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Author Topic: What else can I do?  (Read 4043 times)

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Offline AC

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What else can I do?
« on: July 20, 2002, 12:31:40 AM »
 ???

Hello there.

In case you forget, I posted on the old board.  I have PFS.  I have had knee pain since I was about 6 and I am now 23.  It has gotten worse and worse over the years, waking me up at night and some days now I can hardly walk.  The doctor (OS) told me my knees were maltracking horribly and that I have PFS.  He said I also have flat feet which is contributing.  My knees pop, grind, curunch and pop with each step and it is uncomfortable, plus it aches all the time and some days I have sharp pains.  He prescribed me a brace, Physio, and orthotics.  THe brace helps a little, but it was supposed to only be for sports, I have been wearing it almost every day!!  The physio gave me exercises, ultrasound, IFC, and taping of the kneecap.  The taping did help (but when the tape came off the good effects were gone).  Anyways, after 6 weeks of physio, the PT told me I don't need to bother coming anymore because if it hasn't help yet (it hasn't, it is still getting worse), then it isn't going to.  I should still do my exercises at home, but not hold my breath for any miracle results.

I didn't end up getting the orthotics as they are very expensive and not covered under my insurance.   I am going to see my OS on August first.  Is there anything else he could offer me?  He told me we would have to discuss our surgical options if this stuff didn't help.

I am starting to get discouraged.  I am scared to death of surgery.  Not of the procedure, but that something may go wrong and I may end up worse then before :-(

I am still able to particpate in hockey, golf, baseball and skiing which I love.  But the next day after I can hardly walk and am screaming in pain.  My performance in my sports is going downhill fast too, and something has to change.  I am just afraid that if I had a procedure, I might end up worse then I am now and I won't be able to do sports.

Do you guys have any thoughts on this?

Anyone gotten better without surgery?
With surgery?

I am only 23, too young to give up my active life due to knee pain.... the way it is going now, I am starting to dread my sports because after I can't walk or move.  :-(

Thanks for the advice guys.
« Last Edit: July 30, 2002, 12:22:04 PM by admin »
Lateral Release along with patella cleanup and bone spur shaving - Early September 2002 - Had a blood clot (DVT) as a complication.
TTT, Scope, and LR in mid June 2003.

Offline Danielle

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Re: What else can I do?
« Reply #1 on: July 20, 2002, 03:26:28 AM »
I was scared of surgery too as I am only 15. I had a Trillat TTT and LR to correct a subluxing right patella. It wasn't nearly as bad as I thought it would be and I will be snowboarding by the first snow of the season and water skiing and wakeboarding again by next summer! You will not have to give up your active lifestyle for more that a few months (depending on your surgery) Feel free to e-mail me with any questions.

~*~Danielle~*~
I had a modified Trillat TTT and LR done on 6/26/02
Original injury in October of 1998 due to a horseback riding accident

Offline a7yritch

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Re: What else can I do?
« Reply #2 on: July 20, 2002, 04:08:51 AM »
Hi,
Sorry you are having such a hard time!  I'm sorry I can't offer you any advise as to your knee, I'm really new to this whole knee issue.  To date, I've just had 1 scope and was just told I need a tibial osteotomy.  I haven't even gone for my 2nd opinion yet.

However,  I do wear orthotics, and have for most of my adult life.  Soon after my car accident, in which i injured my knee (along with lots of other things) my OS insisted on a new pair of orthotics.  I wasn't happy about it since the cost was over $300.  but i bit the bullet and got them anyway.  Ill tell you what, they were a great investment.  I didn't think I needed a new pair, but as soon as I put them on I felt a difference.  My OS added added a small wedge under 1 heel to help correct a very slight limb length difference.  It seemed to take the pressure off of my knee, which of course meant less pain.  

I know they aren't cheap and most insurances don't cover them, but sometimes if your OS sends a letter to the ins. co. insisting that they are medically necessary, they make an exception.  In anycase, its worth the cost!!!  Give it a try, it cant hurt and if $300 helps ease the pain, isn't it worth it?

Good luck, I hope you find relief soon!  

To painfree days --Angela :)

--To painfree Days--

Offline Danielle

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Re: What else can I do?
« Reply #3 on: July 20, 2002, 07:02:35 AM »
I forgot to tell you earlier...My chiropractor got me some orthotics but they were covered by my parents' insurance and they were awesome for my scoliosis but didn't do much for my knee. I think though that by that time (3 years after initial injury) my condition was to advanced to be helped by the orthotics. Either way, I would go for it if I were you...Surgery is going to be MUCH more expensive than orthotics so try it. Good luck!!

~*~Danielle~*~
I had a modified Trillat TTT and LR done on 6/26/02
Original injury in October of 1998 due to a horseback riding accident

Offline khaoskat

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Re: What else can I do?
« Reply #4 on: July 22, 2002, 02:05:05 AM »
AC:

I to, was afraid to have the surgery done.  I probably should have had my arthroscopic surgery a year a go, when I was first diagnoised with the meniscal tear, but instead, I went with conservative treatment.

The thing you have to take into consideration is:

Is the pain you are currently in having a negative impact on your quality of life.  

Most arthroscopic surgery have very minimal risks.  Yes, you still have the same possible post op complications as you do for any other surgery, but the risk is significantly less, due to the surgery being minimally invasive.

Right now I am 6 1/2 weeks post op from partial menisectomy on both the lateral and medial meniscus on the left knee.  I am having more pain now than I did before the surgery.

Also, the surgery you have, might correct on problem, only to reveal another problem that the first one was/is masking.  Which I think might be the case for me.  In which case, further surgery might be needed.

But, you have a very good chance of having a much better quality of life after your surgery than you currently do.  Most of us on the kneeguru site are either new and looking for support prior to our surgery, or have had complications.  Many people leave after their surgery/recover is over, and they are doing better.

Khaoskat

Offline AC

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Re: What else can I do?
« Reply #5 on: July 28, 2002, 09:36:29 PM »
Thanks Everyone for all your advice.

I am oing to see my O/S on Thursday and will let you know what he suggests.

If anyone else has had any similar experiences and gotten at least somewhat better, I would love to hear your story.  Most of the stories on here seem to be discouraging so hopefully someone has had some good results and at least somewhat recovered from PFS.

Thanks again everyone.
Lateral Release along with patella cleanup and bone spur shaving - Early September 2002 - Had a blood clot (DVT) as a complication.
TTT, Scope, and LR in mid June 2003.

Iona_-Uk

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Re: What else can I do?
« Reply #6 on: July 28, 2002, 10:39:17 PM »
I had two unsuccessful LR's to correct maltracking, you name the noise they did it!

I had surgery  (lateral release (LR) medial reefing, plica removal and scar tissue removal) 3 weeks ago and the effect has been magic.

I too have flat feet and my mum always thought that this caused my knee pain but she should got me insoles got exercises for me but it didn't work and the surgeon said it wasn't likely to now (I'm 20), but I can help feeling that having flat feet may have somewhat contributed to the first lateral realeases failing?

I would discuss further medical opions with your os when you see him but also ask about the success of surgery and what he would likely to do for your surgically, the more knowledge you have the better.

Make sure you know thatwhatever surgery there is a risk of failure as much as there is a chance of success and don't go into surgery without knowing that. I did and it is something I regret doing to this day. Luckily I had a better surgeon this time who before putting my anme on this list for surgery said to me "I can guarentee I will do my best for you but I can't guarentee you will get and effect from surgery", with that he gave me literature of success and failing and left me with the ball in my court.

If you can, see a chriopodidt to see if they think that flat feet may be attriubting to your knee pain as well.

Above all, make sure you do what you think is best for you.

Iona

Offline Kara

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Re: What else can I do?
« Reply #7 on: July 29, 2002, 07:39:44 AM »
AC,

I had 3 LR and the first one was good but didn't last due to scar tissue buildup. The last 2 I feel should not have been done. But I was young and didn't do much research. Now I have a great OS that specializes in only knees. I am 9 weeks post TTT and I believe it is the best thing I have done for myself. I did major research this time and asked to speak with other patients who had the same procedure I needed. I was very confident after all of that and only wished I hadn't messed with the LR before.
I can't believe I waited in pain for as long as I did because I thought it would just "go away" or that surgery would make it worse.
Do some homework on your OS and don't settle for less than you deserve.

Good luck.
« Last Edit: July 29, 2002, 07:40:32 AM by Kara »
rt knee: LR 10/88-3/94-2/00 ;
left knee: TTT 5/02

Offline Deborah

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Re: What else can I do?
« Reply #8 on: July 30, 2002, 01:53:36 AM »
AC,

If a PFS patient has failed PT (and has been religious in doing the home program, then the OS will usually start to talk about surgery.  why you need to address is the source of your patella's maltracking.

If your feet are causing your patella to maltrack, and orthotics are suggested, try the OTC ones first to see if they can help you.  Before doing this, have a consultation with a podiatrist to get a recommendation as to the best one to try.  Podiatrist's specialize in feet and will know better than yor OS what may help you.  You may also be able to get your OS and podiatrist to write letters of medical necessity to your insurance company for the custom orthotics.  You may also , after you get the LMNs, go to your HR office and ask them to intervene with your carrier, as this simple move may help keep you from having major surgery and losing a great deal of time from work.  I have had HR intervene when Aetna said i could not have a CryoCuff, and HR told them to pay for it and they did.

If you can't get the orthotics, your OS will probably start talking about PFS surgery, and since your maltracking is from flat feet, I'm not sure which structures in your knee (besides the obvious one) have gone out of whack.  Do you know if you later retinaculum is tootight as a result of your foot troubles?  If it's not, and your OS suggests a lateral release, he's recommending the wrong procedure.  A lateral release should only be used to alleviate a maltracking patella if it's too tight and pulling the patella laterally out of the groove.

If you're not a candidate for a LR, which can be done through the 'scope, your OS may recommend some sort of distal or open proximal alignment that does not include the LR, such as medial reefing.  This site offers information on all the types of distal (TTTs) and prximal (soft tissue) alignments.  Do your research and prepare questions prior to  your 8/1 visit with your OS.  also, get to a podiatrist and see if you can get your OS and the PD to write up the reasons and the money-saving the insurance company would have is they paid for orthotics, but also, in the mean time, get the PD to recommend an OTC orthotic that slips into your shoe and gives you added support.  if you've ever bought serious running shoes (I used to run before my knee died), they usually come with a set of arch supports to be used either right away, if you're flat-footed, or when the natural arch of the shoe has worn down due to the beating running shoes take when they are worn by a serious runner.

Take care, and good luck with all these issues.  If you're not sure if your LR is too tight, call your PT and ask.  Also ask if your ITB (ilio-tibial band is too tight becasue that can help pull the kneecap out of whack too.  Take it from a veteran who has every PFS cause in the book.  I hope you're able to avoid surgery; it should be a last ditch effort made out of desperation.

Deborah
« Last Edit: July 30, 2002, 12:24:04 PM by admin »
Manip arthro adhes 1/02; TKR 10/01; vmo rep, med reef, chondro, LR 11/00; pat resurf LR 2/00; arth let meisc (80%)1/99; TTT, chondro 8/98; LR(open), med menisc, chondro 6/97; arth med men, OCD les rem

Offline The KNEEguru

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Re: What else can I do?
« Reply #9 on: July 30, 2002, 12:27:34 PM »
I would advise that you try to afford the orthotic and give it a go. It is for people like you, who have not yet had surgery for PFS, that this amazing team of people on this bulletin board persevere with their patient responses. So much patellar improvement can be often gained by non-operative measures - and once you have had surgery your knee mechanics, by the very fact of the surgery alone, are more complicated.

Waking up at night with pain, though, may indicate that you have joint surface damage (arthritis) - so I am not precluding surgery in the future to manage this - just advocating that you give it a go with the orthotics first.
« Last Edit: July 30, 2002, 12:29:31 PM by admin »
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