Re: Disappointed with my records

January 17, 2009

Diane,

I guess just be thankful they could get you anything, as many of us have been complete unsucessful at getting any records from so far back. At least you got some answers, all for the better. Sometimes in our quest for answers, somethings just have disappeared with time, and memories fade. Lesson learned from this is, going forward ask for copies of everything, office reports, surgical reports, and get copies of X-rays if you can. It's better to have in YOUR hot little hands than to leave it all up to an office keeping them, I know, some of my MRI's and X-ray have been lost between my two surgeons, as they used me as a teaching case, and neither of them will fess up as to where they went. Also you can learn alot from the reports, I have mine right by the computer, and look at them often.

Colorado Springs

[ ] Disappointed with my records

Hi everyone,I need a "shoulder to cry on"; well, maybe not cry, but express my disappointment. I have been waiting and waiting to get my records from the original surgery. I was evidently overly optimistic of the record keeping of the hospital.Of the 9 copied pages they sent me, one was of a bill--which did say the surgery was Harrington Instrumentation & Fusion D6 -L3. Dorsal must be the term they used to use for thoracic? The 2nd page was the discharge summary with little information I was looking for besides the drs who participated and that I had a 7 inch rod put in. The whole sentence "...obvious curve in the thoracic spine and dorsal curve and left lumbar curve." left me wondering about the difference between dorsal and thoracic. Perhaps I should have paid more attention in Biology class! (the encyclopedia has been no help, maybe I need to check out the search feature of this website.)The 3rd and 4th pages were poorly handwritten admission notes describing my condition and that the April to June X-rays I'd had had showed aggrevation of scoliosis. But no degrees were given, so my memory of 32 degrees and 35 increasing to nearly 50 will have to suffice, I guess.The 5-7th pages were almost completely darkened with age. I could make out "..._3 degrees as compared to the 18 degrees previously." I guess this may be 23 degrees from 18 previously. Further down it says "no significant change since 7-2-79." (that was the original surgery date). If there was a legible date on this page I might know when I had lost some correction.The 8-9th pages are also difficult to read because of age and bleeding from another page, but somewhat more easily read. It is the record of operation. Again, no degrees are given..."x-ray was taken, showing proper positioning of the rod and excellent correction of the curvature, exact number to be included in x-ray report." So anyway, I am glad I know the exact location of the rod and I guess I can pretty safely say the 18 degrees I remembered was correct despite not being able to read the rest of the report or when the loss of correction began (to the 23). Just writing about this is encouraging me a bit. I guess I did find some info. I just looked at those incomplete pages and was disheartened. I guess it has been 30 years, so my expectations were probably just too high. In case some of you missed my earlier posts, my Dec. visit with a physiatrist was tough since she didn't seem to believe my curves had been originally corrected to around 20 degrees (besides the fact that she treated me very dismissively). They were at 32 & 35 when she checked them. Also had sacral torsion and a collapsing disc space below the fusion. Not as bad of issues as many have on this forum, but scary for me. The physical therapy has helped the sacral torsion although it appears that it likes to slip back once in a while. I will be seeing Dr. Kasten, an aging spine specialist, on Feb. 3. So hopefully now that I have these records he, at least, will believe my fusion has lost correction. Thanks for listening, you all! I'm grateful to have you to learn from and share with as I walk this journey.Diane VDWMichigan

January 17, 2009

Diane,

If there's anything that can make us feel like forgotten dinasaurs, well, you just told the story. Have you gotten the records from the Doctor's office, or clinic during the time you were going (before and after the initial surgery)? There might be some specific degree of curves documented there. Also, I remember back when I was going once a ...month, I guess...for clinic day, when there was a herd of us, getting our x-rays and waiting our turn to get checked out by the doctors. They would use their rulers and other measuring devices and draw lines, etc. right on the x-ray films as they were calculating the curve degrees and would write that down on the x-ray. I don't know if all doctors did that - but have you checked into the availability of the office notes and your old films?

Just thought.

Who would have even thought that we'd be needing them down the road...and technology back then wasn't even close to that of today's. Xerox machines weren't born yet, typed notes - well, in my day typists used carbon paper (in my days anyway, I'm 54).

Also, sometimes when someone is making copies, whether it be a service the hospital or doctor's office hires to make the copies of our records for either us, or other sources, an attorney, another doctor, Social Security, ... what gets copied and provided may be determined by someone who deems what of all of the documentation in the file will be pertinent or beneficial for the purpose of the copies being ordered...and there very well may be other documentation in the file that doesn't get copied.

I've never asked to have direct access to my charts/files to physically flip through the pages, but I would think that we would have a legal right to do that, even if it is in the doctor's office, or hospital, wherever they are stored, and make copies of anything and everything we want. I know they all want to charge for copies but depending on who is requesting the copies, sometimes they are free of charge. I've often considered doing this but as of yet I haven't really needed to. A digital camera would be something handy to have on hand if one were to get free access to their files but have to pay a pretty penny for a copy. Then there are small all-in-one printer/scanner/fax machines, many of which don't need to be connected to a computer to make a copy, some can scan and store in memory and can be saved electronically later when getting hooked back up with your PC.

I mean, there's gotta be something, somewhere that has the information your're looking for and we sometimes have to take matters more in our own hands....I'm sure you've gone many routes, but maybe of the things I've said here will spark a memory or an idea that might be of help.

However, if our records have been lost or deteriorated over the years, I guess we can add that to the list of "Things of Yuck" in our own personal record keeping and in life in general. As long as there's also a list of "Things of Good" I think it's ok to have a Yuck list too!

