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Posted 12/11/2009 6:14 AM (GMT 0)
Hi Folks,

I have been having major issues finding a hand/wrist surgeon who is in my insurance company that knows anything about dealing with avascular necrosis. I am trying hard not to have to deal with the only hand surgeon around me, since this avn stuff is supposed to be not so common. I found a few doctors at the Hospital for Special Surgery in NYC, and even a couple that know about avn in the wrist, however, there is a huge problem. NONE of them participate with my insurance.  NOT ONE! Can you believe that? And, I could come see them anyway, if I can come up with the anywhere between $500 and $800 just for the office visit/consult. If there are any xrays, tests, etc that need to be done, those also have to be paid upfront but they will submit the forms for my reimbursement......rolleyes

I did find one hand surgeon who is at the top of the line as far as knowledge about avn in the wrist goes, in fact developed many of the surgical techniques used  and he was even listed as participating in my insurance! I thought, great, a top notch doctor and he really knows his stuff about dealing with this......so I called and tried to make an appointment. First the receptionist told me that I wouldn't be able to see him for several months- as in April, oh and the bad news ----- he doesn't participate in my insurance....smhair Of course, I asked why he would be listed as participating if he doesn't and she said, well you can always pay the fees and we will submit for you but he doesn't participate......the charge for the consult????? A whopping 800.00 just to walk in the door.....

I decided that was not going to work for me.....

 

Anyway, I finally decided that I needed to see someone, to find out exactly what stage this is in, to get that stupid cast off....and then what my options are......I called the one wrist/hand surgeon around me and went today. I was given an 11 am appointment and told to come a bit early so that I could fill out forms....I do just that and get there about 15 minutes early. I sat waiting in the waiting room for an hour and a half.....my patience isn't good about having to waste my day sitting, not to mention the fact that sitting for more than 15 minutes really makes my hip pain flare....I didn't sleep last night because my hips were really painful and I am not  in the mood to sit around waiting. Finally, they take me in, put me in a room, I answer all of the new patient questions and am told, she will be right in.......another hour and 25 minutes later, she is still nowhere to be found. My husband went with me today and he had a class he had to be in at 2....he is already going to be late and his professor is not an understanding type of guy....so I tell my husband we are leaving, I've waited long enough.   We go to leave and the woman at the front desk asks me where I am going and I tell her that I didn't have all day to wait. If I wasn't going to be able to see the doctor at 11, why schedule me for then? I hear her tell someone that I am leaving and suddenly the doctor walks around to where we are and says, Oh I was just coming in to see you....nice, she was in the lunch room eating her lunch....

Anyway, we go back in, and she tells me that the lunate bone is fragmenting in the MRI films. I ask her what stage the avn is in , and she tells me that I am half a step away from the final stage, where the bone disintegrates. To quote her, the bone is dead, dead, dead.....she says that they could try to do a bone /blood vessel graft but it has a 25% chance of  succeeding..and it is not really an option in my case. She says they can take the row of bones closest to the ulna and radius out, and hope that the other row of bones will migrate to where the other bones were and that I would loose much of the strength in the hand and wrist or they can fuse the wrist and I will loose flexion and extension in the wrist......great options ,don't you agree?eyes

Sigh.....

Anyway, that is the latest with me. Needless to say, I am going to continue looking for a different doctor, one who has a lot more experience in treating this,  since this is my dominant hand and I can't afford to loose the use of it....

Oh, and I got the cast cut off and a custom made brace for my hand/wrist/forearm that is very similar to the cast, but it is open on the top. I can't take it off except for a few minutes, because the bone may just collapse the rest of the way.

Sandi

Posted 12/11/2009 6:22 AM (GMT 0)
Sandi,
I'm so sorry for your ordeal finding a doctor - and the ordeal when you did go to one!

Regarding the insurance, sounds like this insurance probably doesn't pay that much and that's why a lot of the doctors don't participate. (a problem I'm having, too) One thing you can check with your insurance if you haven't already is to see if you have an "out of network" benefit. If you do, they'll reimburse you, but you'll pay more than you would for an in-network provider. That's worth checking into.

If I think of anything else I'll let you know.

(((((((((Sandi))))))))))

PaLady
Posted 12/11/2009 10:20 AM (GMT 0)
Sandi, gee I am so sorry to read this post. What a lousy dr and the staff for that matter. Can you go online with your ins and see other hand surgeons listed perhaps in a big town that is close to you? I know traveling is not good but this is your hand and you will need the best there is. What rotten luck. I have no patience sitting in a drs office, sitting is just not one of the things my body does well. I totally understand where you are coming from. Do you have a teaching hospital close by that accepts your insurande by chance? Its a shame you are not in Tx we have an excellent one in Dallas.

