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Author Topic: My own personal Sophie's choice - what would you do?  (Read 2283 times)

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Offline wendy-o

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My own personal Sophie's choice - what would you do?
« on: March 28, 2011, 02:59:34 PM »
Well this is certainly the audience to query for this one.

After seeing several surgeons in the last 2 years who have basically kissed me off by saying “sucks to be you, come back in 20 years and I'll give you a total knee” I have met a surgeon who wants to try to “fix” my knee. He's offered me two procedures from which to choose.

First a little background – 52 year old woman. Was hit by a car when I was 16 (I was on a bike, she was in the car – it was never a fair fight). Throughout my life I'd had a total of 19 orthopedic operations. 13 on left knee, 2 on Right, 2 on Pelvis, 2 on Left Shoulder (the left side had all of the damage from the accident).

You name it, I've had it. TTT(s), Maquit, cart. removal, surface shaving and a patellectomy.  I let my surgeon in Boston when he recommended a knee fusion. Even through all this I was able to ski (although haven't skied for about 15 years now), played tennis (which stopped 4 years ago) and participated in triathlons (crawled across the finish line of a sprint last year – don't laugh, it counted). Oh and I have 6 children – something they told me I've never be able to do.

The patellectomy (a unique version of hell on earth) was in the late 1980's and I didn't have any surgery again on that knee until 2009 when I had the medial meniscus removed due to a tear. I wasn't too worried figured it was something a boy scout could do right?

Wrong.

Since then, I've been in constant (very high level of) pain and have little knee stability – this despite months and months (and months) of PT. I wore a metal brace for a year but didn't get much improvement from that. This past winter I've virtually been house bound and can only walk from cars to buildings. (live in North East, USA lots of snow and ice). Not the best when you have a slew of kids who want you to take them skiiing.

The two options:

Option 1. Partial knee replacement + tibial graft revision
Recovery time 4-6 months, limited ability, a one-way operation - can't be reversed. Starts the clock on a total knee and if it fails you immediately go to total knee. Did I mention limited ability?

Option 2. Autologous Chrondrocyte Implantation + Proximal Tibial Valgus Osteotomy + Tibial Graft revision + (maybe dependent on what they find) meniscal transplant
Recovery time up to 18 months, *supposedly* full ability afterward, all kinds of weird stuff like screws and plates in the leg, crutches for 3 months, in a CPM for 8 hours a day for 3 weeks. But no brace afterward and claims although I might not be able to play singles tennis on a hard court, I could certainly be able to play doubles, hike and basically be in far less pain than I currently am. Huge investment in time and lots and lots of pain. If it fails you go to the partial knee.

It comes down to do you have an operation that has a faster recovery time and less pain but that starts the clock ticking on a full knee replacement or have one that is basically a full joint reconstruction, a complete risk, so much pain that it should be outlawed, and which requires months of rehab BUT which if worked could get you actively back in life and doesn't start the total knee clock?

Don't know what I'll do yet but have figured out that a great way out of the US water-boarding/torture dilemma would be to do option number 2 on each inmate - they'd be talking in no time and their gaits would be improved.

I see nothing but win-win.

Not looking for anyone to make up my mind, that's for me to do but I am very interested in your educated opinions and comments.

Offline mountainknees

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Re: My own personal Sophie's choice - what would you do?
« Reply #1 on: March 28, 2011, 03:47:06 PM »
Wow, and I thought I was in bad shape.

