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osumike
11-28-2011, 03:28 PM
I just made an appointment to see Dr. Boachie on Dec. 19. The lady told me he doesn't accept insurance? Or at least I think that's what she said. But she did ask me what kind of insurance I have? She also said the initial visit will cost between $450-500. That's cash upfront. Is this normal for seeing him? I think I remember hearing someone saying something about this, but not for sure...

mariaf
11-28-2011, 03:52 PM
Hi,

This seems to be the norm for the initial consult (I'm honestly surprised it isn't more because several years ago I was told it was about that much for the initial consult - so at least it hasn't gone up.)

I guess they wanted to know what insurance you had because they will bill them for any surgery (and I believe, they will bill the patient for whatever portion isn't covered - but please confirm this, if it applies to you, as I'm not 100% sure how it works for surgery). However, it seems to have always been that for the initial consult, you have to pay out of pocket.

Best of luck to you!!

jrnyc
11-28-2011, 04:07 PM
yes, that is normal....i saw him about 6 years ago...
i think i paid about $450 then...
i just wanted his opinion, as i knew he didn't take insurance...


if you are going to NYC for opinions, have you seen Dr Lonner or
Dr Neuwirth...they both take insurance....or Dr Errico?
there are other good ones as well....
i see that you live in Ohio...such a long way to come....
any chance you can schedule other surgeons for the same trip?
they take insurance, so if they take yours, it wouldn't cost you more...

jess

Singer
11-28-2011, 04:49 PM
Yes, that sounds about right for the first visit. He doesn't take insurance per se, but he will work with insurance companies. In my case, he accepted my insurance company's out-of-network payout. Even though I live in PA, I happen to have NY-based insurance because my husband's company is based in NY. If you're out of state, you may have to pay some cash upfront before surgery.

Dr. Boachie is of course excellent, but I agree with Jess that he's not the only game in town in NYC.

jrnyc
11-28-2011, 04:58 PM
my insurance forces me to go to their doctors only...
i cannot go out of network....
so it doesn't help me if a doctor is willing to work with the insurance
if he is not in network....
considering how much money it might cost you, why not try to get
consult appointments with top SRS surgeons who do take your insurance...
it is a long way to go for one surgeon...since there are other good ones in NYC!

jess

osumike
11-28-2011, 05:52 PM
Thanks for the replies...Yes I have thought about trying to see more than one guy on my trip out there. The only problem with that is I have seen several, well, four other surgeons, including Dr. Bridwell in St. Louis, who is considered a "top doctor." Apparently my situation is extremely severe and complicated, and will be very challenging to deal with. I went to Cincinnati last week and was told by that doc that if they wouldn't do it in St. Louis, then I need to go to San Francisco or NYC. I just dont want to waste anymore time or money than necessary.

jrnyc
11-28-2011, 07:13 PM
well, i would call a few top SRS surgeons in NYC, like Lonner, Neuwirth and Errico, to see which ones
take my insurance...then book at least one of them....
they are top...and if the other surgeon told you to go to NYC or CA, why not try NYC...
if they take your insurance, you are talking a $20 copay at most!
i think Boachie might be a problme for your insurance company for approval....
what if you come all that way and dont end up with a surgeon you can use....?
unless all you want is an opinion....
i flew to LA a few years ago, knowing he didnt take my insurance, just to see Anand...

have you thought of writing to John...he is super tall and his surgeon
just did a successful revision on him....

jess

mabeckoff
11-28-2011, 07:21 PM
My surgeon in Orange CA also does very complicated surgeries. If you are interested, I will send you his contact info

osumike
11-29-2011, 06:45 AM
OK, I'm going to try to make an appt with Dr. Neuwirth. Hopefully they can get me in at the time I'm out there...You're right, it definitely won't hurt to try to see as many as possible...

rohrer01
11-29-2011, 06:56 AM
Mike, you were the very first story I read about before joining the forum. I'm really sorry you haven't had this taken care of yet. If I remember correctly, you are in a lot of pain, right? Were they able to rule Marfan's in or out? If you have it, does that complicate the surgery, or is it just your size? Sorry for all the questions, I just haven't seen you on here for quite some time. I hope you can find a really good doctor soon. Take care!

LindaRacine
11-29-2011, 11:38 AM
Mike...

New York has no shortage of really good scoliosis specialists. If you can't get in to see Dr. Neuwirth when you want, you can try Frank Commisa Jr, Thomas Errico, Jean-Pierre Farcy, Christopher Hamill, Baron Lonner, or Frank Schwab. I've heard multiple good reviews on each of them.

Regards,
Linda

jrnyc
11-29-2011, 02:12 PM
i hope you can book an appointment with one or two of the good surgeons...
ones who takes your insurance....some of them are very booked....
maybe if you tell them you are flying in from so far away they could squeeze you
into their schedule....i do remember Dr Errico had this huge number of people
in his waiting room when i went there!
Dr Lonner and Dr Neuwirth were busy, but did not have as many people
waiting...
i think when Dr Errico was listed in New York Magazine as one of the best
orthopedic guys in NYC, it increased his patient load fast....
personally, all things being equal, i like Dr Lonner the most.....
just my personal opinion.....

good luck....
jess

JDM555
11-29-2011, 02:30 PM
have you thought of writing to John...he is super tall and his surgeon
just did a successful revision on him....

jess

Haha, I lol'd at this. I'd love to help you out Mike if you were coming out to CA, there are plenty of great surgeons I know up here in NorCal, same as Linda since...we both live up here, but SoCal also has some great surgeons as well. But if you go to NYC, the few that have been mentioned are great, and I was even planning to make a trip out, and Errico/Neuwirth/Lonner were the 3 I was going to see, the lady I called to "try" to schedule with Boachie said he doesn't do revisionals, and argued with me when I said I at least wanted his opinion, and she said he'll spend 30 seconds with you and refer you to someone else and then gave me another name of a surgeon in that facility who I guess, "does revisionals". So I was like OK, I guess I'm not wasting my time in NYC lol. Whatever you do, good luck and make sure you agree with your surgeon on the right course of treatment, don't just agree with what he says and jump into surgery cause the surgeon said so. Get the opinions from the other top 3 doctors please, and Boachie, and pick an idea and surgeon you feel comfortable with. Good luck man!

Mojo's Mom
11-29-2011, 04:01 PM
Mike, I remember your horror story about being cancelled by Bridwell at the 11th hour, and I remember reading about your various complications that make doing your surgery more challenging.

