Re: Thursday appointment

[Guest guest]

Hi Diane VDW,

It is usual that xrays as old as these might have been destroyed long

ago....however it is often possible to get old copies of your patient

file and operative reports. It isn't critical that you have them but

it might be worth going back to your original surgeons office, or

whoever continued the practice if he retired, and see if they are

around. By no means can you not proceed without them....but from here

on forward it is probably going to be useful to ask for copies of

whatever reports are created from office visits and the specialists

that review xrays or other imaging. They are yours and you have the

right to have them. There shouldn't be anything in there that you are

not aware of. If it is terminology that you don't understand then you

will then have the ability to do your own learning and research until

you do understand what the doctors are saying.

With regard to your PCP visit, I guess it depends on what your

relationship is with him and how he wants to be involved in the next

step. If he is supportive of wanting to see you referred on, then I

would strongly recommend you make sure he has your whole history with

regard to your earlier scoli surgery, and I would present him with

either print outs or web addresses for well regarded medical

information on flatback (also known as fixed sagittal imbalance). One

of the easiest places to find solid information is at Spine Universe,

a site written and maintained by doctors who specialize in all things

spine. Here is one link to start with....and at the bottom of each

page you can continue on with additional related topics:

http://www.spineuniverse.com/displayarticle.php/article3321.html

If you go to our group " links " you can also find a listing of research

related to our condition and if you read through some of those you may

find a few that you might like to print and bring with you.

Interestingly, just this week NPR had as a topic the internet and

medical information and how there is an emerging shift in doctors

understanding that their patients are more and more likely to find

information, as well as potential diagnosis, on the internet....and

this is changing the doctor patient dynamic. If your doctor sees you

as an educated partner and will follow your information and lead, then

you are probably well advised to explain what you think is going on

and why. I would also to lay out your wish to be referred to a top

specialist for evaluation. If your doctor happens to be the type that

hates well educated patients, you may have to tread more lightly, but

I would still insist that there is plenty of reliable information out

there that suggests that patients who have has long fusions suffer a

number of problems related to accelerated degenerative disc changes

above and below fusions, undetected areas on non-union(fusion), if not

outright flatback. Tell him that you will provide him with all the

research abstracts necessary for him to support his referral if

needed...and then just let us know what you need....its readily

avialable if you know where/how to search.

Lastly, I would write my key questions and points down. Exams tend to

go very quickly and you may find that you drift off track without a

list. I would also suggest that it might be helpful to bring a spouse

or other support person in to the exam to help you if you feel you

will need emotional support in advocating for yourself.

Take Care, Cam

[Guest guest]

Dear Cam,

Thanks so much for the advice. I am going to do as much of what you said

as I can before Thursday. I have been on SpineUniverse's website. I am

starting to become familiar with words like Stenosis, Flatback, &

Degenerative Disc. I'm also starting to understand some of the surgical

procedures. I don't really feel like I will be armed well enough for

talking with my doctor, so I printed a bunch of the articles to show her.

(It is actually not my PCP, but one of his staff since he is an ob/gyn,

and she is more capable on other topics, I guess). In the past they have

been very supportive of my needs. I am hopeful that she also has done a

little bit of research on the topic before I get there.

To me it sounds like I have the Lubar Spinal Stenosis, but I haven't had

x-rays, cat scans, or MRIs. My pain usually begins to one side of the

lower spine and the begins to spread across and down my hip. It

sometimes reaches around the other side and also goes up the spine. It's

like it all radiates from that spot...every time it is the same. Then it

goes away...only now it is no longer going away, it is just a nagging

dull pain that makes me want to do everything very gently.

I will have to try to get the surgical records you talked about. I

didn't have very much cooperation when I was looking into finding the

x-rays, so hopefully this goes better. I will definitely keep all

records for the future. My PCP office was very understanding in that

they asked me to bring any information I was finding and any specialist

recommendations with me. I had a hard time getting past the

receptionist/scheduler at the place I called with a specialist I found a

few hours from here that dealt with scoliosis, aging spine, etc.

The idea about taking notes along and perhaps a friend/spouse was a great

idea. With my husband working overtime I may need to ask my close friend

who is a physical therapist to go along.