G

[ ] Disappointed with my records

Hi everyone,I need a "shoulder to cry on"; well, maybe not cry, but express my disappointment. I have been waiting and waiting to get my records from the original surgery. I was evidently overly optimistic of the record keeping of the hospital.Of the 9 copied pages they sent me, one was of a bill--which did say the surgery was Harrington Instrumentation & Fusion D6 -L3. Dorsal must be the term they used to use for thoracic? The 2nd page was the discharge summary with little information I was looking for besides the drs who participated and that I had a 7 inch rod put in. The whole sentence "...obvious curve in the thoracic spine and dorsal curve and left lumbar curve." left me wondering about the difference between dorsal and thoracic. Perhaps I should have paid more attention in Biology class! (the encyclopedia has been no help, maybe I need to check out the search feature of this website.)The 3rd and 4th pages were poorly handwritten admission notes describing my condition and that the April to June X-rays I'd had had showed aggrevation of scoliosis. But no degrees were given, so my memory of 32 degrees and 35 increasing to nearly 50 will have to suffice, I guess.The 5-7th pages were almost completely darkened with age. I could make out "..._3 degrees as compared to the 18 degrees previously." I guess this may be 23 degrees from 18 previously. Further down it says "no significant change since 7-2-79." (that was the original surgery date). If there was a legible date on this page I might know when I had lost some correction.The 8-9th pages are also difficult to read because of age and bleeding from another page, but somewhat more easily read. It is the record of operation. Again, no degrees are given..."x-ray was taken, showing proper positioning of the rod and excellent correction of the curvature, exact number to be included in x-ray report." So anyway, I am glad I know the exact location of the rod and I guess I can pretty safely say the 18 degrees I remembered was correct despite not being able to read the rest of the report or when the loss of correction began (to the 23). Just writing about this is encouraging me a bit. I guess I did find some info. I just looked at those incomplete pages and was disheartened. I guess it has been 30 years, so my expectations were probably just too high. In case some of you missed my earlier posts, my Dec. visit with a physiatrist was tough since she didn't seem to believe my curves had been originally corrected to around 20 degrees (besides the fact that she treated me very dismissively). They were at 32 & 35 when she checked them. Also had sacral torsion and a collapsing disc space below the fusion. Not as bad of issues as many have on this forum, but scary for me. The physical therapy has helped the sacral torsion although it appears that it likes to slip back once in a while. I will be seeing Dr. Kasten, an aging spine specialist, on Feb. 3. So hopefully now that I have these records he, at least, will believe my fusion has lost correction. Thanks for listening, you all! I'm grateful to have you to learn from and share with as I walk this journey.Diane VDWMichigan

January 17, 2009

Diane,

Sorry to hear that you weren't able to find more information from

your records. I hope that your appointment in February goes well.

For what it's worth, I was under the impression that it's normal for

curves to " settle " a bit after surgery. My curves were 65-70 degrees

before my original surgery. The were corrected to 40-45 during the

surgery. At some point afterwards while the fusion was solidifying

(not sure how long) they settled permanently at around 55 degrees

each. My original surgeon acted like it was typical, so I never

worried about it. Of course, that's the same surgeon that I saw 10

years post-op for some issues, and he never mentioned my flatback,

which was apparent in the x-rays....

>

> Hi everyone,

>

> I need a " shoulder to cry on " ; well, maybe not cry, but express my

> disappointment. I have been waiting and waiting to get my records

> from the original surgery. I was evidently overly optimistic of

the

> record keeping of the hospital.

>

> Of the 9 copied pages they sent me, one was of a bill--which did

say

> the surgery was Harrington Instrumentation & Fusion D6 -L3. Dorsal

> must be the term they used to use for thoracic? The 2nd page was

the

> discharge summary with little information I was looking for besides

> the drs who participated and that I had a 7 inch rod put in. The

> whole sentence " ...obvious curve in the thoracic spine and dorsal

> curve and left lumbar curve. " left me wondering about the

difference

> between dorsal and thoracic. Perhaps I should have paid more

> attention in Biology class! (the encyclopedia has been no help,

> maybe I need to check out the search feature of this website.)

>

> The 3rd and 4th pages were poorly handwritten admission notes

> describing my condition and that the April to June X-rays I'd had

had

> showed aggrevation of scoliosis. But no degrees were given, so my

> memory of 32 degrees and 35 increasing to nearly 50 will have to

> suffice, I guess.

>

> The 5-7th pages were almost completely darkened with age. I could

> make out " ..._3 degrees as compared to the 18 degrees previously. "

I

> guess this may be 23 degrees from 18 previously. Further down it

> says " no significant change since 7-2-79. " (that was the original

> surgery date). If there was a legible date on this page I might

know

> when I had lost some correction.

>

> The 8-9th pages are also difficult to read because of age and

> bleeding from another page, but somewhat more easily read. It is

the

> record of operation. Again, no degrees are given... " x-ray was

taken,

> showing proper positioning of the rod and excellent correction of

the

> curvature, exact number to be included in x-ray report. "

>

> So anyway, I am glad I know the exact location of the rod and I

guess

> I can pretty safely say the 18 degrees I remembered was correct

> despite not being able to read the rest of the report or when the

> loss of correction began (to the 23).

>

> Just writing about this is encouraging me a bit. I guess I did

find

> some info. I just looked at those incomplete pages and was

> disheartened. I guess it has been 30 years, so my expectations

were

> probably just too high.

>

> In case some of you missed my earlier posts, my Dec. visit with a

> physiatrist was tough since she didn't seem to believe my curves

had

> been originally corrected to around 20 degrees (besides the fact

that

> she treated me very dismissively). They were at 32 & 35 when she

> checked them. Also had sacral torsion and a collapsing disc space

> below the fusion. Not as bad of issues as many have on this forum,

> but scary for me. The physical therapy has helped the sacral

torsion

> although it appears that it likes to slip back once in a while. I

> will be seeing Dr. Kasten, an aging spine specialist, on Feb. 3.

