Page 2 of 2 FirstFirst 12
Results 16 to 20 of 20

Thread: Trying to understand surgery costs...

  1. #16
    Join Date
    Oct 2009
    Location
    PA
    Posts
    749
    Snoopy, I think the difference is that your children are affected and you are driving on their behalf. Indeed when mine were young I took them - the first anyhow - to doctors in NYC when special problems arose. I myself went to NYC or to the centers you mentioned when a) I was younger (and my scoliosis wasn't as bad) or b) someone drove me.

    Now, though, I live alone and am unable to drive for more than an hour because of severe back pain. Even being a passenger is hard. And if I fly or take a bus (or train) - it's very difficult (and expensive!) to get around. I use a walker. Even changing trains is impossible without a companion and who can afford that?

    Even the nearest train station is almost an hour away - an unmanned station with only one train daily departing and one returning . That means for a single appointment, I have to pay for two nights in a hotel and countless tips to maneuver at all - plus many cabs and, of course, hours of uncomfortable traveling to get there and return (public transportation is much slower than car).

    I have a number of friends who perished because they relied on our sub-standard local hospital and our (mostly) sub-standard physicians. That was because they couldn't travel easily to a major medical center - even those with helpful extended families!

    You are in a more privileged position and it also sounds like you are a lot further East than me!
    Last edited by Back-out; 04-27-2010 at 04:44 AM.

  2. #17
    Join Date
    Oct 2009
    Location
    PA
    Posts
    749
    Chris WBS,

    Thanks again for you specific input about your recovery and what you needed. I do indeed have a helpful sister in law (if I catch her between jobs) and she has offered. I'm more concerned about what I'll do after three months if something goes wrong - especially if I've gone to a distant surgeon.

    Thing is, they're ALL distant from me, not only in mileage but in actual transportation time as a) I can't drive that far b) I never mastered city driving and don't think that would be the time to try!

  3. #18
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Quote Originally Posted by Back-out View Post
    Snoopy, I think the difference is that your children are affected and you are driving on their behalf. Indeed when mine were young I took them - the first anyhow - to doctors in NYC when special problems arose. I myself went to NYC or to the centers you mentioned when a) I was younger (and my scoliosis wasn't as bad) or b) someone drove me.

    I totally diagree with that! Yes, my daughter was treated as a teenager, but that has nothing to do with where my thoughts are coming from. My daughter and I run a Scoliosis support group and we've helped several people in a similar situation to yours.


    Even the nearest train station is almost an hour away - an unmanned station with only one train daily departing and one returning . That means for a single appointment, I have to pay for two nights in a hotel and countless tips to maneuver at all - plus many cabs and, of course, hours of uncomfortable traveling to get there and return (public transportation is much slower than car).
    There has to be a better way. You just have to keep searching and talking to people to find that "better" way.

    I have a number of friends who perished because they relied on our sub-standard local hospital and our (mostly) sub-standard physicians. That was because they couldn't travel easily to a major medical center - even those with helpful extended families!

    May I ask if any of these people you are talking about had Scoliosis surgery? What hospitals are you talking about? Who were the doctors? I know an 80+ woman who recently had corrective surgery for Scoliosis in a Central PA hospital and a Central PA surgeon and she is doing very well! Not all doctors/hospitals in our area are bad; just a few like everywhere else.

    You are in a more privileged position and it also sounds like you are a lot further East than me!
    "More privileged position"? Again, what area are you in, maybe we can help you find that perfect doctor and/or hospital for you.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  4. #19
    Join Date
    Oct 2009
    Location
    PA
    Posts
    749
    I hope you received my multi-part PM, Mary Lou. Naturally, I don't want to precisely identify (publicly) the name of my town or (by extension) our hospital. I'm sure you'll respect that confidence on the public board. It's basically a "small town" here and easy to identify people, even online. I don't want to embarrass anyone in my family or myself.

