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View Full Version : Knee jt replacement before spinal fusion? Help! (Against MD "compartmentalization")



Back-out
05-10-2010, 02:45 PM
Please help me decide whether I should have my right knee joint replaced before spinal surgery. Forgive this extraordinary length, but I don’t know how to present the pros and cons, without including my main considerations. Like the spinal surgery itself (and when to have it) this is a very complex cost:benefit issue. It’s so hard to think it through alone and time is short.

IN FAVOR OF KNEE SURGERY BEFORE SPINAL: Finances and Health (Physical and Mental)

1) FINANCES:

a) My relatively good insurance expires in Feb. when I turn 65 (though I’ll have to buy Medicare coverage for about six years for legal reasons :mad:)
b) A secondary (indemnity) plan through AARP expires then too . That pays out (legitimately!) large sums for surgical procedures, hospital time and helps greatly with rehab. at home and in a facility. It would help significantly with the knee surgery.

2) RECOVERY CARE:

Hopefully, one son could help me if I have Knee Joint replacement over the summer. If not, a rehab facility could care for me during the worst of it, followed by at home help for a few weeks after that - paid for by the AARP plan. Neither option would exist after this year.

3) HEALTH:

a) I’m concerned about how I’ll get through recovery from the long fusion (T4-pelvis, proposed by two of three surgeons consulted so far). Much has to do with functioning, as well as morale.

I’m not used to being dependent, nor can I just “let other people do for me, this once” as there really aren’ t others to tap. My S.I.L. has kindly offered to help with recovery from the spinal surgery if I can schedule it when she’s able to take time off work (seasonal in Florida)

b) As important as immediate help with recovery, long term self-care and functioning are too. I feel I’ll be significantly hampered practically and emotionally if both “top and bottom” are out of commission, long term. Reachers or not, I gather squatting is crucial to coping after a long fusion. But how can I squat if my right knee is almost bone on bone?

c) I know I’ll be demoralized by feeling physically limited after the long fusion. True, I can’t walk or stand without support now, but that’s because of pain from compression on my lumbar vertebrae. I’m still fairly fit from calesthenics and soon hope to resume aerobic work on my treadmill - walking now rather than running.

I’m so flexible, I’m hyper-flexible. This is a medical problem in the long run (Ehler-Danlos, a genetic condition, appears to be behind it. It caused my scoliosis and contributed to other joint problems, including my knees)

But I’m used to it, and depend on it in many ways. It will be extra challenging for me (with my former hyper-mobility ) to become suddenly and permanently stiff. I think if my knees can’t help compensate, I’ll be much more demoralized. Specifying “Me” - I realize everyone would l handle this change differently.


AGAINST HAVING KNEE SURGERY BEFORE (Health? Ability to Squat? Going against advice)


1)FUNCTION? This one is in both columns, I know. I'm not sure how well I WILL be able to squat after joint replacement. I’m trying now to get feedback from women in my demographic A local PT head, has had some lovely, helpful patients call me to share their experiences with knee joint replacement. More to come. So far , I’ve learned that there is variability and (the obvious) that knee joint surgery itself is no slam dunk! I’ve been told to expect to be out of commission from pain meds and rehab for a good month after knee surgery, when and if I have it. Squatting ability takes a while to regain, and flexion is incomplete. Less than I have now - but without joint pain. Anyone with personal knowledge of knee-joint replacement, please give feedback!


2) MEDICAL ADVICE My (excellent) local knee specialist doesn’t want to do joint replacement yet . He says, my knee would be less flexible than now (well, yeah! I have Ehlers Danlos!), and that all other things being equal. I should rely on pain control for a few more years. That means I’d have to go out of town for surgery. That would be less convenient and furthermore, I am left doubting myself. Should I ? (Even doubting my doubt! :rolleyes:)

***************************************

I respect his medical opinion but all things are NOT equal. Considering the total person, ME – my spine, my finances (I’m very low on funds), and my morale (I tend towards depression) - I think my ability to manage the major life challenge of this spinal surgery, would be significantly undermined by leaving knee joint replacement for later.

I’m not even sure when I’d be well enough to undertake it after the spinal surgery, since I may take extra long to heal . Bone fusing may be slow or worse in my spine because of my age and because (just learned) I have spinal osteopenia.

I’m afraid that the knee surgery (coming second) could even raise the risk of infection in the spinal hardware, and that the rehab and knee operation itself would be harder if I were already fused.

