TKR 1 yr 5 months and no better

[spyac3]

@skigirl I did decide to order the brace I will try anything at this point

 

[Jamie]

If you're in a position to pay out of pocket for at least a consultation visit and some xrays, that would be my suggestion. If that's not possible, then I think the only thing to do is wait until you are in a position to see someone else. You need a really good revision surgeon....one who is used to diagnosing and fixing complex problems.

Syracuse, New York

Dr. Michael Clarke - hip and knee, primary and revision


Rochester, New York (University Medical Center)

Rishi Balkissoon - Knee and hip, primary and revision

John G. Ginnetti - Knee and hip, primary and revision

Here are some possibilities for you. Since your surgeon is not associated with the Rochester University Medical Center, it should be possible for you to get an independent assessment there and not have to drive. I didn't look in Buffalo, but will if you need me to. Since you are paying out of pocket, you can ask doctors and hospitals for a reduction in the fee or to at least pay what an insurance company would receive. Many times they will do this, especially if you pay cash up front. Or they almost always will offer at least 3 months of interest free payments.

In reading back through your last post, you mentioned Dr. Ginnetti. You've seen him then???

 

[Jamie]

Ahh.....I see now that you visited with Dr. Ginnetti at about 7 months out. Since it's later now, you most likely could press for more action from him. Based on Jo's analysis of what the problem might be, it could be beneficial to go back for a visit if you can.

Also, since you are on disability, have you looked into going under your state's Medicaid medical insurance? You would need to talk with your county social services office to see if you can qualify. It is quite likely that the University Hospital doctors might be in that plan.

 

[spyac3]

@Jamie Lol .... yes I looked into it the Medicaid program, Well let me tell you a little story... My wife is only offered a single high deductible plan with her employer... I started to fill out the insurance form for medical and found I didn't qualify based on her income and my LTD, there were additional problems so I called and they reset everything now I already knew I didn't qualify so I logged out without filling in income and other parts. Don't you know they sent me a medicaid card I won't use it since I know that doing so will only cause me grief down the road. But talk about inadequacies in our governments processing of Medicaid. Not only that but NYS turned me down for S.S. benefits even though their own Independent Medical Exam found merit in my claim giving me light duty work restrictions now based on my age and residual functional capacity or RFC and work history I qualify.
Thank God my employer had a good LTD plan

 

[spyac3]

@Jamie I did this all online maybe a sit down face to face with a case worker is a better way to go. Lord knows I have nothing better to do at this point

 

[newlybionic]

You might want to get a lawyer that helps re-file with social security. They charge no upfront fees and will take a part of the lump sum payment you will get. Then after a few months out you can then apply for Medicare.

 

[Jamie]

Marian's suggestion is a good one. Unfortunately the process can be quite lengthy, but it's always worth a try. And I agree with your idea that it would be best to talk personally with an advisor. They might know other programs that could help you.

 

[L.I.T]

@spyac3, I'd also like to suggest another backdoor route. The hospital I used to work with (and many others) had a 'foundation' that was dedicated to helping those who needed serious medical care, but could not afford it, and did not qualify for government programs. Not a lot of people are aware of these 'foundations' (they may be called something else in other hospitals).... But it couldn't hurt to see with which hospitals the above listed docs work - and then call them to ask if they have any charitable foundation. The trick is to be persistent until you can get *someone* to advocate on your behalf. As an adjunct, university hospitals often have a lot of private alumni or 'donors' and are also great hospitals to contact.

In addition, you could also talk to the office managers for the surgeons above and see if they are willing to set up some sort of payment plan for surgery, if you pay for an office visit out of pocket. You never know - you may get lucky.... I used to work with a lot of surgeons who would take on 'self-pay' cases but knew they were not going to get paid (or paid much) - simply because they knew the patient was hurting and needed the operation. In addition, some docs and hospitals (like ours here) will drastically reduce prices for self-pay services b/c they know the local population can't afford to pay the high prices billed to insurance.

I'm so sorry things aren't well with your knee. It may take a LOT of work, but there are still enough people in Healthcare that care about 'people' rather than $$. The odds may be slim, but if you keep trying, *one* of these avenues is bound to pay off.

I suppose, one other avenue that might be a little more 'last resort' and publicized might be to contact the news outlets and see if any reporters would be willing to do a sympathy 'piece' on you in an attempt to help you secure funding through a charity or a surgeon's good will. This is a bit of a slippery slope, and I don't know enough about it to advocate going this route - but sometimes, if you are at your wit's end, you could be willing to try anything. I've definitely seen some people get the financial help they need once their story has been publicized.