I like you will get up and leave. My time is just as important as theirs. But the problem we run into with these drs, they are booking anywhere from 3-4 patients for the same time, resulting in lousy care. They do this because the ins companies have cut theirs fees. Medicare is a nightmare for this. I truly feel like I have indigent care when I tell an office I am on Medicare. Trust me they spend as little time with me as possible and it is only going to get worse instead of better. Then the next problem is finding a dr that will take Medicare for obvious reasons.

Let us know what you come up with. It may be well worth your time to put in a call to your insurance and talk to someone about the kind of hand dr you are needing. Glad the caste is off.

Posted 12/11/2009 4:54 PM (GMT 0)
    Wow....Sandi! What a mess! I feel so terribley bad for you...and hope that you can find a surgeon that will be on your insurance program. It is down right maddining what a person has to go through to get proper treatment. The waiting in the office is the pitts....and they should call and give you the option of reschedule if their running that far behind...I mean really!...give us all a break here! Please keep posting on this if you would please....I for one, would like to see the outcome of it. .....hopfully a positive one too! :) Take care of yourself....and know that we all really do care.

               Michael

Posted 12/11/2009 5:55 PM (GMT 0)
Hi Sandi,

I'm sorry you're having such a hard time find a doctor. Insurance can be such a pain on so many levels (no pun intended). I must say, though, if you do end up going with one of the HSS doctors, they are wonderful! I can't say enough good things about HSS! I had all 3 of my shoulder surgeries done at the Hospital for Special Surgery by a shoulder surgeon who is regarded as one of the best in the country. It wasn't just the doctor that was excellent, but his PA and staff too. Actually the PA was amazing. I was one of their problem patients, as they usually just see someone a couple times/do one surgery & they are done, but I kept coming back with more problems (none of which was their fault). I think I was one of their longest running patients, as I saw my surgeon for 4 consecutive years.

HSS didn't take my insurance either, but we were able to get out of network coverage so that we only paid 30% of the bill and the insurance paid the rest. Do you know if your insurance has some kind of option like this?

Skeye
Posted 12/11/2009 7:40 PM (GMT 0)
Sandi
Honestly I feel so bad for you! The question I have is, if you leave the dead bones in there will this spread to the good bones? I mean how long can you go with this without being treated or taken care of? I sure wish I could say something that would make a difference for you! I keep you in my prayers, but as of now they don't seem to be helping!

I do wish YOU all the BEST

White Beard
Posted 12/11/2009 8:05 PM (GMT 0)
Sandi,
I am also wondering if you could at least get a second opinion from one of these doctors who's a specialist in this for a lot less $$$. You could have all your records from tihs surgeon sent there - and maybe they could even do it via the phone or something. Just a thought.

PaLady
Posted 12/11/2009 8:56 PM (GMT 0)
Hi PA Lady,
We have out of network coverage, but at the prices that these doctors want for an office visit, plus whatever testing they would require would just about kill our budget. Not that we have a lot left over each month as it is.
I talked to someone who has avn in her wrist too and she has a doctor in NJ that isn't too far from me and he does participate in our insurance, so I am going to see him. Not until the 21st but still it is better than nothing at this point.
I was in so much pain yesterday and so frustrated by the whole waiting game, and the problems with the insurance company.
We have good coverage and the reimbursement rates for physicians is not bad considering. In fact, our policy probably pays more than most others, but to have doctors at a major big city hospital not take ANY insurance?? I can't imagine that they would refuse to treat a patient who comes in inpatient to their practice but it makes it next to impossible for those of us who aren't inpatient, who need to see one of the specialized doctors are left to either come up with big bucks or left without what I would consider proper care by the proper physician. What happened to the Hippocratic Oath?
Anyway, I have one doctor to see now, and he actually knows what it is that I am dealing with.....so hopefully, I will like him and be confident in his assessment of where I am and what needs to be done.
Sandi
Posted 12/11/2009 9:01 PM (GMT 0)
Hi Stray,
I checked with the Hospital for Special Surgery, Lenox Hill, NY Presbyterian, Beth Israel, and NY Bone and Joint and I really don't want to go back to NY B&J if I can avoid it. That is where I had my first back surgery and I didn't care for the care there very much.
I look at my time as being as valuable as the doctor's. I don't keep them waiting, so if they are running more than half an hour behind, I want to know so that I can either reschedule or find another doctor. If we are more than a few minutes late to most appointments, we get the "look" from the office staff, why should it be any different if it is the doctor doing it??
Posted 12/11/2009 9:05 PM (GMT 0)
Thanks Michael. I will let you guys know. I always do. It is just frustrating to be kept waiting like that.....I can see a half hour, I can not see being kept in the waiting room for an hour and a half and then in an exam room for another time period similar to the time in the waiting room. If the doctor is not there, or is backed up, then by all means offer the opportunity to reschedule or ask if the patient minds waiting. Doctors offices used to do that....but anymore they simply expect that patients will wait indefinately for the doctor to get around to seeing them.
If this were a walk in place, then you are taking your chances, but when you make an appointment, it should be relatively close to the time that the appointment was made to when you are seen.
Sandi
Posted 12/11/2009 9:11 PM (GMT 0)
Hi Skeye,
One of the reasons that I wanted to use a doctor from there is because of the specialization in avn that those doctors have. This isn't a common problem and can cause huge problems for me, loosing what little bit of ability that I still have to walk, and the loss of the use of my hand are huge....so I wanted a doctor who knows what he/she is doing, and can offer me the best treatment options so that I can preserve the ability that I have to stand and walk a little and to use my dominant hand.
I have searched most of the NYC hospitals looking for other orthos who have experience with avn and haven't had much luck and most of the experienced doctors will only see a few cases of this over 10 years or so , so it would be really stupid on my part not to find those who have had experience and know what they are doing, over going with someone who read about it in a textbook and thinks that they can do the surgeries necessary......do you understand what I mean?
We have out of network coverage but have to pay the first 1500 out of pocket, we have an in network deductible and out of network deductible as well...
Sandi
Posted 12/11/2009 9:20 PM (GMT 0)
Hi Whitebeard,