Waiting for the knee surgery, might put me into a territory where I would be indefinitely unable to have it because of greatly increased costs and other coping difficulties. Ones that wouldn’t exist now . I can even see an argument for having both knees done simultaneously (now) . That, I won’t pursue, though maybe I should. The right knee is considerably worse because of injury. Hope this is a good call on my part. (I know if I had both done at once, it would be very painful and rehab would be much harder. However, I’ve heard of many others who do them together for similar practical reasons). Medically, it’s much more stressful, of course.


NOTE FROM MY MEDICAL HISTORY - AGAINST THE COMPARTMENTALIZATION OF MEDICAL TREATMENTS!

Rejecting medical opinion five years ago about surgery on my cervical stenosis, made an enormous difference in my options now. If I’d had my neck fused from C3-C6 (standard – but not only - protocol), what spinal surgeon now would have considered beginning the scoliosis fusion at T4, thus leaving a long mobile segment between neck and spine?

When seeing neurosurgeons about the stenosis, I begged them to examine and consider my total spine in their recommendations for my neck (When scheduling the appointment, I specified this request and was told they would). Once I got there, however, it was all “neck neck neck” since that was the presenting problem and their time was limited. They were so focused on my neck, I’m not even sure it registered with them that I had severe scoliosis (and other spinal problems).

But the rest of my spine, while not dangerous like the cervical stenosis, was far more of a functional problem and was already disabling me. It was clearly a strong possibility that it would require surgical attention in the future (NOW! :rolleyes:) – and needed to be considered in my treatment plan.

On my own, I researched an endoscopic approach (then much less frequently done for my problem), and found a world famous minimally invasive neurosurgeon - luckily , nearby. He did an endoscopic decompression instead of the standard fusion (as with scoliosis surgery, it would have required not just fusion, but also titanium hardware and bone transplant Most use cadaver bone). I did considerable research - including getting other opinions - to vet my surgeon before proceeding.

Back then, I preferred a less traumatic approach for other reasons, realizing I could always have the fusion later if it proved necessary. A total reconstruction wasn’t yet on my radar. I knew my total spine was a problem, though, and I wanted to arrive at a comprehensive spinal treatment plan, including major “what-ifs”.

And look what a difference it makes now!

I’m afraid that once more, physicians are insisting on standard recommendations in treating their area of expertise, but that the standard approach is contrary to my overall needs. My primary goal is to survive – long-term – for which I know everything must be considered in decision making: body, mind, care resources, bank account.

OTOH that puts me in the position of figuring everything out on my own and second-guessing experts. That makes me very uncomfortable. I recognize their expertise, but at the same time, I hate and distrust this age of specialization. I know it can lead to surgery and other treatments, which are not in the patients’ global best interests, considering all their major needs - over time. Finances oughtn’t to be ignored either!

Please help me make a decision. I'm so stressed, I know I may be missing important connections or facts. The time constraint doesn't help. Spinal surgery alone is hard enough to decide about - but should ANYTHING really be considered as a single issue? :confused:

Many thanks for any contributions!

loves to skate
05-10-2010, 09:00 PM
Wow Back-out,
After reading your post, it bears out my theory of getting the back taken care of sooner rather than later because of all the other things that can happen in your life to complicate things. One issue you should take out of the equation in trying to determine what to do first and that is squatting. My surgeon told me that it is never good to squat because it is so hard on the knees, (just ask someone who has been a baseball or softball catcher). Rather than squatting, he told me to go down on one knee. That way, it is much easier on the knees and your knees only have to bend at a 90 degree angle. It is also much easier to get up from that position than from a squat.

I'm not sure how your finances would tell you it is better to get the knee operated on first. Spine surgery is way more expensive than knee replacement surgery. Are you seeing an SRS spine surgeon for your back? I would ask him what he thinks you should do first. What hurts you the most? You do need to be able to walk after spine surgery, but being on pain medicine for the back, maybe you wouldn't feel the pain in your knee.

Sorry I can't be of more help. My knees have bothered me for years, but by building up the quadriceps, I have been able to keep the pain in my knees at bay. My back pain totally disabled my. Good luck in your decision.

Sally

CHRIS WBS
05-11-2010, 11:52 AM
I agree with Sally. If I were in your shoes, I would make scoliosis surgery your number one priority and other orthopedic issues secondary. You are already in your 60s. Speaking from experience, having a fusion from T4 to the pelvis at age 59 was the most physically taxing ordeal of my life. I would not want to go through this at age 65 or beyond. Truthfully, I did not use my knees during my recovery. I had reachers and grabbers all over my house and I used them all the time. And as Sally advised, I now get down on one knee and never squat.

I know itís easy to say, but try not to stress yourself to the point of physical and emotional exhaustion. I too was alone in this journey; and as I reflect, I spent way too much time worrying. Once youíve made the decision and have scheduled your surgery, things just have a way of falling into place.