Everyone else had great ideas, and likely my suggestions should probably be considered as a last resort. But the worst anyone can say is 'no' and at least you'd have tried.

Good luck!

 

[Josephine]

@Josephine looking through my notes Dr. Gianetti did go into a brief detail or explanation as to how it is hard for Surgeons to properly reattach the ligaments so this does make sense.

Now that must be the best caveat I've ever heard! To a skilled surgeon, it is NOT difficult! And that he said that makes me wonder why he said it. People who do that are usually trying to cover themselves in case anything should go amiss.

 

[PegGar16]

On the SS Disability they always seem to deny it the first time through. Appeal it to keep the claim open and get an attorney, Everything will be backdated to your original claim. You have paid into this since you started working and have earned the right to use it!! Sorry about the soap but it tics me off when people who truly need it have problems getting it and you see slackers getting it.

 

[Jamie]

Now that must be the best caveat I've ever heard! To a skilled surgeon, it is NOT difficult! And that he said that makes me wonder why he said it. People who do that are usually trying to cover themselves in case anything should go amiss.

Since this was said by a second opinion surgeon (a revision specialist) at a totally different hospital, maybe he was just trying to make an excuse for the original surgeon. At least he didn't indicate it would be a problem for HIM to do it properly.....

 

[spyac3]

@Jamie I agree with your comment and have an appointment setup with Dr. Ginnetti March 17th, 3 days before going to the Surgeon who performed the surgery. It makes sense to me as Dr. Ginnetti is the only one of the 3 who gave me this reinforcement about it seeming loose at about the 6-7 month mark. Your right he didn't say he couldn't do it and at least offered that information up early on.
So any advice on what I should be asking him? X-rays never show anything is it time for an MRI? or Nuclear Imaging?? which would show what???

 

[spyac3]

@PegGar16 I have S.S. on appeal with a disability lawyer it was denied at initial and reconsideration level ... the Attorney is more then confident saying the State level already proved the case for him but yes its a waiting game.
I have to trust he is right

 

[sistersinhim]

What a horrible time you have had. I would not ever go back to my original OS. He's blowing you off. How could you ever trust him again?

 

[spyac3]

No choice at the moment, LTD requires doctors care .... now that I have an Appointment farther down the recovery period with the other Dr. that hopefully will change

 

[Jamie]

Actually an MRI or other imaging may not show any more than an xray. I don't really have any specific questions to suggest other than to try and draw out from the new surgeon what you think might be the problem and what he could do to help you.

I did some checking into your original surgeon and saw a couple of red flags. He appears not to specialize in knee and hip replacements and is more of an orthopedic "generalist" surgeon. We usually advise people to not go to surgeons like this because it is very possible they don't do a lot of knee replacements. Skill of the surgeon is everything with knee or hip replacements - especially the knees since there can be some fairly tricky balancing of the ligaments to be done in some patients. Your new surgeon does specialize in knees and hips and should have many of these surgeries under his belt. Come to think of it, you might ask how many revisions he does each year and whether he has dealt with a problem like yours before.

I hope your appointment goes well. You're going to be a much better informed patient now and more able to talk out issues with this new doctor.

 

[spyac3]

@Jamie thanks for the information, a lot of questions in my head as to why the Dr. would take on something outside of his specialty and not recommend someone else. I was referred by my primary Dr. originally for knee pain which originally was 2 tears in the meniscus that developed into the formation of a Bakers cyst (still have). He repaired the tears which lasted maybe 2 yrs before needing the TKR as I was bone on bone. So I didn't truly research the knee replacement aspect ... he said he did replacements and I said ok pretty much how that went

 

[L.I.T]

@Jamie @spyac3 Jamie, I would definitely agree with what you said. But I would also like to mention some considerations. My surgeon is nicknamed "the wingman" because he specializes in shoulders, even though he does knees, broken bones, and arms. BUT, I had two additional things to consider - when I saw the "knee specialist" here, he dismissed me when I mentioned a possible autoinflammatory or autoimmune issue, and said I needed a partial replacement. While I was considering a partial, I just *happened* to meet 4 people who had total knees by my current surgeon, and 3 more that had either a shoulder, leg, or arm done. When I asked around to the local nurse practitioner and my physical therapist, they all emphatically said this surgeon was good at every joint he did.