I have had eleven surgeries on my right knee, and right now I am in between deciding if I will go for an elective amputation or a total revision, plus ligament allograft and over a year of rehab.  I have been wheelchair bouind for the last two years.  I do not want in any way for my opinion to cause you more problems.  First however I would see as many top University teaching doctors I could  I live near Washington D.C. and have gone to John Hopkins, Georgetown, George Washington Univ Hospital etc.  In your area you have some of the best teaching hospitals in the word so use them all to gather information.  I had my total knee replacement at age 56, very young for a total knee and after five additional surgeries I live homebound relying on morphine to get out of bed.  From where I sit and with my bias, I would do whatever i could to avoid a replacement.  You are correct, the clock starts as soon as they do a partial and you never know when it will fail and you MUST have a total,  I also looked into athrodesis where they use a nail to fuse the leg,  it is a procedure that leaves you with a stiff leg but greatly improves pain.  Before I would do any surgery at all however I would ask for a complete neurogolical work up.  I have learned that arter many surgeries on the same general vacinity you could develope neuropathic pain that has nothing to do with mechanical aspects of repair or replacement.  If there is nerve damage little can be done by surgery except make it worse, and you will need to start invasive pain management, nerve blocks, epidurals and even accupuncture.
If the doctors rule out nerve damage I think I would stay as far away as possible from a partial knee replacemenmt.  Originally the orthopedic community said that the knees would last 20 years or more.  Today however if you look in the medical journals, (not the pop medical web sites) you will see that more and more revisions are being done sooner than expected.  With an active life style the knees are just wearing out sooner than expected.  It is a shame that many orthopedic surgeons will not openly admit that.  Total knee replacements have become one of the most popular surgeries and Hospitals are holding free seminars at hotels with free food where their doctors push the benefits of total knee replacement.  This type of surgery has become a cash cow for many large hospitals. Once you have a replacement done, even partial you are in my opinion on a one way street.  I do know there are people who have had successful replacements and are happy, but more and more people are haveing early revisions, and some end up like me, with a decision if surgery number 12 is worth a chance and if having the old knee replaced will solve the problem  I am not in any way suggesting elective amputation for ANYONE, just that in my case where I feel that the revision and allograft scheduled for April 19 will not be helpful  In fact I am seeing my surgeon on March 30 and will have a lot of questions for him/her (there are two involved) before I make a 100% decision to do the revision.  Whatever you do I sincerely hope you take advantage of the vast medical resources in your area before you make a decision to go down a road there is no turning back from.  The best to you, Mountainknees

Offline wendy-o

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Re: My own personal Sophie's choice - what would you do?
« Reply #2 on: March 28, 2011, 04:20:18 PM »
I made a typo above, I did not "let' my surgeon do a fusion. I "LEFT" him when he suggested one.

It's funny that you say that about an amputation because I completely understand about asking  for an elective amputation. I made peace with that years ago and even started discussions with one surgeon about it recently. (He immediately stopped the conversation and said that he would not even consider it. For him he saw it as causing harm to good tissue).

As one who has lived most of her life with pain (at this point I can't remember not having knee pain). I can't even pretend to think I would know what it feels like to NOT have pain. Reduction of pain would be nice but mobility is what I'm after. 

They are going to try everything possible to save this leg. But at what cost?

Honestly I read articles of people with artificial legs who can run, jump, ski, and hike. I don't think I would be unhappy if I could do those things again. With less pain.

But for now, that option is not on the table and to go forward I'd have to choose one of the two procedures offered. I'm confident in the surgeon (he's mentioned regularly on this board) so I don't doubt the skill.

I guess I'm having a crisis of faith in myself. When I was younger I would have jumped at the more risky procedure but now I have to ask, is it really worth it to go through all that stuff once again?

Again, not asking for an answer just trying to sort this out. I'm supposed to get back to the Dr. with an answer by the end of this  week.

Thanks for your insight.

