Dr. Lonner

[rohrer01]

I have been doing some research on which doctor to get a second opinion from and have narrowed it down to Dr. Lonner and Dr. Lenke. They are the ones I hear the most about. I am impressed with Dr. Lonner's up-to-date knowledge of minimally invasive procedures. I am impressed that BOTH doctors put up patient testimonials with before and after X-rays. I will say that it looks as though Dr. Lonner gets better corrections in curvatures than Lenke, but Lenke is also doing surgery on some pretty seasoned people (how do you say "old" with political correctness?) with previous surgeries, broken Harrington's etc.. At least the man isn't afraid to tackle the challenge. As I think of my experience with Dr. Tribus, he has no such testimonials or before and after's on his website.

My only problem is how to pay for it. I have had many people suggest to me to try to get SSI for chronic pain. Then I can get medicare and get the surgery from a surgeon of my choice. I just feel guilty doing it. I know my pain is disabling, but I see so many of you with worse deformities working that I have a hard time justifying it in my mind. Any thoughts on that would be great, too. Don't worry, my feeling won't be hurt if you think I'm nuts for considering it. I just don't know how we could ever pay for a surgery like that. There is no way on Earth that my insurance would pay for me to go to NYC for an operation like that.

I have traveled out of state to go to the best female reconstructive surgeon, I believe in the country, if not the world. I had the money then to pay for it, but it was cheap, only $6000 for EVERYTHING including motel and airfare and the surgery. Now I'm broke. My house isn't even worth as much as the surgery would cost, so I can't even go that route.

I'm also having a VERY bad pain day.I have days like this pretty often and I know it would be very difficult to hold down a job unless I was self-employed. Nothing has helped me today. I can barely function (no housework at all - I feel guilty putting it all on my family), my neck hurts, my ribs hurt, my spine itself hurts, I didn't even take my walk todsy. Oh wait! It's not scoliosis related! LOL I'm just being catty. sorry. Any input on Dr. Lonner or SSI would be greatly appreciated. Thanks in advance. Maybe he would let us make payments????

[jrnyc]

Oh, rohr..i am so sorry that you are having so much pain lately!
i love Dr Lonner...i have seen him for about 5 years as he follows my curves...he's been recommending surgery to me for at least 3...but now, this time, it is minimal invasive...

so, you dont have insurance,huh...is that what you are dealing with? i carry the insurance i had before i retired, but pay waaay more for it now...i also have Medicare as of a year ago...however...and this is a big however...lots of doctors do not take Medicare!!! and i havent switched to one of those "Medicare Advantage" plans, cause i have doctors who dont take that either! thus, i just hold onto my HMO insurance that i carried before i retired 3 years ago...i dont even know why i pay for Medicare...i think i used it once...Dr Neuwirth takes it...at Beth Israel Hosp in NYC..i liked him...saw him a year ago...dont know if he is doing minimal now or not...but i just liked Dr Lonner more....there are a few people i've seen on forum who had Dr Neuwirth for surgery and liked him...plus he wrote one of the scoli books!
disability is definitely get-able..as far as i am concerned, i filed when i had to retire due to the pain...went from working 2 jobs...and paying social security for both...to not working at all...

jess

[rohrer01]

Oh, rohr..i am so sorry that you are having so much pain lately!
i love Dr Lonner...i have seen him for about 5 years as he follows my curves...he's been recommending surgery to me for at least 3...but now, this time, it is minimal invasive...

so, you dont have insurance,huh...is that what you are dealing with? i carry the insurance i had before i retired, but pay waaay more for it now...i also have Medicare as of a year ago...however...and this is a big however...lots of doctors do not take Medicare!!! and i havent switched to one of those "Medicare Advantage" plans, cause i have doctors who dont take that either! thus, i just hold onto my HMO insurance that i carried before i retired 3 years ago...i dont even know why i pay for Medicare...i think i used it once...Dr Neuwirth takes it...at Beth Israel Hosp in NYC..i liked him...saw him a year ago...dont know if he is doing minimal now or not...but i just liked Dr Lonner more....there are a few people i've seen on forum who had Dr Neuwirth for surgery and liked him...plus he wrote one of the scoli books!
disability is definitely get-able..as far as i am concerned, i filed when i had to retire due to the pain...went from working 2 jobs...and paying social security for both...to not working at all...

jess

It's not that I don't have insurance. My hubby and I pay $680 a month for our insurance. They are an HMO and I had to go before a board of doctors to fight just to get to see Dr. Tribus. I doubt that they will ever approve me again, especially for a second opinion where they may have to pay for the surgery! Dr. Tribus is "in-state" at least. I would have to travel to see Dr. Lonner. Maybe if I call his office and explain the situation, they would set up a payment plan or something...who knows. I can't get disability because I haven't worked. I've always been a stay at home mom. And when I did work, it never lasted more than a couple of months because of the pain. I end up having to quit. So I went to school and got a very employable degree, so I thought, but they find out I have lifting restrictions and my age, 41, no one will hire me. Like I said in an earlier post, my husband doesn't want me to work - he is protective because of my back. Some days I get really mad at him, but others, when I spend the night crying in pain, I thank him. So I don't really know what to do there. My mom is on medicare - she's retired- and has found that most doctors do take her insurance. She bought all the expensive suppliments, though. She gets VERY little money in social security.

Applying for SSI is a long process as well. I'm sure it would take a year or more, and in the meanwhile I stay on drugs??? I wish it didn't have to be so hard. I wish more scoli doctors were more understanding. But that's the dog-eat-dog world we live in I suppose.

Here it is, late once again and my meds never kicked in. I will be awake until 2:00 am waiting until I can take another dose and hopefully go to sleep. It's aweful!! Thanks for listening!

[joyfull]

I don't have an HMO, but if you pay the travel and hotel expenses, perhaps they would consider paying for the surgery. This may be naive, but if Dr. Lonner or Lenke writes to them saying that you really need this surgery, could that make a difference? Have they ever done this before? It may pay to travel for a consultation and pay out of pocket if there is a chance they will pay.

[rohrer01]

I don't have an HMO, but if you pay the travel and hotel expenses, perhaps they would consider paying for the surgery. This may be naive, but if Dr. Lonner or Lenke writes to them saying that you really need this surgery, could that make a difference? Have they ever done this before? It may pay to travel for a consultation and pay out of pocket if there is a chance they will pay.

I thought about that. Letters from doctor's who say I need the surgery would definitely influence the head of neurosurgery, who is calling all the insurance shots. "The Insurance Company" takes his word as final. He already thinks I need the surgery, so I don't think it would be hard to convince him. It's just I don't know if they (the insurance company) will pay out-of-state. I need to look into it. I have the feeling that the insurance company will just state that Dr. Tribus has already seen me and has the expertise to handle surgery and doesn't feel that I need it at this time and that will be the end of it. That's a big reason why I'm thinking about applying for SSI. I wish the insurance companies would just let you see whomever we want. I don't like not having a say over my own healthcare. If it came down to it. I suppose we could cancel the insurance and make $600/mo payments toward a loan for the surgery? It sounds like a BAD idea to me, but I'm desperate. I'm sure something will come up. I really do need a second and third opinion after what I found out today.

[jrnyc]

rohr...they should not be able to refuse a second opinion when insurance companies used to require 2nd opinions before they would OK surgery at all...
i dont understand the objections to out of state doctors...it is not as if the insurance pays hotel and travel expenses!! doesnt make sense, and so unfair!!

i dont have alot of money, but paid for at least 2 opinions cash out of pocket...it makes me feel better to know that other scoli surgeons with excellent reputations agree with the decision and the area to be fused!

jess

[rohrer01]

rohr...they should not be able to refuse a second opinion when insurance companies used to require 2nd opinions before they would OK surgery at all...
i dont understand the objections to out of state doctors...it is not as if the insurance pays hotel and travel expenses!! doesnt make sense, and so unfair!!

i dont have alot of money, but paid for at least 2 opinions cash out of pocket...it makes me feel better to know that other scoli surgeons with excellent reputations agree with the decision and the area to be fused!

jess

I just really need to think long and hard about who to go see. Travel expenses can really add up, and I don't travel so well, especially by car. I swell up in the ankles really bad. Flying just terrifies me, especially to NYC. I'm still looking and thinking. Dr. Lenke isn't really THAT far. He's in Missouri, right? But he doesn't advertise minimally invasive. I looked at the Mayo Website because they "advertise" for adults, but can't find anything for adults on the website. If I could go there, it's only a couple of hour drive. I've already been seen by a doc at Twin Cities Spine Center 12 years ago. The doctor wasn't very nice. I was in excruciating pain and he had an attitude like Dr. Tribus. He told me to take some Tylenol. What a joke. I understand no surgery then, I was only 41* and not progressing (only 2* since diagnosis).

I need to find someone who I will feel comfortable with. Even if surgery is NOT recommended, I want them to be able to tell me what next step to take, not just callously leave the room with NO advice. I don't know why I have always had such unempathetic doctors! It's the story of my life! Maybe it's the way I come across to them. It's not like I sit in the office and whine and complain. I just explain the situation. They just seem more interested at looking at the X-rays. Dr. Tribus didn't even examine me at all the last two times. The doctors usually put you in a gown and actually look at your curve in REAL life and how you can move and bend. He had his assistants do a quick lame exam. Barely even looked at my spine, and definitely not my bare back, which I think is important. I wear clothing that downplay my curves, so of course it doesn't look like much. But when you look without a shirt, it's a whole different story.

Anyway to make a short story long. I need my other opinions to be people I think I will feel comfortable with, no matter what they say surgically. Dr. Lonner appears to be on the same page. Too bad he has to be in NYC. That place frightens me. I have NEVER even wanted to visit there. A friend of the family has a sister that lives in New York State that isn't that far, I guess from the city. We almost went this month. The only reason I was excited is because my hubby was going to take me to Nantucket Island. Maybe we could still take that trip and just include a Dr. visit in with it.

[rohrer01]

Here's maybe a dumb question. Would I get a copy of my X-rays from Dr. Tribus on disk so they won't have to take any more, or will they want their own?

[foofer]

I brought a copy of my x-ray via disc taken from Oct 08 to Dr Boachie's office in Jan 09. He was unable to read the disc and kept it for awhile to have someone try to switch it to an appl they could read. It was sent back a few months later, but I don't think it was ever read. So you save the radiation but risk that their systems do not work in sync. The next time I went to Dr B, he took his own x-rays, and my curves were 8 degrees more per curve according to his measurements, in 10 months. He said it might be the difference between the system of measurement and not progression. We will find out next time I go in the fall.

[jrnyc]

hey rohr
i heard that dr lenke has a 10 month waiting list...i think you'd have to call now to get in sometime next year!
dr lonner is not as long a wait..he takes his own Xrays...
as a born and raised New Yorker, it is hard to understand why folks fear NYC...i guess it's the same reason that i'm scared of crickets n' country stuff!

jess

[Back-out]

corrections and/or updates on specs on surgeons mentioned

Dr. Lenke is about to assume presidency of the NSF as of Sept of this year. Because of how much this will add to his work load among other things, he is only accepting "the most extreme curves". E.g., my curve of 60 Deg (L) is considered too trivial per se. Yours, rohrer , would he "invisible" to him according to his present cut off!

As for Dr. Neuwirth's insurance, he does NOT accept MEDICARE unless he is following up a patient he treated on a prior insurance plan. I asked in mid March and that's what I heard. He had a few choice words for MEDICARE reimbursement, which objectively, I CAN understand but it is still disturbing.

I thought this was differently reported on this thread but perhaps it was a different one.

[jrnyc]

Wow...i saw Dr Neuwirth in Nov 09...he took my Medicare...at least the hospital did...i have another insurance...private...but they wanted to use my Medicare instead...which is strange, since i know their hospital (Beth Israel, where his office was) takes my other insurance!

i dont understand...is Dr Lenke going to become president ...of what...?? of the foundation? is that what NSF stands for...why would that prevent him from operating...and i think calling 60 degree curves trivial is ridiculous for ANYONE, doctor or not! maybe call them not severe enuf...but in no way in ANYONE's book are they trivial...ask any of the doctors operating on them!! furthermore, if ANY DOCTOR on this forum EVER referred to a 60 degree curve as trivial, i'd stop reading this forum!! i'm so impressed that he is only operating on "EXTREME" curves....Dr Boachie operates on "extreme" curves but he still operates on "trivial" ones like mine! far as i'm concerned, Dr Lenke is abandoning patients!

jess

[Back-out]

Maybe Dr. Neuwirth changed his mind, jess or else maybe he just wanted to encourage me to have my surgery before my insurance changes!

About Dr Lenke - neither he nor anyone there referred to my curve (which is lumbar besides) as "Trivial" . Rather they said it "wasn't extreme enough". I guess he is trying to reduce his patient load (now, especially) without refusing insurance plans like Dr. Boachie - and others - do.

Also, it's possible he is most interested in the added challenge of correcting extreme curves. Then too, with his expertise, maybe he feels he can make the most contribution in such cases (which many other doctors refuse). Lastly. the worse off the patent is, the more assured he can be of gratitude and making a positive improvement.

To put myself in his position!

As for why the presidency of the NSF (yes, THE foundation) should be time-consuming - ha, Just think! He is already heavily into academic research and paper writing, and such a leadership position is far from that of a figurehead. He'd have to fly to extra meetings and presentations all the time, especially while he's setting up shop. University heads and foundation presidencies involve a tremendous amount of organizational paperwork too, even with delegating and staff support.

I'm afraid the bottom line is that the Foundation's gain is the loss of his prospective patients for the nonce. Even HE has only 24 hours in the day.

A friend of mine who is a top doctor (and so are his sons - researchers and administrators, in addition to running a clinical practice), particularly warned me to be very wary about choosing a surgeon with a prestigious position. Many dedicated doctors avoid them because they are so demanding and limit their ability to "Be there" for their patients. My friend also warned me that often such honorifics are just that, and don't reflect greater expertise or clinical prowess.

It has been my experience (in the past, I've needed to search out highly skilled specialists in other areas) that it's definitely a mixed bag. Some doctors are expert self-promoters and that's the root of such dubious promotions. Others, though, are excellent physicians as well as holding a specialty office like this for a year.

Dr Lenke is certainly in the latter category, but that doesn't mean that he won't have to limit his clinical practice for the upcoming year! And face it, if he accepted all comers, he'd have a waiting list five years out! There has to be some triage - financial or by condition.

He sounds like a workaholic already, and I'm sure he will approach this position with the utmost dedication. His staff told me he might even have to cancel (Postpone, I assume) scheduled surgeries if he "got a call" - meaning something to do with the Foundation.

God forbid he should just keel over from over-work!

[Back-out]

BTW what 's most remarkable about Dr Lenke's being elected to this position, is his relative youth. They tend to go to Senior practitioners as a recognition of their contributions before they take their bow (kind of like the Academy Awards). There's a lot of politics involved. Dr Lenke is "only" 49.

[jrnyc]

i cant stand hearing about brilliant doctors.....if they abandon the "ordinary" patient...like me...and others...then they are of no use to me...and no use to many many others...let them go back to the lab or the think tanks...Dr Boachie operates on poor people in Africa...extreme, extreme curves...that is what i respect...Dr Lonner goes to Ghana and does the same.....that dedication is what i respect...
i dont even want to say here what i think of the change Dr Lenke will make...that is his choice...but i dont have to be impressed with it, or with the "extemity" of the curves he will now consider acceptable.

i see doctors like Boachie and Lonner operating on VERY extreme curves.....they are not abandoning patients...maybe they will go more into research or education when they are older or when their hands are no longer as steady......but for now, they continue to operate on their patients...check out their websites...so i Am Not Impressed with what Dr Lenke will do or refuse to do in the near future...

does every doctor who "accepts his bow" at the Foundation have to give up patients with curves that are "not acceptable" to them? people who are accepted for the surgery are in need of the surgery...surgeons make darn sure of that...as witness complaints on this forum...so i dont see how Dr Lenke would be accepting "all comers" if he continued accepting those "not extreme enough" curves like 60 degrees....

jess