So

> hopefully now that I have these records he, at least, will believe

my

> fusion has lost correction.

>

> Thanks for listening, you all! I'm grateful to have you to learn

> from and share with as I walk this journey.

>

> Diane VDW

> Michigan

>

January 17, 2009

Dear and ,

Thanks for your replies. I was really sounding off, wasn't I!?! I appreciate your responses.

Memories definitely fade. I know my mom kept a journal when I was in the hospital. I'm not sure if she just showed it to me or gave it to me, but I can't find it. That might actually be another help if I ask her. I really didn't think about it until today. So you guys did spark my memory!

I made copies of the things from the recent visit to Dr. Kane-Smart, but I will have to ask them about getting the x-rays copied. I have them now, but they want them returned after I visit the surgeon.

As for visits before and after my original surgery, I thought those would be included in my hospital records, but I guess not. I have no idea what clinic we went to. I thought they were affiliated. I will have to ask my mom for some help to see if I can track that down. I guess I never saw it as that necessary since I thought I was "good to go for life." All I have in my childhood scrapbook from that time is the discharge instructions and a picture of me getting them from Dr. Edholm...who by the way, looks a lot younger than I remember him...ha! ha!

I actually never felt it was so highly necessary to know all the particulars of my original surgery since I figured the Dr.s would believe what I told them. Until Dr. Kane-Smart.

By the way, the drawing and figuring with rulers right on the x-rays must've been what Dr. Kane-Smart did, since there are such markings on my new x-rays.

The hospital records dept. did charge me for copying the records...$1.08 per page. I guess I can be glad there were not 50 pages like the ones that I couldn't read. I would suspect I might find the same deteriorated pages from the records Dr. Edholm kept at his office. As for accessing records with a digital camera, etc...I am totally techno-challenged, so even if I do have a digital camera , a scanner, etc., I haven't learned how to use them in that way...and my husband is even less able than I am. My brother-in-law from out of state helped us buy the printer/scanner/copier...only I generally only use it like a copy machine for my school work for the kids.

I think I will just be satisfied that I know the "18 degrees" as the original correction. That puts into perspective the 32 & 35 degree curves Dr. Kane-Smart measured in Dec.

Well, again, thank you for your care for me. I am blessed to have you here to listen to me and help me sort things through. You guys are on my "Things of Good" list that G. mentioned!

DianeVDW

Michigan

Diane,

I guess just be thankful they could get you anything, as many of us have been complete unsucessful at getting any records from so far back. At least you got some answers, all for the better. Sometimes in our quest for answers, somethings just have disappeared with time, and memories fade. Lesson learned from this is, going forward ask for copies of everything, office reports, surgical reports, and get copies of X-rays if you can. It's better to have in YOUR hot little hands than to leave it all up to an office keeping them, I know, some of my MRI's and X-ray have been lost between my two surgeons, as they used me as a teaching case, and neither of them will fess up as to where they went. Also you can learn alot from the reports, I have mine right by the computer, and look at them often.

Colorado Springs

***************

Diane,

If there's anything that can make us feel like forgotten dinasaurs, well, you just told the story. Have you gotten the records from the Doctor's office, or clinic during the time you were going (before and after the initial surgery)? There might be some specific degree of curves documented there. Also, I remember back when I was going once a ...month, I guess...for clinic day, when there was a herd of us, getting our x-rays and waiting our turn to get checked out by the doctors. They would use their rulers and other measuring devices and draw lines, etc. right on the x-ray films as they were calculating the curve degrees and would write that down on the x-ray. I don't know if all doctors did that - but have you checked into the availability of the office notes and your old films?

Just thought.

Who would have even thought that we'd be needing them down the road...and technology back then wasn't even close to that of today's. Xerox machines weren't born yet, typed notes - well, in my day typists used carbon paper (in my days anyway, I'm 54).

Also, sometimes when someone is making copies, whether it be a service the hospital or doctor's office hires to make the copies of our records for either us, or other sources, an attorney, another doctor, Social Security, ... what gets copied and provided may be determined by someone who deems what of all of the documentation in the file will be pertinent or beneficial for the purpose of the copies being ordered...and there very well may be other documentation in the file that doesn't get copied.

I've never asked to have direct access to my charts/files to physically flip through the pages, but I would think that we would have a legal right to do that, even if it is in the doctor's office, or hospital, wherever they are stored, and make copies of anything and everything we want. I know they all want to charge for copies but depending on who is requesting the copies, sometimes they are free of charge. I've often considered doing this but as of yet I haven't really needed to. A digital camera would be something handy to have on hand if one were to get free access to their files but have to pay a pretty penny for a copy. Then there are small all-in-one printer/scanner/fax machines, many of which don't need to be connected to a computer to make a copy, some can scan and store in memory and can be saved electronically later when getting hooked back up with your PC.

I mean, there's gotta be something, somewhere that has the information your're looking for and we sometimes have to take matters more in our own hands....I'm sure you've gone many routes, but maybe of the things I've said here will spark a memory or an idea that might be of help.

However, if our records have been lost or deteriorated over the years, I guess we can add that to the list of "Things of Yuck" in our own personal record keeping and in life in general. As long as there's also a list of "Things of Good" I think it's ok to have a Yuck list too!

