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Author Topic: Should I get another opinion? (REALLY long, so sorry!)  (Read 1011 times)

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Offline Jill2005

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Should I get another opinion? (REALLY long, so sorry!)
« on: February 20, 2005, 04:44:00 AM »
Hi everyone.  I am so happy to have happened upon this site a month or so ago.  I have only posted a couple of questions and have appreciated the replies that I have received.  It's wonderful to have a place to come to with questions, where the people answering have usually gone through something similar.   

I'm a 39 y/o female with a history for as long as I can remember of knee problems.  I had my first surgery on each knee in 1979 when I was 13.  The RK in March, the LK in July - both for recurrent dislocation of the patellas for which I had Roux-Goldthwait procedures performed with 7-8" incisions.  Continuing knee issues held me out of phys ed in middle and high schools.  I was allowed to swim, both recreational and competitive - and I snuck a diving "career" in their as well.  I truly do not remember ever having been without some sort of knee pain/discomfort on and off, but have learned that it was part of my life, and I limited what I had to, when I had to.  In May 1984, my LK gave out while going down stairs and I fell.  My knee completely locked.  I spent five days in the hospital in traction, cortisone injections, etc. but nothing work.  I went to the OR for arthroscopy and arthrotomy.  He found a large tear and flap tear in the lateral meniscus which he couldn't repair through the scope, and he made about a 4-5" incision to repair this. 

Lift went on.  Marriage, babies... good days, bad days.  Like I said, you just learn to deal.  I'd have periods of months where my LK was incredibly painful, followed by months of it being completely bearable.  Visits here and there to MD's mentioning the pain, a prescription for pain, and the mention of most definitely having to have a TKR at some point in the future, but them wanting to hold off for several more years.  Then about 18 months ago, all hell broke loose and it started becoming horribly painful.  I saw my GP in March of 2004 when I could do nothing more than the minimal amount of walking I needed to just get by.  I was plagued with continual incredibly sharp pain.  My original OS retired several years back, and I was at the mercy of my GP to refer me to someone who he trusted.  Off I went for an "emergency appointment" in 3-1/2 weeks.  How I made it through, is still beyond me.  One set of x-rays revealed medial patellofemoral osteoarthritis with tilt (my kneecap was wickedly off where it should have been). 

Surgery was scheduled for 5/04 where he knew he would be performing an arthroscopy, but also would be making a vertical incision over the patella.  Now this is where I get confused by the terminology.  My operative report says ... a large tear of the posterior aspect of the medial meniscus with an unstable flap that could be displaced into the joint.  Examination of the patellofemoral compartment showed a complete cartilaginous loss of the anterior aspect of the medial femoral condyle and the medial patellar facet.  There was significant mobility of the patella in the medial and lateral directions approx. +2 glide.  The primary contact of the patellofemoral articulation was along the worn area of the medial facet.   Open reefing of the lateral retinaculum was performed.  It then goes on to explain the procedure, incision etc.  Then it says there was concern about performing a large medial release and not wanting to create further instability, so a pie crust method was used to try to relax the medial retinacular structures in hopes that that would unload further some of the medial patellar facet contact forces.  Okay, I wake up... and pain.  But I can deal with pain.  Long rehab.  I spent about two months on crutches, and 3 months in PT. 

After 3 or 4 post op visits, I have incredible ROM in my knee and can flex it farther than I remember in years.  But there is still significant "different" pain.  My OS discharges me telling me that the surgery he performed corrected what it should have and I can now bend my knee.  He told me before the surgery that I would never be "running marathons" and what exactly did I want from the surgery?  I told him relief of the sharp pain.  I would have offered him one of my GOOD limb at that point, if it meant he would get rid of the horrific pain.  Before he tells me I no longer need any further follow-up, he says the pain I have is all soft tissue and there is truly nothing that can be done about that.  I then begin having sharp twinges of take-your-breath-away, stop you dead in your tracks pain on and off several times a day.  Quick sharp pains, that last only a brief second. 

Okay.  I see a rheumatologist.  He tells me there is significant soft tissue injury/damage everywhere in my knee, and he honestly cannot find one area that does not produre a significant amount of pain.  I have a series of painful Prolotherapy injections (11 shots at one visit) and did not see significant improvement, so I go back two months later and he injects about 9 even more painful needles of Cortisone into the damaged soft tissue.  After two nights of being back on strong pain meds, and a couple of weeks of increased pain... I had two weeks of absolute PURE BLISS, right at Christmas time.  I even called the office and told his wife that in my eyes her husband is a God, and I was so happy.  Then I slipped on the ice.  Then my husband stepped on my slipper as I was walking and I kept moving.  I know that is when my meniscus tore again.  My limp becomes even more prominent once again. 

Back to the OS, who is "surprised" to see me.  I tell him of my pain, my slip on the ice, the slipper incident.  No x-rays, no MRI, but back to the OR.  He told me to keep my fingers crossed that he found some scar tissue, and was hoping to find something catching on it which would be the cause of the sharp pains.  Tells me that if he doesn’t find anything, that again there is nothing he can do and that I will basically have to "suck it up and deal."  Yeah, okay. 