Thanks again for the encouragement.

Diane VDW

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[Guest guest]

Hello,It might help to have the name of the Orthopedic Doctor you would like your primary care physician to refer you to. Find someone in your area with "Fusion Experience". I find when I do the work for the Doctor and TELL him what I want... not ask him what he thinks I should do, I can get to the professional quicker. Many Doctors are too busy to look up special issue patients like us and they don't know all the specialists available. I was on the mend when I saw my primary care physician, but I had 5 episodes in 4 months, I knew something wasn't right. Luckily, I have a history with my Doctor, so he knows when I come in I'm not just whinny. Good luck,-Dyann DiamondAtlantaFrom: Diane VanDerWerff <sdvdw@...> Sent: Saturday, December 6, 2008 3:36:48 AMSubject: [ ] Thursday appointment

Hi everyone,

I have been so grateful for all of the information and encouragement

I am getting from this group. Thank you.

This week Thursday I have an appointment with my primary care

physician since my insurance requires this as a starting point. I

have called around and there are no x-ray records on file for my

Harrington Rod & Fusion or my original condition. Aside from

describing my pain, what are some other things I should ask or tell

my doctor? Should I mention possibilities of what I've heard it

could be (i.e. flatback, rod damage)?

I'm actually in minimal pain right now compared to what I have when

I'm in a full-blown "episode." I still know I need to do something

since the pain didn't completely go away this time (it used to last a

couple of weeks and then I'd be good for a time until I moved wrong

again...half the time now I don't even know what move I've done to

set it off).

Again, thanks for all the support.

Diane VDW

Michigan

[Guest guest]

Diane,

Its too bad that you were all geared up for this appointment...and it

cancelled. Did they reschedule you already or are they waiting to see

when your doc returns to work?

I know you know that its not critical to get your old records...but

if you get the idea that they are still there and available, then I

would just gently persevere. It will be nice to have a complete

record in your hot little hands.

The whole process can be a bit overwhelming, but I am glad to hear

you are just taking that nice slow approach to getting your ducks in

a row and eventually you will find yourself in a position of being

able to understand exactly what the complexities of your case are,

and being able to actually understand the differences you may get in

your opinions. After I finally got in to see Rand, he was thorough,

but basically told me that I wasn't ready for surgery and that I

should spend time educating myself about my condition.

At the time, I really didn't " get " what he was saying, or what his

point was. I was actually a bit annoyed. In retrospect it was exactly

right to tell me that I needed to delve more deeply into all that

surgery would entail, the options, the timing...my

career...everything.

I also realized that a year later, when my pain was considerably

greater and my world was much smaller, that it was really time to

accept the coming surgery, recovery, life disruption, risks....all

that is necessary to begin the huge challenge that surgery is. It

took time to get there...and it seems that we all know where " there "

is....once we have arrived. Right doctor, right life circumstances,

right health, right insurance. As I said before, rarely is this

emergency surgery...and we are all well advised to take our time

about any decision if its not.

It is interesting that you had this particular conversaton with the

gentleman at the store about his wife's scoliosis. It is good to feel

that your circumstances have a point of reference, even if its not

exactly the same set of circumstances. I think almost all of us were

told by our original HR surgeons that not having surgery would mean

wheelchairs for us later in life. Looking back on the office and

surgery records from my original surgeon, even he mentions that my

case was borderline....and this was while he was telling my parents I

faced the crushing of internal organs and wheelchair scenario. Lucky

for me I got about 33 painfree years out of my first go...but

still...I am haunted by the idea that I might have been better served

by waiting and seeing how things developed in to my 20's. Sigh. I

will never know.

Anyway, let us know when you get your next appt. Also...who were the

docs in Michigan you were given?

Take Care, Cam

[Guest guest]

Hi Cam,

I am already rescheduled for Dec. 23. I could have gotten in next week, but I am playing keyboard for a Christmas program at our church and had a 3 hour dress rehearsal the night they wanted to make the appointment. My nerves aren't the best, so I didn't want to make things too busy or too exhausting, so I scheduled for the week after the concert.

