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Author Topic: 14yrs old and facing patellectomy (continuation of yesterdays post)  (Read 2091 times)

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Offline anxiousknee14

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im 14yrs old and have been through HELL (excuse the anger..) i was born without knee cap groves,this never was a problem, i had been in sports since i was 3, i.e soccor basketball biking hiking running tennis horse back riding etc etc etc. well when i was 10 i was running (not an unusual thing for me..)and i fell  :( a very painful and life changing fall.i couldnt move my knee at all and it was bent in a weird way. my parents had to come and get me from scgool and rused me to an OS. when he finally got me to unbend my knee my knee cap was all the way over to the side  :o. This would happen everytime i bent my knee causing my non exsistant knee cap grove and knee cap to hit grind against each other evertime i move. After months of physical therapy,numerous accounts of falling because of knee giving out and numerous hours and constant tears of pain...the doc finally decided to try a surgery to tighten down my now rock shaped knee cap down to keep it in place so i wouldnt be falling all the time.That went fine for  awheile then last year it started giving out and constant pain again so i had another surgery to tighten some ligiments to hold my now small knee cap into place. now less then a year later im having constant pain that no medicene can help and fall up to 5 times a day. I went to the doc yesterday and he said i either have a choice of living with the pain and falling or have a patellectomy. he said before i make my choice he wants me to get 3 other opinions.

i need some advice on this...the pain is excrutiating..i cant think stright,it makes me sick in my stomach,i cant concentrate at school,and i lose sleep. The giving out all the time is emotionally challanging, im always thinking am i going to fall am i going to fall and it has caused me severallly other injuries ie concussion and sprained wrist. the only thing im extremely worried about with this procedure is being able to play sports,sports were my life before this happened now i cant do anything. i love to be outside and i hate sleeping or watching tv. i always want to be outside but people are scared to let me out of there sites because i might fall and no one there to help me.

if you could please help me out with this i need advice on whether or not to have the patellectomy or tough it out. other peoples views on how the did after the surgery would be appreciated to.
 ???

thanks for listening,
a very frustrated teen
14
born without knee cap groves
has had 2 major knee surgeries
possibe patellectomy this summer
knee cap shaped like rock
constant pain and falling
"its easier to run, replacing all this pain with something numb"
"these words are all i have so i write them, i seem to need them just to get by"

Offline Doc79316

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Re: 14yrs old and facing patellectomy (continuation of yesterdays post)
« Reply #1 on: January 27, 2006, 09:56:15 PM »
Hi,

Wow! I'm sorry you're having so many problems with your knee. My problems only started when I was 14, so I suppose I have nothing to moan about.

Anyway - I think to have a patellectomy/removal of your kneecap is a little drastic to say the least. It's a particularly big surgery and is known to cause certain limitations afterwards. There are others on this forum like Capless who've had it done and I don't know of anyone who'd recommend it.

I think you should definitely get another 2 or 3 opinions independently. I'm surprise that an OS would perform such an operation so readily on someone so young.

I have recently had quite major knee surgery and if this doesn't work, my OS gave me 2 further options.
1) The trochlea groove that my kneecap sits in can be surgically deepened as it's very shallow, or
2) a replacement kneecap

For the first option I'd have to travel across the Country as there aren't many surgeons here who'd do it. For the replacement kneecap, this would involve actually leaving my kneecap where it is and adding metalwork behind it to stabilise it. Also, there'd be metalwork to reconstruct the trochlea groove.

Maybe this could be an option for you, or maybe something similar. You could ask your OS what alternatives there are.
Every surgery I've had (see signature) has been to prevent my kneecap from dislocating laterally. It had a habit of sitting on the outside of my leg and generally doing it's own thing. But now (fingers x'd) it doesn't dislocate, wobble about or buckle under me when I'm least expecting it.

having said that, at 14 you're still growing so the surgeries I've had may not yet be suitable for you as I'm 32. But I will be able to start cycling, swimming and participating in other sports which aren't as agressive on the knee joints as running etc.

Please don't give up hope. There is a surgeon out there who'll give you the right answers for you. You should be able to return to lower impact sports one day.

In the meantime, are you wearing any sort of knee support or knee brace? It may be worth considering to help with stability in the short term.

If I can help in any other way all please ask. Keep your head up. You can get through this. Keep us posted.