Offline mountainknees

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Re: My own personal Sophie's choice - what would you do?
« Reply #3 on: March 28, 2011, 08:26:08 PM »
I am quite sure you will make the right decision. You seem to fully understand your options and have a good relatioinship with your doctor.  It is interesting however to note how one of your doctors stopped abruptly any talk of amputation when you brought it up.  I could not understand this attitude to pain relief until I started to read Orthopedic Journals.  In academic medicine amputation after knee replatement or revision is considered FAILURE.  The journals even talk abouth athrodesis, which is known to relieve pain but at the expense of a stiff leg, as a "salvage procedure.  These doctors just do not know what it is to live with pain 24/7.  I have a draw full of unused Opera tickets.  Last September I purchased two tickets for two Metropolitan Opera Performances March 16 and 17.  I figured I would set a goal for working with my physical therapist of being able to get to Amtrak and take the train from Washington D.C. to New York.  I started a 3 times a week p/t regiment.  After a month the pain was so bad I would fall down and tears would run.  Then I tried using duck tape to hold an ice bag on my leg under my brace, no luck, then I tried a knee immoblizing brace, pain still off the chart, and all this time I had to use the wheelchair for daily in home chores the pain was so bad.  Well on March 12 I finally faxed the tickets back to the Met box office and told them I wanted to donate them to two Juilliard students.  I got a call saying they would do it.  The doctors have no idea what that kind of life it  is like to be in major pain day in and ouit/ 
This Sunday I have handicapped seating for an opera in Washington D.C.  This one I may be able to get to as it is only a 30 minute drive from my home, but I still could find the pain so overwhelming that I could not even get into the car to have my friend drive me as we planned.
It would be so much better to simply be done with this leg.  I do not know of any decent mechanic who would continue allowing a customer to pour money into a car that was too badly broken to fix, but the doc's keep on cutting.
When I see my doctor in two day's for my pre op. meeting I will make my final decision, but unless I get specific answers to specific questions I may just keep on pain management and get to Baltimore and see the one physician who does understand this kind of delima and has and would perform an elective amputation.
In your case I am sure things will work out.  I know just how hard it is to continue to believe one day you will wake up without pain, but it will happen for you. I seem sure of that in fact just as sure as I am in knowing that the only way I will allow to the revision and reconstruction is if I get real specific answers to very pointed questions.  Keep up a smile, it will get better.  Mountain knees

Offline smillie

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Re: My own personal Sophie's choice - what would you do?
« Reply #4 on: March 28, 2011, 09:31:33 PM »
That's a really interesting choice, Wendy. I have no idea what I would do. Options? What is that?  LOL

I guess I would start by trying to envision where I wanted to be three years from now, and take that into account based on the expected outcome of both procedures. Would I be satisfied with either? I would also look at the major events or goals for the upcoming 18 months and would a lengthy recovery seriously impact any of those, and would that be an acceptable consequence? And I know I would pray a lot asking for wisdom. It's a big decision! I wish you luck in whatever you decide. And I would love to know how you arrive at your decision. It's a really helpful exercise, I think, for those here who might be faced with big decisions in the future.

Thanks for sharing!
patella pain began early teens
'94 TTT/LR/VMO adv.
'94 MUA
'10 tried PT again
1/11 scope/hardware removal
4/11 (Finally!) dx medial instability due to LR
5/9/11 LPFL reconstruction scheduled

Offline mountainknees

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Re: My own personal Sophie's choice - what would you do?
« Reply #5 on: March 28, 2011, 09:44:01 PM »
Dear smillie,  Your response to Wendyo was great.  Not only did it help her, it also really helped me.  With all my questioning and searching I have not acrtually taken a personal inventory of where I want to be three years from now and also what I will lose from 18 months rehab.  I am sure that wendyo and many others who read your response will be glad you wrote it.  I know I am, thank you/mountainknees

Offline wendy-o

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Re: My own personal Sophie's choice - what would you do?
« Reply #6 on: March 28, 2011, 10:21:15 PM »
Well here's the thing.

I'm not afraid of an elective amputation. I've spent years and years of my life on trying to get this knee of mine to work. I've had some good times. Some really, really good times. I mean seriously how many people after 12 open knee operations (they were all done in the '80s when there was no arthroscopy) were still able to be active. For 7 years straight I went to a Nike tennis camp and played 3.5 tennis. I've run with my kids, I've biked, I've swum.

I have no regrets.

But I realize that things are breaking down now. Maybe it's age, maybe it's injury, maybe it's just time.