It can spread to the other bones, in fact it is there on the ends of the ulna and radius too, and two other bones are showing some what appear to be holes in the bones as well in my hand. We have no idea how long  it has been there, nor how fast is has gotten this bad. I only have a half of a stage left before the bone crumbles, and then that will create a whole new set of problems because the other bones will shift into that vacant space, which means that the bones on either side of it will also shift.

As far as my hips go, the femoral heads ( balls in the hip joint) can crumble, which would mean that the hips could fracture or dislocate. Neither of those options sound too good to me. Once the hips crumble, I could loose the ability to walk permanently if I wind up damaging the wrong thing.

The big problem with avn is that no one knows how long it will take before each new stage starts, or how long someone will stay in a particular stage. And the farther along in the stages you are, the less options there are for the surgeons or the patient.

And don't give up on prayers. Sometimes, when they appear to go unanswered, it is because the answer that you are seeking is not in someone's best interest......ever heard of thanking God for unanswered prayers? Sometimes God's greatest gifts are unaswered prayers. wink

Maybe I was supposed to wait until today to find the doctor that I should see instead of seeing someone just to get some answers.....

Thanks WB,

Sandi

Posted 12/11/2009 11:02 PM (GMT 0)
Sandi,
I feel for you on the waiting time, my last pm doctor appointment I waited 2 1/2 hours in the waiting room then another hour in the back and by that time I was pacing, I can't sit long for these doctors I wonder how they'd feel if this happened to them..Sure wish I could help you out with the insurance...
Good luck on the 21st...soft caring healing hugz...
((((((((((((((((((((((((((((((((((Sandi)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Posted 12/11/2009 11:15 PM (GMT 0)
Sandi,
I agree with you on the waiting. If they aren't running on time they should either reschedule or give you an option to wait or reschedule. They act like they are the only ones that matter. I actually left an office one day because I had been kept waiting for over an hour. I was scheduled for a 9 am appt and the doc didn't come in until 10 and then he took two OB patients ahead of me. I worked at the hospital where I was going and when he saw me later he said "I think you are upset with me" and I said you know if you didn't want to see me until after 10 you should have scheduled me for 10, he said well I had an OB that I needed to check. I said nope I checked with OB and you have no patients there and hadn't been in there this morning so that isn't true. At least he apologized but I never went back to him. I'm not going to play that game with them.
I hope you can find someone that isn't too far away and someone that your insurance will cover. The healthcare system just seems to get worse and worse. You are in my thoughts and prayers. Take care I care.
Posted 12/11/2009 11:50 PM (GMT 0)
Sandi
I understand what you are saying and maybe your right about waiting til today to find your Doctor! But I can only imagine how frustrated you must feel about all this. I know this might sound crazy but it is just so frustrating to me to just read about what your going through! It must be so hard for you! Yes I will continue to keep you in my prayers!



I do hope this all works out well for you! May Gods Peace be with YOU!