I wanted to share the comment my surgeon made when I mentioned your exact situation to him, as a way of asking if he has ever make an 11th hour decision like that with a patient. He commented that in his view Bridwell was getting more conservative and more selective in recent years, maybe because he is getting older and may not want to take the same kind of risks he would have, or take on the same challenges he might have, when he was a younger surgeon. I have no idea if this is an accurate assessment or not, but it would give me enough reason to think that there may be a number of the top guys who would want to take you on.

I agree that you should see as many of the NYC guys as you can if you are there anyway. Boachie does seem to be known for taking on really bad situations, the kind that get you in newspapers, but that doesn't mean he's the only one who would do your surgery. You may not be really all that challenging, just maybe something Dr. Bridwell sort of chickened out on. I don't mean that in a bad way to Dr. Bridwell, who is clearly brilliant and talented, but I can see where he might get more selective at a certain point, and want to do more surgeries with the most predictable outcomes. I have no idea how old he is, but he trained Lenke, and many of the others, and he's certainly no spring chicken anymore. And this kind of surgery is not only huge for the patients, it is also very physically demanding for the surgeons.

debbei
11-29-2011, 09:09 PM
OK, I'm going to try to make an appt with Dr. Neuwirth. Hopefully they can get me in at the time I'm out there...You're right, it definitely won't hurt to try to see as many as possible...

I am very happy with Dr. Neuwirth. As far as I know, he only has office hours on Thursdays. Let me know if you get an appointment!

ripley
12-02-2011, 09:33 PM
Hi Mike, I saw Dr. Boachie only a couple of months ago. I have seen 5 surgeons in NYC - all of whom are highly recommended on this forum. I would recommend any but Boachie. His bed side manner is non-existent - very cold. He saw me for maybe 10 minutes at most, did not listen, and even got information that I told him incorrect. He is the only surgeon that recommended a shorter fusion, which the other surgeons did not agree with. I left his office feeling very disheartened. He did not take my insurance either, I paid $450 (which was $100 higher than others who did not take my insurance). I was told he would "work with" my insurance before the appointment. At the end of my appointment that day, I was quickly dismissed by being told that my out of net work benefits would not come close to even consider it and was referred to someone else. Sorry - its hard to hear something bad about someone you were counting on, but I felt obligated to let you know - just my experience. I saw Dr. Bitan, Dr., Lonner, Dr. Neuwirth, and Dr. Errico. I really liked Dr. Errico and Dr. Neuwirth. I will be using Dr. Errico. Good luck to you in your search!

osumike
12-06-2011, 06:54 AM
I appreciate all your responses...Well so far I'm still only scheduled to see Dr. Boachie on Monday the 19th. I have called Dr. Neuwirth and Dr. Errico's office to try to schedule a visit around my trip to NYC. They both said they don't take my insurance(of course), and they weren't able to see me at the same time as Boachie. I think it was Neuwirth that said they could see me on Thursday the 22nd, but they wanted me to send my x-rays there for him to look at before they would schedule me. And Errico's office said she wanted me to contact my insurance before scheduling, or I could just plan on paying out of pocket. It's all about the money$$$. Driving to NYC and paying Boachie $500 cash and paying $300 for one night is going to be hard enough, staying there for another 3 days to see Dr. Neuwirth is out of the question right now. Maybe I'll see if I can reschedule Dr. Boachie for Wednesday or Thursday to cut down on cost.

Another thing, I just want to let you all know how great this forum is and everyones responses and concern is very much appreciated.

Ripley, after reading your post about Dr. Boachie I have this sick feeling that it'll be the same thing with me. Maybe that was an isolated incident. I hope I'm wrong, but it just sounds like he's only concerned about the money. Am I wrong? Why doesn't he take insurance? Is money more important than someones quality of life to him? If so, then why is he such a highly recommended surgeon? Being self employed, and having such a serious health condition, my scoliosis and marfan's, I can hardly even get insured, let alone a great plan. I don't know, like I said I hope I'm wrong about the way Dr. Boachie is being portrayed. After dealing with Bridwell all that time, I never had the feeling that it was about money with him. It was always like OK, you're here, it's a serious condition that needs attention, we'll worry about all that other stuff later. Then we all know how that turned out. Now I'm a bit worried about what will happen if Boachie tells me what he told you Ripley, and turns me away. I guess I'll deal with that if/ when it happens rather than get worked up about it now.

Have a great day everyone!

jrnyc
12-06-2011, 08:29 AM
hi Mike
did you try calling Dr Lonner's office....
i think i told you i liked him the most...and i saw the others you mentioned....

Linda Racine mentioned a couple of other surgeons you could try calling...i don't remember the names, but her
post is in this thread....

Dr Boachie does volunteer his services in Africa, where he is from....
i guess the charity does not extend to patients who come see him in his NYC office....

i hope you can get in to see someone else....i didn't realize you were driving and not flying....
hope yor back will be OK...that is a long drive...
i fear the Dr Boachie visit may be disappointing....unless you are just
interested in his opinion...

jess

Lorz
12-06-2011, 08:55 AM
Hi Mike,
Just wanted to offer my 2 cents: Dr. Boachie did my surgery in June. I understand how he may come off as cold and uncaring to some people. But, let me tell you, after speaking to many nurses at HSS, I got a whole new perspective. They all raved about how kind, compassionate, and generous he is. The nurse in preadmissions was best friends with the nurse who travels to Africa with him to do his pro bono surgeries, and they both said how great he is. Being a nurse myself, I know if you want to get a true opinion of a Dr., ask a nurse who works with him. I think the reason he comes off as cold is he is so busy that he focuses on the exam and x-rays in the first visit, to see if he can help you, because his time is so limited. I had the same reaction initially, until the nurses told me it isn't unusual for him to work all week, then travel all weekend in order to teach, because he says he wants to share his wealth of knowledge because he "can't take it with him". I am not trying to excuse how he made some people feel, but you have got to admire him for that.
I do not think money is an issue at all for him. I think people need to speak with him directly about insurance, and finances. Everyone is afraid to bring that up with the Dr., and just takes what ever info their staff gives them as gospel. Working in a Dr's office myself, I can tell you that is not the case. I would urge you to be upfront, and discuss it with him. Remember, HSS does accept insurance, so it is the surgeons fee that needs to be negotiated.
Also, someone here mentioned that he doesn't do revisions, but I am almost positive that he does. Good luck with your visit, and let us know how it goes.

