate- I might have to have this operation frequently because it might not hold).

Does anybody know someone who has had either of these operations and what was their experiences (patellectomy or patella-femoral replacement)?  What advice can you give me?

I am a 35 year old male with 22 years of knee problems.  I am not sure what caused the initial problems.  Genetics or sports (or a combination) could be the problem(s).

Thank you for your advice..... Mr.F

Offline ralemap

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Re: Please Help Me...I need some advice
« Reply #1 on: September 09, 2005, 07:21:19 PM »
Mr. F.

I cannot specifically address, well... any of your questions, but I wanted to say...WOW. You've been through a lot and have some tough choices ahead of you. I hope it goes well for you. I'm sure there will be some insightful posts here that will be able to provide you some answers/information. Good luck to you.

Pam

Offline kath

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Re: Please Help Me...I need some advice
« Reply #2 on: September 09, 2005, 08:29:26 PM »
Mr.F.

If you search for patellectomy under the search option at the top of this page, you can read the posts by those who have had this procedure done.  The majority of people may have been fine at the start but developed problems down the road.  Having your knee cap removed changes the whole dynamic of how your knee functions.  I don't believe patellectomies are done very often any more, especially as partial knee replacement (patella/femoral) has been proven to be a good option in most cases.

Personally, a patellectomy is the very last thing I would ever have done, but that's coming from someone who has only read about the results from those who have had them.  You can check out info on patellectomy on this link.

http://www.kneeguru.co.uk/html/steps/step_05_patella/patellectomy.html

I think anyone here would recommend you get more opinions on your knees from OS's who specialize in KNEES.  You've said what surgeries you've had but not the reason for them.  There are options available and PFJR is one of them...they are becoming more common and though are more challenging than a medial or lateral PKR, most people seem to be having good results from the surgery.

Best of luck!

kath

Bi-lateral unicompartmental Nov 2004

Offline Mr.F

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Re: Please Help Me...I need some advice
« Reply #3 on: September 09, 2005, 10:27:47 PM »
Kath,

I have been to 3 OS for this problem.  I have had problems finding a doctor who 1)will see me, 2)Will tell me more than 1 month of PT and pain killers, and 3)I will not perform surgery.  The surgeries I have had were at young ages, and the last two were because of knee disaligment.   These were extreme surgeries.  I have even seen this OS again.  He refused to do anything but 1 month of therapy and pain killers.  I have been directed to two other OS in my area.  They happen to be the top 2 OS in my area/State.  One, prior to examining me or looking at my x-rays and MRI films, said you "I will not operate on you".  This is because of my age and the prior operations I have had.

I had to go through my health care provider to get a third opinion.  We came up with my present OS.  He has been suggesting and trying everything.  He is sending my films to another OS who specializes in knees to see what he will suggest.  Right now I have my patella rubbing against the other bones in my legs.  I have extremely painful arthritus and limited, to basically no, mobility.
(Other doctors said that I need to find a job where I can sit and not move.  If you know of one of these that pays a good salary please tell me).

Unfortunately my case history has been one where I was the worst case situation.  This all started when I was 13 and had pain in my knee(s).  The doctors put me on pain medicines.  They had no idea what to do.  My knees were slowly shifting and moving.  Eventually my right kneecap was no longer centered properly (moved up and over to the right).  The same thing happend to my left knee (up and to the left).  I had micro surgery with a release.  I blew one kneecap out picking up a screwdriver and the other slowly moved again.  These two times I reconstructive surgery (micro, knee re-aligment, tendon re-aligment, and screws placed in my legs).  Now I have arthritus, extreme pain, and bone damage.

My current OS is not jumping into surgery.  He is moving with caution.  These are the options he feels would best help me.

I do appreciate your advice and I will look into these and other options....Thank you.

Offline mebel01

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Re: Please Help Me...I need some advice
« Reply #4 on: September 09, 2005, 11:49:14 PM »
Hello MR. F,

I cant address the specifics of your particular injury at this stage, however, I thought I might weigh in on the cause, and direct you to some literature that might send you in the right direction.  At your age, you need to not only solve the pain problem, but deal with the underlying cause.  Namely, that which got you to this stage of damage in the first place. 

If you ask a western doctor what causes degrading of the cartilage surface of the knees your will get replies ranging from we don't know, to heredetary defects, to you may have damaged it as a kid.....and so on.  If your lucky, you will talk to a western doc who understands that the biggest cause of cartilage degrading is mis-alignment.  Western docs want to go in and fix the mis-alignment by cutting bones and anatomically changing your alignment.  Attacking the site of the problem is the western way.... we deal with things in a symptomatic fashion. 