When I met my surgeon, he gave me my options, and didn't try to make the choice for me. He also let me know that *if* I did have an autoinflammatory or autoimmune issue (which he wasn't comfortable ruling out due to my poly arthritic joints, young age, and other symptoms), a partial replacement was contraindicated, as I'd likely have to have it revised in about 5 years or so. He also pointed out an area on my lateral meniscus that was already bulging, and said that was something to consider. He armed me with a lot of knowledge and left it for me to decide partial vs total.

So I think you CAN end up with a good surgeon even if knees aren't their specialty - but the vetting process is key. Had I not met people who had their knees done by him, I might not have chosen this gentleman.

You can also end up with a good knee specialist who doesn't take into account your entire medical history. Had I gone with the specialist here, I would have ended up with a partial, and may have had it revised early. Then again, it may have been fine. But that he dismissed the other parts of my medical history did not make me comfortable.

And with the surgeon I chose, he knew my goal was to get to hiking and biking again - and chose a knee implant appropriate for my goals.

Of course, I live in a small area with only one hospital. And I think 95% of the time, the specialist will be a great choice. But every once in a while, you can find a non-specialist who will do a great job, and *might* view his patient as more than an x ray or MRI. And that, to me, was invaluable.

After my TKR, (Ironically) a friend who referred me to him (she had a TKR, also) went to him for a hip issue. He referred her to someone else, as he said the two things he does NOT do are hips and spine, as he doesn't feel that he does a great job in those areas. That confirmed to me that I had the right guy!

 

[Jamie]

@L.I.T ... I'm in total agreement with you. There are great surgeons out there who do not specialize. Obviously it's so much better when you have local feedback or know the person's work. Since we obviously cannot know all that when helping people find the best possible surgeon for their needs, we will usually go with recommending the specialists. It just gives a better chance for success. Usually I'll try to give several names so that the person can meet with more than one surgeon and make a decision after personal contact. Like your experience, most of the time if you ask a few questions and really have a dialogue, you'll know whether the surgeon is right for you or not.

a lot of questions in my head as to why the Dr. would take on something outside of his specialty and not recommend someone else. I was referred by my primary Dr. originally for knee pain which originally was 2 tears in the meniscus that developed into the formation of a Bakers cyst (still have). He repaired the tears which lasted maybe 2 yrs before needing the TKR as I was bone on bone. So I didn't truly research the knee replacement aspect ... he said he did replacements and I said ok pretty much how that went

@spyac3 .... working with knee pain and arthroscopic surgery is a whole different skill set than joint replacement. I can see why your GP would have recommended you to this doctor initially and it sounds like he did okay getting you a few more years out of the knee before needing a TKR. I can't say why doctors want to dabble in knee replacements along with a lot of other types of surgery as it is such a complex procedure on a very complex joint. Of course, that's not to say that one wouldn't get a great knee from a really good surgeon who only did fewer than 150 TKRs a year. But your chances are much improved for success if you know your surgeon does upwards of that 150 number and has a good success rate. And even the best surgeons can have "problem" knees following a TKR. They are human, after all. So don't think I'm belittling your original surgeon. We just want to get you the best possible chance for a good result when you get your knee fixed. Whether it might be a revision or a change out of a spacer, or whatever....you'll have the best chance for success with a surgeon experienced in dealing with your specific type of problem. Don't look backwards trying to figure out why things happened. Look forward to getting the knee in good working order so you can move on with your life! I do believe that's possible so don't give up!

 

[L.I.T]

And I completely agree with @Jamie. I think, for me, I always like to get a couple of 'second' or 'third' opinions. The hard part of it all is that it is REALLY hard to know who is and who is not a good surgeon. Having worked in the OR, I know every nurse has a 'do' and 'do not' list. When I moved here to Utah, I had no clue who was good - and I was prepared to camp at the doors outside the OR to catch a nurse and ask who they would have do their knee replacement. I was also prepared to be very inappropriate, and call the OR desk and ask the nurse who answered. Other good options are to ask physical therapists, too. Have no shame, because this is *your knee*.

Had I not 'accidentally' met real people who had a TKR (all by the same surgeon), I would have had to resort to the other methods. And it's usually not an inconvenience to certain to people if you ask - I know I was always happy to refer people to a good surgeon!

Jamie is absolutely right... The bottom line is to do the homework....especially since you are needing a second opinion. I know people here are always willing to help.

Wishing you the best of luck!