Jacque's Mom
12-06-2011, 09:48 AM
I agree with Lori, he is a very compassionate man and have been his patient since 2002. He personally called me at home and left a voice mail when I was contemplating surgery in 2008 and had a few questions. Yes, he does revisions as I had mine done by him one year ago tomorrow and will see him Monday for my year follow-up. It's confusing when it's said he doesn't accept insurance. He does, but it depends what type you have and the plan you're in - if you can go out-of-network and what the insurance company will pay. Good luck and I wish you the best. LYNN

Mojo's Mom
12-06-2011, 09:14 PM
I have no personal experience with Boachie at all, but let me just say that it is obvious that the man is absolutely fearless as a surgeon, and he regularly takes on cases with deformities way more severe than most of our top surgeons will probably ever see, unless they are participating in his missions to Africa or other third world countries.

mariya
12-07-2011, 12:55 PM
Hi Mike,

I also plan to schedule an appt with Boachie, but, want to schedule it for after the holidays...

I have seen some of the top doctors mentioned in this forum, I am from NY so that makes it easier for me. However, I can not stop reading about Boachie and how highly his patients speak of him. I honestly can not wait to schedule an appt with him but on another hand I do know that I have to be prepared to make some tough decisions.

Like you, I do fear the same about how much time he spends with the patient and about the insurance situation. I am trying to make sure I have all my questions ready for the visit. I do have an insurance plan but I am still not sure how that would work since he is not accepting it. I hope to get a better understanding when I get to the hospital.

Hope it goes well on the 19th!!

Mariya

ripley
12-07-2011, 06:06 PM
Hi Mike, I didn't mean to scare you. I'm sure he is a good surgeon and if he takes your insurance then you shouldn't have a problem as long as you can look past his demeanor. Maybe if he actually does the surgery for you then perhaps his manner is different than what I saw. It was just my experience. I wish his office had told me beforehand that there was no way they would work with my insurance. I asked when making the appointment and when I got there but was not told until the very end after I saw the doctor. If you search this forum you will find other posts on Boachie. I remember someone else who had a similar experience, but I went ahead and saw Boachie anyway to find out for myself. Best of luck to you.

Singer
12-07-2011, 06:14 PM
When I went to see Dr. Boachie, I had no expectations besides the knowledge that he had a superb reputation. I found him to be quiet, reserved, and extremely focused. He doesn't do small-talk, and he's not a "warm-and-fuzzy" kind of guy. I did find him to be kind and attentive, though -- before surgery and while I was in the hospital afterwards.

He wasn't too great with follow-up, though. I had a few post-op issues that he didn't pay too much attention to even though they obviously bothered me a lot. Everything resolved in time and I suppose he suspected they would, but he didn't give me a lot of time at post-op visits.

As far as insurance goes, Lorz is exactly right -- his hospital (HSS) is insured and I was able to negotiate his surgical fee BUT I also had New York-based insurance and that made it much easier for his office to work with the insurance company.

For me, the bottom line is: If I ever need more surgery (pleeeeeease noooo!), I would go to him again in a heartbeat, or to someone who's trained with him. The man really knows what he's doing, and although I had a rough recovery, he did a fantastic job on my spine.

titaniumed
12-07-2011, 07:49 PM
Mike

I hate to throw a wrench in the gears....but you know that Pilar did not have insurance and was done by Dr Pashman in LA.

I agree that the costs are a bit much....nobody has ever said that having scoliosis is a cheap thing, I wish I had every dime I spent on pain control through the years.

I posted this since your insurance might be an issue....

Donít give up...at some point you will hook up with the right surgeon.
Ed

lisazena
12-07-2011, 08:27 PM
Mike,
I don't know if you asked Boachie's office if they would take your insurance after the first visit. I was going to see Dr. Boachie and I hear all wonderful things about him and would have liked to, but I was told that with my insurance (Blue Cross/Blue Shield Personal Choice) I would have to pay $100,000 if I have surgery. I believe the problem is that I have PA, not NY insurance. And my policy is a great one and works for Errico and for Lonner. Good luck to you. I just thought I would share this info.
Lisa

Leigh
12-26-2011, 05:44 AM
OK, I'm a little late, as usual. Looks like you had your appointment on Dec 19 with Dr. Boachie, but perhaps someone else might be helped by this information? I met with Dr. Boachie through the pediatric scoliosis clinic that sees patients (regardless of whether you are a pedi or an adulti;)) starting at 7AM every Wednesday morning (check that--they do move around the schedules) at the Hospital for Special Surgery here in NYC. Mind you, that was 2005, but I doubt HSS has abandoned their clinic system, given they're a teaching hospital, and it's how the residents and fellows develop expertise in the specialties under the tutelage of the experienced attending physicians, such as Dr. Boachie. My insurance paid for everything because I received services via the clinic. Dr. Boachie volunteers at the clinic every other week.

Dr. Boachie, himself, was wonderful, but his post-professional fellow, Dr. B******, whose actual name I can't recall except that it started with "B" (like "Brenner" or something? "Bummer"?!) was obnoxious. I met with Dr. Boachie and several residents initially, then I went to have extensive diagnostics (xrays, MRI, CT/myelo -- the whole shebang), and met with Dr. Bummer on follow up. He didn't have any of my films, no notes, just a big ego and a big mouth. I was surprised he was so self-involved that it made no impression on him when I told him I was studying to go into medicine. After our formal appointment, I asked him how I might go about observing surgery? So then he asks: "Why, are you going into medicine?" Duh! But he was quite sure to tell me he went to Yale. (Two thumbs down for that school.)

This young Dr. Bummer was quite callous in his dismissal of my physical limitations and pain, to such an extent that I was emotionally devastated. He said he had checked his opinions with Dr. Boachie and Dr. Boachie agreed. Or so Bummer claimed. If it weren't such a sensitive issue for me, my spine, I would have requested to meet with Dr. Boachie himself on follow up, and requested that all my records be at hand. As I recall, I did make two follow up appointments at the clinic to meet with Dr. Boachie, but I didn't have the heart to follow through, I'd felt so smacked down, left out in the cold. Granted, it is clear to see at the clinic that Dr. Boachie and his colleagues deal with much worse cases of deformity and discomfort than mine, but as every surgeon should have branded on his brain, each and every patient deserves all due consideration and respect.