2/05 I undergo arthroscopy, knowing beforehand that the recovery and rehab will be much easier than the reconstruction in May.  He visits me before the surgery and I once again tell him of the pain on the inside of my knee.  He tells me the scope won't see that  and that that is all soft tissue injury there anyway.  After surgery he tells my husband that he was surprised to find "several things" while in there, a meniscus tear, foreign bodies, plica.  The OR notes for this surgery state a significant tear of the posterior horn of the medial meniscus and two areas of synovium.  There was some scar tissue near the area of the medial gutter and more proximally at the inferior medial aspect of the patellofemoral articulation there was a large synovial plica.  All of these areas were debrided.  He then performed a partial medial meniscectomy and removed loose debris found in that area as well. 

My two week post op visit – the first time that I would be seeing the doctor since my surgery – turned out to be a visit with the PA, who, when I asked what the medial gutter was, had no clue whatsoever.  She also could not give me the details of what all the above meant.  I asked her for copies of my OR reports “for my rheumatologists” records.  Upon reading my notes, I truly have no clue what all the medical jargon means.  It is all so incredibly confusing.  I go back to the OS to see whoever in two weeks for another follow-up, and then off for more PT. 

I like this OS, but I get the feeling that he doesn’t really know what’s going on with me, or worse yet… doesn’t have any long-term ideas other than doing “clean ups” every year or so, fixing things as needed, until I can have an eventual knee replacement in my late 40’s.  After reading on this site about all the more updated and new techniques, I’m wondering if I should get another opinion.  If a new OS were to say, “yes, we could do such-n-such a procedure, but you will be pretty much laid up for several months, but then you should be in much better condition for the next several years” I would say sign me up tomorrow.  It has been well over a year since I have been able to go outside for a walk, have done more that basic necessary walking around a mall to only get what I need.  I’m tired of sleeping on the couch because that seems to be the only way I can get a decent night’s sleep, tired of walking up stairs one at a time.  I know the reasoning behind not doing a TKR this early in a person’s life… but truly if the trade off is living with this quality of life… I’m not sure it is worth waiting for. 

Phew.  If even one person has made it through my mini-novel here, thank you, thank you!!  For some reason, just pounding out the words on a keyboard, has felt like good therapy.  I guess I just needed to vent, and wondered if you too thought it was time for me to get another opinion, or maybe I’m just hoping for too much.  Who know?!?  Thanks again everyone.  I am truly enjoying and learning so much from this site!!
3/79 R patellar tendon transfer (Roux-Goldthwait)
7/79 LK (same as above)
5/84 LK arthroscopy/arthrotomy torn lateral meniscus
5/04 LK arthro; partial medial meniscectomy; open lateral retinacular recon w medial retinacular release
2/05 LK arthro w partial synovectomy; partial medial meniscectomy

Offline stgiles16

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Re: Should I get another opinion? (REALLY long, so sorry!)
« Reply #1 on: February 20, 2005, 02:51:05 PM »
WEll, I made it thru your whole mini novel LOL. I think it would be good to get a second opinion. If my OS told me to suck it up and deal with it (which my first one did ), I would find a new one (which I did LOL). It wont hurt anything to have another opinion. Your OS does not seem to listen to you. That is not a good thing. If you already have a copy of your records, make an appt with a new OS and take your records with you.
good luck

missy
2 ligament recons right ankle
2 arthroscopic,
5 open knee procedures
2 Plica removals
bone spur removal
2 microfractures
4 debridements
2 open LOAs all on left knee
Arthritis,both knees, ankles, shoulders, elbows, hands,spine
Fibromyalgia
Arthrofibrosis
LOA & PKR 2/15/06
RA
in pain mgmt
TKR JAN 2012

shadehawk

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Re: Should I get another opinion? (REALLY long, so sorry!)
« Reply #2 on: February 20, 2005, 03:22:47 PM »
Jill,

I would keep my next OS appointment and ask him some questions.  If you are not getting any answers, then check out another OS.

PT is also a big part of the healing process - is your PT giving you ultrasound and laser treatments for the pain?  This can really help you a lot with the soft tissue problems.  It is real important to get the pain under control first - I do not remember you mentioning anything about medications or PT sessions - if you are not going to PT you should ask your GP for a referral.

Good luck,  ;)

Shade


Offline PattiAnn237

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Re: Should I get another opinion? (REALLY long, so sorry!)
« Reply #3 on: February 20, 2005, 04:36:11 PM »
Hi Jill,

You really have been through a lot with your knee, and you have to be commended for not just giving up.  In my honest opinion I think you need to research and see if you can find a really good knee doc.  I don't know where you are, so that may mean traveling far distances, but i think for you it would be worth it.  Find someone who understands your long term goals, and had a good plan of action.  Good knee docs are hard to find, but Im sure there are people on this site who can help!

Take care and good luck!
~Patti
25 y/o
Left knee- lateral tilt, lateral tracking, arthritis
LR 8/5/04 (failed)
Diagnostic Scope- 5/2/05 (scar tissue removed)
Holding off on TTT till I can get through school!