Regards,

Laura
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline anxiousknee14

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Re: 14yrs old and facing patellectomy (continuation of yesterdays post)
« Reply #2 on: January 27, 2006, 10:02:58 PM »
wow youve been through alot   my problems with all the other opyions (weve been read  through hundreds) are a. i would have to wait till im 18 or 20 b.im allergic to the stuff they need to use ie: stitches, staples,butterfly tape,foam,the medicene or c. my other problems with my kee would controdict what would need to be.  im almost determined i cant live like this any more. the pian is insane and im always in constant fear of falling. im almost hesitant to go to other doctors because they dont know as much about me and my history or personality as my other doctor does. im just so confused right now and getting so sick of this... :-[
14
born without knee cap groves
has had 2 major knee surgeries
possibe patellectomy this summer
knee cap shaped like rock
constant pain and falling
"its easier to run, replacing all this pain with something numb"
"these words are all i have so i write them, i seem to need them just to get by"

Offline MHillman

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Re: 14yrs old and facing patellectomy (continuation of yesterdays post)
« Reply #3 on: January 28, 2006, 01:41:37 AM »
I would not let anyone remove my kneecap.  There is a site on the net about patella femoral replacements.  they just replace the trochlear groove and the knee cap this is excellent for young patients who cannot have a total knee replacement yet.  This Dr. is in New York I believe.  I will find the web address and send it to you.  get as many opinions as you can get, and by the way, where do you live?  may be some help advising you to drs. specializing with this problem

Offline messed^kneegurl

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Re: 14yrs old and facing patellectomy (continuation of yesterdays post)
« Reply #4 on: January 28, 2006, 05:04:14 AM »
im 14yrs old and have been through HELL (excuse the anger..) i was born without knee cap groves,this never was a problem, i had been in sports since i was 3, i.e soccor basketball biking hiking running tennis horse back riding etc etc etc. well when i was 10 i was running (not an unusual thing for me..)and i fell  :( a very painful and life changing fall.i couldnt move my knee at all and it was bent in a weird way. my parents had to come and get me from scgool and rused me to an OS. when he finally got me to unbend my knee my knee cap was all the way over to the side  :o. This would happen everytime i bent my knee causing my non exsistant knee cap grove and knee cap to hit grind against each other evertime i move. After months of physical therapy,numerous accounts of falling because of knee giving out and numerous hours and constant tears of pain...the doc finally decided to try a surgery to tighten down my now rock shaped knee cap down to keep it in place so i wouldnt be falling all the time.That went fine for  awheile then last year it started giving out and constant pain again so i had another surgery to tighten some ligiments to hold my now small knee cap into place. now less then a year later im having constant pain that no medicene can help and fall up to 5 times a day. I went to the doc yesterday and he said i either have a choice of living with the pain and falling or have a patellectomy. he said before i make my choice he wants me to get 3 other opinions.

i need some advice on this...the pain is excrutiating..i cant think stright,it makes me sick in my stomach,i cant concentrate at school,and i lose sleep. The giving out all the time is emotionally challanging, im always thinking am i going to fall am i going to fall and it has caused me severallly other injuries ie concussion and sprained wrist. the only thing im extremely worried about with this procedure is being able to play sports,sports were my life before this happened now i cant do anything. i love to be outside and i hate sleeping or watching tv. i always want to be outside but people are scared to let me out of there sites because i might fall and no one there to help me.

if you could please help me out with this i need advice on whether or not to have the patellectomy or tough it out. other peoples views on how the did after the surgery would be appreciated to.
 ???

thanks for listening,
a very frustrated teen


Hey gurly i know how ya feel
im 14 2
and i had acl and meniscul repair last year the day b4 thnxgivin
i was doing great @ 6 months wen i slipped on the stupid ice >:(
o man was i pissed
i broke my kneecap into 3 pieces
so our knee problems rn't the same
and i don't know if u feel this way 2
but i say that knees SUCK
absolutely
man o man
and i play very competitive soccer, ski, play volleyball, softball, ice skate, hike, swim, bike, and just about nething else active that u can do
actually i TORE my acl and meniscus playing soccer
 :'(
i feel 4 ya gurly
im getting surgery on monday (my second one with lots of pins and wires yipee right... wrong)
wish me luck
haha
tata
olivia

Offline Heather M.

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Re: 14yrs old and facing patellectomy (continuation of yesterdays post)
« Reply #5 on: January 28, 2006, 05:05:32 AM »
I know you're sick of this--I went through three years of AGONY at age 13 when my knee problems first set in....my kneecap dislocated 3 times during this period of my life, and subluxed so many I lost count after about 150 (but who's counting??).  I know how painful is.

And it seems so logical to think about a patellectomy--if the kneecap hurts/is causing pain, take it out.  Simple.

But nothing with the knee is ever simple.  Ask people on here who have had patellectomy, and almost to a person they will tell you that THEY CONTINUED TO DISLOCATE AFTER THE KNEECAP WAS REMOVED.  Sorry to shout, but I want to be very clear.  The extensor mechanism can STILL continue to dislocate after the kneecap is removed; actually, I hear this is more painful, because the patient can't grab the kneecap and shove it back in.  A patellectomy knee that dislocates the extensor mechanism is likely an automatic trip to the ER to have the knee professionally reduced/relocated.

So PLEASE see a juvenile knee specialist.  I can't imagine ANYONE in this day and age recommending patellectomy for a 14 year old with dislocation problems!  There are multiple surgeries that can address this problem very successfully.  Your current OS may not do them, so can't recommend them...it's a major problem.  Please move Heaven and Earth to get another opinion--but you also have to make sure that the doctor giving the second opinion is highly qualified to treat PFS in juveniles.

As for the allergies and such...don't borrow problems regarding a future surgery.  There are alternative ingredients for patients with latex and nickel allergies, so with some advance planning and honest discussions I'm sure you could get around this.  We have patients here who have been 'allergic' to LIGHT after their surgeries, leading to prolonged wound closure processes.  No joke.  And their problems were diagnosed and successfully treated.  So however strange your allergic or immune system....don't worry!  Okay?  You may not even need surgery, so again, try not to borrow trouble.  You are growing right now, and have all kinds of hormones rushing through your system--hormones that are linked to elastic connective tissues and even frank hyper-mobility.  This will pass.

Is it possible to work with a GP or pain specialist to get you some acupuncture, home e-stim, lidoderm patches, OTC and/or prescription meds,. a brace, and so forth?  Most people who manage their PFS do it with a series of tools, exercises, and medications--there is no one thing that is the magic bullet.  Including surgery.  Instead, a series of things can be adjusted and controlled.  This might include activity modification.  I was stressing my knee by swimming competitively and running & playing soccer in the off season.  Then I was in a car accident at 17 and was seriously injured.  The forced 30 day bed rest really calmed my knee down, believe it or not!  So the point is that even though I'd modified my workouts, reduced running (especially on hard surfaces, only ran on dirt track), and changed my events (from individual medly or IM to butterfly and backstroke because the breaststroke and freestyle kick were KILLING me)...even though I'd done all this, it wasn't enough.  My knee wanted complete rest to calm down, and once it got it, things improved.  I mean bedrest, too.  No walking was allowed because I fractured my sternum and injured my heart, so they didn't want me to get my pulse up at all.  Turned out it was the miracle knee cure I'd been looking for.

Anyway, I know you're in lots of pain, and it consumes youre life.  You shouldnt' have to deal with this at your age.  But I'm really afraid you are letting yourself in for a lifetime of problems by considering a patellectomy.  Yes, this procedure is still done in the US...but only rarely, and usually only on older patients who are okay with having to use a cane for the rest of their lives.  That is a distinct possibility, because you will automatically lose about 35%+ of your quad strength simply by not having the kneecap there anymore.  It is a required element for the knee joint's function--so much so that even when it is badly shattered or diseased or damaged, most surgeons would do ANYTHING to not remove it.  Because patellectomy runs the very real risk of crippling the patient.  

And honestly, there are much better ways to address dislocation/subluxation. Patellectomy will NOT correct this, and in fact it can get worse for some people due to the loss of strength in the muscles around the knee joint that stabilize things.  Please reconsider.  To make a decision driven by extreme pain...well, I've done it.  We all have.  Hopefully you can learn from our mistakes!  I know it seems impossible, but you will get through this.  When you finish growing, your knee will likely stabilize and things will improve dramatically.  Other things like braces, pain modalities, patellar taping, and specialized PT can make the difference between really living and just getting through each day in agony.  

Don't lose faith.  See if you can find a great PT and talk to your GP right away about pain relief modalities.  I really think taping/bracing, home e-stim, and things like Lidoderm patches and acupuncture can make a difference in your pain levels very quickly.  Medication can help as well--they can have my Celebrex when they pry it from my cold, dead fingers!!  If it is taken off the market I'll buy it in Mexico.  Seriously, though, it cuts my pain in half.  All of these things I've described can even lower the pain levels enough so you could work on gentle strengthening....and that might be just what you need to stabilize the joint.

Take care and keep us posted.  Do research on patellectomy and you'll see it's only done these days in older patients, or when there is a traumatic fracture, or if there is a tumor.  And hang in there.  It will get better if you can find some tools to help reduce your pain and stabilize your joint a bit.  If you can get through these growth years, the problem may sort itself; if not, there are at least half a dozen procedures that together or by themselves can help add stability to the joint.

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline Heather M.

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Re: 14yrs old and facing patellectomy (continuation of yesterdays post)
« Reply #6 on: January 28, 2006, 05:09:37 AM »
Because it's so important, I wanted to list some of the qualities I've found that great PT's share.  Hopefully, it will help someone out there...how is the average patient supposed to judge a PT?  The majority of people who have knee pain or surgery will do a brief course of PT and get better and never look back.  But for those of us who need more, we really don't have the tools to judge a good therapist.  Maybe these tips will help--anyone else should feel free to add to this list:

Those who have PFS or hypermobility need PT--and I mean SPECIALIZED PT, not just someone who slaps hot packs on your knee and watches you do straight leg raises!  I jused to think I had good PT's, but each time I got a new one I saw the flaws in the previous one.  I've had a couple of truly great therapists, and there are a couple of things that mark them:  a) they have no more than one patient for every block of time--they don't count on a PT assistant so they can juggle 5 patients an hour!!  b) they often have advanced degrees in multiple disciplines, and have titles like Physical Therapist, MSc (Master's Degree Science), and ATC (certified athletic trainer, meaning advanced training in sports medicine beyond the standard PT study regimen).  c) They put your hands on you--for more than 30 seconds--each session.  This means myo-fascial release (very special massage technique), gentle joint manipulation, stretching, ultrasound and other modalities, etc.  d) They are very gifted with patellar taping techniques, meaning each patient gets a different type of tape (assuming they have different problems, which they usually do).  One PT clinic I went to had everyone taped the same way, from me with my kneecap too low to someone recoverying from ACL reconstruction to a 64 year old lady waiting for a knee replacement.  That's just crazy--we all had different problems.  e) Really great PT's treat a lot of athletes, some even specializing in certain sports.  Find out who sees professional and amateur athletes in your city/area--chances are they go to a couple of clinics only.  f) My best PT's have not worked in national chains, they have been in small clinics or run their own practices.  Most had worked in large "brand name" PT locations like Health South and had not felt comfortable with the "assembly line" approach to cramming as many patient as possible into each block of time.  g) Great PT's will do a 60-90 minute assessment of the patient on the first visit, and will sit down and discuss problem areas, patient goals, and the proposed approach for getting the patient there.

I'm sure there are some qualities of a great PT that I've left out.  I know I've droned a bit on the topic, but I really think a good PT is as critical as a good OS.  In fact, if you have a great PT, he/she can get you through the next few months or longer as you look for THE OS who is going to help you.

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline lilrosie06

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Re: 14yrs old and facing patellectomy (continuation of yesterdays post)
« Reply #7 on: January 29, 2006, 04:43:17 PM »
I have problems with constant subluxations, and they are considering a reconstruction...what do you all think of this?

DONNA
LEFT KNEE INJURY-1-05
SCOPE 4-05, LR 1-07, TKR 6-07, MUA 7-07, REVISION 10-07, INFECTION CLEANOUT 11-07, REVISION 4-08, EXPLANT 2-09 ANTIBIOTIC SPACER PUT IN, AND PICC LINE FOR 6 WEEKS
REPLACEMENT 5-09

BACK IN PT NOW....HIP AND FOOT PAIN, POSSIBLY SCIATIC

Offline Naomi

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Re: 14yrs old and facing patellectomy (continuation of yesterdays post)
« Reply #8 on: January 31, 2006, 04:17:33 PM »
Hello.
I can sympathise, although I am only 30, I had my kneecap removed and not replaced in October. Mine was the result of falling over, it shattered into 8 pieces and they couldn't repair it.
I have no idea what it would be like to be your age and going through it. I am having physio now, three months post op, which is going ok. Its a very long process to get back on your feet when you have no kneecap, so if you and everyone involved decide to go for it, then be prepared for a long hard and frustrating slog. But, I am hoping that it'll be worth it.
It does sound like you need another opinion though and from someone who knows about what you're going through.
Good luck and I hope you get some good advice.
If you want to chat about the actual process and physio, then do get in touch.
Naomi
x
16 Oct 2005 - Patellectomy
1st Dec 2005 - Full leg cast removed
4th Dec 2005 - Pulmonary Embolism
2nd Feb 2006 - ROM 55 degrees

Update Feb 2007!
All's doing very well - rom is nearly back to normal - still need to work on strength and stamina.