    As I said in my PM, I've lived here since 1981 - of necessity, owing to unfortunate family circumstances (much a function of health issues), and raised two special needs kids alone. I consider myself knowledgeable and ingenious. We would not be alive today otherwise. That is mostly a function of my medical background, acquired both in school and self-taught. I am not an MD, but by relying on my own research, I protected all three of us more than onc - rejecting incorrect diagnoses and treatment recommendations which would have killed us. The memories are still raw.

    As for knowing our County resources, I was co-director for many years of our (parents of) ADD kids support group and - whew! I had to know the Blue Pages - and more - by heart!

    If there were a "better way" to get around - of course, we are talking reality finances - I assure you, I would have found it. Not just for myself but for others.

    People with far more fallback in every way than I, have perished here, as I said. That was by trusting incompetent local doctors and accepting sub-par treatment in our local hospital. I urged several of them to seek out of town expertise (they could have afforded it and made the journeys with minimal effort, compared to me) but they lacked confidence. Ironically, several ended their lives life-flighted to Hershey or elsewhere, when it was much too late to make a difference.

    Don't forget that being essentially marooned in an under-served area, means being multiply restricted. Most complex medical problems involve protracted stays at Medical Centers, many trips to and fro for treatment and/or numerous consults to compare surgeons or diagnosticians.

    That prospect is daunting even to those to whom a single trip might be doable. It was heart-breaking to see them die - usually of cancer. Missed diagnoses. Nasty oncologists. Second-rate treatment protocols. (And I am not a social queen bee who knows that many people locally!)

    As for the many from outlying areas or living marginal existences in our relatively affluent town, they don't even have the choice to seek better services. They die from treatable illnesses l as if they were in a Third World country (which rural America increasingly resembles), too abashed even to know their rights.

    No, none of them had anything to do with scoliosis treatment or care. For one thing, the nearest scoliosis doctor, to the best of my knowledge is at Hershey - several hours away (again, by car). As of a few years ago, anyhow. When my son needed to have a slight curve checked, that's where he had to go.

    No one with any wherewithal or medical sense, would have a complex operation in town. It is revealing that all the dentists and doctors I know, go far away for even simple fusions - that includes orthopedists! They operate on others here, but when the need arises, away they go!

    When I said you were "in a more privileged position" (relative to the issue of access to centers of medical excellence), I wasn't being snarky. I was only referring shorthand to many facts, your post indicated directly and by inference. Compared to me, you are much younger and healthier. This is especially relevant to your ability to drive long - to me - distances. I cannot. Even as a passenger, it's difficult for me, as indicated.

    I don't know your finances but, without elaborating, it would be hard to be in worse straits than I am now. My sons' health problems cost me much of my savings at the same time that they prevented me from working.

    Most of all, health is wealth. It is very costly to be ill. FWIW I have other health problems besides my spine All require medical expertise unavailable within a radius of well over a hundred miles - at least. Some much more. By car. By public transportation, it's twice the time and money as driving, not counting hotels and cabs. Flying is almost the same as bus or train, all things considered.

    Being disabled (hate that term, but I guess I'd better get used to it ) is very expensive. Few rich people could afford the amount of help I need, even now. Things don't get done. I waste a lot of time chasing small savings. As for the future, it does not bear comfortable contemplation.

    Lastly, you are blessed to have more social support. Even if you can only count somewhat on your nearly adult daughters (at least one of whom is cooperative and mature enough to help with your support group) - that's a lot! Meanwhile, my sons are still struggling, despite my best efforts.

    It speaks well of you that you are trying to help scoliosis sufferers as you mentioned, and I appreciate your good intentions. I am only puzzled why you seemed to take umbrage over introvertible facts about a community whose name and location, you didn't even know before my PM. How could you be acquainted with its limitations, medically and geographically? Much less my situation. You literally didn't know where I was coming from!