Which is all by way of saying, the clinic will provide access to the top attending surgeons such as Dr. Boachie in a fashion that insurance will cover, but in that setting you will have to be somewhat proactive about making sure you do indeed meet with the physician of your choice, not just the student doctors. I'm sure HSS is not the only hospital that affords access to top docs by way of a clinic setting. (Oh, and do be polite and deferential when needling the administrative and nursing staff, they are overwhelmed by the crowds that show up for the clinic, and I found that sweetness and humor went a long way to getting exactly what I wanted--that is, bumped to the head of the line:))

jrnyc
12-26-2011, 09:02 AM
going to any clinic is a crap shoot that you will not meet with the head honcho...

after the clinic, what does that mean for surgery??....how will going to the clinic insure having surgery with
Dr Boachie??...or did youj just go there to get his opinion???

when i met with Boachie at his office about 5-6 years ago, i found him to lack a bedside manner, but he
was professional and fairly quick in his assessmwent...he agreed with what other surgeons i had seen
recommeneded....i paid cash for the visit, as he didnt take my insurance...by now i think he doesn't
take any insurance....

jess

Lilysaidwhat
12-29-2011, 09:39 PM
My experience was the same as Ripley's with Boachie. And I paid the cash out of pocket $450 a year ago tomorrow! Ah, memories. I think the best part was the nurse who looked somewhat put out by my tears while saying, "You didn't know you needed surgery?" as if I was an idiot (I had scheduled my appt to discuss pain management options).

Dr Grauer at Yale was amazing, and after secondary insurance, I paid $74.28 for my entire surgery. The hospital handled insurance for me so I didn't have to deal with that on top of everything else.

mariaf
12-30-2011, 06:22 AM
Just wanted to offer my 2 cents: Dr. Boachie did my surgery in June. I understand how he may come off as cold and uncaring to some people. But, let me tell you, after speaking to many nurses at HSS, I got a whole new perspective. They all raved about how kind, compassionate, and generous he is. The nurse in preadmissions was best friends with the nurse who travels to Africa with him to do his pro bono surgeries, and they both said how great he is.

Not sure if it's just me, but I can't get past the fact that over and over again I hear how wonderful this man is when it comes to the work he does in Africa - and how cold he and his staff come off here at home.

Since Boachie's name came up so much, I had contacted his office several years ago when my son was first diagnosed, and got that same response on the phone. I called as a worried parent very new to it all, and the first thing the woman said to me was 'you know he doesnt' take insurance so you will have to pay for the consult out of your pocket'. I can't recall the exact dollar amount but it was several hundred dollars. There was a distinct difference between her attidude vs. a couple of other doctor's offices I had called - she was very abrupt and cold - as if she couldn't get me off the phone fast enough and had no interest whatsoever in what I was saying.

I've now been dealing witht the folks at Shriners Hospital for the past 8 or so years - they take children from Iraq who have lost limbs in land mines and fit them for prosthetics - and of course they treat lots of kids right here in the U.S. - but they treat them all the same, from the first contact you have with the staff right up to the visit with the doctors, they are compassionate and caring. (And of course they don't charge for their services so as Lily said, it's wonderful not to have to worry about finances on top of everything else). And you'll never hear only how wonderful they are with one group of patients...so I find the whole Boachie thing very odd, almost as if he makes his money off U.S. patients to finance his work abroad (I'm sure that's probably not the case, but I'd be lying if I said it hasn't crossed my mind).

Just my take on things......

LindaRacine
12-30-2011, 01:32 PM
I've known Dr. Boachie for years. He has been nothing but kind and gracious around me. His policies are what they are, so that he can donate a large amount of his time (and his income) to help the people of under serviced areas such as Ghana.

Working in a clinic has given me some insight into the workings. New patient coordinators are bombarded with a huge number of phone calls and emails every day. To get to the people who are best served by a surgical clinic, I assume that a number of shortcuts are taken to weed out those who aren't appropriate. (For example, in our clinic, patients with back pain, who have not been diagnosed and/or referred by a physician, are generally turned away.) In Dr. Boachie's case, since he does not accept insurance reimbursement, it makes sense to let callers know immediately, that they have that policy. In other words, there is no sense in spending a lot of time qualifying patients, if they're not able or willing to comply with the clinic policies.

I am not trying to defend these people or their policies, but am offering a possible explanation of why it happens. It would be wonderful if all the doctors, nurses, coordinators, and assistants were able to take all the time each patient needs, but the reality is that, the better the surgeon, the higher the demand for their time, and the time of their support staff.

--Linda

jrnyc
12-30-2011, 02:38 PM
i agree with you, Maria...
how much more time does it take to be kind than to be rude...?
i am sure Shriners is super busy as well...yet they seem to be able to
convey information in a concerned and caring manner...
i see no excuse for abrupt and curt treatment by any doctor's staff...
uncalled for...maybe Boachie has the wrong people working for him in his
front office....
especially when people contacting his office are probably upset to begin with....
perhaps Dr Boachie is not aware of the attitude of his staff?

and i do understand why it has crossed your mind, Maria....
there are lots of poor people here in the states, people who can't afford surgery
i understand that a doctor has the right to do charity work where ever he/she
chooses, with explanation to no one....
but that doesn't mean one cannot wonder about it...

jess

mabeckoff
12-30-2011, 03:17 PM
i agree with you, Maria...
how much more time does it take to be kind than to be rude...?
i am sure Shriners is super busy as well...yet they seem to be able to
convey information in a concerned and caring manner...
i see no excuse for abrupt and curt treatment by any doctor's staff...
uncalled for...maybe Boachie has the wrong people working for him in his
front office....
especially when people contacting his office are probably upset to begin with....
perhaps Dr Boachie is not aware of the attitude of his staff?

and i do understand why it has crossed your mind, Maria....
there are lots of poor people here in the states, people who can't afford surgery
i understand that a doctor has the right to do charity work where ever he/she
chooses, with explanation to no one....
but that doesn't mean one cannot wonder about it...

jess

I agree with you Jess totally.

mariaf
12-30-2011, 04:12 PM
i agree with you, Maria...
how much more time does it take to be kind than to be rude...?
i am sure Shriners is super busy as well...yet they seem to be able to
convey information in a concerned and caring manner...jess

I doubt that many offices field more calls and e-mails than a place like Shriners (in particular the one in Philly, due to their reputation) - I agree with what Linda said about 'the better the surgeon, the higher the demand for their time' and yet guys like Dr. Betz always make patients feel important, never rushed, etc. And his staff likewise. Take, for instance, Janet Cerrone (the PA to the spine team in Philly) - she gets hundreds of calls and e-mails, often from distraught parents who may not even be thinking straight at the time - and without fail, I hear the same thing from parents after they talk with Janet on the phone - that she put them at ease immediately, and was extremely patient, kind and compassionate - regarless of how many other calls she had to return after talking to them.

I respect those here who admire Dr. Boachie - they are entitled to their opinion - just as I stand behind mine. It just doesn't make sense to me that there's any need to be rude or abrupt ESPECIALLY when one is so giving and compassionate outside of this country......either you are caring with your patients or you aren't.