G

[ ] Disappointed with my records

Hi everyone,I need a "shoulder to cry on"; well, maybe not cry, but express my disappointment. I have been waiting and waiting to get my records from the original surgery. I was evidently overly optimistic of the record keeping of the hospital.Of the 9 copied pages they sent me, one was of a bill--which did say the surgery was Harrington Instrumentation & Fusion D6 -L3. Dorsal must be the term they used to use for thoracic? The 2nd page was the discharge summary with little information I was looking for besides the drs who participated and that I had a 7 inch rod put in. The whole sentence "...obvious curve in the thoracic spine and dorsal curve and left lumbar curve." left me wondering about the difference between dorsal and thoracic. Perhaps I should have paid more attention in Biology class! (the encyclopedia has been no help, maybe I need to check out the search feature of this website.)The 3rd and 4th pages were poorly handwritten admission notes describing my condition and that the April to June X-rays I'd had had showed aggrevation of scoliosis. But no degrees were given, so my memory of 32 degrees and 35 increasing to nearly 50 will have to suffice, I guess.The 5-7th pages were almost completely darkened with age. I could make out "..._3 degrees as compared to the 18 degrees previously." I guess this may be 23 degrees from 18 previously. Further down it says "no significant change since 7-2-79." (that was the original surgery date). If there was a legible date on this page I might know when I had lost some correction.The 8-9th pages are also difficult to read because of age and bleeding from another page, but somewhat more easily read. It is the record of operation. Again, no degrees are given..."x-ray was taken, showing proper positioning of the rod and excellent correction of the curvature, exact number to be included in x-ray report." So anyway, I am glad I know the exact location of the rod and I guess I can pretty safely say the 18 degrees I remembered was correct despite not being able to read the rest of the report or when the loss of correction began (to the 23). Just writing about this is encouraging me a bit. I guess I did find some info. I just looked at those incomplete pages and was disheartened. I guess it has been 30 years, so my expectations were probably just too high. In case some of you missed my earlier posts, my Dec. visit with a physiatrist was tough since she didn't seem to believe my curves had been originally corrected to around 20 degrees (besides the fact that she treated me very dismissively). They were at 32 & 35 when she checked them. Also had sacral torsion and a collapsing disc space below the fusion. Not as bad of issues as many have on this forum, but scary for me. The physical therapy has helped the sacral torsion although it appears that it likes to slip back once in a while. I will be seeing Dr. Kasten, an aging spine specialist, on Feb. 3. So hopefully now that I have these records he, at least, will believe my fusion has lost correction. Thanks for listening, you all! I'm grateful to have you to learn from and share with as I walk this journey.Diane VDWMichigan

____________________________________________________________

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January 17, 2009

Dear ,

Thanks for your letter. Wow! I was never told that. Perhaps that's why the one page that I could barely read looked like it may have said that I had gotten to 23 degrees from the 18. (No idea of the date since it wasn't legible.)

Wow! Did you have bad curves to start with! You corrected to about where I started out. These crazy backs of ours! It would be nice if someday someone could figure out just why our backs curved like that. And perhaps the genetic link, since I'm pretty sure there is one.

I am still wondering if I have flatback. I think that I may have just under used all the muscles in my lower back and legs, so my lower back weakened because I didn't know I could use it (I thought I was fused much longer and was immobile there). Some compensation for the fusion could also be going on. I guess maybe the surgeon will have some insight.

Well, I have a 6 year old begging me to help him...gotta go. Thanks again for your letter. I feel blessed to have you all here to encourage me!

Diane VDW

Michigan

Diane,Sorry to hear that you weren't able to find more information from your records. I hope that your appointment in February goes well. For what it's worth, I was under the impression that it's normal for curves to "settle" a bit after surgery. My curves were 65-70 degrees before my original surgery. The were corrected to 40-45 during the surgery. At some point afterwards while the fusion was solidifying (not sure how long) they settled permanently at around 55 degrees each. My original surgeon acted like it was typical, so I never worried about it. Of course, that's the same surgeon that I saw 10 years post-op for some issues, and he never mentioned my flatback, which was apparent in the x-rays....

____________________________________________________________

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January 17, 2009

Diane, I'm sorry you didn't get more information in your records. My

records from around my 1971 Harrington fusion also seem to refer to the

thoracic spine as "dorsal", so I think you're right in your guess, but

I haven't a clue why a doctor would use the terms dorsal and thoracic

in the same sentence.

My records do give degrees, and my correction was to a certain number

while casted and horizontal, but once I was up and around in my brace

the numbers settled to something higher. Correction to 20 degrees is

certainly a possibility, but I don't know if that much loss of

correction can be accounted for by just the effects of gravity.

Something to ask surgeons you consult, surely.

Sharon

Diane VanDerWerff wrote:

Hi everyone,

I need a "shoulder to cry on"; well, maybe not cry, but express my

disappointment. I have been waiting and waiting to get my records

from the original surgery. I was evidently overly optimistic of the

record keeping of the hospital.

Of the 9 copied pages they sent me, one was of a bill--which did say

the surgery was Harrington Instrumentation & Fusion D6 -L3. Dorsal

must be the term they used to use for thoracic? The 2nd page was the

discharge summary with little information I was looking for besides

the drs who participated and that I had a 7 inch rod put in. The

whole sentence "...obvious curve in the thoracic spine and dorsal

curve and left lumbar curve." left me wondering about the difference

between dorsal and thoracic. Perhaps I should have paid more

attention in Biology class! (the encyclopedia has been no help,

maybe I need to check out the search feature of this website.)

The 3rd and 4th pages were poorly handwritten admission notes

describing my condition and that the April to June X-rays I'd had had

showed aggrevation of scoliosis. But no degrees were given, so my

memory of 32 degrees and 35 increasing to nearly 50 will have to

suffice, I guess.

The 5-7th pages were almost completely darkened with age. I could

make out "..._3 degrees as compared to the 18 degrees previously." I

guess this may be 23 degrees from 18 previously. Further down it

says "no significant change since 7-2-79." (that was the original

surgery date). If there was a legible date on this page I might know

when I had lost some correction.

The 8-9th pages are also difficult to read because of age and

bleeding from another page, but somewhat more easily read. It is the

record of operation. Again, no degrees are given..."x-ray was taken,

showing proper positioning of the rod and excellent correction of the

curvature, exact number to be included in x-ray report."

So anyway, I am glad I know the exact location of the rod and I guess

I can pretty safely say the 18 degrees I remembered was correct

despite not being able to read the rest of the report or when the

loss of correction began (to the 23).

Just writing about this is encouraging me a bit. I guess I did find

some info. I just looked at those incomplete pages and was

disheartened. I guess it has been 30 years, so my expectations were

probably just too high.

In case some of you missed my earlier posts, my Dec. visit with a

physiatrist was tough since she didn't seem to believe my curves had

been originally corrected to around 20 degrees (besides the fact that

she treated me very dismissively) . They were at 32 & 35 when she

checked them. Also had sacral torsion and a collapsing disc space

below the fusion. Not as bad of issues as many have on this forum,

but scary for me. The physical therapy has helped the sacral torsion

although it appears that it likes to slip back once in a while. I

will be seeing Dr. Kasten, an aging spine specialist, on Feb. 3. So

hopefully now that I have these records he, at least, will believe my

fusion has lost correction.

Thanks for listening, you all! I'm grateful to have you to learn

from and share with as I walk this journey.

Diane VDW

Michigan

January 18, 2009

Hi Sharon,

Thanks for the reply. I later used the search feature in our group and saw that "dorsal" used to be used for "thoracic." It was confusing to use both in one sentence though.

I couldn't imagine how a fused spine could lose 12-15 degrees either. I suppose over 29 years gravity could do that, but I will definitely see what the surgeon thinks on Feb. 3.

Thanks for the support. I'm glad to be a part of this group!

Diane VDW

Michigan

Diane, I'm sorry you didn't get more information in your records. My records from around my 1971 Harrington fusion also seem to refer to the thoracic spine as "dorsal", so I think you're right in your guess, but I haven't a clue why a doctor would use the terms dorsal and thoracic in the same sentence.My records do give degrees, and my correction was to a certain number while casted and horizontal, but once I was up and around in my brace the numbers settled to something higher. Correction to 20 degrees is certainly a possibility, but I don't know if that much loss of correction can be accounted for by just the effects of gravity. Something to ask surgeons you consult, surely.SharonDiane VanDerWerff wrote:

Hi everyone,I need a "shoulder to cry on"; well, maybe not cry, but express my disappointment. I have been waiting and waiting to get my records from the original surgery. I was evidently overly optimistic of the record keeping of the hospital.Of the 9 copied pages they sent me, one was of a bill--which did say the surgery was Harrington Instrumentation & Fusion D6 -L3. Dorsal must be the term they used to use for thoracic? The 2nd page was the discharge summary with little information I was looking for besides the drs who participated and that I had a 7 inch rod put in. The whole sentence "...obvious curve in the thoracic spine and dorsal curve and left lumbar curve." left me wondering about the difference between dorsal and thoracic. Perhaps I should have paid more attention in Biology class! (the encyclopedia has been no help, maybe I need to check out the search feature of this website.)The 3rd and 4th pages were poorly handwritten admission notes describing my condition and that the April to June X-rays I'd had had showed aggrevation of scoliosis. But no degrees were given, so my memory of 32 degrees and 35 increasing to nearly 50 will have to suffice, I guess.The 5-7th pages were almost completely darkened with age. I could make out "..._3 degrees as compared to the 18 degrees previously." I guess this may be 23 degrees from 18 previously. Further down it says "no significant change since 7-2-79." (that was the original surgery date). If there was a legible date on this page I might know when I had lost some correction.The 8-9th pages are also difficult to read because of age and bleeding from another page, but somewhat more easily read. It is the record of operation. Again, no degrees are given..."x-ray was taken, showing proper positioning of the rod and excellent correction of the curvature, exact number to be included in x-ray report." So anyway, I am glad I know the exact location of the rod and I guess I can pretty safely say the 18 degrees I remembered was correct despite not being able to read the rest of the report or when the loss of correction began (to the 23). Just writing about this is encouraging me a bit. I guess I did find some info. I just looked at those incomplete pages and was disheartened. I guess it has been 30 years, so my expectations were probably just too high. In case some of you missed my earlier posts, my Dec. visit with a physiatrist was tough since she didn't seem to believe my curves had been originally corrected to around 20 degrees (besides the fact that she treated me very dismissively) . They were at 32 & 35 when she checked them. Also had sacral torsion and a collapsing disc space below the fusion. Not as bad of issues as many have on this forum, but scary for me. The physical therapy has helped the sacral torsion although it appears that it likes to slip back once in a while. I will be seeing Dr. Kasten, an aging spine specialist, on Feb. 3. So hopefully now that I have these records he, at least, will believe my fusion has lost correction. Thanks for listening, you all! I'm grateful to have you to learn from and share with as I walk this journey.Diane VDWMichigan

____________________________________________________________

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January 19, 2009

and Diane,

My lower curve which was the biggest of mine, was corrected to 60 degrees, all said and done after my Harrington Rod surgery. It did progress when I cracked the Harrington Rod fusion mass after my first revision, to the high 80's.

Neither my Mom or I could remember just how big my curves were before my Harrington Rod surgery, but Mom remembered that every doc that saw me had never seen anything that large, she believed the bottom one was in the high 90's.

I think, and maybe I'm wrong, but corrections couldn't be too big, maybe half the size of the curve, given procedures done back then. A couple of years ago I saw a SURGERY SAVED MY LIFE SEGMENT with Dr. Boachie, and he was working on a spine of a young man in Africa with curves above 120 degrees, and he said they could only go so far in the correction because if you went all the way back to say zero, it would streach the spine too far and he would come out paralized.

I still have a curve in my lumbar region thats high twenties low thirties, but thats okay and doesn't bother me, but it is neat to see so many of you with very little curve following your revisions.