    But then again, people can get their hackles up over anything. That must be why I'm writing at such length, over my own offended sensitivity. Dumb of me! Help and good wishes are always appreciated. Magic wand solutions are not, least of all the (felt) suggestion that I haven't been waving mine hard enough! I'll try anything I can afford and many I can't. My magic wand (I have one!) is broken. So is my back.

    This is a lovely area. As far as I know, so is most of the state of Pennsylvania. But this town will kill me if I don't get out soon, because of the poor quality of care available within an easy - for me - drive. While I can drive! If I lived in a city like New York or near a major medical center, my life expectancy would be twenty years longer. And that's just the way it is. Not because I haven't tried or don't know the ropes!
    Last edited by Back-out; 04-29-2010 at 05:09 AM.

  5. #20
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Back-out
    Registered User Join Date: Oct 2009
    Posts: 67

    I hope you received my multi-part PM, Mary Lou. Naturally, I don't want to precisely identify (publicly) the name of my town or (by extension) our hospital. I'm sure you'll respect that confidence on the public board. It's basically a "small town" here and easy to identify people, even online. I don't want to embarrass anyone in my family or myself.

    I did receive all of your private messages. And of course, I would never mention the name of your town on a public forum. I know the are you are talking about. And yes, it is a long drive to Hershey or any of the other hospitals I've menioned. As for treatment of Scoliosis in children, they are usually sent to Hershey because Hershey has the pediatric orthopedic surgeons these kids need.

    As I said in my PM, I've lived here since 1981 - of necessity, owing to unfortunate family circumstances (much a function of health issues), and raised two special needs kids alone. I consider myself knowledgeable and ingenious. We would not be alive today otherwise. That is mostly a function of my medical background, acquired both in school and self-taught. I am not an MD, but by relying on my own research, I protected all three of us more than onc - rejecting incorrect diagnoses and treatment recommendations which would have killed us. The memories are still raw.
    It is a shame that we have to be so self-taught about medical issues. Sometimes, though it is the only way to protect ourselves and our loved ones. I'm glad to hear that you fight for what you know is right. As parents it is our job to do what's best for our kids.

    As for knowing our County resources, I was co-director for many years of our (parents of) ADD kids support group and - whew! I had to know the Blue Pages - and more - by heart!
    Okay, so let's get some of those same resources to work for you. Someone, somewhere has to be able to help you get the care you need.


    People with far more fallback in every way than I, have perished here, as I said. That was by trusting incompetent local doctors and accepting sub-par treatment in our local hospital. I urged several of them to seek out of town expertise (they could have afforded it and made the journeys with minimal effort, compared to me) but they lacked confidence. Ironically, several ended their lives life-flighted to Hershey or elsewhere, when it was much too late to make a difference.

    You can't let other's decisions affect your way of thinking. You know you need to go outside your town to get the care you need and hopefully we'll find a way to make that happen. Some people just trust their doctors and never question what they say. That's sad. I've always questioned whatever didn't feel right to me. I once took Jamie for a follow-up visit to the ortho and the nurse said she needed x-rays. I told her I didn't want her x-rayed because she just had x-rays two weeks ago and she hadn't worn her back brace enough to make a difference, so no x-rays. She told me I couldn't do that and I told her I could do that. She then said she had to ask the doctor's permission and I said fine, but she is still my child and I have a right to say no. She said in all the years she worked as a nurse, she never had anyone refuse anything she said needed to be done. How sad. The doctor totally agreed with me and she didn't have x-rays that weren't needed.

    I understand having people die at Hershey would leave a bad taste in your mouth.


    It was heart-breaking to see them die - usually of cancer. Missed diagnoses. Nasty oncologists. Second-rate treatment protocols. (And I am not a social queen bee who knows that many people locally!)

    No need to tell me how heartbreaking it is to watch someone die from cancer-missed diagnoses or not.Tuesday was the 2 month anniversary of my dad's cancer-related death. Tuesday also came the news that my mom is losing her battle with cancer and now has "a few months to a year to live". I know how that works--my dad was given 6 months to a year and was gone 11 days after his doctor told him that.


