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Author Topic: 8 Months Post Op Not Walking Hardware Issues?  (Read 3815 times)

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Offline Alyce

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8 Months Post Op Not Walking Hardware Issues?
« on: January 04, 2010, 01:12:14 AM »
Hi All,

If you go down a few threads you will get a complete history of the struggles of this last surgery.  I have come to the realization that I am WORSE now than before surgery.  I can walk with one crutch off and on for a few hours, with plenty of resting in between.  Then, I have level 6-7 pain, and it takes 72 hours to recover.

The fact that this was elective surgery, and I waltzed into Dr. T.'s office and said "please saw through my tibia and fibula, rotate it about 25 degrees and set it with a 7 inch plate and 8 screws."  "And while you're at it drill a hole in my paltella and tether in an attempt to reconstruct what the first butcher damaged."  That is a bitter pill to swallow.  I knew that there were risks.  I was getting worse and there is nothing to help a lesion the size of a quarter, so I took a chance.  It appears like it was a huge mistake.

I fear that I will never walk again.  My foot turns purple after standing for 2 minutes.  It is colder than the non-surgical leg.  My knee remains swollen despite Lidoderm patches and Kinesio taping.  I am on a small amount of neurontin, and that has side effects.

And the hardware... I live in Atlanta, so this was not a problem until it got cold maybe a month ago.  Overnight, I developed almost bone on bone pain like none other I had experienced.  It has remained, and gets worse when it rains.  How do others cope with this crippling pain?  I take a tiny amount of darvocet twice a day, and thank God I sleep 9 hours.  I don't want to increase pain meds, because I've just started to drive short distances, and would not drive with anything stronger.

I'm bitter.  This is not what I signed up for.  My life up to this point has not been a cake walk.  I hate to admit it, but I am envious of those who have bounced back and have less pain, and can function.  I even resent my husband, who has been an angel, because he has had two ACL surgeries, but is currently training for a marathon.

I am still using my bone stimulator, even though the bones eventually healed after 5 months.

I am absolutely at the end of my rope.  I still have faith in Dr. T., but feel as though there is nothing left for him to suggest.  I will not see another OS.  Dr. T.  is arguably the best lower limb alignment specialist on the planet.  There are no second opinions.  All I have left is time.

I tell myself every day that I will make it until the next day.  The only thing I know to do is to keep putting one crutch in front of the other.

You don't have to respond.  I don't feel any better having vented.  I just hate the world right now.  And if one more person tells me that "it could be worse," I will bi**ch slap them.  I lost a brother to ALS after an 11 year battle... so I know what "worse" looks like.  No reality check needed here, thank you very much.

Aree
Patella shaving & Lateral Release 6/2002
Reattachment of Lateral Retinaculum & Microfracture 6/2003.
Both procedures failed.  Reattachment was successful.
Lesion remains 15mm x 9mm x 6mm
Tibial rotational osteotomy May 2009
LPFL rebuild May 2009
Surgery for Baja Patella February 2010

Offline TwoBadKneesUSA

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Re: 8 Months Post Op Not Walking Hardware Issues?
« Reply #1 on: January 04, 2010, 05:07:57 PM »
Aree - I am sorry that you are in such pain.  I can't say I know what your surgery was like, but I do know that hardware can cause it's own issues.  Have you asked your OS about removing it?  My f-i-l had a plate from a broken leg that had to be removed because it was pinching a nerve.  I don't know if they can or cannot remove yours in the future.  I certainly hope things start improving for you.  Sometimes the whole knee thing just stinks.  It sounds to me like possibly a nerve issue?  What has Dr T said about the coolness and purple color?

Milly
'83 lt knee scope
'88 lt knee LR
'89 rt knee LR (6 mos. after left)
'05 rt knee scope (clean up)
7/5/07 - scope, LR left, right clean
3/19/08 - LR failed, Supartz failed
http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=47974.0
8/21/08 - new OS apt
8/5/09 - TTT, LR, PFJR sched.

Offline KW

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Re: 8 Months Post Op Not Walking Hardware Issues?
« Reply #2 on: January 04, 2010, 06:14:03 PM »
OK - Not going to tell you it could be worse...

I will tell you that I have been there.  I had a non-union after my 2nd Fulkerson in 2007.  We fought with that darn thing for almost 10 months (hardware changed - out - Bone Growth Stim) before it was deemed a total non-union requiring a Revision. Sucker healed fine the second time around - figures!  I was a complete Bit$$ the entire time.  I understand!  One day at a time is all you can do! 

The purple foot, changes in temp, and swelling may be related to your prolonged NWB status....But like Milly suggested it can also be a sign of a nerve issue.  I would suggest you either talk to Dr T or another Dr and have it looked at soon.  Some of the nerve issues need to be treated somewhat quickly.