The mis-alginment, unless your body is abnormal, and most are not, is in the alignment of your musculoskeletal frame.  In order to explain this concept fully would take many pages, but in a nutshell, dysfunctional postural muscles are typically the cause of gradual wearing away of the cartialge.  This included knees, hips and ankles, and can also effect the shoulder joints if alignment is out for many years.  Functional alignment means that if you stood at profile, I can draw a straight line down your lateral view and that line will intersect your shoulder joint, hip joint, knee, and ankle.  The body must also be aligned from front to back, meaning that if you carry one of your hips more forward than the other for example, your moving your body in a dysfunctional way.  Its no different then driving a car on a set of tires that are out of balance.  The tread wears unevenly, which is typically evident if we look at damge to the knee.

If it were a natural progression, then everyones knees would wear out, and that is not the case. 

Pick up a copy of a book called Pain Free, by Pete Egoscue, and do some research on proper alignment of the 8 load bearing joints of the body.  Whether or not you end up getting any additional surgeries, aligning your load bearing joints will bring you some relief, and will help you down the road to avoid causing further damage.

Incidentally, better than half of all people you pass on the street have mild to serious mis-alignments, but it takes years for the damage to take place.

Hope that helps.... drop me a note if you have more questions.

Marty


 
Dec 2004, Osteochondritis Dissecans removed from medial femoral chondyle

Offline kath

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Re: Please Help Me...I need some advice
« Reply #5 on: September 10, 2005, 12:21:02 AM »
Mr. F.

I guess I'm somewhat skeptical when an OS says there is nothing they can do for you...I believe that though there may not be a cure, there is definitely something better than living with decreased or no mobility and pain.  It sounds like your current OS is exploring all the options and that is terrific.

I can only tell you that I too suffered from painful OA, bone on bone due to genetics and malalignment.  My first OS thought I had been in a car accident.  I suffered for years going through the normal route of PT, NSAIDS, ultra sound etc etc.  I'm not sure from your description of surgeries, but it sounds like you had an osteotomy to correct your alignment?

If your pain is due to progressing OA in the patella-femoral joint (hence the recommendation of PFJR), then it's possible you will see improvement with a PFJR.

The 2nd OS who saw you said he would not operate on you due to your age and the surgeries you've had...but this was prior to him even examining you or looking at your MRIs and xrays?  I would write him off.  Your surgeries were years ago and the problems you are dealing with are NOW.  A lot of OS will look at a 30 something patient and say you are too young for replacement surgery.

You will find that many people on this site have seen 4,5 or more specialists until they found someone to help them.  This is not doctor shopping though many docs would disagree...this is looking for the most talented specialized professionals in the field of medicine who recognize your problem and are up-to-date with the newest technology available.

If you are comfortable and trust the current OS you have, then listen to him and try the routes he suggests.  I would rather explore and exhaust the non-surgical options first and then decide on the surgical route.  In the meantime, find out what you can do for pain...see a pain management doc, do all the research you can so you can be your own advocate.  Ultimately there is an answer out there...might not be the perfect pain free answer, but something a heck of a lot better than not being able to enjoy life!

I wish you the best of luck...please keep us in the know as to how you are doing.  Also, read through this site...not just the bulletin board but also the website as well.  It is very informative.

kath
« Last Edit: September 10, 2005, 12:30:50 AM by kath »
Bi-lateral unicompartmental Nov 2004

Offline kath

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Re: Please Help Me...I need some advice
« Reply #6 on: September 10, 2005, 12:44:12 AM »
Hi again...I was just reading through some of the other threads and realized you did have an osteotomy.  Knowing that, it sounds like you've had success for a number of years with it!  Ultimately though, if OA is a problem, the next step is usually replacement surgery.  I'm sure that is why your doctors have told you they will not operate due to your age.

Here are some of our members who have had a PFJR...foxpot, jancan, kmap71 and RebelsNMisfits.  RebelsNMisfits, whose name is Earl just recently had his surgery.

I've attached this link for you.  Mr.F, also check out the Unicompartmental Knee Replacement subject under ARTHRITIS.

http://www.so.com.au/knee/PFJR/pfj/pfjreplacement.htm

Also, this REHAB surgery link

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=14143.0

Hope this helps!

kath
« Last Edit: September 10, 2005, 12:49:02 AM by kath »
Bi-lateral unicompartmental Nov 2004

Offline Mr.F

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Re: Please Help Me...I need some advice
« Reply #7 on: September 10, 2005, 01:12:35 AM »
Again I want to thank all of you for your advice, books, and links.  I will read the book and check out the links....Have a great weekend.















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