White Beard
Posted 12/11/2009 11:59 PM (GMT 0)
Sandi,
I'm so glad you found at least an option of a doctor who's a participating provider with your health insurance. You know, I think the problem you're having may be (and I say MAY because it's just a hunch) with insurance may be something many of us either see already or will soon down the line. The hospitals have signed agreements with many of the insurance companies and have to accept their rates, but the doctors and many of the outpatient facilities may not. And may deliberately be created (in the form of a separate corporation) not to do so. That's the problem I'm having with the insurance for my endoscopy, although fortunately it appears that it will be covered IF I have it in the hospital.

I agree it's going to get worse, and scarier, for all of us. I don't know where to place blame anymore, as it's so complex. And the health insurance companies from my personal and professional experience are the worst ones in the bunch, as they have created the complexities from the get go a couple of decades back. I just think it's going to come down to if you have money, you'll be able to get the best of care, but if you don't....well, you'll have to settle for what you get. There may be some form of insurance, like the policy I've got, and I'll be deemed "insured" but it won't cover tons and tons of stuff. And forget about getting the cutting edge treatments, especially for complex cases.

Oh, I'd better stop getting off on a rant. Should put this on Skeye's thread!

Anyway, I do hope you find some answers.

(((((((((((((Sandi)))))))))))

PaLady
Posted 12/12/2009 3:32 AM (GMT 0)
Chartreux,
It makes me mad to have someone be that inconsiderate of other people's time. As I said, if a patient did that, they would have cancelled the appointment and given us either a hard time or a lecture about not showing up for the appointment.....so it is not any different for them. Atleast I did find one doctor. I looked again today at some other hospitals for another surgeon but failed to find one. I also checked our physician locater and got a few more doctors names but they don't have any experience in avn.....so that was a bust.

If I find myself having to pay for an out of network surgeon , it won't be until after the New Year....which means a whole new deductible again....
Thanks, I'm sure that I will let you guys know what happens then....Sandi
Posted 12/12/2009 3:44 AM (GMT 0)
Thank you Cathy. It can be so frustrating dealing with insurance, even when you have decent coverage. I remember when I was pregnant with my oldest and I was dealing with almost constant premature labor from my 4th month on.....they wanted me on bed rest, and a home health aide to come in to take care of meals, etc while my husband worked....the insurance company refused, and flatly told my OB when he questioned their rationale, that they would pay the few hundred thousand dollars it would cost if our daughter was born early for her stay in NICU , but wouldn't cover a health aide for a few hours each day to make sure that I didn't wind up delivering before I was due....sometimes, the decisions they make , make no sense.....financially or otherwise.
Sandi
Posted 12/12/2009 3:45 AM (GMT 0)
It is frustrating WB, but what else can I honestly do about it? Fighting with a doctors office about not taking insurance is a battle I am not equipped to fight at the moment. My concern is not wasting too much time so that I don't wind up with more damage to my wrist or hips than already exists.
Again, thank you for the prayers.
Sandi
Posted 12/12/2009 6:00 AM (GMT 0)
Sandi,

I wish there was something I could say or do that would help! What an awful thing to have to go through, on top of your pain. I'm glad to see you did find a doctor to see, I hope they have some good news to give you and are able to help. I'll keep you in my prayers.

Jenna
Posted 12/12/2009 6:46 PM (GMT 0)
Thanks Jenna. I'm glad that I found one too. One is better than none, at this point. Although now it seems that I have a new problem. My hand, wrist and forearm are tinged blue amd swollen, as well as my fingers. It's been this way since the cast came off and now I am getting concerned. There is a  slight temp difference in my hands too........and of course, it is the weekend, so there are no doctors to see unless I happen to go to the ER......eyes  It never ends.nono
Posted 12/12/2009 6:56 PM (GMT 0)
Sandi please, please watch out-sounds like a circulation problem. Perhaps ER is where you need to be.
Posted 12/12/2009 7:24 PM (GMT 0)
I hate doctors and I hate ER's more. The very idea of going to the ER is enough to make me want to go into hiding. I am getting really concerned. Why aren't there office hours on weekends when these things happen?
Posted 12/12/2009 7:59 PM (GMT 0)
I agree with straydog, as stinky as ER's are, that is really scary and needs to get looked at. I hope everything works out for the best!

Jenna
Posted 12/12/2009 8:27 PM (GMT 0)
Sandi,
Don't blame you for not wanting to go to the ER, but I have to lean with Susie on this, especially if it gets any worse. I wonder if the cast was too tight. Can you move your fingers (very carefully, I'm talking about here!) or gently massage them and see if that gets some blood flowing? Course with all you have going on I wouldn't massage any of the areas of concern.

If it gets any worse, though, at the very least call the ER. Does your doctor (the one who did the cast) have an on-call number? That could be the first step. Don't be afraid to bug them about something like this.

Let us know how it goes.

Hugs,

PaLady
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