Karen Ocker
12-30-2011, 06:03 PM
Because insurance companies pay a fixed amount for procedures many physicians have opted not to participate in order to maintain their own staff benefits/insurance. This is also true for Medicare. The reimbursements that would pay a decent amount to a surgeon have been cut to fatten CEO salaries and satisfy shareholders. Insurance companies are "for profit". The patient suffers. This means lesser trained, cheaper practitioners(nurses aides/medical assistants). It used to be a doctor's office had RNs (Dr. B's office still has RNs.)
I almost got the wrong vaccine, at my primary's office, because the MA(medical assistant) took out the wrong vaccine(I needed the one against shingles and already had the one for pneumonia). I checked the vial myself-it was the wrong one. She actually blew the mistake off! I wrote to my doctor and she was fired. Lesser trained personnel are much cheaper. Interns and residents are also cheaper.

In past years the insurance company would pay the non-participating physician a higher out-of-network fee than to the participating doctor.Lately, insurance companies have been getting more and more restrictive. This is the sad state of affairs. In my case, nine years ago, Dr. B took the out of network benefit which apparently was adequate. So don't blame the doctor.

How the information is conveyed to a prospective patient is another matter.

I have found the same with other non-scoliosis docs. I used a non-participating breast center these past years and my service was excellent and seamless. My friend went to participating doc and was running all over the place with biopsies and x-rays.

jrnyc
12-30-2011, 06:33 PM
i don't think anyone is blaming doctors for whatever fees they want to take
or not take...i go to some doctors who have opted out of taking any
insurance once they have become well enough off/popular enough to afford
to do so...
if taking insurance contributes to a doctor's staff being rude and abrupt,
maybe that doctor SHOULD opt out of insurance....it seems like a rotten excuse
for a lack of manners!

jess

rohrer01
12-30-2011, 10:30 PM
Aside from all this debate about Dr. B's policies, How did your visit go? You were scheduled earlier this month, right? I hope everything is okay.

mariaf
12-31-2011, 11:39 AM
i don't think anyone is blaming doctors for whatever fees they want to take
or not take...i go to some doctors who have opted out of taking any
insurance once they have become well enough off/popular enough to afford
to do so...
if taking insurance contributes to a doctor's staff being rude and abrupt,
maybe that doctor SHOULD opt out of insurance....it seems like a rotten excuse
for a lack of manners!

jess

Agreed, Jess. Nobody is saying doctors shouldn't be paid, or even paid well for their expertise.

But I fail to see what it has to do with having compassion - or a lack thereof - when dealing with patients. Not that I necessarily agree with it, but one could say that the more the doctor is being paid, the more his staff might try to go out of their way to be nice.

Bottom line, as you say, is that there really is no excuse for lack of manners. It's something I hope I have taught my kids already and certainly something that someone in a position where they are dealing with serious issues should have learned a long time ago.

loves to skate
12-31-2011, 12:47 PM
Agreed, Jess. Nobody is saying doctors shouldn't be paid, or even paid well for their expertise.

But I fail to see what it has to do with having compassion - or a lack thereof - when dealing with patients. Not that I necessarily agree with it, but one could say that the more the doctor is being paid, the more his staff might try to go out of their way to be nice.

Bottom line, as you say, is that there really is no excuse for lack of manners. It's something I hope I have taught my kids already and certainly something that someone in a position where they are dealing with serious issues should have learned a long time ago.

Amen to that Maria. Not everyone has the innate ability to be compassionate toward patients, but it can be taught. The hospital where I worked as a Medical Technologist had classes on just this subject. Patients are clients and we are here to serve them. Even angry patients or angry family members. There are ways to defuse most angry situations and there are ways to treat even the meekest of patients. From this class, I also learned how to apply this when I became a patient myself dealing with tired overworked nurses and aides. It is how we would like to be treated ourselves. Dr. Boachie needs to train his people or find someone who can do it for him. Maybe the people who have been the object of rudeness need to write a letter or email to him so that he knows how they are being treated by the front office. Hopefully he cares enough to do something about it.

mariaf
01-01-2012, 11:48 AM
Wow, that's great that they actually trained folks in how to handle patients compassionately. I agree that, while compassion may come naturally to some, for others it can be taught, at least as far as how to speak to patients (what to say, what not to say, etc.). I wonder how common this practice of training personnel on this topic is? IMHO it should be part of the training for these types of positions all the time.

osumike
01-03-2012, 05:52 PM
WOW! This became quite the hot topic eh? I haven't been on here since I got back from NY. Well my experience with DR. Boachie and his entire office staff was great. No issues at all. Whoever said he doesn't have much small talk is right, but I really got a good vibe. He seemed genuinely interested and concerned with my issues. There were even a couple other people that peeked their heads in the exam room door just to ask me about Dr. Bridwell, and about what happened out there.

Well, they measured my height at 6'6", it wasn't that long ago that I was 6'9". My thoracic curve is now at 80 degrees, lumbar 60. A year and a half ago in St. Louis I was told they were both around 66 degrees. I wasn't aware of any kyphosis, but I'm looking at the office notes that say "the thoracic kyphosis is 16*. He has a 22* T10-L2 thoracolumbar kyphosis with 43* lumbar lordosis. Coronal imbalance is 4.2 cm and sagittal malalignment is 10.3 cm." Now I've heard those terms used on this forum but never about my spine. So he said he would definitely do the surgery, and it would include fusion fron T2 or T3 to sacrum, with thorocoplasty. That's totally different than what was going to be done in St. Louis. Their plan was lumbar only.

So after the meeting with Dr. Boachie I met with a couple other people, the first one took $450 cash for the appointment, the other was the billing department. That was the interesting part. She basically came right out and said my insurance company would deny the surgery, and I'd have to fight with them. It's either that or I need to figure out how to come up with about $100,000 cash to cover Dr. Boachies fee. She said when the insurance company denies it, they'll type a letter outlining exactly what needs done to send to them and it kind of sounded like I'd be on my own from there. Being self employed, it's hard to get health insurance, let alone a great policy due to me having this pre-existing condition. The lady also told me that only about 1 in 10 people get approved for this surgery from their insurance company. Wow.

So if and when my insurance company says no, I have no idea where to go from there. I saw my family doctor the other day and his suggestion was to get an attorney and sue my insurance co. Anyone ever hear of doing that? I mean I'm running out of options here. The first four surgeons I've seen have said they either won't or can't do my surgery. Hopefully something will work out with Dr. Boachie. I really liked him.

