Re: Re: To Carole re: Dr. Rand visit, was MS update

[Guest guest]

Dear ,

Forgive me for not writing sooner, but right after my appointment with Dr.

R., I had surgery on my other hand! I am typing with a cast, but this is a

shorter one. Of course, the surgery was at NEBH!

I wanted to let you know how very much I value what you have to say! I

really do value even the ability to see Dr. R. Somehow, we just didn't " click "

that day! When I mentioned the numbness in my thigh, he just said, " You had

that four years ago " . Well, he has never once told me WHY I had it. That was

only a hint of how the meeting went.

Sharon was right, too, when she asked if my husband, Tom, thought it was a

great visit because no surgery was recommended. I think he was very fearful

of surgery. I, on the other hand, wasn't looking for it, but did want to have

a conversation.

I am just regaining use of my hand, and my plan is to write the letter, send

an older x-ray and ask for the measurements straight out. I just wanted to

know the difference between one visit and another. He also seemed to think

that I should know that, even though he has older x-rays of my spine, it was

my job to BRING some -- from where? I thought that having new ones taken

there and comparing them with the old ones from there would just do the job.

I WILL get this done. I will not rest until the questions I wanted answered

are answered. You all know that just getting life together enough to travel

to one of these appointments should show some measure of how important they

are to us!

Thank you so much, my friends, for all the support and thought you have

conveyed to me. I am not a tower of strength at this particular time, and I am

so grateful for your input!

Most sincerely,

Carole M. (the elder)

[Guest guest]

, isn't that why we're called " Feisty " ? Ha Ha!

Carole

[Guest guest]

Dear Carole (M),

It's me... " Catch-Up-Beth " (I should change my screen name to that!)...just a

comment (or 2, perhaps!) re: docs that don't/can't/won't listen to us. It is my

rather unfortunate assumption that at some point during our quest for help for

our Flatback Syndrome and it's ugly, multiple side-effects, we have all

encountered one (2,3,4,5 !!!) doctor who seemed uninterested in our plight. It

begs the question to these docs, " WHY? did you ever go into this field of

medicine/surgery if you don't/can't won't want to help me??!! "

I've totally given up on trying to get an answer to that question...I no longer

have the stamina or patience to wait for an answer. I put those types of

doctors/surgeons on my mental list of who NOT to refer other patients to!! And

then I move on. I used to obsess over things like things. I spent YEARS in

medicine running interference between patients and doctors with no bedside

manners let alone personalities. I'm sad to report that over my years I've

encountered far too many doctors that fall into this catacory.

But on the bright side, we have also been blessed with a few GREAT physicians in

this field. It's kinda' like the old saying, " You have to kiss a lot of frogs

before...blah, blah, blah " . That's why web sites like this one are SO VITAL for

all of us. By sharing and comparing information with each other, from a

patients' point of view, we often find a physicain who is a perfect fit for us.

Just as all doctors have different personalities, approaches to treatment, etc,

all patients have different needs and personalities. The BIG problem is that we

are often not in a position to have the luxery of conducting multiple

interviews with multiple doctors. Flatback Syndrome is our enemy...we are

fighting a war against it...and we are often an army of one (please excuse the

'war' reference...ANOTHER one of my son's friends just shipped out to Iraq and

I'm VERY ANGRY about that whole situation over there!!!). We are armed with only

our x-rays and our increasingly deformed and painful bodies. And we are often

desperate...people with chronic, debilitating pain are usually quite desterapte,

not to mention frustrated, scared, angry, and the list goes on.

As someone who did not seek out proper and well regulated Pain Management

Therapy for far too many years (and consequently suffered in quiet, and often

NOT so quiet, desperation for far too manay years!!!) I have slowly and with

much research and thought, come to this conclusion: perhaps we are approaching

our Flatback Syndrome treatment decisions backwards. Please hear me out for a

few lines here, and keep in mind...THIS IS MY OPINION AND MY OPINION ALONE!!!

I'm NOT a doctor! I'm merely a HARMS patient who rode this merry-go-round of

treatment options for many years.

For many, if not most ,of us our Flatback/HARMS symptoms seem to follow a

similar pattern. Those with Harringtons from the 60's, 70's and early 80's,

whose spines were " flattened out " with distraction rods (because that was THE

treatment available in those early days of scoliosis correction!!) usually

start out by noticing a change in appearance (the look of " falling over " ) and

the change in gait (the " penguin walk " ). That is usually followed by the onset

of the pain...in the back, hips, legs, feel, etc. As the pain increases our

deformrity (God, how I HATE that word, " deformity " ...isn't that why we went

through the Harrington surgery and subsequent confinement in those torturous

Riser casts for months??!!), but I digress... and so the cycle begins. And for

most of us, the first stop on the Flatback merry-go-round is to the Orthopedic

surgery services.

What is we tried this...what if we sought out treatment for the pain first? It

has been my experience that when you are in chronic, increasingly

debilitatating pain, you tend to not pay attention to much else in your life.

Consequently it stands to reason that we might not make the best decisions for

ourselves (or our families, for that matter) when we are only able to focus on

our pain and not what some Ortho doc might be trying to tell us about surgical

treatment options, etc. Our pain and how to stop it tends to overshadow

EVERYTHING else. Is that really the best frame of mind to be in when trying to

decide on something as life changing as revision surgery for Flatback?? I

personally don't think it is...again...MY OPINION ONLY here.

My point is, isn't it possible that maybe we should reverse our plan of attack?

Find a qualified Pain Management physician FIRST. Get on a GOOD Pain Managment

regime and get the pain under control. Once that is accomplished, then go to

phase #2.Find the best Orthopedic surgeon or Neurosurgeon (or wherever your

needs fall) to deal with the " deformrity " part of this monster affilction called

Flatback. This web site is a treasure-trove of valuable, often well-tested

information when it comes to treatment options, physicians, etc. As a group we

are SO POWERFUL when it comes to evaluating information. Many of us have been

the guinea pigs already, so to speak, where some of these procedures are

concerned. By sharing our personal stories, our personal opinions, our

" been-there-done-that-well-educated opinions " we can be the best source of

medical info on the planet for each other!!! MULTIPLE KUDOS GO OUT TO ELIZABETH

AND SCOTT FOR THEIR TREMENDOUS WORK AND MONITORING OF THIS SITE!!! We all owe

them deep gratitude for their efforts on our behalf!!

And with that. I bid you all a fond farewell for the moment...my back is KILLING

me from sitting here for so long...and I'm quite sure you're probably all quite

tired of reading MY OPINION regarding treatment paths.

All the best,

Beth

-------------- Original message --------------

>

>

> Dear Carole, typing in a cast --

>

> What? You are NOT a tower of strength, you say?

>

> You could have fooled me!

>

>

>

>

>

> > Dear ,

> >

> > Forgive me for not writing sooner, but right after my appointment

> with Dr.

> > R., I had surgery on my other hand! I am typing with a cast, but

> this is a

> > shorter one. Of course, the surgery was at NEBH!

> >

> > I wanted to let you know how very much I value what you have to

> say! I

> > really do value even the ability to see Dr. R. Somehow, we just

> didn't " click "

> > that day! When I mentioned the numbness in my thigh, he just

> said, " You had

> > that four years ago " . Well, he has never once told me WHY I had

> it. That was

> > only a hint of how the meeting went.

> >

> > Sharon was right, too, when she asked if my husband, Tom, thought

> it was a

> > great visit because no surgery was recommended. I think he was

> very fearful

> > of surgery. I, on the other hand, wasn't looking for it, but did

> want to have

> > a conversation.

> >

> > I am just regaining use of my hand, and my plan is to write the

> letter, send

> > an older x-ray and ask for the measurements straight out. I just

> wanted to

> > know the difference between one visit and another. He also

> seemed to think

> > that I should know that, even though he has older x-rays of my

> spine, it was

> > my job to BRING some -- from where? I thought that having new

> ones taken

> > there and comparing them with the old ones from there would just

> do the job.

> >

> > I WILL get this done. I will not rest until the questions I

> wanted answered

> > are answered. You all know that just getting life together

> enough to travel

> > to one of these appointments should show some measure of how

> important they

> > are to us!

> >

> > Thank you so much, my friends, for all the support and thought you

> have

> > conveyed to me. I am not a tower of strength at this particular

> time, and I am

> > so grateful for your input!

> >

> > Most sincerely,

> >

> > Carole M. (the elder)

> >

> >

> >

[Guest guest]

I agree with Beth, not everyone can afford to interview other doctors,

and maybe we should find a good pain management team.

I have Kaiser, and they are sending me all the way to San for a

second opinion, they won't pay for me to see my UCSF doctor who did one

of the surgeries, so I'm going to have to pay $100plus to see her.

(Although if anyone on the list has found a way to get Kaiser to pay for

an outside doctor, please let me know!)

It reminds me a bit about getting contracting estimates for repairing my

deck! As my neighbor says, get three estimates, and don't take the high

or low, take the middle! And use your intuition and call references!

:-)

But since there is no great effort to follow up on patients, let alone

let you talk to them, it's hard to find out who is a good doctor.

Except for these types of lists!!!!

:-)

in Oakland

>

>

[Guest guest]

Beth, here's the 64,000 dollar question:

If you had gotten on pain management first, and had good pain control, WOULD YOU

HAVE GONE THROUGH YOUR REVISION SURGERY, knowing you might get you spinal cord

nicked and end up on heavy-duty painkillers permanently?

In other words, was the improved sagittal balance worth this risk, for someone

with no pain, or with minimal pain that is well-managed?

Sharon

Re: Re: To Carole re: Dr. Rand visit, was MS update

My point is, isn't it possible that maybe we should reverse our plan of

attack? Find a qualified Pain Management physician FIRST. Get on a GOOD Pain

Managment regime and get the pain under control. Once that is accomplished, then

go to phase #2.Find the best Orthopedic surgeon or Neurosurgeon (or wherever

your needs fall) to deal with the " deformrity " part of this monster affilction

called Flatback.

[Guest guest]

Beth ~~

Sorry that I wasn't able to respond sooner, but I have just been released

from the hospital after another round with a bowel obstruction. I went in as

an emergency a week ago Saturday and came home last Friday. These are caused

by adhesions, which are caused by surgery, which is another factor to

consider when contemplating any surgery. I've had many abdominal surgeries

(all

very necessary) and am paying for them. Fortunately, none of my tissue had

necrosed this time, so surgery was not necessary. However, it will happen

again,

darned it all!

I think that you are absolutely right on target! Getting control of the

pain changes just about every facet of our lives. I have been fortunate to

have

a major pain clinic quite close by. I will say that I was a patient there

for about two or three years, and we tried everything we could think of to

conquer my back pain. I think I could rightly say that we tried everything

except the intrathecal pump, and that was because I have no place to put it.

Eventually, with the help of my PCP and one other doctor, a formula for pain

control was settled upon. Aware that I often develop a tolerance to meds and

that they, thereby, lose their efficacy, we make a switch every six months or

so. For a long time there were two regimens and we just switched back and

forth. Now, though, there are so many new medications that the " switches " are

more subtle. It may be that one medication replaces another for a while. I

am not unhappy with this regimen, but it did take a lot of patience to get

here.

I've often felt that Dr. Rand doesn't want to touch the surgery done by an

old friend of his. But, on the other hand, I am not at all sure what I would

do if he were to recommend surgery. When I am feeling better I am going to

finish what I started, though, and get some older xrays to him, just for

comments, and try to get my degrees of curvature from him. He certainly owes

me

that!

Thank you for your beautiful post! I am saving it as inspirational reading

for the future. What a great job you did! Thank you, my friend!

Sincerely,

Carole (M)

[Guest guest]

Hi Ann,

Yeah, that was some cruise I took! I've begun to feel a bit better. Thanks

for the good wishes!

Carole M.

[Guest guest]

Loriann, Thank you for your good wishes, as well. I am planning to do much

better!

Carole

[Guest guest]

Oh, poor Carole! I was wondering what you were up to. I'm glad you didn't need

surgery.

Sharon

Re: Re: To Carole re: Dr. Rand visit, was MS update

Beth ~~

Sorry that I wasn't able to respond sooner, but I have just been released

from the hospital after another round with a bowel obstruction. I went in as

an emergency a week ago Saturday and came home last Friday. These are caused

by adhesions, which are caused by surgery, which is another factor to

consider when contemplating any surgery. I've had many abdominal surgeries

(all

very necessary) and am paying for them. Fortunately, none of my tissue had

necrosed this time, so surgery was not necessary. However, it will happen

again,

darned it all!