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Author Topic: I've had it, not sure what to do..............................  (Read 3854 times)

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Offline eaglemom

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I think I might just need to complain to those who understand.  My saga is long and I won't go into total details - you'd all fall asleep!  I'm post surgery (18 months) for a huge ganglion cyst removal and both medial and lateral meniscus trim.  Rehab was slow but I heal very slowly.  However in May, when I started trying to resume a normal life I noticed leg issues that I'd not had.  A tight pull / tug with zingers occasionally.  Of course I was sent to a neurologist who tested me several ways and said I have a possible nerve pinched.  However he felt it might simply be in scar tissue, sent me back to os giving me a prescription for gabapentin.  The os said to take the medication and pretty much dismissed me.  After taking the medication and gaining 8 lbs and not having significant relief I see another os.  Of course more x-rays and mri's and he declares the knee is fine.  Its not the knee that's the issue its the lower leg.  He gives me a prescription for pain and said try pt and take medications nothing to help.  Of course very upset I try another os who said the knee is fine - you've got nerve issues nothing I can do. 

I suck up my pride and go back to a friend who is a great pt and ask for an opinion.  He evaluates me and thinks it is a pinched nerve. The exercises he has me doing on my legs have them staying stretched out which helps me feel better.  He is treating me with a machine for rd - the sts machine and I believe it is helping to desensitize the area / leg.  However I don't think there is an end in sight.  My massage lady thinks I need to relearn how to walk - great idea but been walking this way 51 yrs I don't think I can relearn. 

I really don't know what to do.  I declared to myself this week I've got to get a plan.  This leg has gotten far too much attention and money.  Their are so many of you who have much worse problems but none the less this is my issue and I just don't know what to do.  Os's dismiss me because I'm not a surgical knee - its the lateral tendons and nerves that are my issue.  I don't like the medication and weight gain, I'd just like to sit in a chair like a normal person with my legs down for more than 15 minutes.  I've not filled, nor will I any pain medication - I"m too bull headed for that.  I don't let the leg totally stop me from doing things, but its a constant source of issues with me. 

There you go my rant for the day.  Help me get a plan in place.  Pt 2x's weekly with no end in site is overwhelming me. eagle

Offline eaglemom

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Re: I've had it, not sure what to do..............................
« Reply #1 on: March 23, 2009, 09:44:39 PM »
Wow, I thought you guys would at least having something to say, point me in a direction or something.  Anyway, decided to slowly start taking myself off the medication and started today.  I was taking the nerve medication 4x's daily, going down to 3x's daily and we'll see.  Does it hurt, yes, more than "usual" yes.  Does that mean the medication is working or I'm having to nerve sensitive day?  Don't know.  Look forward to some idea's here.  eagle

Offline TwoBadKneesUSA

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Re: I've had it, not sure what to do..............................
« Reply #2 on: March 24, 2009, 01:29:39 AM »
Hi Eagle,

I did not get a change to post before.  Do you have stretches for the tendons?  Have you thought of going to a second neuroligist?  I know it may not be what you want to do, but have you though about a pain clinic?  Just some ideas.  It is so frusterating to get bounced around like that.  The nerve medicine is causing weight gain?  Have you asked about a different one?  I can certainly understand how you are frusterated and angry.  As for learning to walk again, your PT may be able to help with some gait training.  I can appreciate the walking a certain way for a long time.  I will sometimes even limp when the knee is not really hurting because that's how I'm used to walking.  You may have a lag of one leg or something which is making things more painful.

Hope this gives you some ideas.  We do understand how maddening it can all be. 

Good luck and post anytime you need to vent.

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.

gigi67

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Re: I've had it, not sure what to do..............................
« Reply #3 on: March 24, 2009, 02:47:22 AM »
hey eagle... i am just baffled by your extended problem..I hate that for you!!! I know rsd may not be the same thing and weve talked about that before but  can you try some " desensitizing" methods::

take several types of material ranging from soft things to scratchy like sand paper, and stroke the area that hurts like 3 or four times in  different directions, and repeat do that once or  twice a day...include various materials rough, smooth, rubbery, brillo, sand paper, feathers, whatever you can get together...its a type of treatment often used for nerve pain disorders...I had to do it when my RSD was in full burn and at the time I couldnt stand for the wind to blow on my skin it was so sensitive....its worth a  try ...give it a go why dont ya c if it helps in a few weeks...I know that seems like a long time to wait but if its gonna hurt anyway why not?