[ ] Re: Disappointed with my records

Diane,Sorry to hear that you weren't able to find more information from your records. I hope that your appointment in February goes well. For what it's worth, I was under the impression that it's normal for curves to "settle" a bit after surgery. My curves were 65-70 degrees before my original surgery. The were corrected to 40-45 during the surgery. At some point afterwards while the fusion was solidifying (not sure how long) they settled permanently at around 55 degrees each. My original surgeon acted like it was typical, so I never worried about it. Of course, that's the same surgeon that I saw 10 years post-op for some issues, and he never mentioned my flatback, which was apparent in the x-rays....>> Hi everyone,> > I need a "shoulder to cry on"; well, maybe not cry, but express my > disappointment. I have been waiting and waiting to get my records > from the original surgery. I was evidently overly optimistic of the > record keeping of the hospital.> > Of the 9 copied pages they sent me, one was of a bill--which did say > the surgery was Harrington Instrumentation & Fusion D6 -L3. Dorsal > must be the term they used to use for thoracic? The 2nd page was the > discharge summary with little information I was looking for besides > the drs who participated and that I had a 7 inch rod put in. The > whole sentence "...obvious curve in the thoracic spine and dorsal > curve and left lumbar curve." left me wondering about the difference > between dorsal and thoracic. Perhaps I should have paid more > attention in Biology class! (the encyclopedia has been no help, > maybe I need to check out the search feature of this website.)> > The 3rd and 4th pages were poorly handwritten admission notes > describing my condition and that the April to June X-rays I'd had had > showed aggrevation of scoliosis. But no degrees were given, so my > memory of 32 degrees and 35 increasing to nearly 50 will have to > suffice, I guess.> > The 5-7th pages were almost completely darkened with age. I could > make out "..._3 degrees as compared to the 18 degrees previously." I > guess this may be 23 degrees from 18 previously. Further down it > says "no significant change since 7-2-79." (that was the original > surgery date). If there was a legible date on this page I might know > when I had lost some correction.> > The 8-9th pages are also difficult to read because of age and > bleeding from another page, but somewhat more easily read. It is the > record of operation. Again, no degrees are given..."x-ray was taken, > showing proper positioning of the rod and excellent correction of the > curvature, exact number to be included in x-ray report." > > So anyway, I am glad I know the exact location of the rod and I guess > I can pretty safely say the 18 degrees I remembered was correct > despite not being able to read the rest of the report or when the > loss of correction began (to the 23). > > Just writing about this is encouraging me a bit. I guess I did find > some info. I just looked at those incomplete pages and was > disheartened. I guess it has been 30 years, so my expectations were > probably just too high. > > In case some of you missed my earlier posts, my Dec. visit with a > physiatrist was tough since she didn't seem to believe my curves had > been originally corrected to around 20 degrees (besides the fact that > she treated me very dismissively). They were at 32 & 35 when she > checked them. Also had sacral torsion and a collapsing disc space > below the fusion. Not as bad of issues as many have on this forum, > but scary for me. The physical therapy has helped the sacral torsion > although it appears that it likes to slip back once in a while. I > will be seeing Dr. Kasten, an aging spine specialist, on Feb. 3. So > hopefully now that I have these records he, at least, will believe my > fusion has lost correction. > > Thanks for listening, you all! I'm grateful to have you to learn > from and share with as I walk this journey.> > Diane VDW> Michigan>

January 19, 2009

Hi ,

WOW! Those were some curves! So, what are your curves after revision surgeries?

I remember that my doctor told me that they could only get correction based on the flexibility of the patient. Since my curves progressed so quickly during a growth spurt, and I was active from track as well as gym class beginner gymnastics, it seems my back was very flexible. I remember the doctor being very pleased with how flexible I was. I can imagine 120 degrees would require an awful lot of flexibility to smooth out. I would think the spinal cord wouldn't adjust very well. I'd be surprised if the muscles would even allow correction to zero, more or less stretch the spine to cause paralysis. I would be interested in seeing the special you saw on the African man.

, it would be great to be able to meet you some day! You seem to have really learned how to live life post-revision to the full. You live in Colorado, right? The summer of 2010, my husband's family will be doing a family reunion at Estes Park. Then we will be staying with my sister-in-law in Steamboat Springs for a week. I have no idea what life will be like that far down the road, but depending on distance from Estes Park or Steamboat, it would be fun to meet you out for lunch or something.

I also hope to someday make it to one of this forum's retreats. At this stage of the game that doesn't work out too well. My sister lives in North Carolina, so I was considering it (make it a 2 for 1 trip), but my family still needs me around at this point. I think a few years down the road the older kids will be driving and can cover things here, but for now I'm the only driver besides my hubby.

Well, thanks for sharing!

Diane VDW

Michigan

and Diane,

My lower curve which was the biggest of mine, was corrected to 60 degrees, all said and done after my Harrington Rod surgery. It did progress when I cracked the Harrington Rod fusion mass after my first revision, to the high 80's.

Neither my Mom or I could remember just how big my curves were before my Harrington Rod surgery, but Mom remembered that every doc that saw me had never seen anything that large, she believed the bottom one was in the high 90's.

I think, and maybe I'm wrong, but corrections couldn't be too big, maybe half the size of the curve, given procedures done back then. A couple of years ago I saw a SURGERY SAVED MY LIFE SEGMENT with Dr. Boachie, and he was working on a spine of a young man in Africa with curves above 120 degrees, and he said they could only go so far in the correction because if you went all the way back to say zero, it would streach the spine too far and he would come out paralized.

I still have a curve in my lumbar region thats high twenties low thirties, but thats okay and doesn't bother me, but it is neat to see so many of you with very little curve following your revisions.