As for the records, I had a more positive experience with my phone call to the records dept. today. I was able to download a form from their website which I will send in tomorrow. I asked for all records for the time period I figure I was pre-op through my Jr. year in college since that's when I think he gave me the "you're good to go for life" speech. They said there was a charge per copy, but my husband said to just have them do everything they have so that we have it all. I am actually looking forward to checking out the records since as a 14 year old I paid no attention to any of the details (i.e. which vertebrae were involved). I only know that at one point I was told I had only 3 working vertebrae at the bottom.

I hear you on the right time of life stuff...I just don't think a surgery will every really fit into my lifestyle unless I make it happen. At this point I do have 5 homeschooled kids and surgery could make getting their schoolwork ready a challenge...but at the same time I'd have 2 or 3 of the older ones around to help me with everything and to help take care of me. My parents are in the area, and at this point they are still young enough to get around and help out if they're needed. I really don't think I want to wait to have surgery if it is inevitable...the pain is pretty persistent now, even if it is not as intense as it was during November. I know I sound impatient...mostly it's because I am a wimp and can't stand the pain...yes, I know the surgery is painful, too, but hopefully on the other end of it I'd feel better.

I suppose I really just need to wait and see what testing shows is wrong with my back...hopefully something fixable and not just "pulled ligaments" like I was told all those years ago.

Dr. Bridwell's office recommended Kasten, Stan Lee, and Russo. I crossed Russo off the list due to a friend's son's experience with him. Dr. Lee trained under Dr. Bridwell. Kasten and Lee were both listed on the Scoliosis Research Society's website, but I had earlier tried calling Kasten's office and got tired of talking to schedulers who couldn't tell me whether the dr. dealt with Harrington Rod patients, and condescendingly told me that I would not be able to come to them without a referral anyway. I didn't tell her my Primary Care Physician was asking for my input on who I'd like to be referred to. I will have to see what insurance allows in the number of opinions I'm allowed. We will probably check with them both if we can. I am leaning toward Lee, since he trained under Bridwell even though he's a little bit further away. In fact, if I knew insurance would allow it, I'd go to Bridwell.

Thanks for the encouragement.

Diane VDW

Diane,Its too bad that you were all geared up for this appointment...and it cancelled. Did they reschedule you already or are they waiting to see when your doc returns to work?I know you know that its not critical to get your old records...but if you get the idea that they are still there and available, then I would just gently persevere. It will be nice to have a complete record in your hot little hands.The whole process can be a bit overwhelming, but I am glad to hear you are just taking that nice slow approach to getting your ducks in a row and eventually you will find yourself in a position of being able to understand exactly what the complexities of your case are, and being able to actually understand the differences you may get in your opinions. After I finally got in to see Rand, he was thorough, but basically told me that I wasn't ready for surgery and that I should spend time educating myself about my condition. At the time, I really didn't "get" what he was saying, or what his point was. I was actually a bit annoyed. In retrospect it was exactly right to tell me that I needed to delve more deeply into all that surgery would entail, the options, the timing...my career...everything.I also realized that a year later, when my pain was considerably greater and my world was much smaller, that it was really time to accept the coming surgery, recovery, life disruption, risks....all that is necessary to begin the huge challenge that surgery is. It took time to get there...and it seems that we all know where "there" is....once we have arrived. Right doctor, right life circumstances, right health, right insurance. As I said before, rarely is this emergency surgery...and we are all well advised to take our time about any decision if its not.It is interesting that you had this particular conversaton with the gentleman at the store about his wife's scoliosis. It is good to feel that your circumstances have a point of reference, even if its not exactly the same set of circumstances. I think almost all of us were told by our original HR surgeons that not having surgery would mean wheelchairs for us later in life. Looking back on the office and surgery records from my original surgeon, even he mentions that my case was borderline....and this was while he was telling my parents I faced the crushing of internal organs and wheelchair scenario. Lucky for me I got about 33 painfree years out of my first go...but still...I am haunted by the idea that I might have been better served by waiting and seeing how things developed in to my 20's. Sigh. I will never know.Anyway, let us know when you get your next appt. Also...who were the docs in Michigan you were given?Take Care, Cam

____________________________________________________________

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[Guest guest]

Hi again, Cam,

I just got a call from my Primary Care Physician's office. She'll be in

on Monday, so they moved up my appointment. Earlier in the week was

better for me because of the concert at the end of the week. So I am

glad I don't have to wait to go until right before Christmas.