    No one with any wherewithal or medical sense, would have a complex operation in town. It is revealing that all the dentists and doctors I know, go far away for even simple fusions - that includes orthopedists! They operate on others here, but when the need arises, away they go!

    Sounds like you have no choice but to travel elsewhere. We just need to figure out how to get you there. Have you contacted any of the doctor office mentioned on this forum? You might be surprised to find out that if you tell them your story, they might be able to help you in some way or another to make everything happen. You'd still have the long travel and discomfort, but at least you'd be seen by a reliable doctor or two.

    When I said you were "in a more privileged position" (relative to the issue of access to centers of medical excellence), I wasn't being snarky. I was only referring shorthand to many facts, your post indicated directly and by inference. Compared to me, you are much younger and healthier. This is especially relevant to your ability to drive long - to me - distances. I cannot. Even as a passenger, it's difficult for me, as indicated.

    Not trying to make a fuss here, but you know nothing about me. You don't know how old I am or what health concerns I might have. You only see that I do whatever it takes for my child to get the best care possible--no matter what.

    I don't know your finances but, without elaborating, it would be hard to be in worse straits than I am now. My sons' health problems cost me much of my savings at the same time that they prevented me from working.

    Are your sons eligible for Social Security Disabilitybecause of their health concerns? If so, that would provide some income to ease your financial trouble and they would also get health coverage. Have you checked into SSD for yourself since you are unable to work?

    Most of all, health is wealth.

    I agree. Most people don't value their health until they don't have it.


    Being disabled (hate that term, but I guess I'd better get used to it ) is very expensive. Few rich people could afford the amount of help I need, even now. Things don't get done. I waste a lot of time chasing small savings. As for the future, it does not bear comfortable contemplation.

    I already mentioned SSD. That would afford you some of the help you need. Have you checked into Hospice? Most people think that Hospice is only for people who are dying of cancer. You'd be surprised what you might learn. If they can't help you directly, they could recommend places that could help you.


    It speaks well of you that you are trying to help scoliosis sufferers as you mentioned, and I appreciate your good intentions. I am only puzzled why you seemed to take umbrage over introvertible facts about a community whose name and location, you didn't even know before my PM. How could you be acquainted with its limitations, medically and geographically? Much less my situation. You literally didn't know where I was coming from!

    That's the problem. You mentioned repeatedly that you had to travel elsewhere for treatment, but you never left anyone know more details! I never claimed to know your town's limitations, medically or geographically. I think if you've read this far, you know that I have a good idea where you are coming from. You've only heard a very small portion of my life. I'm sure you've figured out by now that I've been dealing with the health care system for some time and have had to figure my way around it many,many times.

    But then again, people can get their hackles up over anything. That must be why I'm writing at such length, over my own offended sensitivity. Dumb of me! Help and good wishes are always appreciated. Magic wand solutions are not, least of all the (felt) suggestion that I haven't been waving mine hard enough! I'll try anything I can afford and many I can't. My magic wand (I have one!) is broken. So is my back.

    If you find that magic wand, please get one for me. I could use one. LOL No, I didn't imply that you weren't waving your magic wand hard enough. I just truely believe that there has to be someone somewhere to help you and I'm trying to do that.

    This is a lovely area. As far as I know, so is most of the state of Pennsylvania. But this town will kill me if I don't get out soon, because of the poor quality of care available within an easy - for me - drive. While I can drive! If I lived in a city like New York or near a major medical center, my life expectancy would be twenty years longer. And that's just the way it is. Not because I haven't tried or don't know the ropes!

    I think between our posts, we both can come to the conclusion that 1) you aren't one who sits around and waits for help to come to you; 2) I'm not questioning you or your choices; 3) our health care in PA sucks; 4) we need to agree to disagree on some things; and 5) that boht of us have had to do a lot of fighting and self-educating (medically) to get to where we are today.

    I'm sorry if I offended you in any way. I'm here to try to help.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •