Re: appt yesterday lead to INTENSE frustration!!!

[Guest guest]

, I have a good idea how you feel, because this was essentially how I

felt after visiting a certain physiatrist at NEB.

Now, am I correct in assuming you are talking about a surgeon with the initials

F. R.? If so, this is a bit disquieting, but not inconsistent with at least one

other account I've seen of this doc on an off day. I'm SURE there are members

of this group who had surgery when they were not leaning forward badly, but just

having pain. I hope you folks will respond here...

I have just one more comment. Dr. R. is a surgeon. If you want pain management

you probably should see a pain specialist. Or even your internist. Mine has me

on a cocktail of Elavil (50mg) and Celebrex, which combined with exercise and

massage helps me quite a bit. I'm sorry to hear you were less than happy with

this visit. I wish you the best on this.

Sharon

appt yesterday lead to INTENSE frustration!!!

Hi Friends,

I am normally upbeat and think highly of my spine surgeon in Boston.

However, yesterday was the absolute pits for me! I've hit rock

bottom.

First off, I'll be going to physical therapy Monday. Good thing

number one. Good thing number 2, there seems to be no visible signs

of nerve damage or disc damage.

OK...here I go. (Be warned, if you cannot deal with

negativity...stop right here. I'm a bit irked. I think this is the

4th time in my life this level of frustration has happened.)

I drove in to Boston yesterday which was a 140 mile trip one way. I

did it solo. Can you say

AAAAAAAAAAAAARRRRRRRRRRRGGGGGGGGGHHHHHHHHHHH!!! I get to NEBH and

have the MRI. It hurt like #@!#%$^ lying on that flat surface. So I

prayed the ry, pretending the call/panick button was a string of

beads. HAHAAAAAAA!!! Yup, I set it off once...oops! Anyway, the die

was put in for separating pix of scar tissue from normal tissue. The

dude injecting didn't do it gently. @!#^ & !

After the MRI, I had x-rays taken. That went well.

I finally go upstairs to see my doc and I'm telling myself I'm

agitated because of the long drive to the hospital as well as

dreading the drive back home.

Good thing #3, the new secretary is a GEM! Awesome gal! HOORAY!!!

The doc comes in. He remembers me totally. KEWL! I tell him about

the 9 pound 11 ounce baby born 6 months ago and this is #4. (he

thought we were on #2) He proceeds to tell me my posture is good, not

leaning forward like most. However, I show him the bruises on my

thighs from leaning on my thighs using my elbows every time I am

sitting.

I don't want to slam the doc because I believe he is golden, so I

will wrap this up with a brief summation. I am remaining open to the

possibility the long drive took me over mentally. However, it doesn't

change the fact I'm confused, frustrated, and making my husband at a

loss as to what to do/say for me.

The surgeon's advice;

1) I shouldn't have surgery until after the baby is 1 year old,

because my body needs to adjust back in to shape and I am heavier

than he remembers me from 4 years ago. (I am 144 pounds, 5'5 " ...used

to be 124 pounds. Gee thanks ALLLL-OT!!!)

2) I should get in to some intense physical therapy, the kind where

one works out to the point of muscles burning and the feeling of

a " workout high. " He is almost certain I'll be nearly pain free if I

take that route.

3) My posture is not bent forward nor am I on a walker. He repeated

this numerous times. I felt like he should have just said to

me, " Since your not using a walker or leaning forward when you walk,

your pain is not to the level of others I have seen and operated

on. "

4) When I asked what to do for pain management he asked what am I

doing now? I replied " Going out of my mind with pain throughout my

days. Especially evening time. " He then proceeds to tell me why

patients should not be on narcotics if they're thinking about

surgery. I felt soooo stupid when he said that. I wasn't talking

narcotics, I was talking injections. But so what if I was talking

narcotics? I see nothing wrong with a person resorting to pain meds

as such. Maybe not all day every day. Let's face it, some days are

better than others. Anyhow, I just shut my mouth for fear of

sounding " defensive " on topic. ARGH!!!

5) To have the surgery or not is my choice.

So...now I'm confused and feel as if I should be on a walker or

something before I decide to have the surgery. I'm not going to rush

out tomorrow and get it done, but I feel a bit of shame after this

visit and I cannot define why. Perhaps it was the taxing drive or

perhaps the doc has seen worse and truly believes I'm not a surgical

candidate. I left his care 4 years prior when I was diagnosed with

flatback because his secretary was a meanie. (I'm not calling him a

meanie, maybe he just had a bad day yesterday. He's entitled.)

About 2 months ago I saw a Sports Ortho here in CT who tells me

there is no help for me other than surgery. Simply because this is

a " structural " problem. That appt scared me because he was ready to

operate ASAP and I'm not because of having little ones and no family

nearby. Plus, he's not referred to as one of the 'revision experts'

mentioned.

Anyhow, I said I was going to keep this brief. I suppose I could

bitch all day long about yesterday's fiasco. I am certain of 2

things;

1)I hurt and it is getting worse.

2)I do not want any long term damage.

I'm not sure if I am venting because I feel isolated or insulted.

Maybe both.

It comforts me to know I'm not the only flatbacker in the world, and

flatback DOES get worse over time. I'm in the midst of progression,

unfortunately. Anybody else out there with severe pain who is not

leaning forward drastically?

Thanks for being here and thanks to for this group. I feel

better just typing this story. It gets my feelings out, even if my

feelings are not easily understood or if I sound contradictory.

I think I'll go to the high school gym for an intense swim. Sounds

nice.

xoxo's

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

[Guest guest]

- I certainly sympathize with your situation and you are right - being

alone and driving so far and having the tests and films done before you ever got

to the doc was surely harder on you than you realize - I think many of us are

" doers " and can tend to downplay pain, stress, etc. And of course, docs do have

bad days.

DON't second guess yourself. You are doing the right thing to research your

problem and make an informed decision. The timing is up to YOU and your family.

I wasn't leaning over terribly but was experiencing INCREASING pain that sounds

like you are - ie - enough to make me sit up and take notice and find out my

options. Once I learned the only permanent fix was surgery, i was ready to go

ahead. The next steps were picking the right surgeons and determining right

timing. Like you, I figured better sooner than later to prevent further damage,

etc.

All docs will probably emphasize that it (revision) is an " elective " surgery in

the sense that flatback is not lifethreatening-- you could stay uncorrected and

just go insane, right?! All 4 I talked to made this point.

And also, I think it's important to realize that often 1 person cannot provide

you with everything - you may need a great surgeon, a SEPARATE pain mgmnt, PT

etc. It has been only lately that I have realized this.

To make you feel better, here's how much of a wuss I was today! I sent my 3

month post op films to my doc and was to speak with him about them today. I

just didn't call him because i didn't want to deal with hearing about limits, no

painmeds, etc etc. Finally my hubby called to check on me and called the doc

himself and conferenced me in. I felt like a 6 yr old.

Keep your head up - you'll know the right course of action when it presents

itself.

> From: " curvedlady " <USNAWIFE@...>

> Date: 2004/04/23 Fri PM 03:10:30 EDT

>

> Subject: appt yesterday lead to INTENSE frustration!!!

>

> Hi Friends,

> I am normally upbeat and think highly of my spine surgeon in Boston.

> However, yesterday was the absolute pits for me! I've hit rock

> bottom.

> First off, I'll be going to physical therapy Monday. Good thing

> number one. Good thing number 2, there seems to be no visible signs

> of nerve damage or disc damage.

> OK...here I go. (Be warned, if you cannot deal with

> negativity...stop right here. I'm a bit irked. I think this is the

> 4th time in my life this level of frustration has happened.)

> I drove in to Boston yesterday which was a 140 mile trip one way. I

> did it solo. Can you say

> AAAAAAAAAAAAARRRRRRRRRRRGGGGGGGGGHHHHHHHHHHH!!! I get to NEBH and

> have the MRI. It hurt like #@!#%$^ lying on that flat surface. So I

> prayed the ry, pretending the call/panick button was a string of

> beads. HAHAAAAAAA!!! Yup, I set it off once...oops! Anyway, the die

> was put in for separating pix of scar tissue from normal tissue. The

> dude injecting didn't do it gently. @!#^ & !

> After the MRI, I had x-rays taken. That went well.

> I finally go upstairs to see my doc and I'm telling myself I'm

> agitated because of the long drive to the hospital as well as

> dreading the drive back home.

> Good thing #3, the new secretary is a GEM! Awesome gal! HOORAY!!!

> The doc comes in. He remembers me totally. KEWL! I tell him about

> the 9 pound 11 ounce baby born 6 months ago and this is #4. (he

> thought we were on #2) He proceeds to tell me my posture is good, not

> leaning forward like most. However, I show him the bruises on my

> thighs from leaning on my thighs using my elbows every time I am

> sitting.

> I don't want to slam the doc because I believe he is golden, so I

> will wrap this up with a brief summation. I am remaining open to the

> possibility the long drive took me over mentally. However, it doesn't

> change the fact I'm confused, frustrated, and making my husband at a

> loss as to what to do/say for me.

> The surgeon's advice;

> 1) I shouldn't have surgery until after the baby is 1 year old,

> because my body needs to adjust back in to shape and I am heavier

> than he remembers me from 4 years ago. (I am 144 pounds, 5'5 " ...used

> to be 124 pounds. Gee thanks ALLLL-OT!!!)

>

> 2) I should get in to some intense physical therapy, the kind where

> one works out to the point of muscles burning and the feeling of

> a " workout high. " He is almost certain I'll be nearly pain free if I

> take that route.

>

> 3) My posture is not bent forward nor am I on a walker. He repeated

> this numerous times. I felt like he should have just said to

> me, " Since your not using a walker or leaning forward when you walk,

> your pain is not to the level of others I have seen and operated

> on. "

>

> 4) When I asked what to do for pain management he asked what am I

> doing now? I replied " Going out of my mind with pain throughout my

> days. Especially evening time. " He then proceeds to tell me why

> patients should not be on narcotics if they're thinking about

> surgery. I felt soooo stupid when he said that. I wasn't talking

> narcotics, I was talking injections. But so what if I was talking

> narcotics? I see nothing wrong with a person resorting to pain meds

> as such. Maybe not all day every day. Let's face it, some days are

> better than others. Anyhow, I just shut my mouth for fear of

> sounding " defensive " on topic. ARGH!!!

>

> 5) To have the surgery or not is my choice.

>

> So...now I'm confused and feel as if I should be on a walker or

> something before I decide to have the surgery. I'm not going to rush

> out tomorrow and get it done, but I feel a bit of shame after this

> visit and I cannot define why. Perhaps it was the taxing drive or

> perhaps the doc has seen worse and truly believes I'm not a surgical

> candidate. I left his care 4 years prior when I was diagnosed with

> flatback because his secretary was a meanie. (I'm not calling him a

> meanie, maybe he just had a bad day yesterday. He's entitled.)

>

> About 2 months ago I saw a Sports Ortho here in CT who tells me

> there is no help for me other than surgery. Simply because this is

> a " structural " problem. That appt scared me because he was ready to

> operate ASAP and I'm not because of having little ones and no family

> nearby. Plus, he's not referred to as one of the 'revision experts'

> mentioned.

>

> Anyhow, I said I was going to keep this brief. I suppose I could

> bitch all day long about yesterday's fiasco. I am certain of 2

> things;

> 1)I hurt and it is getting worse.

> 2)I do not want any long term damage.

>

> I'm not sure if I am venting because I feel isolated or insulted.

> Maybe both.

> It comforts me to know I'm not the only flatbacker in the world, and

> flatback DOES get worse over time. I'm in the midst of progression,

> unfortunately. Anybody else out there with severe pain who is not

> leaning forward drastically?

> Thanks for being here and thanks to for this group. I feel

> better just typing this story. It gets my feelings out, even if my

> feelings are not easily understood or if I sound contradictory.

> I think I'll go to the high school gym for an intense swim. Sounds

> nice.

> xoxo's

>

>

>

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

>

[Guest guest]

Hi ,

Boy, can I sympathize/empathize with your situation. It is so

hard when you run into brick walls dealing with the medical

profession but you just have to keep on fighting to get what you

want. I ran into the same thing with the young doctor who took over

when my wonderful ortho surgeon retired. My biggest complaint for

the past year has been leg pain and varying degrees of numbness and

tingling. When the young doc told me " there's nothing more we can do

for you " I felt like I was punched in the stomach. After writing

letters an getting referrals I am currently seeing another young doc

in the same practice but what a difference. He really listens and

treats me like a person and not just another crooked back.

I have had an MRI and myelogram which showed that all hardware

is in place, there is no nerve entrapment and no stenosis. So why

all the pain? The nerve pain could be arachnoiditis, the muscular

pain is just from the change in my gait. Anyway, new doc referred me

to a pain clinic and also for PT which I started today.

I agree with Sharon that we have to remember that these revision

docs are surgeons. Surgery is what they do and you sometimes have to

really make a good case for yourself to get referrals for pain

management. I'm hoping that once I start seeing the pain doc I won't

need continual referrals for treatment. If I do, I'll just fight for

it.

It's too bad your husband wasn't with you when you went to

Boston. My husband makes a point of going with me to all of my ortho

appointments. He has seen how some docs try to brush you off, and if

I don't say something he will. He truly has been my advocate. It

also helps to have someone else with you because if you are like me,

I don't always remember a lot of what they say especially if I'm

under a lot of stress. Hope that makes sense.

Try to relax this weekend and spend a little time outdoors and

enjoy the spring weather.

Barbara

> Hi Friends,

> I am normally upbeat and think highly of my spine surgeon in

Boston.

> However, yesterday was the absolute pits for me! I've hit rock

> bottom.

> First off, I'll be going to physical therapy Monday. Good thing

> number one. Good thing number 2, there seems to be no visible signs

> of nerve damage or disc damage.

> OK...here I go. (Be warned, if you cannot deal with

> negativity...stop right here. I'm a bit irked. I think this is the

> 4th time in my life this level of frustration has happened.)

> I drove in to Boston yesterday which was a 140 mile trip one way.

I

> did it solo. Can you say

> AAAAAAAAAAAAARRRRRRRRRRRGGGGGGGGGHHHHHHHHHHH!!! I get to NEBH and

> have the MRI. It hurt like #@!#%$^ lying on that flat surface. So I

> prayed the ry, pretending the call/panick button was a string

of

> beads. HAHAAAAAAA!!! Yup, I set it off once...oops! Anyway, the die

> was put in for separating pix of scar tissue from normal tissue.

The

> dude injecting didn't do it gently. @!#^ & !

> After the MRI, I had x-rays taken. That went well.

> I finally go upstairs to see my doc and I'm telling myself I'm

> agitated because of the long drive to the hospital as well as

> dreading the drive back home.

> Good thing #3, the new secretary is a GEM! Awesome gal! HOORAY!!!

> The doc comes in. He remembers me totally. KEWL! I tell him about

> the 9 pound 11 ounce baby born 6 months ago and this is #4. (he

> thought we were on #2) He proceeds to tell me my posture is good,

not

> leaning forward like most. However, I show him the bruises on my

> thighs from leaning on my thighs using my elbows every time I am

> sitting.

> I don't want to slam the doc because I believe he is golden, so I

> will wrap this up with a brief summation. I am remaining open to

the

> possibility the long drive took me over mentally. However, it

doesn't

> change the fact I'm confused, frustrated, and making my husband at

a

> loss as to what to do/say for me.

> The surgeon's advice;

> 1) I shouldn't have surgery until after the baby is 1 year old,

> because my body needs to adjust back in to shape and I am heavier

> than he remembers me from 4 years ago. (I am 144 pounds,

5'5 " ...used

> to be 124 pounds. Gee thanks ALLLL-OT!!!)

>

> 2) I should get in to some intense physical therapy, the kind where

> one works out to the point of muscles burning and the feeling of

> a " workout high. " He is almost certain I'll be nearly pain free if

I

> take that route.

>

> 3) My posture is not bent forward nor am I on a walker. He repeated

> this numerous times. I felt like he should have just said to

> me, " Since your not using a walker or leaning forward when you

walk,

> your pain is not to the level of others I have seen and operated

> on. "

>

> 4) When I asked what to do for pain management he asked what am I

> doing now? I replied " Going out of my mind with pain throughout my

> days. Especially evening time. " He then proceeds to tell me why

> patients should not be on narcotics if they're thinking about

> surgery. I felt soooo stupid when he said that. I wasn't talking

> narcotics, I was talking injections. But so what if I was talking

> narcotics? I see nothing wrong with a person resorting to pain meds

> as such. Maybe not all day every day. Let's face it, some days are

> better than others. Anyhow, I just shut my mouth for fear of

> sounding " defensive " on topic. ARGH!!!

>

> 5) To have the surgery or not is my choice.

>

> So...now I'm confused and feel as if I should be on a walker or

> something before I decide to have the surgery. I'm not going to

rush

> out tomorrow and get it done, but I feel a bit of shame after this

> visit and I cannot define why. Perhaps it was the taxing drive or

> perhaps the doc has seen worse and truly believes I'm not a

surgical

> candidate. I left his care 4 years prior when I was diagnosed with

> flatback because his secretary was a meanie. (I'm not calling him a

> meanie, maybe he just had a bad day yesterday. He's entitled.)

>

> About 2 months ago I saw a Sports Ortho here in CT who tells me

> there is no help for me other than surgery. Simply because this is

> a " structural " problem. That appt scared me because he was ready to

> operate ASAP and I'm not because of having little ones and no

family

> nearby. Plus, he's not referred to as one of the 'revision experts'

> mentioned.

>

> Anyhow, I said I was going to keep this brief. I suppose I could

> bitch all day long about yesterday's fiasco. I am certain of 2

> things;

> 1)I hurt and it is getting worse.

> 2)I do not want any long term damage.

>

> I'm not sure if I am venting because I feel isolated or insulted.

> Maybe both.

> It comforts me to know I'm not the only flatbacker in the world,

and

> flatback DOES get worse over time. I'm in the midst of progression,

> unfortunately. Anybody else out there with severe pain who is not

> leaning forward drastically?

> Thanks for being here and thanks to for this group. I

feel

> better just typing this story. It gets my feelings out, even if my

> feelings are not easily understood or if I sound contradictory.

> I think I'll go to the high school gym for an intense swim. Sounds

> nice.

> xoxo's

>

[Guest guest]

Hi ,

Oh boy, did you go through a lot. I can't even imagine having an

exhausting, painful MRI, and then facing a doctor, especially alone

without my husband there to bolster me up.

It's to your credit that you can even recognize the good things, much

less start off your post with them.

I've had experiences like yours where the first time or two you see

the doctor, he's great, and then a subsequent visit is not so great.

I've also had just the opposite, where I think the guy is an a**hole

at first, but then he softens up a bit when he realizes I'm

persistent about finding a solution that will work for me. You're

right, yours could have been having a bad day. I don't think I

remember enough about your situation to comment on the pain without

leaning forward thing. If you don't have any damaged disks, and

you're not leaning forward, exactly where is your pain? Were you the

person who was also having hip pain? Did you ever get your hips x-

rayed? Did you get a copy of your MRI report? I wonder what your

doctor considers bad leaning forward? Did you make sure to lock your

knees back when you had your standing lateral (sideways) x-rays?

I've found some x-ray techs neglect to tell the patients to do that.

The first doctor I saw measured my leaning forward as 12 cm, and the

second looked at the same x-rays and measured 16 cm. I liked the

first one better!!!

Also, I'm glad you're excited about physical therapy and hope it

helps you. I do like going to mine for my hip, but can't imagine

working out with the feel the burn mentality for my spine. I wonder

if he has other patients for whom this strategy has worked. Would

you mind sharing what types of things your physical therapy

includes? Co-incidentally, I am going to start physical therapy for

my spine this coming week.

When I asked the first spine doc that I saw if there was anything I

could do to be more comfortable until I decided to have surgery, I

got a resounding NO. Personally, I think that was the stupidest

thing he said to me. But then again, he's a surgeon and believes

that surgery is the only remedy. I agree with the other poster that

you'll get a better answer from your GP. But you may have to educate

them on flatback in order for them to help you. Any doctor who is

not willing to prescribe the pain meds a patient needs or at least

refer them to someone who can is not worth seeing in my view, and

would either get fired by me and or would have me tell him in no

uncertain terms that I think he needs to spend some time recalling

why he became a doctor in the first place.

For the next person that you talk with about pain meds, you may want

to write down the list of medicines (over the counter, I assume)

that you've tried to relieve your pain, and hand it to them. When I

did this for my hip, I had such a huge list, that the doc smiled and

said " Ah, you've had all the different medications-- beyond that,

it's surgery...

And I wouldn't shut my mouth if I were you on the topic. You're in

pain, you deserve some relief. Instead of shutting your mouth, I'd

take a deep breath, look puzzled at him, and ask if you could discuss

the topic in more detail because you're not sure he's clear on your

concerns.

I think your question about whether or not you are a surgical

candidate is a very valid one, and he should be able to tell you if

he absolutely wouldn't operate until after your baby is one, and if

he would operate soon after that. And if there could be any long

term damage by waiting to have surgery. You sound like me, after you

get out of the doctor office you think of tons more questions you

wished you'd asked him. I have learned to never leave a doctor's

office without asking how I can get any additional questions I think

of answered.

This next thought I'll put gently. You sound like a person who likes

to get things done and over with. I'm sure that our pains are not

quite the same, but I wonder if our fears are -- kind of like - phew

I managed the pain today, but what if I can't tomorrow???? I

absolutely want to avoid being in that position. It's a real

stressful fear that I've been dealing with for several years since I

learned that flatback syndrome was the cause of many of the symtoms

I've had for years. I can't remember if you've seen any other

doctors who are experienced in revision surgery to correct flatback,

but you may want to consider doing so. I've seen two and plan on

seeing at least one more. They don't necessarily have to be on

the " list " of doctors as long as they have experience doing this

particular surgery and have good outcome statistics. Did you talk to

your sports doctor about his experience?

I'm really tired tonight and am not sure if what I've wrote makes

sense. All I really know is that it is so unfortunate that so many

of us have to go through all of this on our path to get some help. I

really wish you the best , and am sorry it's all so

frustrating. Hope your swim helped and if I've asked questions that

you've already answered in previous posts, just ignore me - I have a

terrrible memory.....,

loriann

> Hi Friends,

> I am normally upbeat and think highly of my spine surgeon in

Boston.

> However, yesterday was the absolute pits for me! I've hit rock

> bottom.

> First off, I'll be going to physical therapy Monday. Good thing

> number one. Good thing number 2, there seems to be no visible signs

> of nerve damage or disc damage.

> OK...here I go. (Be warned, if you cannot deal with

> negativity...stop right here. I'm a bit irked. I think this is the

> 4th time in my life this level of frustration has happened.)

> I drove in to Boston yesterday which was a 140 mile trip one way.

I

> did it solo. Can you say

> AAAAAAAAAAAAARRRRRRRRRRRGGGGGGGGGHHHHHHHHHHH!!! I get to NEBH and

> have the MRI. It hurt like #@!#%$^ lying on that flat surface. So I

> prayed the ry, pretending the call/panick button was a string

of

> beads. HAHAAAAAAA!!! Yup, I set it off once...oops! Anyway, the die

> was put in for separating pix of scar tissue from normal tissue.

The

> dude injecting didn't do it gently. @!#^ & !

> After the MRI, I had x-rays taken. That went well.

> I finally go upstairs to see my doc and I'm telling myself I'm

> agitated because of the long drive to the hospital as well as

> dreading the drive back home.

> Good thing #3, the new secretary is a GEM! Awesome gal! HOORAY!!!

> The doc comes in. He remembers me totally. KEWL! I tell him about

> the 9 pound 11 ounce baby born 6 months ago and this is #4. (he

> thought we were on #2) He proceeds to tell me my posture is good,

not

> leaning forward like most. However, I show him the bruises on my

> thighs from leaning on my thighs using my elbows every time I am

> sitting.

> I don't want to slam the doc because I believe he is golden, so I

> will wrap this up with a brief summation. I am remaining open to

the

> possibility the long drive took me over mentally. However, it

doesn't

> change the fact I'm confused, frustrated, and making my husband at

a

> loss as to what to do/say for me.

> The surgeon's advice;

> 1) I shouldn't have surgery until after the baby is 1 year old,

> because my body needs to adjust back in to shape and I am heavier

> than he remembers me from 4 years ago. (I am 144 pounds,

5'5 " ...used

> to be 124 pounds. Gee thanks ALLLL-OT!!!)

>

> 2) I should get in to some intense physical therapy, the kind where

> one works out to the point of muscles burning and the feeling of

> a " workout high. " He is almost certain I'll be nearly pain free if

I

> take that route.

>

> 3) My posture is not bent forward nor am I on a walker. He repeated

> this numerous times. I felt like he should have just said to

> me, " Since your not using a walker or leaning forward when you

walk,

> your pain is not to the level of others I have seen and operated

> on. "

>

> 4) When I asked what to do for pain management he asked what am I

> doing now? I replied " Going out of my mind with pain throughout my

> days. Especially evening time. " He then proceeds to tell me why

> patients should not be on narcotics if they're thinking about

> surgery. I felt soooo stupid when he said that. I wasn't talking

> narcotics, I was talking injections. But so what if I was talking

> narcotics? I see nothing wrong with a person resorting to pain meds

> as such. Maybe not all day every day. Let's face it, some days are

> better than others. Anyhow, I just shut my mouth for fear of

> sounding " defensive " on topic. ARGH!!!

>

> 5) To have the surgery or not is my choice.

>

> So...now I'm confused and feel as if I should be on a walker or

> something before I decide to have the surgery. I'm not going to

rush

> out tomorrow and get it done, but I feel a bit of shame after this

> visit and I cannot define why. Perhaps it was the taxing drive or

> perhaps the doc has seen worse and truly believes I'm not a

surgical

> candidate. I left his care 4 years prior when I was diagnosed with

> flatback because his secretary was a meanie. (I'm not calling him a

> meanie, maybe he just had a bad day yesterday. He's entitled.)

>

> About 2 months ago I saw a Sports Ortho here in CT who tells me

> there is no help for me other than surgery. Simply because this is

> a " structural " problem. That appt scared me because he was ready to

> operate ASAP and I'm not because of having little ones and no

family

> nearby. Plus, he's not referred to as one of the 'revision experts'

> mentioned.

>

> Anyhow, I said I was going to keep this brief. I suppose I could

> bitch all day long about yesterday's fiasco. I am certain of 2

> things;

> 1)I hurt and it is getting worse.

> 2)I do not want any long term damage.

>

> I'm not sure if I am venting because I feel isolated or insulted.

> Maybe both.

> It comforts me to know I'm not the only flatbacker in the world,

and

> flatback DOES get worse over time. I'm in the midst of progression,

> unfortunately. Anybody else out there with severe pain who is not

> leaning forward drastically?

> Thanks for being here and thanks to for this group. I

feel

> better just typing this story. It gets my feelings out, even if my

> feelings are not easily understood or if I sound contradictory.

> I think I'll go to the high school gym for an intense swim. Sounds

> nice.

> xoxo's

>

[Guest guest]

Hey , Just got done reading your post, don't blame you for being mad, I

have a lot of pain with my back and Iam not leaning forward that much either. My

neck and lower hip bothers me the most , and like you , I don't know if I want

the surgery either cause I have 2 little one's too, youngest only 5 months old

and Iam about the same as you 5'4 " and 130 and I have no family near that can

help out. So I feel your frustration. Iam just now going back to see a doctor

again since about 5 years ago, and I know after have a child your back does get

worse. But tell ya the truth I don't think weight should have much to do with

surgery or not. Not sure on that subject I had a doctor tell me I was too skinny

for the rod in my back and I need to gain weight and that was when I weighed

120. Just know that your not alone, hope this is some help. conny

appt yesterday lead to INTENSE frustration!!!

Hi Friends,

I am normally upbeat and think highly of my spine surgeon in Boston.

However, yesterday was the absolute pits for me! I've hit rock

bottom.

First off, I'll be going to physical therapy Monday. Good thing

number one. Good thing number 2, there seems to be no visible signs

of nerve damage or disc damage.

OK...here I go. (Be warned, if you cannot deal with

negativity...stop right here. I'm a bit irked. I think this is the

4th time in my life this level of frustration has happened.)

I drove in to Boston yesterday which was a 140 mile trip one way. I

did it solo. Can you say

AAAAAAAAAAAAARRRRRRRRRRRGGGGGGGGGHHHHHHHHHHH!!! I get to NEBH and

have the MRI. It hurt like #@!#%$^ lying on that flat surface. So I

prayed the ry, pretending the call/panick button was a string of

beads. HAHAAAAAAA!!! Yup, I set it off once...oops! Anyway, the die

was put in for separating pix of scar tissue from normal tissue. The

dude injecting didn't do it gently. @!#^ & !

After the MRI, I had x-rays taken. That went well.

I finally go upstairs to see my doc and I'm telling myself I'm

agitated because of the long drive to the hospital as well as

dreading the drive back home.

Good thing #3, the new secretary is a GEM! Awesome gal! HOORAY!!!

The doc comes in. He remembers me totally. KEWL! I tell him about

the 9 pound 11 ounce baby born 6 months ago and this is #4. (he

thought we were on #2) He proceeds to tell me my posture is good, not

leaning forward like most. However, I show him the bruises on my

thighs from leaning on my thighs using my elbows every time I am

sitting.

I don't want to slam the doc because I believe he is golden, so I

will wrap this up with a brief summation. I am remaining open to the

possibility the long drive took me over mentally. However, it doesn't

change the fact I'm confused, frustrated, and making my husband at a

loss as to what to do/say for me.

The surgeon's advice;

1) I shouldn't have surgery until after the baby is 1 year old,

because my body needs to adjust back in to shape and I am heavier

than he remembers me from 4 years ago. (I am 144 pounds, 5'5 " ...used

to be 124 pounds. Gee thanks ALLLL-OT!!!)

2) I should get in to some intense physical therapy, the kind where

one works out to the point of muscles burning and the feeling of

a " workout high. " He is almost certain I'll be nearly pain free if I

take that route.

3) My posture is not bent forward nor am I on a walker. He repeated

this numerous times. I felt like he should have just said to

me, " Since your not using a walker or leaning forward when you walk,

your pain is not to the level of others I have seen and operated

on. "

4) When I asked what to do for pain management he asked what am I

doing now? I replied " Going out of my mind with pain throughout my

days. Especially evening time. " He then proceeds to tell me why

patients should not be on narcotics if they're thinking about

surgery. I felt soooo stupid when he said that. I wasn't talking

narcotics, I was talking injections. But so what if I was talking

narcotics? I see nothing wrong with a person resorting to pain meds

as such. Maybe not all day every day. Let's face it, some days are

better than others. Anyhow, I just shut my mouth for fear of

sounding " defensive " on topic. ARGH!!!

5) To have the surgery or not is my choice.

So...now I'm confused and feel as if I should be on a walker or

something before I decide to have the surgery. I'm not going to rush

out tomorrow and get it done, but I feel a bit of shame after this

visit and I cannot define why. Perhaps it was the taxing drive or

perhaps the doc has seen worse and truly believes I'm not a surgical

candidate. I left his care 4 years prior when I was diagnosed with

flatback because his secretary was a meanie. (I'm not calling him a

meanie, maybe he just had a bad day yesterday. He's entitled.)

About 2 months ago I saw a Sports Ortho here in CT who tells me

there is no help for me other than surgery. Simply because this is

a " structural " problem. That appt scared me because he was ready to

operate ASAP and I'm not because of having little ones and no family

nearby. Plus, he's not referred to as one of the 'revision experts'

mentioned.

Anyhow, I said I was going to keep this brief. I suppose I could

bitch all day long about yesterday's fiasco. I am certain of 2

things;

1)I hurt and it is getting worse.

2)I do not want any long term damage.

I'm not sure if I am venting because I feel isolated or insulted.

Maybe both.

It comforts me to know I'm not the only flatbacker in the world, and

flatback DOES get worse over time. I'm in the midst of progression,

unfortunately. Anybody else out there with severe pain who is not

leaning forward drastically?

Thanks for being here and thanks to for this group. I feel

better just typing this story. It gets my feelings out, even if my

feelings are not easily understood or if I sound contradictory.

I think I'll go to the high school gym for an intense swim. Sounds

nice.

xoxo's

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

[Guest guest]

Hi ,

I agree with the others to keep pressing for answers and possibly seeing a

pain specialist for the pain management part. My concern is that since you

recently (under a year) had a baby, your body is still going through changes

from the pregnancy and birth. If you can hold out, I would wait the year

before going through another major body change (revision surgery) to give

yourself a chance for recovery and possible better results/recovery period.

It is a lot to ask when you're hurting but I was thinking of the overall

experience and the best and shortest recovery period. Just a thought on my

part, but everyone is different and their recovery/experiences are

different.

Llweyn in BC

appt yesterday lead to INTENSE frustration!!!

Hi Friends,

I am normally upbeat and think highly of my spine surgeon in Boston.

However, yesterday was the absolute pits for me! I've hit rock

bottom.

First off, I'll be going to physical therapy Monday. Good thing

number one. Good thing number 2, there seems to be no visible signs

of nerve damage or disc damage.

OK...here I go. (Be warned, if you cannot deal with

negativity...stop right here. I'm a bit irked. I think this is the

4th time in my life this level of frustration has happened.)

I drove in to Boston yesterday which was a 140 mile trip one way. I

did it solo. Can you say

AAAAAAAAAAAAARRRRRRRRRRRGGGGGGGGGHHHHHHHHHHH!!! I get to NEBH and

have the MRI. It hurt like #@!#%$^ lying on that flat surface. So I

prayed the ry, pretending the call/panick button was a string of

beads. HAHAAAAAAA!!! Yup, I set it off once...oops! Anyway, the die

was put in for separating pix of scar tissue from normal tissue. The

dude injecting didn't do it gently. @!#^ & !

After the MRI, I had x-rays taken. That went well.

I finally go upstairs to see my doc and I'm telling myself I'm

agitated because of the long drive to the hospital as well as

dreading the drive back home.

Good thing #3, the new secretary is a GEM! Awesome gal! HOORAY!!!

The doc comes in. He remembers me totally. KEWL! I tell him about

the 9 pound 11 ounce baby born 6 months ago and this is #4. (he

thought we were on #2) He proceeds to tell me my posture is good, not

leaning forward like most. However, I show him the bruises on my

thighs from leaning on my thighs using my elbows every time I am

sitting.

I don't want to slam the doc because I believe he is golden, so I

will wrap this up with a brief summation. I am remaining open to the

possibility the long drive took me over mentally. However, it doesn't

change the fact I'm confused, frustrated, and making my husband at a

loss as to what to do/say for me.

The surgeon's advice;

1) I shouldn't have surgery until after the baby is 1 year old,

because my body needs to adjust back in to shape and I am heavier

than he remembers me from 4 years ago. (I am 144 pounds, 5'5 " ...used

to be 124 pounds. Gee thanks ALLLL-OT!!!)

2) I should get in to some intense physical therapy, the kind where

one works out to the point of muscles burning and the feeling of

a " workout high. " He is almost certain I'll be nearly pain free if I

take that route.

3) My posture is not bent forward nor am I on a walker. He repeated

this numerous times. I felt like he should have just said to

me, " Since your not using a walker or leaning forward when you walk,

your pain is not to the level of others I have seen and operated

on. "

4) When I asked what to do for pain management he asked what am I

doing now? I replied " Going out of my mind with pain throughout my

days. Especially evening time. " He then proceeds to tell me why

patients should not be on narcotics if they're thinking about

surgery. I felt soooo stupid when he said that. I wasn't talking

narcotics, I was talking injections. But so what if I was talking

narcotics? I see nothing wrong with a person resorting to pain meds

as such. Maybe not all day every day. Let's face it, some days are

better than others. Anyhow, I just shut my mouth for fear of

sounding " defensive " on topic. ARGH!!!

5) To have the surgery or not is my choice.

So...now I'm confused and feel as if I should be on a walker or

something before I decide to have the surgery. I'm not going to rush

out tomorrow and get it done, but I feel a bit of shame after this

visit and I cannot define why. Perhaps it was the taxing drive or

perhaps the doc has seen worse and truly believes I'm not a surgical

candidate. I left his care 4 years prior when I was diagnosed with

flatback because his secretary was a meanie. (I'm not calling him a

meanie, maybe he just had a bad day yesterday. He's entitled.)

About 2 months ago I saw a Sports Ortho here in CT who tells me

there is no help for me other than surgery. Simply because this is

a " structural " problem. That appt scared me because he was ready to

operate ASAP and I'm not because of having little ones and no family

nearby. Plus, he's not referred to as one of the 'revision experts'

mentioned.

Anyhow, I said I was going to keep this brief. I suppose I could

bitch all day long about yesterday's fiasco. I am certain of 2

things;

1)I hurt and it is getting worse.

2)I do not want any long term damage.

I'm not sure if I am venting because I feel isolated or insulted.

Maybe both.

It comforts me to know I'm not the only flatbacker in the world, and

flatback DOES get worse over time. I'm in the midst of progression,

unfortunately. Anybody else out there with severe pain who is not

leaning forward drastically?

Thanks for being here and thanks to for this group. I feel

better just typing this story. It gets my feelings out, even if my

feelings are not easily understood or if I sound contradictory.

I think I'll go to the high school gym for an intense swim. Sounds

nice.

xoxo's

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

[Guest guest]

Hi , Sorry for your difficult day. And I am sorry I didn't get to see

you on Thursday. We were just on opposite schedules up there for the day.

However, I think my husband rode the elevator with you. About your appointment,

I understand. I also have a lot of kids, 5! Ages 17 (he is from my first

marriage and lives with his dad) With us we have 4 children, 12 year old girl,

11 year old girl, 6 year old boy and 4 year old boy. They were all pretty big

too when born: biggest 10 pounds 6 ounces and 23.5 " long. When these back

problems all came about I even lived in Connecticut. Anyway, back in 2001 I

fell and it all started. My first Doctor I saw told me the revision was such a

big deal (he was right), I am the one that did not want to do it until my

youngest was older (he was 18 months at the time). So I waited 2 years. Did

physical therapy (and water therapy in a warm pool, nice!!!) and took Lodine

until my surgery. I also tried epideral injections, I did get some relief from

some, none from others. Same deal with Pain Meds, they didn't want me to take

them now because of concern when I really needed them. It was a tough 2 years,

but I felt that in these two years my kids were able to handle it all better.

My youngest was 3 years old and understood I had surgery. We had a wonderful

time recovering together. We would spend the morning in bed snuggling and

watching tv. All in all I was glad I waited, but it was not fun.

Now I get to do it all over again. I did like the doctor and will schedule for

some time this summer, hopefully.

Anyway, that is my story of waiting for revision surgery, I realize we all feel

differently about when it is the right time to do the revision. So be sure to do

what is best for you!!!!!

Kris

appt yesterday lead to INTENSE frustration!!!

Hi Friends,

I am normally upbeat and think highly of my spine surgeon in Boston.

However, yesterday was the absolute pits for me! I've hit rock

bottom.

First off, I'll be going to physical therapy Monday. Good thing

number one. Good thing number 2, there seems to be no visible signs

of nerve damage or disc damage.

OK...here I go. (Be warned, if you cannot deal with

negativity...stop right here. I'm a bit irked. I think this is the

4th time in my life this level of frustration has happened.)

I drove in to Boston yesterday which was a 140 mile trip one way. I

did it solo. Can you say

AAAAAAAAAAAAARRRRRRRRRRRGGGGGGGGGHHHHHHHHHHH!!! I get to NEBH and

have the MRI. It hurt like #@!#%$^ lying on that flat surface. So I

prayed the ry, pretending the call/panick button was a string of

beads. HAHAAAAAAA!!! Yup, I set it off once...oops! Anyway, the die

was put in for separating pix of scar tissue from normal tissue. The

dude injecting didn't do it gently. @!#^ & !

After the MRI, I had x-rays taken. That went well.

I finally go upstairs to see my doc and I'm telling myself I'm

agitated because of the long drive to the hospital as well as

dreading the drive back home.

Good thing #3, the new secretary is a GEM! Awesome gal! HOORAY!!!

The doc comes in. He remembers me totally. KEWL! I tell him about

the 9 pound 11 ounce baby born 6 months ago and this is #4. (he

thought we were on #2) He proceeds to tell me my posture is good, not

leaning forward like most. However, I show him the bruises on my

thighs from leaning on my thighs using my elbows every time I am

sitting.

I don't want to slam the doc because I believe he is golden, so I

will wrap this up with a brief summation. I am remaining open to the

possibility the long drive took me over mentally. However, it doesn't

change the fact I'm confused, frustrated, and making my husband at a

loss as to what to do/say for me.

The surgeon's advice;

1) I shouldn't have surgery until after the baby is 1 year old,

because my body needs to adjust back in to shape and I am heavier

than he remembers me from 4 years ago. (I am 144 pounds, 5'5 " ...used

to be 124 pounds. Gee thanks ALLLL-OT!!!)

2) I should get in to some intense physical therapy, the kind where

one works out to the point of muscles burning and the feeling of

a " workout high. " He is almost certain I'll be nearly pain free if I

take that route.

3) My posture is not bent forward nor am I on a walker. He repeated

this numerous times. I felt like he should have just said to

me, " Since your not using a walker or leaning forward when you walk,

your pain is not to the level of others I have seen and operated

on. "

4) When I asked what to do for pain management he asked what am I

doing now? I replied " Going out of my mind with pain throughout my

days. Especially evening time. " He then proceeds to tell me why

patients should not be on narcotics if they're thinking about

surgery. I felt soooo stupid when he said that. I wasn't talking

narcotics, I was talking injections. But so what if I was talking

narcotics? I see nothing wrong with a person resorting to pain meds

as such. Maybe not all day every day. Let's face it, some days are

better than others. Anyhow, I just shut my mouth for fear of

sounding " defensive " on topic. ARGH!!!

5) To have the surgery or not is my choice.

So...now I'm confused and feel as if I should be on a walker or

something before I decide to have the surgery. I'm not going to rush

out tomorrow and get it done, but I feel a bit of shame after this

visit and I cannot define why. Perhaps it was the taxing drive or

perhaps the doc has seen worse and truly believes I'm not a surgical

candidate. I left his care 4 years prior when I was diagnosed with

flatback because his secretary was a meanie. (I'm not calling him a

meanie, maybe he just had a bad day yesterday. He's entitled.)

About 2 months ago I saw a Sports Ortho here in CT who tells me

there is no help for me other than surgery. Simply because this is

a " structural " problem. That appt scared me because he was ready to

operate ASAP and I'm not because of having little ones and no family

nearby. Plus, he's not referred to as one of the 'revision experts'

mentioned.

Anyhow, I said I was going to keep this brief. I suppose I could

bitch all day long about yesterday's fiasco. I am certain of 2

things;

1)I hurt and it is getting worse.

2)I do not want any long term damage.

I'm not sure if I am venting because I feel isolated or insulted.

Maybe both.

It comforts me to know I'm not the only flatbacker in the world, and

flatback DOES get worse over time. I'm in the midst of progression,

unfortunately. Anybody else out there with severe pain who is not

leaning forward drastically?

Thanks for being here and thanks to for this group. I feel

better just typing this story. It gets my feelings out, even if my

feelings are not easily understood or if I sound contradictory.

I think I'll go to the high school gym for an intense swim. Sounds

nice.

xoxo's

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

[Guest guest]

Hey Everybody,

Thanks for your responses. I truly feel like you all in here completely

understand my situation.

Last week for my appt in Boston, I told my husband he should go to work and not

worry. I could handle it all solo. Little did I know.

I've learned quite a few things over this past week.

One does NOT have to be leaning forward in order to be a surgical candidate for

flatback revision. Also, somebody who is not leaning forward can be suffering

from just as much if not more pain than say a person who is so forward they're

using a walker. Pain is pain and everybody is different. Before my original

surgery I had an exaggerated lumbar curve due to my muscles, etc. Most gymnasts

do have this exaggerated inward curve. Bottom line for me is I'm definitely

leaning forward more than I was 4 years ago. It's painful for me to maintain my

straightest posture.

Apparently the new thing with spine docs is this... INTENSE PHYSICAL THERAPY.

Although it hasn't been approved to be an effective medical approach for back

pain it is widely used and believed to be a definite cure. Thus the reason why

this doc at NEBH, Dr. Rand, strongly advised me to " get in to shape " using

intense strength training work outs. Well, if I wanted to be a body builder I

would have driven 2.5 hours to see a body builder, then 3.5 hours back home in

the midst of rush hour traffic. BOSTON MASS. rush hour traffic. Fact of the

matter is, I am having excruciating back pain, neck pain, and hip pain resorting

me to see a spine surgeon.

My expectations from that visit were simple. I knew he was a surgeon and I

wanted his opinion. I also wanted a course of treatment for pain management

until my baby was older. Be it injections, physical therapy, whatever! What I

got from Rand was inappropriate care at best. I was confused when I left there.

He kept encouraging me to lose weight and do some intense work outs. Yet when I

go to my GP, he tells me if I lose any weight I'll be underweight...go figure!

Well, I must say this...I have read the article Rand and the practice he works

for are using to give medical advice on the belief that intense strength

training cures all back pain. (I can e-mail this article from Rand's office if

anybody would like to see/read it.) I am tired of being a guinea pig. Rand

wasn't concerned with my hip pain, nor was he concerned with my neck/upper back

pain. Yet the only place the MRI covered was the lumbar region. I totally don't

understand his approach. I feel like the guy doesn't believe me. Yet this doc

here in CT wants to operate on me ASAP after doing all sorts of work ups.

So here's my approach, I'm going to research docs in CT as well as New York.

YALE is a teaching hospital so I doubt they could help me.

Wanna hear the straw that broke the camel's back? I called Rand last Friday

about anti inflammatory medication he prescribed. Rand didn't call me back

because it was a medicine question and his secretary handles THOSE questions. It

still would have been nice to hear from him or even his secretary, but nothing.

So today I called his office again asking for a refill because it's better to

have something as opposed to nothing. (The original RX took me through 1 week.)

Dr. Rand's secretary tells me I need to fax my request, etc... I did so. I

called to verify my fax was received, another gal tells me it was. Well, Rand's

secretary went home without calling in my prescription. So I'm thinking maybe

this was not able to be called in. I then call my pharmacist who tells me Rand's

secretary called, asked when the original RX was filled, then said she'd call

back to order a refill. But nothing. Somebody somewhere dropped the ball.

If this is going to happen over an anti inflammatory, I cannot imagine what

would happen over a question I would have post operative or even preoperative.

I've never been so disappointed, I truly mean this.

So, I'm back to square one. I guess I should ask this doc in CT how many

revisions he has done etc... He has a pain management center within his

practice. I'm done with Rand simply because he seems to be so elusive. I truly

don't like having to deal soley with a medical secretary. She's nice enough, but

she's no surgeon. Nor does she know my pain or understand what will help me.

I have spent this past week calming down and thinking long and hard about

whether or not to keep Rand as my doc. At this point somebody needs to apologize

to me for not calling me back and answering my questions. If a doc is going to

prescribe you medication they'd better make themselves available to answer your

questions.

I share all this in great detail because if it happens to anybody else just

know it is not acceptable and the doc is the one to blame...NOT THE

FLATBACKER!!!

SO...I say to my doc, in the words of the DONALD... YOU'RE FIRED!

hahahaha

xoxo's

[Guest guest]

,

I'm so sorry to hear you had such a disheartening experience with

Rand and his practice. I wonder what is up with those folks.

The emphasis on strength training is certainly new -- I never heard a

word about this from anyone in Boston two years ago. I would be

interested to see what kind of material they are distributing now.

I'm wondering why you think a teaching hospital would not be a good

place for you personally? I know that some of us do find a smaller

community hospital preferable for any number of reasons -- but not

necessarily for something as complex as our spinal deformities. In

general, I strongly favor (and advocate) the teaching hospital milieu

for anyone with major back problems and a history of scoliosis

surgery.

" The Search " can certainly be discouraging and can sometimes seem

endless. Here's hoping you find a surgeone with whom you feel truly

comfortable -- and soon.

Best,

> Hey Everybody,

> Thanks for your responses. I truly feel like you all in here

completely understand my situation.

> Last week for my appt in Boston, I told my husband he should go to

work and not worry. I could handle it all solo. Little did I know.

> I've learned quite a few things over this past week.

> One does NOT have to be leaning forward in order to be a surgical

candidate for flatback revision. Also, somebody who is not leaning

forward can be suffering from just as much if not more pain than say

a person who is so forward they're using a walker. Pain is pain and

everybody is different. Before my original surgery I had an

exaggerated lumbar curve due to my muscles, etc. Most gymnasts do

have this exaggerated inward curve. Bottom line for me is I'm

definitely leaning forward more than I was 4 years ago. It's painful

for me to maintain my straightest posture.

> Apparently the new thing with spine docs is this... INTENSE

PHYSICAL THERAPY. Although it hasn't been approved to be an effective

medical approach for back pain it is widely used and believed to be a

definite cure. Thus the reason why this doc at NEBH, Dr. Rand,

strongly advised me to " get in to shape " using intense strength

training work outs. Well, if I wanted to be a body builder I would

have driven 2.5 hours to see a body builder, then 3.5 hours back home

in the midst of rush hour traffic. BOSTON MASS. rush hour traffic.

Fact of the matter is, I am having excruciating back pain, neck pain,

and hip pain resorting me to see a spine surgeon.

> My expectations from that visit were simple. I knew he was a

surgeon and I wanted his opinion. I also wanted a course of treatment

for pain management until my baby was older. Be it injections,

physical therapy, whatever! What I got from Rand was inappropriate

care at best. I was confused when I left there. He kept encouraging

me to lose weight and do some intense work outs. Yet when I go to my

GP, he tells me if I lose any weight I'll be underweight...go figure!

> Well, I must say this...I have read the article Rand and the

practice he works for are using to give medical advice on the belief

that intense strength training cures all back pain. (I can e-mail

this article from Rand's office if anybody would like to see/read

it.) I am tired of being a guinea pig. Rand wasn't concerned with my

hip pain, nor was he concerned with my neck/upper back pain. Yet the

only place the MRI covered was the lumbar region. I totally don't

understand his approach. I feel like the guy doesn't believe me. Yet

this doc here in CT wants to operate on me ASAP after doing all sorts

of work ups.

> So here's my approach, I'm going to research docs in CT as well as

New York. YALE is a teaching hospital so I doubt they could help me.

> Wanna hear the straw that broke the camel's back? I called Rand

last Friday about anti inflammatory medication he prescribed. Rand

didn't call me back because it was a medicine question and his

secretary handles THOSE questions. It still would have been nice to

hear from him or even his secretary, but nothing. So today I called

his office again asking for a refill because it's better to have

something as opposed to nothing. (The original RX took me through 1

week.) Dr. Rand's secretary tells me I need to fax my request, etc...

I did so. I called to verify my fax was received, another gal tells

me it was. Well, Rand's secretary went home without calling in my

prescription. So I'm thinking maybe this was not able to be called

in. I then call my pharmacist who tells me Rand's secretary called,

asked when the original RX was filled, then said she'd call back to

order a refill. But nothing. Somebody somewhere dropped the ball.

> If this is going to happen over an anti inflammatory, I cannot

imagine what would happen over a question I would have post operative

or even preoperative.

> I've never been so disappointed, I truly mean this.

> So, I'm back to square one. I guess I should ask this doc in CT

how many revisions he has done etc... He has a pain management center

within his practice. I'm done with Rand simply because he seems to be

so elusive. I truly don't like having to deal soley with a medical

secretary. She's nice enough, but she's no surgeon. Nor does she know

my pain or understand what will help me.

> I have spent this past week calming down and thinking long and

hard about whether or not to keep Rand as my doc. At this point

somebody needs to apologize to me for not calling me back and

answering my questions. If a doc is going to prescribe you medication

they'd better make themselves available to answer your questions.

> I share all this in great detail because if it happens to anybody

else just know it is not acceptable and the doc is the one to

blame...NOT THE FLATBACKER!!!

>

> SO...I say to my doc, in the words of the DONALD... YOU'RE FIRED!

> hahahaha

> xoxo's

>

[Guest guest]

HI ,

I'm sorry to read of your continued frustrations. I feel for you, as

always.

Well, I can believe that Dr. Rand was not concerned about your hip

pain, because he's not a hip doctor. You are wise to advocate for

yourself by talking things over with your GP (and of course any other

specialists that you feel you need to see, such as an OS who

specializes in hips). I have the same complaint as you about my neck

and upper back. Last time I was in to see my local spine doc

complaining about my neck, he said that although the x-ray I had

taken did not really show my entire neck, he didn't suggest taking an

x-ray that would show the whole thing. Perhaps because I had an MRI

of the cervical area four months ago (recommended by my neurologist)

which didn't show anything. But still, I feel that because our

bodies are such a mess due to this flatback thing, that the docs

should do every diagnostic test they can to try to figure out what's

best for us and if anything has changed about our status, if in fact,

we are agreeable to the testing. I'm sure they don't agree, due to

cost containment, etc. etc. etc., but I am just so afraid that they

will miss something pertinent if they don't do extensive, periodic

testing. Especially because many of us have seen several doctors and

I'm quite sure that oftentimes our complete history doesn't follow us

from doctor to doctor. Of course there's no guarantee that our docs

even READ our complete histories even if they do have them. I can't

shake the feeling that I'm a big puzzle with a few pieces missing.

Does anyone else feel like this?

Re: the MRI only covering your lumbar region. Sometimes I feel they

just over-assume that our neck problems are muscular caused by our

flatback. I'd be interested in seeing that article about intense

strength training. Does it give specifics on what kind of exercises

are best? It makes no sense to me that that would help, because any

training that I do for my hip kills my back and my neck is worse than

ever since joining a gym. Did he refer you to a specific physical

therapist? Although I love my PT, I am still a bit uncomfortable

knowing that she has never dealt with a person with my combination of

problems. I hope you will let us know how things work out if you try

the intense strength training workouts. I suppose anything is worth

a try.

I think it's completely understandable that different doctors would

have different views on when is the right time to do surgery,

though. Getting many opinions is wise, I think, but it can also be

confusing when they don't say the same thing. Hope you will keep us

posted on who you plan to see next. Yes, I'd recommend definitely

asking each of them how many revision surgeries they've performed,

specifically to correct flatback or or flatback combined with DDD or

whatever your problems are.

That is so unfortunate that Rand's secretary dropped the ball on the

anti-inflammatory. What kind of anti-inflammatory is it? Were your

questions about obtaining it or about its usage or effects? It seems

a little odd that his secretary would be the one answering ALL

questions about medicine. Isn't that kind of like practicing

medicine without a license? I can see that she could be responsible

for the calling into the pharmacy, but I'd think a nurse at least

would be in charge of the more intricate questions.

I feel the same way as you that the office staff can really make it

way too frustrating to continue relations with a particular doctor.

I realize that everyone makes mistakes, but when they do, I expect

them to work very hard to make up for them and make things right for

the patient.

I'm sorry this post is not as postive as I usually try to be. I'm in

a foul mood after seeing my hip surgeon yesterday for my one year

post replacement follow up visit. I wanted some tests done to figure

out why I am having continued pain. But he didn't think they were

warranted. The NYC spine doctor thought I should have my other hip

replaced before my spine revision, but my other hip is not bad enough

(although it's painful) yet to warrant surgery. So I am once again

in that crummy holding pattern of multiple pains. The thought of

years of hip pain and worsening limp because of that added to the

flatback leaning forward and pain is mucho depressing to me. So I'll

be onward and upward toward seeking a second opinion, and continually

struggling to maintain a more positive attitude.

Good luck, , and thanks to everyone for listening to me

expound and complain,

loriann

[Guest guest]

I'm an RN and am alarmed by the fact that this Dr. Rand has his

secretary triage, and answer, medical questions, and contact pharmacies

to fill prescriptions. This is illegal. Does an actual RN work in his

office? Not medical assistant, but an RN. It is not uncommon for MDs

to present MAs to their patients as a " nurse, " and for MAs to present

themselves as such. The general public isn't sophisticated enough to

know the difference. Triaging telephone calls, giving advice, and

dealing with prescriptions must be done by a licensed provider (RN, MD,

DO). A pharmacist should NOT take a telephone order from a secretary!

Every state I've worked in (Illinois, New Mexico, California) a

pharmacist can only legally fill a prescription phoned in by an RN, MD,

or DO.

It sounds like pain control is not taken seriously in this practice

(this office sounds terribly disorganized, or too busy and

understaffed), as well as in other practices I've read described by

listmembers. Even if these surgeons think scoliosis patients are a

bunch of whiners with drug seeking behavior (and if this is their

off-the-record opinion, they are in the wrong speciality, as pain is

huge problem with spine patients), they should have a practice protocol

for addressing pain management for their patients. Either the surgeon

should do it him/herself, or be affiliated with a pain management

specialist (who are usually anesthesiologists, sometimes clinical

pharmacologists, or nurse specialislts) who can provide adequate and

appropriate care. Chronic pain indicates a problem, in my opinion.

Can Dr. Rand refer you to a Pain Service? I'm surprised Dr. Rand

doesn't have a nurse practitioner, physician's assistant, or nurse

assistant to handle these issues with patients and intervene

appropriately.

As far as the weight training, I am not knowledgable about current

trends in management of scoliosis patients, nor am I a physical

therapist, but speaking from my personal experience I had figured out

after my surgery at 14, that most of my pain was from muscle spasming,

not nerve root compression (which is a completely different thing!).

Neither my scoliosis surgeon or family doctor would give me a valium

prescription or pain meds, despite my constant complaints, so I had to

figure out a solution on my own. My self-medication consisted of

downing one or two straight tequila shots (this was Texas), laying down

for a nap, waking up feeling much more relaxed. Maybe the tequila was

as effective as the valium would have been.

This is why I think weight training works. A fused spine cannot bend

or rotate the way a spine wants to and is designed by nature to do.

The muscles naturally want to stretch, twist and bend, and when they

are unable to do this because the ribs and spine are abnormally

configured (as with scoliosis deformity) and artificially immobilized

(with fusion/instrumentation), the muscles will eventually rebel with

spasming, which sets off a negativly escalating cascade of spasm and

pain (lactic acid buildup in the muscle increases this pain, and spasm,

or muscle contraction, decreases blood/oxygen flow to tissue, which

causes more pain), more spasm, increasing pain, & c. This continues to

an unbearable point until " something " happens (ie given a muscle

relaxant, or tequila, or atony -- the muscle finally completely gives

out from exhaustion) and the muscles relax or the pain breaks,

providing relief.

A muscle spasm is a contraction. Using weights, either with machines,

but also free weights (I found free weights work better for me, given

the asymmetry of my body, I can better target weak areas), is a method

for inducing controlled contractions/relaxation of the targeted

muscles. The goal is increasing strength and endurance for the

activity, and doing consistent workouts provides an outlet for working

these muscles that prevents the spasming in the first place. The body

begins to produce endorphins with regular exercise as well. I also

learned that proper stretching (see Bob 's book on stretching)

releases the muscles and can target the tight areas that can't normally

move and flex. Body disciplines like tai chi and yoga (see Elise

Browning , www.yogaforscoliosis.com) help with stretching of

places in the back and hips that are hard to target and work, and like

massage, reach those areas of neck, shoulders, and hips that tense up

secondary to the inflexible spine.

One big part of my muscle and back pain cascade is in my pelvis.

Asymmetry of the back affects the pelvis and the gait, which is

compounded with those people having leg length discrepancies.

Appropriate stretching, and activities like yoga, pilates, and tai chi

target the pelvis for this reason. Enjoyable sexual activity and

orgasm also relax the deep pelvic structures and increase blood flow to

the oxygen starved tissues, as well as produce endorphins and feelilngs

of physical well being. Blood flow is constricted with muscle spasming

and tightness, which increases pain, and increases lactic acid buildup

which causes more muscle pain, & c. This is partly why massage therapy

and water therapy work: blood flow is increased to the affected areas,

which takes away lactic acid and restores blood/oxygen flow to the

tissues.

Much of what I've observed and learned with my own body and having

scoliosis has helped me coach and guide my patients through labor and

manage their pain (I'm a labor and delivery nurse). The same

principles apply with being able to breathe, relax the body, open the

pelvis, & c in delivering a child.

Another consideration is that stressing the muscles and bones helps

prevent bone loss and osteoporosis, and I reasoned, working my back

muscles, which are attached to my spine and ribs, should help preserve

the integrity of my spinal fusion and prevent leeching of bone from the

fusion as I get older. My bone scan from last year was normal. Weight

training for women has been advocated for quite some time now, and is

advocated for the elderly as well, as those of you who read popular

health magazines will know. Women don't bulk up as men do. Most

people who weight train are not body builders -- actual " body builders "

are a small subset. I find working out gives me some control over my

body -- I had no control over having scoliosis, so this is a good

thing. I can actively make myself feel better physically and mentally.

I do need revision surgery and part of my reluctance is the surgeon

wants to extend my fusion upwards cervically and to S1, further

limiting my range of motion, and I fear the decreased mobility would

create chronic pain, as well as increase the feeling I have of wanting

to jump out of my own skin, a feeling I have to keep just out of

conscious awareness. I don't want to be further immobilized!

Unless one has an excellent knowledge of one's body it would be best to

get the advice of a physical therapist or certified fitness trainer who

is knowledgeable about treating back problems before starting to use

weights, and to learn how to stretch properly. Learning proper

technique is absolutely critical for success and to prevent injury.

Same with finding a yoga instructor. If I ever win the lottery I will

take Pilates reformer classes, which I think is the single best body

discipline for anybody with spinal problems, but is prohibitvely

expensive (upwards of $60/session, 2-3x weekly) and American insurance

companies won't pay for it. Pilates mat classes are much cheaper and

are excellent for learning moves to strengthen your back, pelvis and

abdomen, however. Pilates was specifically developed in the 1920's for

rehabilitation and targets strengthening and stretching of the core or

trunk of the body.

Grace

(back to lurking)

" From: USNAWIFE@...

Subject: Re: appt yesterday lead to INTENSE frustration!!!

<snipped> ... I called Rand last Friday about anti inflammatory

medication he prescribed. Rand didn't call me back because it was a

medicine question and his secretary handles THOSE questions. It still

would have been nice to hear from him or even his secretary, but

nothing. So today I called his office again asking for a refill because

it's better to have something as opposed to nothing. (The original RX

took me through 1 week.) Dr. Rand's secretary tells me I need to fax my

request, etc... I did so. I called to verify my fax was received,

another gal tells me it was. Well, Rand's secretary went home without

calling in my prescription. So I'm thinking maybe this was not able to

be called in. I then call my pharmacist who tells me Rand's secretary

called, asked when the original RX was filled, then said she'd call

back to order a refill. But nothing. Somebody somewhere dropped the

ball. <snipped> ... "

[Guest guest]

WOW Grace I'm very impressed at youre knowledge.I might ask you for

information about the right type of exercise. I joined Baleys Fitness

center I do pool exercises there and i do the bike twice a week for

15 min I dont trust the trainers there to give me a work out program

because I know they are not trained for backs like ours. I do use

some of the weights they have there but I'm leery about it, afraid of

causing more damage. I tried Pilates with a video for abdominal

streght she kept her head off the floor most of the time and doing

stomach crunchess or sit ups wich I can't do so I did what ever I

could but I was straining my neck keeping my head raised off the

floor. maybe it wasn't the right video. Unfortunatly our backs are

not like others, so certain exercisess can be more damaging, and

other exercisess can be very beneficial in keeping flexibility in the

hips, and strengthening abdominal muscle to keep the lower back

muscle strong. I don't have back pain eccept when I drive more than

an 1hr then my left side hurts, this is a new symptom. the jacuzzi

helps. MY main problem is right femur feels weak and stiffens up when

I sit too long making it difficult to walk and when I walk too long

It gets weaker and if I push it it turns into burning pain traveling

down to my knee. Everyone is diferent, I think my bigest problem is

the degenerated disc. I agree with you about being fused further down

causing limiting range of motion in the hips. I have L4 d.d.d They

would fuse me further down not sure how far down but the water

therapy isn't doing anything for the weakness in my femur.

Anyway sorry to have made this so long and sorry for any mispelled

words dont feel like double cheking. but I found youre post verry

interesting and agreable.

xoxox

crooked-dancer.

> I'm an RN and am alarmed by the fact that this Dr. Rand has his

> secretary triage, and answer, medical questions, and contact

pharmacies

> to fill prescriptions. This is illegal. Does an actual RN work in

his

> office? Not medical assistant, but an RN. It is not uncommon for

MDs

> to present MAs to their patients as a " nurse, " and for MAs to

present

> themselves as such. The general public isn't sophisticated enough

to

> know the difference. Triaging telephone calls, giving advice, and

> dealing with prescriptions must be done by a licensed provider (RN,

MD,

> DO). A pharmacist should NOT take a telephone order from a

secretary!

> Every state I've worked in (Illinois, New Mexico, California) a

> pharmacist can only legally fill a prescription phoned in by an RN,

MD,

> or DO.

>

> It sounds like pain control is not taken seriously in this practice

> (this office sounds terribly disorganized, or too busy and

> understaffed), as well as in other practices I've read described by

> listmembers. Even if these surgeons think scoliosis patients are a

> bunch of whiners with drug seeking behavior (and if this is their

> off-the-record opinion, they are in the wrong speciality, as pain

is

> huge problem with spine patients), they should have a practice

protocol

> for addressing pain management for their patients. Either the

surgeon

> should do it him/herself, or be affiliated with a pain management

> specialist (who are usually anesthesiologists, sometimes clinical

> pharmacologists, or nurse specialislts) who can provide adequate

and

> appropriate care. Chronic pain indicates a problem, in my

opinion.

> Can Dr. Rand refer you to a Pain Service? I'm surprised Dr. Rand

> doesn't have a nurse practitioner, physician's assistant, or nurse

> assistant to handle these issues with patients and intervene

> appropriately.

>

> As far as the weight training, I am not knowledgable about current

> trends in management of scoliosis patients, nor am I a physical

> therapist, but speaking from my personal experience I had figured

out

> after my surgery at 14, that most of my pain was from muscle

spasming,

> not nerve root compression (which is a completely different

thing!).

> Neither my scoliosis surgeon or family doctor would give me a

valium

> prescription or pain meds, despite my constant complaints, so I had

to

> figure out a solution on my own. My self-medication consisted of

> downing one or two straight tequila shots (this was Texas), laying

down

> for a nap, waking up feeling much more relaxed. Maybe the tequila

was

> as effective as the valium would have been.

>

> This is why I think weight training works. A fused spine cannot

bend

> or rotate the way a spine wants to and is designed by nature to

do.

> The muscles naturally want to stretch, twist and bend, and when

they

> are unable to do this because the ribs and spine are abnormally

> configured (as with scoliosis deformity) and artificially

immobilized

> (with fusion/instrumentation), the muscles will eventually rebel

with

> spasming, which sets off a negativly escalating cascade of spasm

and

> pain (lactic acid buildup in the muscle increases this pain, and

spasm,

> or muscle contraction, decreases blood/oxygen flow to tissue, which

> causes more pain), more spasm, increasing pain, & c. This continues

to

> an unbearable point until " something " happens (ie given a muscle

> relaxant, or tequila, or atony -- the muscle finally completely

gives

> out from exhaustion) and the muscles relax or the pain breaks,

> providing relief.

>

> A muscle spasm is a contraction. Using weights, either with

machines,

> but also free weights (I found free weights work better for me,

given

> the asymmetry of my body, I can better target weak areas), is a

method

> for inducing controlled contractions/relaxation of the targeted

> muscles. The goal is increasing strength and endurance for the

> activity, and doing consistent workouts provides an outlet for

working

> these muscles that prevents the spasming in the first place. The

body

> begins to produce endorphins with regular exercise as well. I also

> learned that proper stretching (see Bob 's book on

stretching)

> releases the muscles and can target the tight areas that can't

normally

> move and flex. Body disciplines like tai chi and yoga (see Elise

> Browning , www.yogaforscoliosis.com) help with stretching of

> places in the back and hips that are hard to target and work, and

like

> massage, reach those areas of neck, shoulders, and hips that tense

up

> secondary to the inflexible spine.

>

> One big part of my muscle and back pain cascade is in my pelvis.

> Asymmetry of the back affects the pelvis and the gait, which is

> compounded with those people having leg length discrepancies.

> Appropriate stretching, and activities like yoga, pilates, and tai

chi

> target the pelvis for this reason. Enjoyable sexual activity and

> orgasm also relax the deep pelvic structures and increase blood

flow to

> the oxygen starved tissues, as well as produce endorphins and

feelilngs

> of physical well being. Blood flow is constricted with muscle

spasming

> and tightness, which increases pain, and increases lactic acid

buildup

> which causes more muscle pain, & c. This is partly why massage

therapy

> and water therapy work: blood flow is increased to the affected

areas,

> which takes away lactic acid and restores blood/oxygen flow to the

> tissues.

>

> Much of what I've observed and learned with my own body and having

> scoliosis has helped me coach and guide my patients through labor

and

> manage their pain (I'm a labor and delivery nurse). The same

> principles apply with being able to breathe, relax the body, open

the

> pelvis, & c in delivering a child.

>

> Another consideration is that stressing the muscles and bones helps

> prevent bone loss and osteoporosis, and I reasoned, working my back

> muscles, which are attached to my spine and ribs, should help

preserve

> the integrity of my spinal fusion and prevent leeching of bone from

the

> fusion as I get older. My bone scan from last year was normal.

Weight

> training for women has been advocated for quite some time now, and

is

> advocated for the elderly as well, as those of you who read popular

> health magazines will know. Women don't bulk up as men do. Most

> people who weight train are not body builders -- actual " body

builders "

> are a small subset. I find working out gives me some control over

my

> body -- I had no control over having scoliosis, so this is a good

> thing. I can actively make myself feel better physically and

mentally.

> I do need revision surgery and part of my reluctance is the

surgeon

> wants to extend my fusion upwards cervically and to S1, further

> limiting my range of motion, and I fear the decreased mobility

would

> create chronic pain, as well as increase the feeling I have of

wanting

> to jump out of my own skin, a feeling I have to keep just out of

> conscious awareness. I don't want to be further immobilized!

>

> Unless one has an excellent knowledge of one's body it would be

best to

> get the advice of a physical therapist or certified fitness trainer

who

> is knowledgeable about treating back problems before starting to

use

> weights, and to learn how to stretch properly. Learning proper

> technique is absolutely critical for success and to prevent

injury.

> Same with finding a yoga instructor. If I ever win the lottery I

will

> take Pilates reformer classes, which I think is the single best

body

> discipline for anybody with spinal problems, but is prohibitvely

> expensive (upwards of $60/session, 2-3x weekly) and American

insurance

> companies won't pay for it. Pilates mat classes are much cheaper

and

> are excellent for learning moves to strengthen your back, pelvis

and

> abdomen, however. Pilates was specifically developed in the 1920's

for

> rehabilitation and targets strengthening and stretching of the core

or

> trunk of the body.

>

> Grace

> (back to lurking)

>

> " From: USNAWIFE@a...

> Subject: Re: appt yesterday lead to INTENSE frustration!!!

>

> <snipped> ... I called Rand last Friday about anti inflammatory

> medication he prescribed. Rand didn't call me back because it was a

> medicine question and his secretary handles THOSE questions. It

still

> would have been nice to hear from him or even his secretary, but

> nothing. So today I called his office again asking for a refill

because

> it's better to have something as opposed to nothing. (The original

RX

> took me through 1 week.) Dr. Rand's secretary tells me I need to

fax my

> request, etc... I did so. I called to verify my fax was received,

> another gal tells me it was. Well, Rand's secretary went home

without

> calling in my prescription. So I'm thinking maybe this was not able

to

> be called in. I then call my pharmacist who tells me Rand's

secretary

> called, asked when the original RX was filled, then said she'd call

> back to order a refill. But nothing. Somebody somewhere dropped the

> ball. <snipped> ... "

[Guest guest]

Random thoughts....as I have been reading the posts regarding the

advice given by Dr Rand....I have been wondering about the emotional

vs. realistic advice given. For example, it seems reasonable to me

that any doctor that had the luxury of having his/her surgical

patient in the best physical shape possible would be derelict in not

trying to get you to surgury in that condition. (Please don't

mistconstrue me here...I mean " elective " only in that we generally

seem to be able to pick the time and place of our surgury...we are

not victims of automobile accidents that must chose immediate

surgury.) And I don't mean to belittle the awful pain that you or any

of us are in, I know myself the difficulty of figuring out how the

h*#% to get into better physical condition when I am having trouble

walking thru the grocery store these days....so it has seemed to me

that where my consultation with Dr. Rand lacked was not in the advice

to use the time ahead in a way that would help toward a stong patient

likley to recover well (that would be me!) and one that would also

improve the liklihood of a good outcome for him. (I mean, I don't for

a second think a doc like Rand doesnt seek to have great

outcomes...that would be crazy.) So what I wished for was a more

holistic look at my situation .

And everyone on this board seems somewhat frustrated by the same

thing. Here we are, a bunch (how many?) of patients who endured what

can only be described as barbaric surgury that now has put us in the

situation of trusting another surgeon. Well obviously the chance of

that is somewhere between slim and none. Unless I am naive...everyone

on this board is taking their doctors words with a grain of salt. I

for one believe my OB/GYN, my GP, really, anyone but a doctor with a

knife. My Orthopod, Rand and anyone else is going to have to

recognize that I have difficulty trusting them. My rational self

knows that their diagnosis and advice is probably wise...but what is

missing is the recognition that for me (us), this is huge. I mean,

there has been a bit of a mistake by the medical profession here, and

with that elephant in the room it is tough to move forward.

It really puts the surgeons we are consutling in a pretty tight box

I think. They must acknowledge their collegues mistakes while

expecting us to trust them. It is a mighty sticky whicket.

What I would like is an opportunity to have the consult go beyond the

surgical future...what if the future looked like this?:

A patient calls any orthopod with potential comlications from

harrington rods. Immediatley the patient is referreed to a group that

works with this population specifically...beginning with

psychological counseling, physical therapy, massage therapy,

pharmocological therapy and surgical consultation when

required...recognizing that it will be eventually...but mitigating

everything else in between.

How hard would that be? How great would that be? Instead we are all

spinning our wheels hoping we can individually cobble together the

right collection of professionals to deal with this little known

problem.

And I wonder if the problem is really just coming to light and needs

to be more widely publicized? What are the numbers...does anyone know?

What would it take to get more publicity for the problems we face and

would that be a good thing?

Reading Mina's stuff I am reminded that an awful lot of people feel

this is a deformity that must be kept from the public eye...it also

mostly affects women...a group often shunted aside as chronic

complainers. How can we best serve ourselves...what do we need as a

group?

I am slowly working my way backward on this message board and the

more I read I am wondering how it was possible that I never recieved

a call from my original surgeon asking for follow up. It's not like I

was hard to find. And lord knows..half of this battle could have been

fought in an up-front and honest way. Instead I feel sorta like its

the dirty little secret of " incest " popping up in my family. And how

is that possible? I mean, I am blameless here....I did everyting the

doctors told me to do ....and I am a surgical failure.

All that is to say what? Heck, I don't know, but I think you all are

feeling a lot of the same feelings...the real question is what to do

about it. There was quite a bit of lawsuit stuff here awhile ago and

that was just devisive. What we need is to come together as a group

and figure out what we want and then go get it. A symposium on our

plight...a study that addresses our needs in the entirity? More than

what is happening today..that is for sure.

Rant out! Cam

[Guest guest]

Cam,

Right on and bravo! I think you said it all. I wish I were not so pooped out

and could write more. I very much like some of your ideas for better serving the

new flatback patient.

Rasche , J.D.

Medicolegal Writing & Editorial Services

6541 N. Francisco, #2

Chicago, IL 60645

(773) 508-1507

Harrington rod? Concerns arising from previous scoliosis surgery? For

information, group support, ongoing discussion with others:

/

Re: appt yesterday lead to INTENSE frustration!!!

Random thoughts....as I have been reading the posts regarding the

advice given by Dr Rand....I have been wondering about the emotional

vs. realistic advice given. For example, it seems reasonable to me

that any doctor that had the luxury of having his/her surgical

patient in the best physical shape possible would be derelict in not

trying to get you to surgury in that condition. (Please don't

mistconstrue me here...I mean " elective " only in that we generally

seem to be able to pick the time and place of our surgury...we are

not victims of automobile accidents that must chose immediate

surgury.) And I don't mean to belittle the awful pain that you or any

of us are in, I know myself the difficulty of figuring out how the

h*#% to get into better physical condition when I am having trouble

walking thru the grocery store these days....so it has seemed to me

that where my consultation with Dr. Rand lacked was not in the advice

to use the time ahead in a way that would help toward a stong patient

likley to recover well (that would be me!) and one that would also

improve the liklihood of a good outcome for him. (I mean, I don't for

a second think a doc like Rand doesnt seek to have great

outcomes...that would be crazy.) So what I wished for was a more

holistic look at my situation .

And everyone on this board seems somewhat frustrated by the same

thing. Here we are, a bunch (how many?) of patients who endured what

can only be described as barbaric surgury that now has put us in the

situation of trusting another surgeon. Well obviously the chance of

that is somewhere between slim and none. Unless I am naive...everyone

on this board is taking their doctors words with a grain of salt. I

for one believe my OB/GYN, my GP, really, anyone but a doctor with a

knife. My Orthopod, Rand and anyone else is going to have to

recognize that I have difficulty trusting them. My rational self

knows that their diagnosis and advice is probably wise...but what is

missing is the recognition that for me (us), this is huge. I mean,

there has been a bit of a mistake by the medical profession here, and

with that elephant in the room it is tough to move forward.

It really puts the surgeons we are consutling in a pretty tight box

I think. They must acknowledge their collegues mistakes while

expecting us to trust them. It is a mighty sticky whicket.

What I would like is an opportunity to have the consult go beyond the

surgical future...what if the future looked like this?:

A patient calls any orthopod with potential comlications from

harrington rods. Immediatley the patient is referreed to a group that

works with this population specifically...beginning with

psychological counseling, physical therapy, massage therapy,

pharmocological therapy and surgical consultation when

required...recognizing that it will be eventually...but mitigating

everything else in between.

How hard would that be? How great would that be? Instead we are all

spinning our wheels hoping we can individually cobble together the

right collection of professionals to deal with this little known

problem.

And I wonder if the problem is really just coming to light and needs

to be more widely publicized? What are the numbers...does anyone know?

What would it take to get more publicity for the problems we face and

would that be a good thing?

Reading Mina's stuff I am reminded that an awful lot of people feel

this is a deformity that must be kept from the public eye...it also

mostly affects women...a group often shunted aside as chronic

complainers. How can we best serve ourselves...what do we need as a

group?

I am slowly working my way backward on this message board and the

more I read I am wondering how it was possible that I never recieved

a call from my original surgeon asking for follow up. It's not like I

was hard to find. And lord knows..half of this battle could have been

fought in an up-front and honest way. Instead I feel sorta like its

the dirty little secret of " incest " popping up in my family. And how

is that possible? I mean, I am blameless here....I did everyting the

doctors told me to do ....and I am a surgical failure.

All that is to say what? Heck, I don't know, but I think you all are

feeling a lot of the same feelings...the real question is what to do

about it. There was quite a bit of lawsuit stuff here awhile ago and

that was just devisive. What we need is to come together as a group

and figure out what we want and then go get it. A symposium on our

plight...a study that addresses our needs in the entirity? More than

what is happening today..that is for sure.

Rant out! Cam

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

[Guest guest]

Cam -- I loved your idea! However, wouldn't we be told that all those

disciplines would be too expensive for insurance to cover? (your prior to

surgery

idea) To me, though, it makes perfect sense!

How would we get our plight " out there " ?

Sincerely,

Carole M. (the elder)

[Guest guest]

Carole M. (the elder)....I don't really have a plan but it seems the

first thing to do is see how large the HARMS population is. I had my

surgury in '72 and am just finding out about it.... since I am a part

of the baby boomers cohort just moving into those middle years I

would imagine that there are many sufferers out there who, like me,

were just accepting a general degredation of their back without

really understanding why. Are we talking 1,000 or more like 10,000.

Anyone know for sure? There are only 250 +/- " feisties " so that

leaves alot of folks out there since I think it is unlikely that the

rest of them have been revised!

Would it make interesting Dateline or Oprah type show? Probably

would, depend on what number of people producers thought were

interested or affected. After that....I don't know...

Thinking....Cam

[Guest guest]

Cam -- Just a thought, but what about the people in all the other scoliosis

support groups? I know that a lot of us belong to many groups, causing a huge

overlap, but there must be some people who belong to only one group? I don't

know how to sift out all of that. Perhaps someone else does know how to do it.

Carole M.

[Guest guest]

> " I had my

surgery in '72 and am just finding out about it.... since I am a part

of the baby boomers cohort just moving into those middle years I

would imagine that there are many sufferers out there who, like me,

were just accepting a general degradation of their back without

really understanding why " >

That is a good question. I would like to know that myself. I think there

are many more of us around that have yet to get diagnosed. I wish a talk

or news show would pick up on this too. Their seems to be a lot of us

affected by HARMS out there...and growing.

Carol...N.Y.

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[Guest guest]

Cam,

I'm enjoying reading your thought process on this. But it's kind of

deja vu-ey because it's been discussed a couple of times on this and

another support group in the couple of years I've been reading them.

I've thought a little about the way to present it to Oprah or

whoever. Maybe with a catchy opening phrase like " Do you remember

back in high school any girls who had big ugly back braces or big

heavy plaster casts to " cure " their scoliosis? I think your viewing

audience would find it very interesting to hear what's happened to

some of them now that they are approaching middle age.....

What do you think?

My alternate idea is to have us appeal to an extreme makeover show....

Best wishes to everybody,

loriann

> Carole M. (the elder)....I don't really have a plan but it seems

the

> first thing to do is see how large the HARMS population is. I had

my

> surgury in '72 and am just finding out about it.... since I am a

part

> of the baby boomers cohort just moving into those middle years I

> would imagine that there are many sufferers out there who, like me,

> were just accepting a general degredation of their back without

> really understanding why. Are we talking 1,000 or more like 10,000.

> Anyone know for sure? There are only 250 +/- " feisties " so that

> leaves alot of folks out there since I think it is unlikely that

the

> rest of them have been revised!

> Would it make interesting Dateline or Oprah type show? Probably

> would, depend on what number of people producers thought were

> interested or affected. After that....I don't know...

> Thinking....Cam

[Guest guest]

This seems a good time to put a plug in for people to add their

information to the databases which exist on this site. The link is

on the left hand side of the Feisty group website. There are only 29

people who have currently added their info. to the database of

original scoliosis fusion histories and only one who has added their

info. to the database of those who have had revisions.

Wouldn't it be cool if all of us added our info.? I think it would

be more significant than the number of support group members is.

Just my humble opinion,

loriann

> Cam -- Just a thought, but what about the people in all the other

scoliosis

> support groups? I know that a lot of us belong to many groups,

causing a huge

> overlap, but there must be some people who belong to only one

group? I don't

> know how to sift out all of that. Perhaps someone else does know

how to do it.

>

> Carole M.

>

>

>

[Guest guest]

I SECOND EVERYTHING LORI WROTE HERE!!!!

(AND I PROMISE TO PUT MY OWN INFO. IN THERE TOO, SOMEDAY SOON. MAYBE

AFTER TODAY, IF THE " DATA " ARE ANY FIRMER . . . .)

Thanks, Lori -- you are right on the money as always.

> > Cam -- Just a thought, but what about the people in all the other

> scoliosis

> > support groups? I know that a lot of us belong to many groups,

> causing a huge

> > overlap, but there must be some people who belong to only one

> group? I don't

> > know how to sift out all of that. Perhaps someone else does know

> how to do it.

> >

> > Carole M.

> >

> >

> >

[Guest guest]

Loriann,

You are soooo right! I've just added my own info. In the past I had

an awful time accessing the subsites, buy today everything went very

smoothly! I think I finally have the process down pat! I've had a

great time looking around the site this a.m.

Here's hoping others will do the same. I suppose that, in a sense,

those who haven't offered a profile are still lurking? Is that so?

Anyway, I shall hope for the best.

Sincerely,

Carole M.

> > Cam -- Just a thought, but what about the people in all the other

> scoliosis

> > support groups? I know that a lot of us belong to many groups,

> causing a huge

> > overlap, but there must be some people who belong to only one

> group? I don't

> > know how to sift out all of that. Perhaps someone else does know

> how to do it.

> >

> > Carole M.

> >

> >

> >

[Guest guest]

Sounds like good idea. Seems like I remember a news show on

what has happened to polio victims. Where are they now? What are

they doing? etc. There always seems to be some fashionable disease

or condition in the news. Time for some attention to be given to the

scolis.

Barbara

> > Carole M. (the elder)....I don't really have a plan but it seems

> the

> > first thing to do is see how large the HARMS population is. I had

> my

> > surgury in '72 and am just finding out about it.... since I am a

> part

> > of the baby boomers cohort just moving into those middle years I

> > would imagine that there are many sufferers out there who, like

me,

> > were just accepting a general degredation of their back without

> > really understanding why. Are we talking 1,000 or more like

10,000.

> > Anyone know for sure? There are only 250 +/- " feisties " so that

> > leaves alot of folks out there since I think it is unlikely that

> the

> > rest of them have been revised!

> > Would it make interesting Dateline or Oprah type show? Probably

> > would, depend on what number of people producers thought were

> > interested or affected. After that....I don't know...

> > Thinking....Cam

[Guest guest]

I think if we do our homework we can probably present an interesting

enough story...but the first question I think we need answered is how

many potential " flatbackers " out there are there? When I saw Dr.

Rand last month he said he hardly saw this condition a few years ago

and now he deals with it routinely...so the pace of " problems "

appears to be accelerating. What I've gleaned is to the one, every

Harrigton patient that was fused to a lumbar vertabrae will, not

might, will eventually need revision surgury (or suffer a serious

degradation of their quality of life). Is that correct information?

And as near as I can tell from the records we have posted here, every

one of us had a different original doctor....and they certainly

weren't Harrington " virgins " ...my doctor seemed to be pretty busy

with scoliosis surguries...(I think revison surgury is a growth field)

Does anyone think the SRS can/would estimate the potential numbers?

Cam

[Guest guest]

Lorianne...I love the makeover idea!!!! Just kidding...really, I

thought I had my makeover in '72 and look whats happened! But maybe

that is the angle.....hhhmmmmmm. Cam