Re: Re: appt yesterday lead to INTENSE frustration!!!

May 1, 2004

Grace --

What a great letter! You are so kind to share all that information! I've

actually printed it so I can refer to it. As for what I know of Dr. Rand, he

does send people to the Pain Clinic right at N.E.Baptist, where his office is.

One must sign a contract re the use of narcotic drugs, and the clinic is very

strict about the refilling of prescriptions, etc. We spoke about it at my

last visit but (1) I had already had an appointment with the clinic director and

(2) Dr. Rand was actually concerned about the distance for me (26 miles). He

knows that I had some success with the pain clinic I attended at another

hospital, also.

I have always kind of wondered if scoliosis is really the result of some sort

of muscle disease which causes the muscles to pull unevenly on either side of

the spine.

At any rate, your letter made perfect sense to me. I am sure that the good

doctor is capable of having " bad days " , but never should they be taken out on

the patients. He ended up telling me to treat my symptoms vigorously, and to

use any aids that made my life easier, including giving me a prescription for

special shoes which I never filled. However, if his secretary has all the

duties listed, something is very wrong!

Thank you again for your great post and, please, do not just lurk?

Sincerely,

Carole M. (the elder)

May 1, 2004

Great post, Grace. I hope we'll be hearing more from you, and best of luck with

your revision issues.

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> ... "

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

------------------------------------------------------------------------------

May 2, 2004

> My thoughts on your frustrating visit to Rand (followup!)

1. I initially tried to handle all the info gathering prerevision on my own to

" spare " my hubby the burden. Ends up this was not a good choice because he was

way behind on the medical aspects once I had decided I needed to have the

surgery, so he had to essentially walk the same journey (without the pain) in

order to reach the same conclusion. Fortunately I had saved many emails from

this site and helpful articles for him to review.

Furthermore, it is just good to have a 2d person with you when you meet with

docs - they can keep up with your list of Q's and whether or not they have all

been asked and answered. Also, my husband and friend who came often had

additional Q's I had not even thought of...I think we can get complacent ( " been

there, done that " ) and not think of basic Q's because we have jumped ahead to

the more complex issues.

So I say always take someone with you for moral support and transcription

skills!

2) I have said it before, but I spend a lot of time speaking to docs about risk

management issues, and they are always surprised to hear how much their staff

can affect a patient's perception of the doctor's care. I tell them to get a

friend to call their own office and ask to speak to the doctor himself and see

what kind of response they get - this is often enlightening. The doctors do not

have a CLUE that their sec'y is a big bitch, or that meds are not getting called

in, because THEY RARELY HEAR THIS from the patients. Instead we gripe to each

other so we don't " bother " the doctor.

I bring this up because I do not know Rand from Adam but I have heard womnderful

things about him on this site and I bet that if he knew about your situation he

would take quick steps to fix it. So I'd write him a letter telling him, like

you told us, what you expected from your visit vs what you got, and detailing

the med snafu.

I, too, used to just bitch to my hubby but I have gotten MUCH more proactive

after all my recent medical experiences (preemie twins, baby meningitis, my HepC

dx and treatment, revision, etc etc etc). I'm just not gonna take it anymore!!

Hope this helps!!

> From: USNAWIFE@...

> Date: 2004/04/30 Fri PM 08:14:55 EDT

>

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

>

> 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

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

>

May 3, 2004

Grace -- Thanks so much for this very thoughtful and informative post. You

provided much invaluable information. I hope you will decide to lurk less and

post more! And please keep us posted on your decision-making process re possible

future surgery.

I would also be interested to know, some time, whether many of your patients

have scoliosis and if you have any impression as to whether this affects

pregnancy, labor, or delivery . . . . I had an amazingly difficult time but

have never found evidence or even anecdotal information that my complications

could have been related to my scoliosis and history of spinal fusion, although

my own gut-sense told me that there had to be a link.

Thanks,

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:

/