On another subject, I decided to drive myself into the city to the hospital for my appt...are there even any traffic laws in NYC???! That was crazy! We stayed in a hotel in New Jersey and the GPS said it would take 12 minutes to get there...an hour and 45 minutes later I was signing in at Dr. B's office...Good thing we left early enough!

jrnyc
01-03-2012, 06:01 PM
hi Mike
welcome home!

ahhh...NYC traffic...quite the initiation, wasn't it...NEVER assume any time frame to get from
one street to the next....whatever you expect, multiply by 20, ESPECIALLY during holiday
season!!!

glad you got a good vibe, but i expected the problem you hit to happen exactly that way,
as you once mentioned on forum that you were self employed and your insurance wasn't
the greatest....

just a warning....insurance companies have lawyers 24/7...
private patients don't....the insurance people can usually wait out we
"ordinary" people until we run out of money for legal fees! the insurance companies,
obviously, do not run out of money!!!!
i would be really careful about approaching it with a lawyer...maybe consult
with a lawyer and ask them what your chances are and how long he/she thinks
the lawsuit would take....you could give the story to the news media for
sympathy, but that someitmes works and sometimes doesn't work....

the only thing next i can think of is finding a surgeon who takes your insurance....
to go into deep debt for a surgery is risky....might not even be possible to do...

hope you find the answers...
jess

rohrer01
01-07-2012, 12:13 AM
Hello, Mike. Linda Racine posted a thread on having trouble with insurance denials. It's one of the sticky threads in blue. Apparently there is a group out there that helps people with this. I think it might not hurt for you to take a look at the thread and the website posted. I'm so sorry to hear about the financial woes part of this whole ordeal. I totally understand! Now, if you were 15 years old you wouldn't have any problems at all getting help. It's just once we become adults that the help stops. Everyone feels sorry for a child with problems, but they forget that those children grow up! It's an aggrivating subject to me. Yes, I feel sorry for the kids, too, and would probably help a child myself before I would help an adult. I think it's just inborn in us to favor children. But not fair for those children that grow up and never got the help. I'm rambling because I'm tired. The whole pre-existing condition thing is very hard to get past. Insurance companies are in the money making business, so if they even think that they MIGHT lose money on a person, they don't want to insure them. It's too bad you can't get on some group policy somehow. I'm only able to have insurance because of my husband's job. I'm totally uninsurable, so I'm really surprised you found an insurance company at all, as my condition is nowhere near as bad as yours. I truly hope you can figure something out and I'm glad you found a doc willing to take you on. From what I've read about Boachie, he seems to like a real challenge rather than being afraid of one. Best wishes.

osumike
01-24-2012, 11:18 AM
Just wanted to let anyone who cares know that I'm sitting in the waiting room at Dr. Dewald's office in Chicago. I made this appointment a few weeks before I set up the meeting with Dr. Boachie. I originally was going to cancel this one but figured it wouldn't hurt to get another opinion. After all, Dr. Dewald was one of the doctors that the people in St. Louis suggested I see. Its very busy here, theres alot of people in the waiting room. I got here at 10:00, my appt was for 10:30, and now its already 11:15. Well I know theres a few of you who have used Dewalds services, I'd like to hear about your experiences. Ok, the battery on my tablet is about to die so I'll update this later...Have a great day!

rohrer01
01-24-2012, 03:51 PM
We care! Let us know how it goes! I've heard of a good doc in Chicago, but I haven't heard of this one, not saying he's not top-notch. I just don't know all of the good docs out there. I'm curious to see who you like better, since you really seemed to like Boachie a LOT. Take Care!

Susie*Bee
01-24-2012, 05:05 PM
Until recently, he and Dr. Hammerberg were partners... then they joined up with the rest of the ortho group at Rush, and now Dr. Hammerberg left to work solely with Shriner's. Dr. H was my surgeon, so now I see Dr. DeWald. I've only seen him once, but he seems nice and concerned. Since I'm "post-op", he's just keeping tabs on me. Dr. H and I played the odds on whether to fuse to L4 or go all the way, so we have to keep our eye on those lower lumbars.

Sometime last year someone on the forum posted a link that listed a ranking by some source (???) of surgeons, and I remember that Dr. DeWald was listed at #8. I don't remember what that was in. You would be in good hands with him. Rush Medical Center Hospital is also ranked #8 by US News and World Report, so it's an excellent hospital. My experience there was good. The nursing staff was very attentive as well. BTW, Dr. DeWald's father was also a renowned scoli surgeon.

Best wishes with whomever you decide to go with. :)

osumike
01-25-2012, 04:17 PM
well I hate to say meeting with any doctor is a waste of time, but this trip to Chicago sure seems like it. I was glad to see how nice, clean, organized, and on top of things the facility and staff was, but it pretty much ended there. I'm struggling to find the words to describe how this meeting went, so maybe I'll just type out exactly how it was. When the doc came in he wanted me to stand up and bend over so he could see my back of course, then he wanted to know exactly where it hurt and how much. I'm telling him my ribs hurt, my lower back, pain down both legs, up and down my spine, etc, etc, etc. I couldn't help but get the feeling that he almost didn't believe that I'm in pain. I'm telling you, it was such a weird meeting. He kept saying things like "so you're telling me it hurts there?", "but not there?", "are you sure it hurts there?" Now, on my right side, my rib cage basically rests on my hip, and when I said I have pain in that area, he kept jamming his finger between my ribs and hip saying "does that hurt" "are you sure?" over and over. I really still just can't believe how this was going. The tone of his voice was like he didn't believe me or something. So after that he was looking at my xrays and MRI and things. Now, remember just a month ago Dr. Boachie said he thought he would would do a fusion from about T-3 or 4 to sacrum. Dr. Dewald basically said he wouldn't try for ANY correction, that he would want to pin-point where my pain was coming from, and work on fixing that nerve or nerves, and be done with it. He was saying things that I never heard from any surgeon I have met with. I hate to say this but the way he was talking about Dr. Bridwell(and we all know how I fared with him), was kind of like he idolized him. I got the impression that he thought if Bridwell couldn't come up with a way to do this, then he wasn't even going to try either. I feel like the way I'm describing this is all over the place, but I'm trying....Dewald and his fellow were looking at xrays and I heard him make a comment about a certain measurement, the fellow said something like "Boachie measured it at (such and such)", and Dewald just said OK, I didn't get that but I'll just put that down too. I dont know, maybe I'm saying too much, but early on in this consultation I decided I probably wouldn't be coming back here. This sounds really weird, but I felt like after we told him about what happened in St. Louis and the things Dr. Bridwell said, it seemed like Dr. Dewald was just saying EXACTLY what I just told him Dr. Bridwell said. Like I said, this is hard to put into words, but the whole meeting was just surreal.