Later,

Diane

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[Guest guest]

Hi Diane,

FWIW, if you use the search feature on the group and search " Lee " you

can find a few posts from various members who saw DrLee. Without going

back and being very thorough myself, I think most everyone that saw him

moved on to another doctor. It may be a variety of reasons....but it

might be worth considering that if you are going to have to fight

insurance to see soomeone else like Lenke or Bridwell or the Chicago

team of Ondra and Koski...maybe you are better off justing getting it

over with....you know?

I hope some of the folks that have seen Lee will chime in...but I know

if you write them directly they will probably be happy to fill you in a

little bit on the " front side " .

Please let us know how things go after the 23rd.

Take Care, Cam

[Guest guest]

Thank you, Cam,

I did read some of the posts. I am so glad I did. There's nothing like experience!

I made a copy of your letter for my PCP, so we'll see what she says. When I called the insurance company early on it sounded like they will occasionally make exceptions for out of state surgeries...hopefully! But I'm getting the cart before the horse...perhaps there are other ways to manage the pain than surgery.

My appointment got moved up to tomorrow. I will let you know how it goes. Thanks again for your help.

Blessings,

Diane

Hi Diane,FWIW, if you use the search feature on the group and search "Lee" you can find a few posts from various members who saw DrLee. Without going back and being very thorough myself, I think most everyone that saw him moved on to another doctor. It may be a variety of reasons....but it might be worth considering that if you are going to have to fight insurance to see soomeone else like Lenke or Bridwell or the Chicago team of Ondra and Koski...maybe you are better off justing getting it over with....you know?I hope some of the folks that have seen Lee will chime in...but I know if you write them directly they will probably be happy to fill you in a little bit on the "front side".Please let us know how things go after the 23rd.Take Care, Cam

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[Guest guest]

Diane,

Good, let us know how you do tomorrow.

If you mean you copied the document in the files that I posted, I

should say that those were questions for my consults with

surgeons....I don't think your PCP will be able to do much with them.

One reason I shared them here was to show people the level of

questioning I went through in my consults.

Both DrBoachie and Rand, patiently sat down and spent at least 30

minutes going over them. The good thing about having a framework to

ask questions, if you are seeing more than one doctor, is that you

will cover the same material, so when, and if, it comes to deciding

about anything, you are not comparing apples and oranges.

Writing out any problem, for me, is very helpful...it helps me to

follow a thought or idea to a conclusion. Even if this is not

ordinarily something that you do, I highly recommend you do it, not

necessarily before your PCP visit, although that would be a useful

exercise too probably, but before you travel any lengthy distance to

see a specialist.

Without a " roadmap " a consult can go by too fast, and it is easy to

leave with uncovered questions. I always recommend you also find out

what the preferred method of asking follow up questions is....becasue

without a doubt, the minute youleave the office, even if you are well

prepared, new questions will arise!

And yes, the search feature on the group is often overlooked by new

members. If you are having a dreary, snowy day....I recommend

spending some time going back through posts. The year prior to

surgery I believe I managed to read internet postings by just about

every person who had ever undergone revision surgery. It was

particularly helpful to identify patient who had surgery with my

potential surgeons and contact them " off line " for more information

since, in many cases, they no longer were participating regularly.

Also, this group has been around for more than 4 years....and I know

that as an " oldie " sometimes I feel like I have said the same thing

so many times that I have a hard time dedicating myself to another

long post on a subject I have written about. I am not complaining

mind you, just saying that I know there is a lot of information in

our archives...but you have to dig for it. Maybe someday I will

figure out a way to extract the wisdom of the group into an easier

format.

is free...and with all things free, there are some

limitations. It can be difficult to go backwards, although since it

is possible to follow a thread you can usually do a little better

looking at pld convertaions...although I guarantee that you will find

out how often people dont change the subject responding to a post,

thus taking thread way off course!

Good luck with your PCP.