Im surprise no one has mentioned injections...like pain blocker injections or something...

maybe try the following that really helped me walk again::

stand on one leg at a time.

walk like on a tight rope one foot in front of the other

criss cross foot walking..

walk on your heels only

I had been through two rounds of therapy and like 20 + visits and still wasnt walking..but after doing these very " seemingly basic" things...I put down my crutches AND cane!...in just 7 visits to rehab...I did practice everyday  at home iin between visits several times per day...maybe that will help...maybe those nerves just need a little shaking up by doing completely different things.???

again I am sorry for your frustrating experience.

sincerely,
Gi



Offline SuzanneT

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Re: I've had it, not sure what to do..............................
« Reply #4 on: March 24, 2009, 04:01:55 AM »
Hey there, My situation is definitely different than yours, but, yes, it is possible to learn to walk differently.  I had to actually learn to walk again after 8 months of being NWB.  I had other injuries as well.  I am now trying to walk better, because I have been putting weight on the outside of my foot instead of following through with the natural gait.  It may take time & practice.  Best of luck, Suzanne
12/31/06 tibial plateau fracture (medial)
              fibula fracture
              patella fracture
              (no surgery, long, slow recovery)
   8/1/07  7 months, beginning FWB
   8/1/08  more physical therapy to develop
               calf & quads
   8/21/08 climbing stairs

Offline eaglemom

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Re: I've had it, not sure what to do..............................
« Reply #5 on: March 28, 2009, 04:11:40 AM »
Thanks all for the encouragement.  I've cut back on my pain medication- and yes I can definitely tell it.  I'm going to hang tough another week and see if the pain doesn't level off - if not I'll simply go back to the prescribed dosage.  I have been doing desentizing on my outer knee area, and I do believe it has helped.  I do my exercises and pt has started hip exercises to strengthen all areas.  I do all of it but I still can't sit on the sofa with my legs down for very long.  The exercise that really hurts the most of all is the "figure fours" as they call them.  When the surgery leg is crossed  that pinched nerve is screaming - pretty much takes my breath away.  Trying to have a better attitude - but I truely don't think any one thing will help and there in is my frustration.  eagle

Offline luckygrandma6

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Re: I've had it, not sure what to do..............................
« Reply #6 on: March 28, 2009, 10:44:18 PM »
Have you had your back checked out by a Neurosurgeon. That is different then a Neurologist. I had a pinched nerve down the back of my leg. I kept trying to tell my OS this and finally went to another OS with no better luck. I had three surgeries performed on my knee before they figured it out. Then a year after a TKR had two major back surgeries as the back doctor screwed up on the first operation. Don't go to an Orthooedic back doctor, go to a Neurosurgeon. That was the biggest mistake I made. I had five surgeries on one knee when I don't think I needed any of them, I believe it was my back all the time. Don't let them perform another operation on you if it sounds like they are guessing. I wish I could turn the clock back three years and things would have turned out differently. It's true an OS only knows what they know, they know nothing about nerve problems.
« Last Edit: March 28, 2009, 10:46:43 PM by luckygrandma6 »
Right knee (arthroscopy) 2004
Right knee (PKR)) April 5, 2005
Right elbow (Bursectomy)1998
TRKR 2006 Failed)
Left knee (arthroscopy)
Left knee (arthroscopy)
THR 1992
2 back surgeries (Feb 2007 & March 2007
Right knee spacer exchange (Failed) 2008
TRK (Hinged Prosthesis) Jan 2009

Offline eaglemom

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Re: I've had it, not sure what to do..............................
« Reply #7 on: March 29, 2009, 04:40:56 AM »
No I have not.  The neurologist said neurosurgeons only work on back / neck / spine so I didn't need to see one.  So I haven't.  It doesn't make total sense to me because I do have a pinched nerve in the outer leg from a surgery to remove a huge ganglion cyst.  I've tossed my hands up and thats just stupid because I'm the one suffering.  I am so sorry to hear of all your surgeries and problems.  I hope your recovering and pain free - as are all of us on this board.  Some of us have been around here far too long!  eagle

Offline eaglemom

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Re: I've had it, not sure what to do..............................
« Reply #8 on: April 02, 2009, 11:20:36 PM »
So this is different.  Went to pt today and they have tried taping my ankle.  The thought is to draw support from the bottom of my leg (ankle) to make the knee stay in place.  It feels odd, that is for sure - but it definitely has the pinched nerve screaming.  The pt has said all along its an issue with the fibular head - probably multiple hairline fractures causing more issues then swelling and the pinched nerve screams.  Now if I could only find a doc to look at this. 

As an aside - the ortho that did the surgery is on the cover of a leading magazine being "the best in the business."  I have no doubt he is - but his ego is huge!!  He has "fixed" my knee therefore it is fixed.  At least in his opinion.  I just find the timing interesting.  eagle

Offline TwoBadKneesUSA

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Re: I've had it, not sure what to do..............................
« Reply #9 on: April 03, 2009, 01:27:18 PM »
Hi Eagle,

It is very interesting about the timing of the article.  Does your OS read the reports from the PT?  Could your PT call the OS and explain what he suspects?  Just a couple of thoughts.  I hope you can get this figured out soon.

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 eaglemom

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Re: I've had it, not sure what to do..............................
« Reply #10 on: April 03, 2009, 02:03:37 PM »
No that os doesn't receive notes from pt - because its not a knee replacement issues he "doesn't need to see me."  The other os was pretty much the same - come back when we can work on the knee and we'll chat.  The pt notes go to my regular gp, of all things.  I'm going to see if I can't see him (gp) and chat about a direction.  The massage therapist wants me to see a different chiropractor - an alternative, who works on special cases.  Frankly that scares the hell out of me.

From the taping yesterday my knee was hurting and the pinched nerve screaming. So I'm not sure that is the correct direction either.  I realize it will hurt but this was screaming "stop it" as opposed to "I'd rather not be pushed in this direction", if you know what I mean.    I guess I cna't understand why no one is willing to listen to me, take the mri of the lower leg and prove me wrong.  Of course I'm not doc hopping either - guess that's my next step.  eagle

Offline dm

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Re: I've had it, not sure what to do..............................
« Reply #11 on: April 05, 2009, 10:44:22 PM »
It does sound like the taping was the wrong way to go. I would think that with having a ganglion cyst removed, and the level of pain you're having, that scar tissue may be an issue to be looked at, as would RSD. Has anyone evaluated you for these issues? It also seems to me that no one person is looking at the whole of your care, the surgery outcome combined with the results of your therapy, etc.

I would sit down with your gp and go over what is going on, your care is fragmented - your os only cares about your knee if it's surgical, not whether it functions without pain - which it doesn't because of the tendon issues. The neurologist isn't dealing with the ganglion cyst beyon that it has been removed yet no one seems to be following up on your neuro issues beyond the pills - the potential for scar tissue or RSD issues have yet to be addressed given your problems that still exist.

My suggestion is to get an independent evaluation of how things stand at this point, and some suggestion of how to proceed to get you functional again.
multiple arthroscopies 2/00,3/01,6/01,1/03, 12/07,10/10. chondromalacia, severe medial joint space narrowing following 3 partial menisectomies, chronic pain problems, kneecap problems, OCD lesion, failed mfx.

Offline TwoBadKneesUSA

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Re: I've had it, not sure what to do..............................
« Reply #12 on: April 07, 2009, 12:43:40 AM »
Eagle,

I think the previous post is correct.  Everyone just wants to take care of their "piece" of the problem and are not looking at the whole picture.  Have you been in touch with your GP with any of this?  Just wondering.  Sometimes they don't look at the problem once it has gone to the specialists either.  How are you getting along these days?

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 eaglemom

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Re: I've had it, not sure what to do..............................
« Reply #13 on: April 07, 2009, 02:28:00 PM »
Thanks guys - been feeling very frustrated here lately about this. DM I love that you called my care fragmented - that is exactly what it has been in the past.   I have an appointment with my gp on Thurs and we will go over everything.  I do trust him and he's been our gp several years but is young enough to "think outside the box" so to speak.  He always feels if something isn't working then change it, so we'll see.  Strength wise the leg feels good - hips are sore but that's from new exercises and not an issue.  I will say the quad seems stiff but maybe that's how its to feel and I've not had quad muscles for so long I just don't know.

RSD who knows - at pt they do put me on an rsd machine for 20 minutes and frankly its the most relaxing thing ever.  The pt people are equally frustrated but trying different things.  One thing for sure we won't be taping the ankle like last time, that's for sure.! 

Sorry I keep complaining but in my heart of hearts I know there is an issue here but no one wants to deal with it.  That just upsets me.  Thanks for you inputs.  eagle

Offline eaglemom

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Re: I've had it, not sure what to do..............................
« Reply #14 on: April 11, 2009, 05:38:56 AM »
Here is what I found out / didn't find out.  My gp was great was in the room with me over 45 minutes - listening and asking questions.  He thinks no one wants the case because its not "typical."  Not an easy fix, as it were.  Anyway since the gabapentin has caused a 12 lb weight gain since Nov. (and I admit I've not eaten perfectly but not this much) he thinks I need off of it - which I agree.  I'd already started that anyway - I'm now to two pills daily - its not pretty here, but I'm hanging tough.  He thinks pain patches won't work but is very curious if I have any relief with them.  He's wondering if I have both topical and deep nerve issues - off the medication and on a patch will at least answer that question.  We'll see.  He feels I've leveled off with pt - see if I can't do it at home.  That also takes me off the sts machine which will see how much that helps.  Lots changing here.  One thing he is thinking is patella fractures and that movement into scar tissue causes the nerve issues.  Who knows.  I do know I feel tighter - for whatever reason.  Also having lots of calf / hamstring pain and electrical jolts - I'm going to hang tight and see.  Unfortunately he feels this can take years - and then its never gone.  We both agree this leg has moe than just one issue - which is why no one has been able to diagnosis it.  I will try this and see.