rohrer01
01-25-2012, 05:26 PM
Sorry, Mike.
It really does sound like your trip to Chicago was a waste of time. I think I can pretty much guess who's going to be doing your surgery when you get your funds together. I hate appointments like that!

mabeckoff
01-25-2012, 05:37 PM
I am sorry that your Chicago appt went so poorly. I wish you better luck going forward

jrnyc
01-25-2012, 09:11 PM
hey Mike
i am so sorry you went thru this...
and please....trust your gut...
when it felt weird with this doctor, it was for a reason....
he either doesn't know ENOUGH, doesn't understand scoliosis well enough,
is "star struck" with Bridwell, and is of no possible use to you!
i'm sorry to say, it does sound like this trip was definitely a waste of time...
then again, if you hadn't gone, you wouldn't know that this doctor is useless...
it really stinks that you had to waste the time and the money to find this out!
what really surprises me is that this doctor is in Chicago....
i would assume, being from New York, that the big cities have the better, more
knowledgeable doctors....just goes to show there is an exception to every rule!
and really, just about any pain management doctor could address "nerve" stuff....
he certainly doesn't seem like a surgeon who would do whatever it takes to help you!

where does this leave you?...are there other surgeons for you to check
out, who take your insurance and are good in their field...??
i hope there are others you can consult with...
i worry that you suffer with so much pain and aren't finding the help
you need within insurance that you have....

how was this doctor rated number 8 on a list of doctors???

jess

JenniferG
01-25-2012, 11:03 PM
I tend to agree with Jess' assessment. Including the star-struck bit. I wouldn't feel comfortable with this doctor. Sorry it's so hard to find a good, accessible doctor.

Susie*Bee
01-26-2012, 04:19 PM
Sorry to hear your appt. was definitely sour. Again, though, I believe he is a highly respected, published, and experienced scoli surgeon. Sorry he did not live up to his reputation with you. Regardless, it looks like you're headed on, so best wishes.

osumike
02-13-2012, 03:26 PM
I finally called Dr. Boachie's office today to see where we're at with getting approved for surgery. First she told me she thought she already sent out paperwork to me, then said she'd call me back within a day or two. She called back an hour later and said she swears she already called me about this(which she hadn't), but my insurance company will hardly cover even 10% of the cost of surgery. Its a no go. I asked her what direction I go from here, and I was told to find someone that will accept my insurance. So unless someone will basically work for pennies on the dollar, I think I'm SOL. I guess by no means was this a surprise at all, I fully expected for this to happen.

debbei
02-13-2012, 03:42 PM
Awh Mike, I am so sorry to hear this. Are any of the other surgeons who you recently seen still in the running? I don't know that most other doctors are quite as highly priced as Dr. Boachie. Did you ever see any others in NY?

osumike
02-13-2012, 03:56 PM
No I didn't see any others in New York. I still need to talk to my ins. co. but I can't imagine they'll pay any more than that to ANY surgeon...Again, I'm self employed, so having this pre-existing condition prevents me from getting major medical insurance. I think its time to think about finding another job SOLELY for the health insurance alone...I'm not really sure what other option I have...someone mentioned something about maybe having to sue my insurance company for not covering the surgery I need....ever heard of someone doing that??

LindaRacine
02-13-2012, 04:48 PM
Wow, is that possibly the reason Dr. Bridwell turned you down? It makes sense, as they can't be expected to perform surgery at a huge financial loss.

After working for myself for many years, I finally had to stop being self-employed for just this reason. For me, it led to good things. Hope the same happens for you.

--Linda

lisazena
02-13-2012, 05:36 PM
Hi Mike,
Don't lose heart. I have really good insurance and I called Boachie and was told that I would have to pay $100,000 as I am in Pennsylvania, out of state and he doesn't take my plan. I visited Lonner and for my insurance, and Ericco and most of the surgery was going to be covered for both, even though I am out of network for Lonner. So you can't judge your insurance on the basis of Boachie.

I hope it works out for you.
Lisa

mariaf
02-14-2012, 07:51 AM
Hi Mike,
Don't lose heart. I have really good insurance and I called Boachie and was told that I would have to pay $100,000 as I am in Pennsylvania, out of state and he doesn't take my plan. I visited Lonner and for my insurance, and Ericco and most of the surgery was going to be covered for both, even though I am out of network for Lonner. So you can't judge your insurance on the basis of Boachie.

I hope it works out for you.
Lisa

Mike,

I agree with Lisa that you might want to try one or two more docs before assuming that you will get the same reaction (what have you got to lose, right?)

I remember one time my cousin took her son to see a specialist (not for scoli) - she wanted this guy because he was the best and she was willing (and somewhat able) to pay a good deal out of pocket, but after sitting down and meeting with her and her son, the guy wrote off most of what the insurance didn't cover - so I'm just saying, you never know until you try - and Boachie does seem to operate differently than most when it comes to insurance/payment.

Best of luck - I am pulling for you!

loves to skate
02-14-2012, 06:23 PM
Mike,
My Doctor, Dr. Rand in Boston, takes Medicare and Medicaid patients and Medicare paid him only $15,000.00 for my surgery which isn't a whole lot in the overall scheme of things. Why not google him and some other top docs and ask if they would accept your insurance. Do you know how much your insurance will actually pay? It is at least worth some phone calls. Good luck!
Sally

osumike
07-24-2012, 08:19 AM
Long time no talk! There's not much new news from me, but I finally got an answer from my "insurance company." Actually what I have is a limited benefits plan, and it is VERY limited. So Dr. Boachies office sent a letter to myself and the ins. co. stating the surgical procedures needed and all costs associated. The total amount was estimated at a little over $88,000. That's just the surgeons fee, not including hospital stay or anesthesiologist and whatever else. Long story short, my insurance company says they'll pay around $6,700 toward that $88,000. Its a joke. I contacted the state of Ohio dept. of insurance, and they directed me to a list of company's offering open enrollment. Basically by law, these company's have to take a certain number of people regardless of pre existing conditions, but the rates are much much higher. It's doable, about $550 a month for me. Of course I'd have to wait 12 months for them to cover anything regarding my spine, but it is what it is. I also looked into Ohio's high risk pool, which is more affordable, any it seems the benefits are very similar. I'm wondering if any of you have any experience with either one of these options? It's time I really start trying to get this surgery done again. I've been hurting a bit more lately, and feeling pretty twisted up. I know things are continuing to get worse, I can feel my right rib cage resting on my hip more and more. Kind of feels like a grinder in there. I can see it progressing when I look in the mirror, which I try to do only if necessary. Linda, I saw you posted a link to a patient advocacy group, and I just called them 20 minutes ago but had to leave a message. Maybe they can help. It's so discouraging, knowing how my spine is, and without a pile of money, nobody really cares to help. I've been having a harder time standing up straight, the pain gets really bad. I was taking 10mg percoset, 30mg morphine, and 10mg methadone, with a muscle relaxer. Now I'm off the methadone, but still on the others. I really want to get off these pills, but I know it's not only going to be hard to do, but I know I need them for pain. The withdrawl coming off the methadone was a little rough, it's a little scary thinking about stopping the others. Anyway, I know I'm rambling a little here, just wanted to get some thoughts out.

Have a good day!

rohrer01
07-24-2012, 11:49 AM
Hi, Mike.
I've been following your story since I joined the forum. In fact, yours was the first one I read before I decided to join. I couldn't help but feel your pain. My curve is obviously not as bad as yours by a long shot. It is painful, however. I have periods of relatively little pain and periods of very intense pain. I've also been on very strong meds. At it's worst, I was on fentanyl, percocet, muscle relaxant, and a benzo. I don't want to be a drug addict, so I completely understand your desire to get rid of these meds. Often, I'm faced with the choice, meds or pain. I go off the meds for awhile or wean down to a lower level and then the pain drives me back onto the meds. It's quite frustrating. I woke up this morning without much pain, so I thought, "Why take a painkiller if I'm not in pain?" So I didn't. I usually have to take percocet just to be able to get out of bed. But this morning was much, much better so I didn't. I've been on this stupid drug for about three years straight now. Some days I would take maybe two pills and other days I'd need five or six pills. On average, I take three or four. I haven't increased my dose or asked my doctor to increase it, even though he tries to get me back on fentanyl when I have bad flare-ups. I've declined the last couple of times and managed through. Well back to this morning. By nine o'clock I was having chest pain and starting to sweat profusely on my arms and legs. I was finding it difficult to breathe comfortably and that "sick" feeling of withdrawal was setting in pretty hard. I waited until 10 o'clock when my benzo and heart medicine were due (I'm also weaning off the benzo) and took a percocet along with my other meds. I don't know if it was lack of narcotic or the fact that I'm weaning off the benzo. It felt like both. So, yes, it's awful to get off these drugs. I've done it too many times to count. I can't justify staying on them to feel normal when my pain is minimal. The key is to do it gradually. It sounds like you are at a point where you still need them. Unfortunately, as I'm sure you know, the longer you are on them, the less they actually help with the pain. It would be nice to have a non-addictive drug that your body wouldn't build a tolerance to. But, unfortunately, they don't. Not one that works on that severe pain anyway.

I guess the reason I'm writing this to you is because it sounds like you are in a LOT of pain. Try not to feel guilty about needing the meds. I feel guilty, too. My doctor said that because I feel that way, he's not as worried that I will become addicted. There's a difference between psychological addiction and chemical dependence. We can't help the fact that our bodies adjust to the meds. We WILL go through a withdrawal period. That doesn't mean we are drug addicts simply by the fact we are willing to go through that in order to get off of the stuff. Wean off of them when you are better after your surgery. It's going to be rough, since you've been on them for so long. But if you reduce them gradually, and it can take a long time, it is much easier. You are also a very large man, so what may seem like a huge dose to some is probably not that much to you. Size matters when it comes to dosing meds. So don't base how you feel about your dose on what you hear other people are taking. You are probably at least twice the size as many of us.

I hope you can get some help through the patient advocacy group. It's frustrating that help is so readily available for kids, but not for adults. Those kids grow up, and once we do, if we didn't have the surgery and find ourselves progressing, we are pretty much stuck in the mud. I've had roadblocks, too. I hope you can get the help you NEED and I wish you all the best!

osumike
08-28-2016, 08:32 PM
Hey everyone.. I haven't been in these forums for quite a while, mostly because nothing had changed with me. Until a week ago. A little over two years ago I had an opportunity to expand our company, and open an office in Wisconsin. Switching doctors was a little rough, I had to go without any pain meds for about a week, not long after I moved out here. But with the health care laws that have been enacted, I was finally able to get major medical insurance coverage. I met with a surgeon a little over a year ago, was told he didn't feel it was the right time for surgery. His reasoning was basically because I was still able to do so much, even with pain, I should wait. In the meantime, he wanted me to see a cardiologist, and get genetic testing to determine if I had Marfans syndrome. Genetic testing came back negative, and my heart is in pretty good shape, other than a very slightly enlarged aorta.

A month or so ago my pain level started getting worse, to the point I started missing work. I made another appointment with that surgeon I saw, that was last Thursday. It's FINALLY going to happen. We discussed a plan, what to expect, everything. I literally cried in that room when he walked out. He's still working out his exact plan of attack, and I should know more in a month or so. I'm going to call and schedule a date for surgery tomorrow morning. I'm hoping for mid November.

The doc is Clifford Tribus in Madison WI. I'm pretty sure I remember seeing his name on here a time or two in the past. One thing that surprised me a bit, is that he wants me in an in- patient therapy center for six weeks post-op. I'll be using a tilt table while I'm in there. Said some of his colleagues think that's a little overkill, but it makes sense.

I'll certainly have a lot more details soon... And I think I forgot how great this forum is..

Pooka1
08-28-2016, 08:46 PM
Holy cow it is really old home week here! You are the second person who signed back on after several years.

Welcome back!

I just wanted to mention that last I knew (several years ago), there is about a 10% false negative rate on the Marfans test. Ten percent of people have Marfans but test negative on that test. Pretty darn high in my mind. That is why I never got my twins tested although they show some skeletal features though they have no aortic enlargement or the lens problems. Because there is a 10% false negative, we can never stop monitoring their aortas even if they test negative. If they tested positive they we can never stop monitoring their aortas. Same course of action with both test results. So there was absolutely no reason to test my twins.

Maybe the test has gotten better.

Glad you are getting help. Good luck with everything.

titaniumed
08-29-2016, 07:53 AM
Welcome back Mike!

Your curves are getting large now....sure would like to see your x-rays, your so big, I guess I will have to buy a large monitor. (smiley face)

Iím wondering about the tilt table? What did he say about this?

It might not be a bad idea to start a new thread since your story has evolved into a new chapter.

Ed

osumike
08-29-2016, 08:27 AM
It might not be a bad idea to start a new thread since your story has evolved into a new chapter.

Ed

Definitely, will do soon......