Singer
05-11-2010, 01:10 PM
I also agree that the spine surgery should come first....the younger you are, the better.

I would also respectfully add that I think you're thinking too much and trying to control the uncontrollable and the unknown. You can prepare for this surgery, but there's no way of knowing the exact extent to which it's going to affect you physically and emotionally.

Good luck with your decision!

theizzard
05-11-2010, 03:35 PM
Originally I was going to say to have the knee done first but it depends on the recovery from your knee. I have both hips replaced and had the last one done the year before spinal surgery. I have a problematic right knee and can't bend or put my weight on that knee and that has been a problem for spine surgery and hip surgery. When you are first out of scoli surgery you rely on the rest of your body to compensate until the back is secure enough or fused or strong enough to doing things on it's own. Each surgery puts more pressure on my right knee and it will no doubt be the next surgery i have in the future. If your knee is strong and can support you then get it done after the spine but if it can't support you then it might make sense to get it done first.
good luck in what you do.
avis

doodie
05-11-2010, 06:18 PM
There's no doubt that the spine surgery is the more extensive, more costly, and most rehab intensive.

That being said, how good are your knees right now? Do you need to have the replacement(s) done now, or just down the road sometime? If you can wait on the knee(s) the spine surgery should probably be done now while you are younger and have your better insurance benefits. You mentioned that it would pay for your knee replacement surgery (but wouldn't it also pay your scoliosis surgery?)

During my recovery, initially I didn't do that much bending of my knees and I certainly didn't squat down or crawl around on my hands and knees - I used reachers and grabbers, a lot. And you will have your walker too to help you.

I had intended to quote sections of your post and address them individually but I got so confused!!! :o Too much for my brain!

It's tough making such life changing decisions alone. I'm married but ultimately it was my decision. I knew for years that I would need this surgery and put it off until it felt 'right' to proceed. Specifically, I was jumping through hoops to get my gall bladder taken out - got it out and proceeded with the spine stuff and never looked back. :) I just couldnít risk another attack while recovering from the ĎBig Dealí surgery. Not saying that knee replacement surgery is a cake walk but my gall bladder surgery hurt less than my daily pre-surgery back pain. :eek:

Okay, so enough blabbing!
Youíll decide whatís best for you Ė things always do have a way of working out for the best.

diane2628
05-11-2010, 08:05 PM
I would do the spine first. When I had my surgery, I was told to walk a lot during my recovery, as it would help with the fusion. That may be different with your longer fusion to the pelvis, but in general I think you heal better if you're able to move and try to be active. With a knee replacement, you won't be able to do that. Trying to recover from two major ortho procedures at the same time would be complicated, painful, and the recovery/therapy for one may interfere with the other. Particularly if your ortho wants to wait on the knee replacement.....from what I've heard, that can be a painful recovery, so I'd delay and do it later rather than sooner if that's what your doc wants.

naptown78
05-11-2010, 09:59 PM
I agree with the others! I have seen people have knee replacements in their 80's and recover just fine. Spinal surgery is much more intensive and easier to recover from the younger you are. I am still in recovery from my second surgery and am not doing alot of squatting either. It is not good for your knees and there are always your toes to use to pick up things! I am fused to the pelvis and am doing alot of walking so you will need to be able to do that. I know you will make the right decision FOR YOU!

titaniumed
05-12-2010, 02:29 AM
I broke my shoulder about 2 weeks before my scoli surgeries in a devastating ski crash. When I went in to see my surgeon, there was no way that my scoli surgeries were going to be delayed. The priorities were on my back, the broken shoulder was going to have to wait....

8 months later, my shoulder Doctor discovered that this had happened through x-rays. I had no idea what I did to my shoulder and never made it to the hospital,(for the shoulder) I had so much back pain. I was pretty beat.

Broken bones and shattered bone will always show up on an x-ray, even after fusion. All the shoulder bones fused during my scoli recovery.

If your knee is good enough to walk on now, I would say do the scoli surgery first, and get the knee done later. My knees are toasted from skiing hard my whole life, and I made it. I just need a little break from surgeries for a while.

By the time I'm a senior, I will probably be half titanium. I will change my user name to T2.
Ed

Back-out
05-13-2010, 04:47 AM
You guys are super-fantastic just for reading through my lengthy post and trying to advise me! For a while, I was afraid I'd badly goofed in that I'd asked a complex question that "wasn't of general interest" . Sure enough, though. some kind souls gave it a shot and I'm so grateful to you.

I haven't time to reply to each of you individually, right now, but there seems to be almost consensus, anyhow (I DID identify with Izzard!), about the vital importance of having the spinal surgery first. Each of you makes excellent points.

I wonder of it was clear though, that I wasn't asking whether to have the knee surgery instead of the spinal surgery, though! In effect, anyway. No way! I KNOW the spinal reconstruction is the main thing, and saw the knee surgery as a way of enhancing my coming through that (spinal) OK - financially, health-wise, in terms of who can help me recuperate, and my morale.

Perhaps in trying to be as comprehensive as possible in my query, the major point was obscured.

I wasn't asking if I should have the knee surgery instead of the spinal surgery (i.e before my insurance runs out and I'm stuck with Medicare alone. I know that would significantly lower my choice of surgeons and my reimbursements for all aspects of the spinal surgery).

I am hoping to fit in BOTH!

If I am able to schedule the knee surgery (regrettably, with an out of town surgery - maybe at Duke, where one son is at school and will be able to help me this summer. I've already consulted a knee surgeon there, in fact). Why couldn't I fit both in before my "good" insurances expire in mid Feb?

Do your overwhelmingly negatve replies, mean you don't think it's a good idea (for some reason) to have the Knee surgery first, or did you misunderstand my question?

I may run up against PT limits as per my plan (having both in the same calendar year), but financially, in paperwork and all other ways. it SEEMS I would be way ahead, otherwise. Furthermore, as I understand it, I'd have time to recover ("enough") from the knee jt replacement by say, - Sept./Oct. - November, latest. That's when I hope to schedule the Big Shebang. NO??

The "only" doubt I saw was whether my knee surgeon was right that I should wait to have the knee done "from the knee's POV".

Also, whether or not I would indeed be unable to squat and otherwise use the knee after the joint replacement. Note: I can't walk comfortably now on account of the knees. I've been trying lately to use my treadmill. Even with strong knee braces (which I don't think I could put on alone after back surgery), it's difficult. And that's BEFORE spinal surgery. (And I don't want to pay someone to come in just to fasten my knee braces! :eek:)

Anyhow. I was writing to present the whole picture, since although a Knee jt replacement is definitely in the cards for me (probably both knees down the line), it seems even my R. (worse) knee isn't quite "ripe" enough, "all other things being equal".

Only, as I tried to say - in spades - all things are NOT equal. That is, there are significant advantages to having the knee done first, going through the major part of recovery and rehab, and THEN having the spinal surgery - all before my insurances change.

I was seeking feedback on this, since my local knee surgeon seems to think it's a bad idea speaking purely as a knee surgeon - "QUA KNEE". He's not considering my total needs, medical alone (ie. spine) - not counting rehab, finances, morale etc. Such is what constitutes "survival" - I think so, anyhow.

I was trying to point out, how important it is to meet the patient's total needs, though (example given of my previous stenosis surgery where following medical advice - and ignoring the Big Picture - would have been catastrophic for me now).

Now the total picture means the other considerations I've outlined more than once.

Having the knee done afterward (it's definitely needed), would cost much more down the road. and furthermore. it's looking as if I won't have family to help at that point. I have a window of opportunity financially and in available caregivers - NOW. Also, I find it depressing to contemplate being as stiff as I expect after the long fusion (especially considering how flexible I've been) . I think I'll feel doubly limited (and down) if my knees aren't "available" to help me get around and get things done. Or is this is an realistic expectation of a knee jt replacement a few months out?

I DO realize the spinal surgery is by far the bigger deal in every way. I wasn't looking to postpone it indefinitely, nor trivilalizing it. Au contraire, I wanted to have the knee done to optimize my recovery from that major surgery , on all fronts. Having the knee done somewhat prematurely, was part of that "master plan".

As I thought I'd made clear:(.

God forbid I should postpone the spinal surgery! That's why I'm here and not on a knee surgery board. If anything, I fear I'm not realistic about what knee surgery will take out of me, since compared to the spinal surgery it seems like a molehill next to a mountain! But, in fact, it's NOT that big a deal (compared to the deformity surgery).

Therefore, getting in shape, knee-wise - if indeed I can! - would make my recovery from the spinal surgery easier. Save me a lot of money and be logistically feasible too. The ladies I've spoken to - pretty stoic types, I think (one had the second knee a month after the first), seem to feel most of the rehab is in the first three months, though the healing continues for much longer.

Worse, I'm not sure I'll even be able to manage the knee surgery afterward because of unique difficulties in my situation ( care givers and fusion time).

Why not get it "out of the way" even though purely "from the knee's POV" :p) itís a bit early. Sure. without the spinal problem, I'd put it off a few years (if I can stand that much pain/delay and manage the needed arrangements). If I were rushing to deformity surgery before I were sure I needed it, that would be one (DUMB) thing to do. However, moving up knee joint replacement (that I know Iíll need soon), seems more sensible given the advantages.

I tried to outline my considerations in the previous cost:benefit analysis - in order to plan the "order of operations"! (literally! :D ).

But maybe I presented the details so complexly, the main point was lost. To reiterate, I'm NOT dreaming of not having the back surgery (well, "dreaming" --- yes ) But the plain is to have BOTH before my insurances change which happens to coincide with availability of caregivers.

I'm wishing to get feedback on my reasoning in having the knee surgery before spinal surgery WHILE STILL HAVING BOTH WITHIN MY TIME FRAME. I.e. before mid Feb!

Frankly (not to give anyone any ideas), the only reason I can see NOT to do it this way, would be medical - if indeed, I haven't thought this through right. Something to do with knee rehab, the value of waiting on the knee, what it might LOSE me in preparedness for the spinal surgery, etc.

Right now (and I could be - um, dead wrong), it's looking like it's more medically indicated to have the knee first, rather than afterward.
But maybe Iíve gotten so frazzled, Iím neglecting something.

Clear as mud :cool: - now?

Thank you all who plowed through all this. I realize it's an imposition, since it's not a common situation. Thus, resolving or even merely discussing the issue, can't benefit many (any?) besides me. It may not be worthwhile for the Board.

It's very important to me, though! and I'm just burning out with weighing the pros and cons! *Sigh*. :(

Snoopy
05-13-2010, 07:47 AM
Some things to consider:

1) When you have knee pain, you tend to walk differently. This affects your back. 2) When you have knee surgery, you learn to walk differently. This too affects your back. You have to weigh these facts and talk to your back surgeon and get his/her opinion on how that would affect your recovery from back surgery. 3) Any chance of having both knees done at the same time, so your body only adjusts to the new knees once rather than twice? 4) If your knees aren't "ripe" enough for surgery, would you have complete confidence in a surgeon who is willing to do a surgery when it isn't necessary yet? 5) With your other health concerns, is the knee surgery going to be a success? (no one ever has an answer to that question, but it needs to be addressed because of your other health concerns. Yours isn't a typical situation) 6) Will it be worth the pain and expense if it doesn't take away your pain?

My mom has had SIX total knee replacements, battled cancer three times, has has too many surgeries to list and she has always said that the knee replacement surgery was the most painful of them all and she has an extremely high tolerance for pain.

I have so many more thoughts/concerns on your situation, but don't have the time to list them all now.

Mary Lou

loves to skate
05-13-2010, 05:25 PM
Hi,
Maybe you can get both scheduled within the nine month time frame you are talking about ( mid May to mid Feb of next year, if I have this right), but I doubt it. While you still have good insurance, you probably have more options. There are only a few scoliosis specialists compared to orthopedic doctors who do total knees. When you are on medicare, some of those scoliosis specialists might not take medicare, unless you already have someone you know who does. I still would choose to have the back taken care of first with your insurance unless you are sure you can get both scheduled in that time frame. You really need to talk to your spine specialist about this. You can get a cortisone shot or a sinvisc shot in you knee to buy you some time and you said your knee isn't considered ripe yet. Medicare will pay up to 20 days in a rehab hospital, I believe, and that would be plenty of time to recover from a knee surgery as far as being able to care for yourself once you get home.
Good luck in your decision. I know it isn't easy.
Sally

Back-out
05-13-2010, 07:12 PM
You, Snoopy and lovestoskate have raised some excellent points.

The problem I'm running into, is that specialty doctors are not very keen on figuring out "what ifs" involving other parts of the body - not even six years ago, when I asked they consider the neck and rest of the spine at once. The scoliosis deformity was/is the major problem all in all (although the stenosis was life-threatening, it was easily remediable).

The knee doctor doesn't want to consider how the knee affects the spine (and vice versa) and the spinal specialists don't want to figure out how the spine affects the knee and vice versa. Much less how all affect the total ME! :)

All, as with the neck surgeons, just want the clearest "landing pad" for their own plane - for the success of their own surgery. They don't seem to care or realize, that everything is part of one body, one person, one mind (and one's personal ability to cope, physically, financially and socially). Everything not right up their alley, is just referred to a different office - social services, billing, whatever.

They may pay lip service to the difficulties but when it comes down to it they just stick to their standard protocol as if there weren't another problematic body part. :(

If they do their operation well, they're happy - and yet, the total impact is left unresolved. It's like emergency care where a patient is discharged to a septic environment where they lack nourishment. My case isn't as extreme but the principle is identical. I'm not at all sure I'll ever be able to schedule the knee surgery if I wait.

Snoopy, you've raised a major issue by implication (at least, it started me thinking!). Knee surgery involves a lot to succeed - beyond just sticking in a new, jointed piece of hardware. For instance, the new joint needs to be balanced perfectly for footfall and right-left balance too. I've heard that difficulty working this out expertly lies behind the failure of many "partial knee jt replacements" and/or a M.I approach to knees.

If one leg begins effectively (or actually) shorter than the other (as is often the case with scoliosis) and then the pelvic girdle is re-angled along with other 3-D adjustments - how can the original knee planning remain suitable? Yet the spinal surgeon can't work around the knee! I see why you suggested having both legs done at once if possible, even though you pointed out that knee jt surgery is among the most painful out there (not counting, I presume this deal with the back! :rolleyes:).

May I ask why your stoic mom needed SIX knee jt replacements (that's three complete pairs, I guess) ? :eek: Surely, she didn't wear them out!?

And lovestoskate, I appreciate your pointing out (how I read it) that whereas I could probably schedule both operations before my deadline, if something goes wrong - for instance, the knee jt needs more healing time or there's a complication, it's the second (SPINAL) surgery that will lose out in the scheduling. Unlikely, I think with a good knee surgeon, but possible - and with tremendous cost attached.

BTW (snoopy) I'm not terribly concerned about the possible incompetence of the alternative knee surgeon who is "willing" to do my not otherwise "emergent" knee. I can find a lot of quacks or second raters (some are in town), but hopefully not from the pool at the Duke Medical Center. Good point, though!

What I really need is an "orthopedic GP" to put all this together and come up with an order of operations including all my needs, including the money and support. And the planning needs to be not only three dimensional but over time (including my finances!) Haha - re my chances of finding one. One thing I know for sure, is that doctors rarely give a hoot about ones financial problems when they're in the future and don't affect ones ability to pay THEIR bill! They adopt a purist approach to medical optimization. That's fine and dandy, but if one can't survive financially after a gorgeous operation, it's not very helpful.

I don't think medically one loses anything by slightly jumping the gun on joint replacement (considered, singly), except for a) using up a bit of the joint's lifespan plus b) losing a short period of potential innovation, during which a better technique might hypothetically be devised. (DELAYING replacement is another matter!) And in my case the hastening is slight at best - and not seen the same by all parties. Two surgeons (including "Dr. Reluctant") have said the right knee is almost bone on bone. The only reason the joint is still so flexible is because of my Ehler Danlos, and LOTS of quad strengthening. Spinal surgeon #1 has already said it might be an advantage to restrict the knee's motion.

However, I don't want the joint replacement to be evaluated by itself, and that's where I've gotten lost. It certainly is a knotty problem but compared to other more serious ones here, I've taken more than my share of time with it.

Thank you both very, very much for giving so much thought to this unusual decision point of no general interest. And also for those who spent the time and trouble to reply to my first post. You are all very kind and I truly appreciate it. I can't tell you how many attempts I made over the last months to write the query, and how many I gave up on, fearful of the length and irrelevancy! :o (And meanwhile, of course, the clock is ticking)
Fear is a great driver and yet past a point, it paralyzes.

Back-out
05-13-2010, 08:11 PM
Just for the record (not even counting the possible cost of needing to pay for help otherwise provided by family), I calculated the difference in savings between having the knee joint replacement now and later. That is, if I could even arrange it later, all things considered.

The savings would be ~ $25K right in my pocket - not counting the trivial cost of a month's sublet in Durham (where Duke is) if I have to go there for the surgery. None of this includes the spinal surgery.

Sounds incredible, but having had hand surgery in January, I'm right on the point of reaching Stop-Loss in my insurance policy so there will be ZERO charges for all medical expenses from here on out in 2010.

Lastly, my AARP indemnity plan would pay abt 10K for the knee surgery itself plus $700/day for hospital time and $100/day for nursing /rehab care (plus $50/day for at home nursing care, I might need). OTOH under Medicare there are substantial COPAYS instead of payouts.

I could definitely use that money. Traveling is very expensive from here, not just airfare and porters but also hotels. And - not to gloat over such awful surgery (however much of a medical miracle), it's worth noting that the spinal surgery with a Blue Cross provider, would be "worth" between $30K - 50K difference compared to having it under Medicare. Again, that's because of the difference between payouts on insurance plan #2 and Stop Loss on my primary BC plan. All compared to what it would cost with copays on Medicare.

For now, I wanted you all to realize that the timing of the knee surgery IS worth that much money.

Not all is in the form of a check written to me, but all amounts to a difference in what I end up with in the bank. In fact, if I were to have BOTH knee ops before the AARP policy expires. the knee amount would be doubled - all, a function of StopLoss plus the indemnity plan.

And all free of taxes.

(I am trying not to be influenced in my choice of surgeon by knowing that an A/P approach on separate days, would mean a difference in reimbursement of at least $15K. Some consolation for the extra scar! But I want to do whatever is medically most sound....I think :o)

Snoopy
05-13-2010, 09:20 PM
[QUOTE=Back-out;98760]You, Snoopy and lovestoskate have raised some excellent points.
May I ask why your stoic mom needed SIX knee jt replacements (that's three complete pairs, I guess) ? :eek: Surely, she didn't wear them out!?QUOTE]


Mom had two replacements in her left leg--second one was because she DID wear out the first one. She was in her 40's when it was done and she was still very active. She has had four replacements in the right leg, none of which she wore out. They've always come loose and actually, right now, both knee joints are loose and need to be replaced. Not 100% sure why then never hold, but I'm sure it has something to do with her other health concerns. Mom is the exception to the rule with replacement failures, but becuase of your other health concerns, I wanted you to be fully informed and make sure your knee surgeon is fully aware of your total health issues.

Mary Lou

Back-out
05-14-2010, 02:40 PM
Thank you, Mary Lou! Boy, I sure feel for your, Mom. That's plain unimaginable especially considering she herself said of all her (many) medical problems, knee joint replacement is the most painful. (:eek: )

At the risk of being too-obvious-to-be-believed, the failure of her right knee replacement to stay in place...it sounds like it must be the bone itself, no? How is her bone density?

I see from reading that sometimes instead of screwing the replacement jts in place, they use a kind of super-glue. I sure hope she is in the hands of a tip tip knee specialist. I see that the HSS (Hospital for Special Surgery) has several knee joint surgeons who specialize in complex problem knees and she certainly falls in that category.

Although the sad generalization seems to hold with this speciality as with others - that the more senior the surgeon (at HSS), the less apt they are to accept Medicare reimbursement - there ARE exceptions, and if so they're worth seeking out. If you call their Find a Doctor Line describing her problems and her insurance, they can give you appropriate names. Then one can look up the surgeons, and read their CV and so forth. Often their office staff can give you a sense of what their boss is like.

She really deserves a break! I doubt (hope she hasn't) she has stayed with the same surgeon the whole time but it seems it's time for her to try "the best". FWIW the HSS is currently tied with MAYO as the best orthopedic hospital in the US now. Of course, I don't know where your mother is located - am assuming for now, she's near you (and I know you're relatively close to HSS) - but that may not be the case at all.

It might be worth going to one of their specialty surgeons for a consult even if they don't accept Medicare for surgery, just to find out what the problem is, in their opinion. Maybe if they're nice guys/gals they will have a heart and work something out with her. Anyone who's gone through six total jt replacements (and needs two more), deserves major consideration IMO. There are innovations all the time in TKJR and HSS is at the cutting edge of new knee technology. She must be in intolerable pain.:(

Note that sometimes a fine surgeon has an abrasive personality, and yet that can be a reason they accept "cheaper" insurance. Hard to look beyond disagreeable bedside manner, but it might allow her to get help from someone up to the medical challenge she presents. A hint from my psychological training - if she goes to see such a surgeon armed with print-outs of their CV and publications list, etc. (I.e. presents herself as a fan who's got great hopes for this wonderful surgeon she admires) it can make a difference. They have egos - without it, they would probably not have gotten so far.

And FWIW their publications list can give a good idea of whether they have (successfully) treated people with her problem. Sucks that Medicare reimbursement really isn't enough to attract the best - and worse, many are deterred by the thought that someone older won't have that many good years left to benefit from their handiwork. Increasingly, this is written into the system of determining eligibility. :( :(

Of course, I've been assuming she only has Medicare, and come to think of it, I don't know that you said anything to this effect...Sorry for butting in with unasked for advice about this. It's just so much on my mind and I was struck by the huge number of specialty knee surgeons at HSS even though I was mostly there for my spine.

Snoopy
05-14-2010, 04:09 PM
Thanks for caring enough to offer suggestions for my mom. No, the same surgeon did not do all of her knee surgeries. When she had her knee replacements done, she had very good private insurance, so she was able to go and did go wherever she wanted for surgery. Part of mom's problem with the knee replacements, I think is the fact she had both of her knee caps removed and I'm sure that affects the surgery itself. Thanks again for offering advice for mom, unfortunately her knee problems are the least of her worries right now and the knees won't ever be replaced again.

Mary Lou

yogateach
06-28-2010, 12:29 AM
As a person diagnosed last December at age 52 with Ehlers-Danlos Syndrome, (type still unclear six months later), I am wondering how you heal after surgical procedures, Back-Out? You don't specify what type EDS you have, though you say 'hypermobile', so assume type III, or HEDS...?

I ask because now looking back over my experiences with surgeries through the 'lens' of now knowing I have EDS, the looooong recoveries from knee surgerys I had now make sense. I was so frustrated by PT making things worse, not better, and the incredible amount of swelling post-op not reducing with persistent icing, elevating and compressing. . . my last surgery in '06 took 6 full months for me to consider it 'healed' (of course, I had to work, etc, and perhaps you won't have that to contend with. . .

As a person like you with a connective tissue disorder that impacts the whole body, I am fully congnizant of the dilemma you face in caring for all of you in your decision-making.. Our medical system and the specialists in it don't work that way, unfortunately, but rather look at patients as parts, and out of context to boot. I'm trained in OT myself, but not practicing due to this very issue.

I have relied on complimentary and alternative medical (CAM) providers for caring for all of me, from massage therapists to osteopathic and naturapathic physicians and chiropractors, and if I were in your shoes (I may be, some day soon) I would seek out advise from an CAM provider I trusted for their advice on which surgery to seek first.

Just a thought. Best wishes in making your decision.

rohrer01
06-28-2010, 10:54 AM
Amanda,

I read through most of your posts and skimmed through some. But I have come to the conclusion that you are running out of time. I realize that the decision making process is very difficult. When you look at the cost of knee-replacement vs. spinal fusion, spinal fusion wins hands down for the most $$$. I don't understand how you think you would save money by having the knee done first, especially if you are not recovered enough to have your spinal fusion by your deadline in February? These are two very major operations and trying to fit both in by February is asking a lot. I think you should get your spinal fusion ASAP, and see how it goes. If you are well enough to endure another surgery by February, then go for the knee.

There are many, many qualified knee specialists that accept medicare. If finances are a true concern, many doctors and hospitals will offer patient discounts for those with large co-pays if you qualify. Your knee, I'm sure is very painful. But the knee won't eventually kill you. The back is the center of your whole body. You can't live without it... sorry to be so blunt. Anyway that's my honest opinion.

I'm really concerned for you. Don't you have a kind person from your synagogue (your Jewish, right) that can help you without charge? Maybe a young teenager in your neighborhood that would visit you daily to help out? Maybe your community has a program that will offer assistance for you. Have you ever gone to human services? They usually have a department on aging and disability. There might be alternatives there that you never knew about.

Whatever you decide to do, you need to act now so you can at least get on the surgical calendar. Many of the best surgeons have a long waiting list. Remember, it's not just the surgery, but you have follow up visits as well. Best wishes and gentle ((((hugs)))).

Back-out
06-28-2010, 11:11 AM
Very true. In the 6 weeks since I posted this, the logistics have changed just that much.

Besides my "best" local knee surgeon is dead set against it - I must say he doesn't seem to get it at all, about considering the whole person. He sees me leap gingerly on the examining table for a check up and chuckling says: "No you would definitely NOT be happy after knee joint replacement. You're so limber. You could never do THAT afterward, for example".

He thinks of me as fit. Does NOT seem to understand what the spinal surgery would do to the equation. "Showed" me bending forward (supposedly) from the pelvis, how I will be able to pick up things on the floor without squatting. Going to Duke (other alternative) would be so costly, it wouldn't save me money. Hopefully, losing a little weight will relieve some of the strain on my knees - it's supposed to (something bio-mechanical)

Stories of surgeries canceled because of medical and surgeon's scheduling changes have scared me. Also (important) I do NOT want to be forced to go on (and off) narcotics again BEFORE spinal surgery! That, I don't have time for either - and don't know for sure, I could get off anyhow...

Thanks for caring...

rohrer01
06-28-2010, 12:03 PM
Amanda, it seems that I read somewhere on here that someone is scheduled with Bridwell for January. Have you been to see him, yet? If you want him to do your surgery, I would get on the ball and get over there to see him, ASAP.

Confusedmom
06-29-2010, 12:16 AM
Hi Amanda,

I think you need to see a general orthopedic surgeon and get him/her to resolve this issue for you, about whether to do the back or knee(s) first. My aunt had hip, knee and foot surgery recently in that order--there was some logic to it, but I'm not sure exactly what. Point is docs can help prioritize this for you MEDICALLY, which really is most important.

Also, I saw Dr. Bridwell today (will post more on that later), and he still has openings for August, September and October. He does adult cases every Tuesday and Thursday.

Also, Dr. Bridwell's office gave me a print-out today that says Medicare typically will NOT cover bone mophogenic protein (BMP), so that might make a difference as to whether you do the spine on commercial insurance or not.

Evelyn