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January 19, 2009

Diane,

With all the turmoil in the economy, and while my hubby has a job for the moment, who knows where the next year will land us. We are hopeful we can stay here at least till the summer of 2010 as our daughter graduates high school then, but that might not be possible. It's looking like our next move will be to somewhere in Texas, as there are a lot more computer jobs out there in what my hubby does, in fact he has an interview in San this week. If we are still here, would love to meet up with you. Estes Park is stunning, Rockie Mountain National park just up the road is amazing, I took the kids and we loved every moment, the veiws are so memorable. I'd say by quessing we are about a good three hours away from Estes Park.

Colorado Springs

Re: [ ] Re: Disappointed with my records

Hi ,

WOW! Those were some curves! So, what are your curves after revision surgeries?

I remember that my doctor told me that they could only get correction based on the flexibility of the patient. Since my curves progressed so quickly during a growth spurt, and I was active from track as well as gym class beginner gymnastics, it seems my back was very flexible. I remember the doctor being very pleased with how flexible I was. I can imagine 120 degrees would require an awful lot of flexibility to smooth out. I would think the spinal cord wouldn't adjust very well. I'd be surprised if the muscles would even allow correction to zero, more or less stretch the spine to cause paralysis. I would be interested in seeing the special you saw on the African man.

, it would be great to be able to meet you some day! You seem to have really learned how to live life post-revision to the full. You live in Colorado, right? The summer of 2010, my husband's family will be doing a family reunion at Estes Park. Then we will be staying with my sister-in-law in Steamboat Springs for a week. I have no idea what life will be like that far down the road, but depending on distance from Estes Park or Steamboat, it would be fun to meet you out for lunch or something.

I also hope to someday make it to one of this forum's retreats. At this stage of the game that doesn't work out too well. My sister lives in North Carolina, so I was considering it (make it a 2 for 1 trip), but my family still needs me around at this point. I think a few years down the road the older kids will be driving and can cover things here, but for now I'm the only driver besides my hubby.

Well, thanks for sharing!

Diane VDW

Michigan

and Diane,

My lower curve which was the biggest of mine, was corrected to 60 degrees, all said and done after my Harrington Rod surgery. It did progress when I cracked the Harrington Rod fusion mass after my first revision, to the high 80's.

Neither my Mom or I could remember just how big my curves were before my Harrington Rod surgery, but Mom remembered that every doc that saw me had never seen anything that large, she believed the bottom one was in the high 90's.

I think, and maybe I'm wrong, but corrections couldn't be too big, maybe half the size of the curve, given procedures done back then. A couple of years ago I saw a SURGERY SAVED MY LIFE SEGMENT with Dr. Boachie, and he was working on a spine of a young man in Africa with curves above 120 degrees, and he said they could only go so far in the correction because if you went all the way back to say zero, it would streach the spine too far and he would come out paralized.

I still have a curve in my lumbar region thats high twenties low thirties, but thats okay and doesn't bother me, but it is neat to see so many of you with very little curve following your revisions.

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January 19, 2009

Diane,

I am sorry your past records were not more illuminating for you, but

as you said, you actually did find out more information that you first

thought. It would have been nice to cone up with xrays...but I think

very few of us had them for our surgeons referral at this point. I

believe most hospitals throw them out after a period of time.

Going forward, your record will be based on what they find in the

imaging studies, so as long as you get copies from here on out you

will be in good shape. Be sure to ask for radiology reports as well as

notes made by the doc following your office visit. That will help you

clarify what you are hearing and reaseach further if necessary. The

law is that the xrays are actually yours....you paid for the imaging,

and the reports....so technically, you could keep the films ...but as

long as you know where they are right now you can return them if you

want to....or not. Most radiology offices just make you sign something

saying you will return them to encourage you to do it. You don't want

to misplace them, but you also don't have to go through the hassle of

checking them in and out from a doctor's office you may no longer be

seeing. Its up to you.

I know we will all be very interested to hear how your appointment

goes with DrKasten. Hang in there.

Take Care, Cam

January 20, 2009

Cam,

Thanks for the reply. I am definitely planning to get copies of things. I mentioned it to the P.T. today, too, and she said that would be fine, and it was a good idea since most places only keep records 7 years now (although she may have been referring to just their office, I'm not sure).

I also agree with what you said about getting the doctor's notes. It clarified a lot for me when I saw Dr. Kane-Smart's. I had thought I had a collapsing 'disc', but it was a 'disc space'. Big difference. But when you are in there and they are talking so fast since it is all old hat to them, it is hard to understand it all clearly.

I'm almost worried about my appointment with Dr. Kasten because I am doing so much better (but definitely still have some pain issues). I am afraid he will be angry with me for wasting his time since I am not severely in pain anymore and am not torsioned anymore. I do still think the loss of correction by around 15 degrees is something to discuss, though. So perhaps he will not think I'm wasting his time. I guess as long as I'm not in the kind of constant pain I was in before P.T., I really don't mind having lost the correction on the curves...but if it is something that is progressing even now, then I want to know where to go with that.

As for the x-rays I had taken in Dec....I will try to get copies, but honestly, they are hard to read and in my opinion not very helpful since it isn't one solid picture, but a piece at the bottom, a piece at the top, and a side. Perhaps it is just not helpful to ME since I'm not trained in what to look for. Perhaps my future docs would like them for a starting point. I'm guessing Kasten will take his own x-rays and possibly request other types of imaging if he needs more information.

Thanks again, Cam, for your care and compassion for me. With the family and friends tired of hearing about my back issues, it is so nice to have friends who care in this group.

Diane VDW

Michigan

Diane,I am sorry your past records were not more illuminating for you, butas you said, you actually did find out more information that you firstthought. It would have been nice to cone up with xrays...but I thinkvery few of us had them for our surgeons referral at this point. Ibelieve most hospitals throw them out after a period of time.Going forward, your record will be based on what they find in theimaging studies, so as long as you get copies from here on out youwill be in good shape. Be sure to ask for radiology reports as well asnotes made by the doc following your office visit. That will help youclarify what you are hearing and reaseach further if necessary. Thelaw is that the xrays are actually yours....you paid for the imaging,and the reports....so technically, you could keep the films ...but aslong as you know where they are right now you can return them if youwant to....or not. Most radiology offices just make you sign somethingsaying you will return them to encourage you to do it. You don't wantto misplace them, but you also don't have to go through the hassle ofchecking them in and out from a doctor's office you may no longer beseeing. Its up to you.I know we will all be very interested to hear how your appointmentgoes with DrKasten. Hang in there.Take Care, Cam

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January 22, 2009

Diane,

I suspect your fear of DrKasten being angry with you will turn out to

be unfounded.

I think the experience you had with Kane-Smart probably jaded your

view of what a professional medical person normally acts like. You

deserve the attention and concern of any doctor that you see. You

deserve to be taken seriously, and to have the opportunity to

establish a relationship with a doctor who can realistically monitor

you for changes and think about your condition with respect to the

" long term " .

Keep in mind however, that surgeons do surgery. It may seem somewhat

ridiculous to say that, but just expect your conversation to pretty

much revolve around that perspective, if you understand what I am

saying. Within that context, realize that no surgeon should EVER

recommmend surgery unless they truely feel that the patient will

benefit. Thats the oath they take. And a busy, highy respected surgeon

is never going to trip over any fuzzy lines here.

It can take time to find the doctor that you feel most comfortable

with. recognize that it is at least possible that you are going to

need surgery in the future, and using your time now to establish a

relationship while you are still functioning reasonably well is not a

bad thing. If you get a different feeling, or just don't like this

doctor, it is far better to know this now, then at a future date when

you feel like your back is against the wall and pain is making it

difficult to even contemplate travelling to consult a prospective

surgeon. That I say from experience!

Take Care, Cam

January 22, 2009

Hi again, Cam,

Thanks so much for the encouragement! I never thought about it this way before...that I need to develop this relationship with the surgeon, rather like my daughters with their scoliosis dr., so that as my spine needs more attention, we have a history built up. He knows my condition as it is now, and as it heads south, as it likely will, he can (if we like him anyway) guide us through the next steps (surgery, or whatever).

There is even a possibility he will recommend something to be done anyway...I know I am certainly not pain-free, even though my quality of life is much improved. I still sleep poorly unless I take Tylenol to supplement the previous morning's Mobic. I am hopeful that as I get stronger in the pelvic girdle muscles that my pain will decrease, but I definitely want to have more options open if the pain doesn't eventually subside.

I also appreciate the heads-up about the surgeon's perspective...and that our conversation will likely be weighing surgery possibilities. I will know better what to expect. I am really rather "green" in regards to surgeons despite having had surgery as a teen and also my thyroid removal surgery. I have more often dealt with maintenance type doctors (allergists, etc.).

Thank you so much, Cam, for sharing from your experience. It means a lot to me.

Diane

Michigan

Diane,I suspect your fear of DrKasten being angry with you will turn out tobe unfounded.I think the experience you had with Kane-Smart probably jaded yourview of what a professional medical person normally acts like. Youdeserve the attention and concern of any doctor that you see. Youdeserve to be taken seriously, and to have the opportunity toestablish a relationship with a doctor who can realistically monitoryou for changes and think about your condition with respect to the"long term".Keep in mind however, that surgeons do surgery. It may seem somewhatridiculous to say that, but just expect your conversation to prettymuch revolve around that perspective, if you understand what I amsaying. Within that context, realize that no surgeon should EVERrecommmend surgery unless they truely feel that the patient willbenefit. Thats the oath they take. And a busy, highy respected surgeonis never going to trip over any fuzzy lines here. It can take time to find the doctor that you feel most comfortablewith. recognize that it is at least possible that you are going toneed surgery in the future, and using your time now to establish arelationship while you are still functioning reasonably well is not abad thing. If you get a different feeling, or just don't like thisdoctor, it is far better to know this now, then at a future date whenyou feel like your back is against the wall and pain is making itdifficult to even contemplate travelling to consult a prospectivesurgeon. That I say from experience!Take Care, Cam

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January 24, 2009

Llweyn, great to "see" you.

My '70's era records are quite detailed, and the terms used

consistently throughout them are "dorsal" and "lumbar", so I'm pretty

sure "dorsal" was used to mean "thoracic". Perhaps Diane's records

represent a time when the term "thoracic" was emerging as the term of

choice, as it is more accurate scientifically.

Sharon

PS: Hey, how about this for a T-shirt cartoon? A dinosaur skeleton

with spinal hardware and the caption "Thoracic Park".

Llweyn Friars wrote:

Sorry Diane, I'm just catching up on my e-mails.

Using both terms within one sentence could also mean the

region below the thoracic as dorsal and was probably a different range

than it is termed now. Don't forget that the world of medicine is

continually changing and so is the termology evolving.

As to the lose of degrees, I had one surgeon tell me that even a fused spine can progress 1 degree per year, so over 29 years that

would be 29 degrees and that is considered within

acceptable range! Yeah, I wonder acceptable for who?

That's not acceptable for me, since I was corrected for 102 down to 32

before surgery, and stayed at 32 after surgery. After 36 years,

acceptable would put my curve at 48 degrees! Yikes, that's close to

today's mandatory original surgery! No wonder I'm having sleep apnea

and chronic pain. The muscles are continually fighting to stay in

proper alignment. I bet most doctors don't think of that when they tell

us that there's nothing wrong with the implant, so we should be

complaining.

That's my 2 cents worth of sounding off, too.

Llweyn

From:

[mailto:Flatback_ Revised@gro ups.com] On Behalf Of Diane

B Van Der Werff

Sent: January 18, 2009 5:13 AM

Subject: Re: [ ] Disappointed with my records