I don't see an amputation as a failure I see it as the next stage in my life (and I apologize to anyone who is offended by my opinions - I realize that this is a board about saving knees at all costs and I probably shouldn't even be posting this). And also in case you're wondering, I'm not in the least bit depressed. I have a job (full time writer/journalist - which I can do from a wheelchair if I had to), have the world's greatest kids and we have chickens in our backyard. Life is painful at times but it is good.

There are two reasons why I don't pursue an amputation more aggressively:

1. As you can imagine from all those open knee ops I have a ton of nerve damage. There is a real chance that an amputation would still leave me with that pain.

2. As the mom of 6 kids I want my kids to try risky things and to take chances. I'm not sure they are old enough to realize that an amputation would not be "giving up".

So I'll go for another surgery (still don't know which) and I endure all that I need to.

But when the day comes when they tell me it has to come off, not so sure that will be a bad day.

Offline wendy-o

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Re: My own personal Sophie's choice - what would you do?
« Reply #7 on: March 29, 2011, 02:43:09 AM »
Where do I see myself in 3 years? As good a question as any - I should probably do some thinking about that.

As for the what events will happen in 18 months that might be impacted? That's the tough one. I have one of my children graduating from High School (he has severe medical problems so this is a big deal) which of course means a party. We start with the Spring soccer season, a son will need to come home from college. I have a 3K walk to benefit a local soup kitchen, a sprint tri that I need to compete to prove to myself (and others) that I'm still alive. Summer brings swim team for the kids, fall- soccer, winter skiing, Kids need to have holidays and dogs need to be fed. I need to write.

To schedule any operation in a time period where it wouldn't interfere with activities in my life for an 18 month period would mean that I would have to have it scheduled for after I was dead.

There is no good time to schedule a surgery, you simply make the decision to have it and then fit your life around it.

 

Offline Nettan

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Re: My own personal Sophie's choice - what would you do?
« Reply #8 on: March 29, 2011, 01:01:33 PM »
An interesting question in this all is what does your family say ?
As a kneesufferer and in wheelchair due to RSD/CRPS(causing horrible pain) and accidental caused in care spinal damage I can say that my family has been some of mine decision makers during these years.
I have had surgery on my right knee(the one without RSD/CRPS), but family was involved in decision cause they were affected of this as much as I were.
Even though it's our bodies we can get a lot of support and ideas from our nearest.
Just a thought.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline wendy-o

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Re: My own personal Sophie's choice - what would you do?
« Reply #9 on: March 29, 2011, 01:10:45 PM »
Well I'm closer to a decision, thanks much in part to this discussion.

Smillie, you wanted me to put down some considerations for my thought process? They are as follows:

1.The kids come first.
2.One of my sons has a degenerative disease and at 18 he is already losing two of his joints to an aggressive form of arthritis. He is looking at several joint replacements in his future. As his mom, I have the unique opportunity of paving the way for him.
3.Work is not a concern, as long as I am conscious I can write. (It may not be award winning journalism but it will do for awhile)
4.Pain is not an issue. Not to be a martyr here but pain is just pain. Although prolonged pain makes me angry, pain in itself is nothing that I'm afraid of. Over the years I've been able to figure out how to “sink” into the pain as a way of management. Although I have absolutely nothing against pain management (I'm on a pain contract now) I don't take pain meds on a regular basis now. (it's been almost 2 months since I've taken anything other than a Motrin). I realize that surgery pain sucks. It really, really sucks. But surgery pain starts improving after a few days.
5.I would pretty much sell my soul to be able to play tennis again.
6.My 15 year old wants me to hike (at least part) of the Appalachian trail with him before he goes off to college in 2 years.
7.One of my sons is a nationally ranked gymnast. Chances are very high that at some point he will be dealing with orthopedic injuries – it's that mom leading the way thing again, you know don't give in but use what you have to move on.
8.Absolute worse case scenario in both options is total rejection and loss of leg (besides death of course but I'm not going to touch that one). I've already said that I'm okay with an amputation so basically there is nothing to fear.