Take Care, Cam

[Guest guest]

Thanks, Cam,

I just meant I copied the e-mail you sent me 12/13 that mentioned many people had moved on from Dr. Lee, and then you listed Lenke, Bridwell, Ondra, and Koski. I figured my PCP is very down to earth and will understand why Dr. Lee might not be the choice for me, while an out of state Dr. might be.

I will go back through the archives more during my Christmas Break. I want to be informed before I go to see the specialist, as I am expecting the dr. today will say. I assume today I will just be describing my pain issues, some history, and sharing the information I've found on line that are issues for Harrington Rod and Fusion patients. I don't think she will be able to actually see anything on my back without an MRI, Cat Scan or X-ray. I actually still look very straight despite my pain. I am guessing I'm at beginning stages of stenosis, or I may have a problem with the lower hook of the rod. It seems to me there is something going on with the nerves branching out from right below my fusion. We will see.

I'll write later today to let you know how it goes. I appreciate that you have stayed active on the site despite being beyond the surgery.

Thanks again,

Diane

Diane,Good, let us know how you do tomorrow.If you mean you copied the document in the files that I posted, I should say that those were questions for my consults with surgeons....I don't think your PCP will be able to do much with them. One reason I shared them here was to show people the level of questioning I went through in my consults.Both DrBoachie and Rand, patiently sat down and spent at least 30 minutes going over them. The good thing about having a framework to ask questions, if you are seeing more than one doctor, is that you will cover the same material, so when, and if, it comes to deciding about anything, you are not comparing apples and oranges.Writing out any problem, for me, is very helpful...it helps me to follow a thought or idea to a conclusion. Even if this is not ordinarily something that you do, I highly recommend you do it, not necessarily before your PCP visit, although that would be a useful exercise too probably, but before you travel any lengthy distance to see a specialist.Without a "roadmap" a consult can go by too fast, and it is easy to leave with uncovered questions. I always recommend you also find out what the preferred method of asking follow up questions is....becasue without a doubt, the minute youleave the office, even if you are well prepared, new questions will arise!And yes, the search feature on the group is often overlooked by new members. If you are having a dreary, snowy day....I recommend spending some time going back through posts. The year prior to surgery I believe I managed to read internet postings by just about every person who had ever undergone revision surgery. It was particularly helpful to identify patient who had surgery with my potential surgeons and contact them "off line" for more information since, in many cases, they no longer were participating regularly. Also, this group has been around for more than 4 years....and I know that as an "oldie" sometimes I feel like I have said the same thing so many times that I have a hard time dedicating myself to another long post on a subject I have written about. I am not complaining mind you, just saying that I know there is a lot of information in our archives...but you have to dig for it. Maybe someday I will figure out a way to extract the wisdom of the group into an easier format. is free...and with all things free, there are some limitations. It can be difficult to go backwards, although since it is possible to follow a thread you can usually do a little better looking at pld convertaions...although I guarantee that you will find out how often people dont change the subject responding to a post, thus taking thread way off course!Good luck with your PCP.Take Care, Cam

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[Guest guest]

Well, I had my appointment today. Much as I envisioned it. History,

description of pain, and sharing what I've learned about it.

She admitted right away this wasn't her area of expertise. I said it was

the expertise of very few, so that was understandable. After going

through the discussion of my pain, etc., she thought it might be the

sciatic nerve. After examining my back, though, she said that it was

probably some type of degenerative disc situation (since the sciatic

nerve was much lower and the pain took a different pathway than I

described). Whether the degenerative disc problem was caused by the rod

and fusion or aging, she couldn't say.

She asked me what I was doing for the pain and encouraged me to keep

using it since it was helping. Then we discussed whether I was more

comfortable going to Shoreline Orthopaedic (local) or to see the

specialist, Dr. Kasten, in Kalamazoo. I opted for starting at the local

level so that I am not tied to going to Kasten later. I gave her Ondra,

Koski, Lenke, and Bridwell's names, etc. She seems willing to see what

we can do regarding the insurance issue, depending on where the testing I

do at Shoreline takes us.

By the way, does anyone know whether those of us who have the metal

Harrington rod in our backs can have an MRI? My PCP was wondering about

that. From my reading I thought that CAT scans were more useful in

determining things anyway.

Thanks for listening.

Diane VDW

Michigan

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