Good luck...Remember one day is all you can do sometime!

Karen
Right Knee
2000 - 2002 - Scope,LR,TTT,Unscrewed
01-10-12 - PFJR

Left Knee
04/07 TTT/LR
08/07 Bone Grth Stim
10/07 Loose/Bent Screw
1/08 Unscrewed/MRI~NON-UNION
02/19/08 Lt  TTT Revision W/Graft
12/09/08 Scope
05/15/09 Scope
09/04/09 PFJR/Unscrewed

Offline Alyce

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Re: 8 Months Post Op Not Walking Hardware Issues?
« Reply #3 on: January 04, 2010, 09:28:00 PM »
Thanks Milly and Karen,

I appreciate your comments so much.  After I got in bed, I was sorry that I had written that negative post.  But people considering surgery need to know all aspects of recovery.

Milly, thanks for bringing up the nerve/RSD issue.  I saw my PT today, and she thought it was more because I hadn't walked for 8 months.  The times when I do walk without a crutch or both, my foot turns that pretty white immediately.  I have a high tolerance to pain, so I was surprised when the hardware reared its ugly head.  Glad I live in the South, although the high today is 30 degrees.

Karen, I don't know how you did it!  I think if my OS was closer it might be easier.  I have no one to talk to without feeling burdensome.  KG has brought me angels that get me through the worst times!  I am so grateful and hope to give back.

I am planning on talking to Dr. Teitge tomorrow to discuss an MRI that was done in November.  I plan to go see him in January.

It's taking 72 hours to recover.  Some say that I need to increase my pain meds to something stronger so that I can learn how to walk again.  I don't want to, and want to tough it out until spring.  Maybe I should reconsider.

Anyway, again I appreciate the time that you took to reach out and say "it will get better."

Warmly,
Aree
Patella shaving & Lateral Release 6/2002
Reattachment of Lateral Retinaculum & Microfracture 6/2003.
Both procedures failed.  Reattachment was successful.
Lesion remains 15mm x 9mm x 6mm
Tibial rotational osteotomy May 2009
LPFL rebuild May 2009
Surgery for Baja Patella February 2010

Offline TwoBadKneesUSA

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Re: 8 Months Post Op Not Walking Hardware Issues?
« Reply #4 on: January 05, 2010, 12:05:24 AM »
It does help to have someone who can understand.  Venting can help you feel better too, so don't feel too bad about the negative post.  Hopefully the color/temp changes are just from NWB for so long.  Sometimes you need to take care of the pain to get stronger.  I hate pain meds myself, but sometimes you need to take them to get stronger.  It is not always best to tough it out, it can prolong healing sometimes.  Just a thought.  I had that happen after a LR surgery and was a much longer time getting back to myself.  Good luck to you.

Milly
'83 lt knee scope
'88 lt knee LR
'89 rt knee LR (6 mos. after left)
'05 rt knee scope (clean up)
7/5/07 - scope, LR left, right clean
3/19/08 - LR failed, Supartz failed
http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=47974.0
8/21/08 - new OS apt
8/5/09 - TTT, LR, PFJR sched.

Offline vl7007

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Re: 8 Months Post Op Not Walking Hardware Issues?
« Reply #5 on: March 14, 2010, 01:59:41 AM »
hey alyce,

I'm kats mum. i am not saying things could be worse, because no one can say that.  i am extremely proud of you, you are trying so very hard to live and go forward.  for this you are to be commended. my daughter had bi-lateral derotational osteotomies done on both tibias and fibulias last september by another Mr. T. in australia.   i understand your need to vent and tell the world what you are feeling.  just remember there are people all around the world that wish you the best and pray for you.   ;)

Offline Alyce

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Re: 8 Months Post Op Not Walking Hardware Issues?
« Reply #6 on: March 14, 2010, 04:04:22 PM »
Hi Kat's Mum,

Thank you so much for your understanding words of comfort.  I had arthroscopic surgery 3 weeks ago in MI to clear out scar tissue.  Once he got in there, he found very little scar tissue.  He did find another lesion on the medial side.  It is not as large or as deep.

I am back to two crutches, and have not walked for 10 months.  I now have have swelling issues, which get in the way of PT.  My pain is worse.

I will have the hardware removed in November, but there is nothing else to do except stregthen the muscles.

I sincerely appreciate your thoughts and good wishes, and hope that your daughter is doing well.

Aree
Patella shaving & Lateral Release 6/2002
Reattachment of Lateral Retinaculum & Microfracture 6/2003.
Both procedures failed.  Reattachment was successful.
Lesion remains 15mm x 9mm x 6mm
Tibial rotational osteotomy May 2009
LPFL rebuild May 2009
Surgery for Baja Patella February 2010

Offline vl7007

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Re: 8 Months Post Op Not Walking Hardware Issues?
« Reply #7 on: March 28, 2010, 12:25:59 AM »
 :)hey alyce

i've come back to see how things are.  kat's derotations were initially done using external taylor spatial frames last september, where our Dr.T in Australia, spent the following week or so turning the bones a little each day, her knees were initially sitting at 90 degrees on the sides of her legs, he thought that he could correct them by just doing the tibias and fibulas.  then Dr.T took off the external frames when he was happy with the positioning of the ankles to the knees and put in pins and locking bolts. 

within 3 months you could see the left foot had changed position again and the knee had also moved another 40 degrees sideways  the bone hadn't had any regrowth and it had become to difficult for kat to walk again even with crutches.  so in feb, kat went back into surgery to realign the left leg.  it was during this surgery, Dr.T realised that despite correcting the legs they, both knees still turned in and that her femurs also needed to be derotated, (mind you we did tell him this prior to the original surgery, as did the head of orthopedics at the royal childrens hospital, and the gait lab ortho specialist, as well as various physiotherapists and an MRI. however he thought every one was wrong and that kat would only need the original surgery.)

now it has been 6 weeks post op for the left leg, her right leg is healing well now and it is early days for the left one.  but kat has started growing again, and her muscles are too tight in the hip and thigh area so she has great difficulty sitting, hydro helps with the scariollaic nerve pain and the muscle relaxing, but the groin pain becomes more apparent, that is due to the femurs sitting shallow and being pressured by the muscles to turn more as they are sooo tight.  massage doesn't help much and we have to be careful incase of blood blisters developing.  she can only sit for around 20 minutes in the wheelchair, and is trying to walk daily she can walk about 20 steps, but fatigues too quickly and her legs and hips give out. her knees are still sitting around 45  degrees to the side.  her left leg every now and again, the knee goes around to one side and her foot falls to the other.  unfortunately her ligaments are too floppy, and there isn't much more that can be done for this.  the result means that kat spend most of her time lying in bed, and does alot of her physio there.

we were told that she isn't a canidate for stem cell therapy, as she has problems with a connective tissue disorder and that donor ligaments still have big issues. synthetic ligaments are not advanced enough yet to be of major benefit, so we had to wait until technology catches up to kat's needs.  on the down side her bones twist with growing, so the doctors think we may have to wait until she stops growing before they do further surgery.  a year or two yet.

her pain regieme is quite different to yours, she is on 600mg of what you call neurontin, 60mg of oxycodone, 4000mg of paracetamol, plus 10mg of endone when needed upto 3 times a day. as her pain is still quite servere.  she has lost some sensations in her right leg and under the right foot, which she quite likes as that makes the right leg less painful. traveling in the car or moving alot makes her cry and the cramps and spasms that she gets daily are agony for her.  having said this she still does her physio as much as she can and she pushes herself to the limit, the physio is delighted with the progess but worried about doing too much as she can see improvement in leg strenght but then notices further rotation of the legs happening.

so where do we go to from here. Dr.T has requested another MRI  to check for AVN of the hips and femurs, other than that, there isn't much else that can be done, until kat stops growing. they reaffirmed that there was no gurrantee that the originally surgery would help her problem and that realistically it would only make her knees look like they were in a better position when sitting, as it is very different in people who are hyperflexible, especially as her ligaments continue to loosen that they are limited with what can be done.

but thats enough of our woes.  i would just like to have quality of life for kat, to be able to have her go out occassionally without cry from the pain of sitting. to be able to have kat return to college, she had to stop as she couldn't sit through a lesson any longer. but i know this is a long process and from reading other twisted stories, that it takes years to get closer to a normal (if there is one) existence

i am sorry for venting on your thread.  hoping every thing is good your way.


kats mum vicki.

Offline Alyce

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Re: 8 Months Post Op Not Walking Hardware Issues?
« Reply #8 on: March 28, 2010, 11:36:39 PM »
Dear Vicki,

Please do not apologize for venting anywhere in this forum.  Very few people understand, and to maintain sanity, we need others to know our story.

I am so sorry about Kat's complicated situation.  Dealing with growing bones adds another uncontrollable variable to the equation.  I hate that she is in so much pain, and that virtually any movement makes it worse.  It must be unbearable to watch your child suffer so much.  I know that you would trade places with her in a nanosecond, if you could.

I, too, wish that she could have a better quality of life.  It really sounds as though both of you make the best out of a horrible situation.  I'm glad that she has such a devoted, caring, loving mother.  Sometimes the best we can do is just take it minute by minute until things change.  Even then it is never easy.

My prayers and healing thoughts are with you both also.  Please keep me posted on how she is doing.  I will always be available to listen and offer encouragement.  It can be a very lonely path.

Hugs,
Aree
Patella shaving & Lateral Release 6/2002
Reattachment of Lateral Retinaculum & Microfracture 6/2003.
Both procedures failed.  Reattachment was successful.
Lesion remains 15mm x 9mm x 6mm
Tibial rotational osteotomy May 2009
LPFL rebuild May 2009
Surgery for Baja Patella February 2010

Offline vl7007

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Re: 8 Months Post Op Not Walking Hardware Issues?
« Reply #9 on: May 19, 2010, 05:12:44 AM »
hi Aree,

just a qucik check to see how you're doing, and bring you up to speed on kat.  Have things improved for you since we last text?  I hope so.  Kat is to undergo another op on her left leg as the tibia has moved again, in the next few weeks as soon as they can get enough space in theatre for her.  Finally the doc claims it will be the last time they attempt to resolve the issue as the surgery only seems to delay the problem, and even though they correct it, the bones keep moving.  so there isn't much more they can do.  They told us that med technology has not caught up to kats needs yet but maybe in another 10 years things might be different.  So they are going to remove the pin and locking bolts from her tibia, reposition the bone rebreak the fibula, try attaching a plate to the tibia for support, possibly combined with another intermedial pin, or try external fixing again using a taylor spatial frame, which they can leave on and continue to adjust post surgery.  They will decide when they operate which will be the best option for her.  As kat condition is a connective tissue disorder which is making her ligaments very loose as well as cause her bones to twist, this can only slow down the progression if she stays off her feet. Weightbearing add additional pressure on her joints and torsion of the bones, and the doc has decided that in this chace walking is a no go unitl they see if this helps.    In addition to this kat is still having trouble sitting and even laying down is painful at times for her.  but the doc checked her lastest MRI and decided that at this stage there is nothing surgically required, so even though she is in pain, there isn't much that they can do about it.  I guess the surgery is a good option although I had to be convinced that there would be any benefit from it, as I not certain it will work as the other operations haven't to date.  Any way I though i would attach a pic of kat and her siblings prior to her legs twisting taken around 18 months ago. Kat is the one in the middle.  Catch you later.  Vicki

Offline roze87

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Re: 8 Months Post Op Not Walking Hardware Issues?
« Reply #10 on: June 14, 2010, 02:17:31 PM »
hi I just want to tell you in some sort of sick way i actually felt better reading your thread so thank you! It is actually quite comforting to know that other people out there are as frustrated and exhausted andangry and bitter as i feel.  I hope you may feel better after reading mine. i have to say i am relating to your story alot. i feel very angry and bitter and i wish i had not chosen to take my os and pt advice i was better off before my 2nd operation let alone 4th. I have been accused of not doing my exercises by my physio. Which makes me want to give up. I am so sorry you have had such terrible time and i really hope that things get better for you.
06/04 Fell - Fractured tiibial plateau, femur, patella, torn acl
ORIF and bone graft of tibial plateau
09/08 failed acl recon due to wound infection
06/10 failed revision acl with pcl/lcl/plc damage
now facing multiligament surgery

Offline Alyce

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Re: 8 Months Post Op Not Walking Hardware Issues?
« Reply #11 on: June 17, 2010, 12:24:56 AM »
Hi Roze87,

I apologize for just now getting back to you.  We were at the beach, which is not exactly a vacation when you are on crutches.  It's so of like cross country skiing, and my hamstrings did fire, and get stronger.

Good for you for posting/venting.  Your post made ME feel better.  I still feel anger and resentment.  This is not what I signed up for.  I intend to post a new thread detailing the progress I've made and where I stand.  I will probably wait until I meet with a vascular surgeon next week.  All doctors seemed to be quite anxious and alarmed at my purple/black foot and leg.  It has improved some as my mobility has increased, but I think there might be an underlying issue. 

Hang in there, my friend.  All we can do is continue to put one crutch in front of the other.  I have made myself miserably depressed and beating myself up because I chose to have this surgery.  This was to be the last one.  Even when I get the hardware out in November (6 months late), I will still have pain.  There remains a large lesion the size of a quarter underneath my kneecap.  An arthroscopic surgery in February showed smaller lesions and a chip in the knee cap on the medial side.

Surgery is not the answer.  Many times there is not answer, and I have to learn to live with that.  Doctors can't fix everything.

I am just so sick of this whole thing, and resentful of the people who breeze through it.  I did all the right things.  I do PT every day, I eat right, am a little underweight, don't drink.  There is nothing more than I can do, except what I'm doing.  I need to just stop beating myself up, and get on with the limited life I have now.

Aree
Patella shaving & Lateral Release 6/2002
Reattachment of Lateral Retinaculum & Microfracture 6/2003.
Both procedures failed.  Reattachment was successful.
Lesion remains 15mm x 9mm x 6mm
Tibial rotational osteotomy May 2009
LPFL rebuild May 2009
Surgery for Baja Patella February 2010