Just as an aside, I recently wrote an article about a little girl (age 7) who had gotten a systemic toxic infection that resulted in a quadruple amputation. She is bright, optimistic, has a shining spirit, and you should see her get around. Totally changed me making me realize that much of the pain we impose upon ourselves is the result of how we perceive things.

I attend a meditation group on Wednesday nights. I'll see what comes up in meditation before I make my final decision.

And Mountainknees, thank you for your words of wisdom and your contribution to this discussion. It's helping.

Offline wendy-o

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Re: My own personal Sophie's choice - what would you do?
« Reply #10 on: March 29, 2011, 01:24:00 PM »
Nettan:

My family – my family is leaving the decision completely up to me. My younger kids don't have the life experience to know what to choose and my older (18, 19 year olds) realize from seeing me through the years that it's not something they could decide. My husband has told me which option he is leaning toward but that is the most he will say (he knows me too well).

As I mentioned earlier, although I was given a mangled body in life, I managed to spit out 6 of the best kids in the world. They know how to work together as a team and I have no doubt that they would all pitch in.

Interestingly I have posed this surgical choice question to 8 trusted friends. All 8 have chosen Option 2, the more invasive risky procedure.

It is interesting to note that not one of those people has any kind of knee pain, has never broken a bone and has never had any surgery. 

Do you see why I came here? :-)

Offline Nettan

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Re: My own personal Sophie's choice - what would you do?
« Reply #11 on: March 29, 2011, 02:54:29 PM »
As I mentioned I know this with pain, surgeries, years of rehab and also lots of the complications that I have endured the most weird ones that noone else get. You seem to be very stubborn, just like me.
If I would have to make your choice I would take the chance in surgery number 2, no doubt. But that is after reading what you have said.

I wish you all the best whatever you choose. The future lies ahead no matter !
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline mountainknees

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Re: My own personal Sophie's choice - what would you do?
« Reply #12 on: March 29, 2011, 03:38:21 PM »
Wendyo, I am glad that you are close to a decision.  I know from my situation that it can be harder to deal with a major life changing decision than even with pain.  I too am moving closer to a decision also. I met with my two daughters and son last night and we discussed the pros and cons of the risky no guarantee reconstruction va. amputation.  My youngest daughter who works in the medical filed and has done a lot of research for me came up with an idea that just might work.  She suggested after speaking with the surgeons tomorrow, if they are realistically optomistic I should go through with the surgery.  Even though there should be a 12 to 18 month rehab for me also, they fell that I should know in about three or four months if things are going to improve.  I agree with that.  Then if things go from bad to worse I do not have to wait a year for an amputation but schedule it right then and get on with my life, so either way I am looking at about no more than a 12 to 18 month recovery.  That might work.  I have read that in situations of chronic pain before revision the outcome of revision surgery is not very good, with that in mind after I speak with the surgeons tomorrow I think I will set some definate time line like three to five months, and if there is no improvement be done with the leg.  It seems like that way I will at least give these new and rather skilled surgeons a fair chance and when things become difficult learning to use an artificial leg as I am sure they will, at least I will know I have given salvage a fair shot.  I hope your decision is easy to make but you feel very strong and I too am sure it will work out for you.  Mountainknees

Offline wendy-o

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Re: My own personal Sophie's choice - what would you do?
« Reply #13 on: March 30, 2011, 02:37:29 AM »
Hey Mountainknees,

It sounds like you have a game plan. That's half the battle in anything.

One of the reasons I'll be making a decision by the end of the week, like you I've done my research, I've talked to a few people (interestingly a close friend of mine today just voted for Option #1 - the first to do so) and I've read the handouts. I'm not really known for dragging my feet on anything (except that is in real life where I subtly drag my left foot).

I know what I'm up against with both options. I just need to make a decision.

But once I make that decision, I won't be looking back. There is only forward from there. No regrets.

It is what it is.

I'm sure you'll keep us posted on your progress. 

Offline wendy-o

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Re: My own personal Sophie's choice - what would you do?
« Reply #14 on: April 04, 2011, 06:22:41 PM »
I chose option 2. 

Notified my surgeon's office this morning.

It's done.