RE: Flatback surgery delay

[Guest guest]

As it so happens, I will be going back to the Spine Clinic, but not to the same surgeon, as I have little confidence in him. His definition of Flatback was to be fused right to S1, not L3. I did confirm with the Medical Advisor of my Scoliosis Association, to confirm the "Canadian" definition, just in case it was different from the American version (which it is not). My need for medication has increased, in order to function to take care of my mother's and brother's needs, as needed. I have noticed an increase of nerve damage in my legs & feet, and have started to notice again in the hands. I'm also having to rely on the cane more inside the house, which I only used the walls & furniture to help with balance. So, though I try not to let my condition control my life, I have noticed a lot of deterioration, including above the fusion.

I believe that the knowledge & expertise of Flatback Revision Surgeons is even less in Canada than it is in the States, as I seem to have to do some basic education to a lot of people along the way. Of it could be, partly political & surgeon success rate, that this particular surgeon wanted to keep his high success rate of surgeries and the extra dollars he could collect from the government medical system. Who knows, but after I had calmed down after the shock, I was definitely not impressed with his behaviour. It took him over 3 months to get a report to my own doctor, and I have never gotten a copy with my repeated requests(that was 2 years ago).

Llweyn

From: [mailto: ] On Behalf Of Rasche Sent: September 18, 2008 3:47 PM Subject: Re: Revision to risky/ & khasch68

I couldn't agree more, Llweyn. Thank you so much for sharing suchthoughtful and detailed advice. I trust that our other member with thecervical issues will find it valuable as well.It puzzles me that your surgeon would have said it was too early torevise your flatback syndrome. We have talked so often here aboutwhether it is better to get the surgery sooner rather than later interms of arresting the deterioration. What is your surgeon's rationalefor putting you off, I wonder. And would you get a differet answer nowif you went back? It sounds as if this might be a good time for you toreconsider it . . . .? Personally, I feel the best about doctors whoput it in the patient's hands -- the timing decision, I mean. It seemsthat you -- not your doctor -- are the best and most reliable expertwhen it comes to scheduling an important major intervention like this.After all, it's your body and your life -- not your surgeon's! (And ifyou did want to have early surgery, hypothetically, on what groundswould he or could he object? Would he really prefer to wait until yourflatback had further worsened and disrupted your functioning? If so,why? -- just so he could have the more interesting challenge of a moresevere case?)Best,

..

[Guest guest]

Llewyn, I seem to have read your later post before this earlier one.

I am even more concerned about the postponement of your surgery now

that I have read about your worsening signs and symptoms (nerve

damage, etc.)

What does your regular physician think about the surgeon's decisions

and conclusions?

I sure hope you can get to a better surgeon than the one who sent you

away. Let me stick my neck out a little farther and say I am pretty

shocked that anyone could refuse you surgery while in the same

consultation concluding that you need to be fused all the way to the

sacrum.

When I finally got to Rand after four years of insurance and

other delays, he ordered bending films to assess my flexibility. He

said this would determine how extensively I needed to be fused. Since

the bending films showed I had basically no flexibility left at all,

he decided to fuse to S-1. Admittedly I was relieved at the time,

having heard that people with shorter fusions into the lumbar area

were likely to need more fusion anyway eventually.

The physician I was seeing here in Chicago saw me at every step of the

way, from my initial realization of an incipient deformity to the

stage at which I could no longer straighten up at all and could barely

get through the day. She commented after my revision that it was a

wonder I had arrived at the surgery without any serious sensory

deficit or loss of bladder control. I believe that, as of 2001, I was

Dr. Rand's second most seriously deformed patient with flatback.

At that time Rand was performing at least one flatback revision

procedure per month and had been doing so for a good many years. If

only you could find someone equally experienced in Canada. It is so

disheartening to hear from you and other Canadian members that they

are hitting roadblocks in this regard. What would it take for you to

come to the US for your surgery, or at least for a second opinion, if

you ultimately did conclude that you were not getting adequate help at

home?

Have you been able to find out what kind of track record your spine

surgeons have with flatback deformities specifically?

You have been an outstanding and well-informed member of this forum

for so long now. It doesn't seem right that you still have not

obtained the surgery you need, especially in view of the family

burdens you have had to assume. I wish I had some concrete help or

advice to offer. I wish we had a mass of hard, persuasive data on

flatback revision outcomes with which to storm the bastions of the

practitioners and payers who so often hold our fate in their clumsy hands.

Best,

-- In , " Llweyn Friars "

<mad.monk@...> wrote:

>

> As it so happens, I will be going back to the Spine Clinic, but not

to the

> same surgeon, as I have little confidence in him. His definition of

Flatback

> was to be fused right to S1, not L3. I did confirm with the Medical

Advisor

> of my Scoliosis Association, to confirm the " Canadian " definition,

just in

> case it was different from the American version (which it is not).

My need

> for medication has increased, in order to function to take care of my

> mother's and brother's needs, as needed. I have noticed an increase

of nerve

> damage in my legs & feet, and have started to notice again in the

hands. I'm

> also having to rely on the cane more inside the house, which I only

used the

> walls & furniture to help with balance. So, though I try not to let my

> condition control my life, I have noticed a lot of deterioration,

including

> above the fusion.

>

> I believe that the knowledge & expertise of Flatback Revision

Surgeons is

> even less in Canada than it is in the States, as I seem to have to

do some

> basic education to a lot of people along the way. Of it could be, partly

> political & surgeon success rate, that this particular surgeon wanted to

> keep his high success rate of surgeries and the extra dollars he could

> collect from the government medical system. Who knows, but after I had

> calmed down after the shock, I was definitely not impressed with his

> behaviour. It took him over 3 months to get a report to my own

doctor, and I

> have never gotten a copy with my repeated requests(that was 2 years

ago).

>

> Llweyn

> _____

>

> From:

> [mailto: ] On Behalf Of

> Rasche

> Sent: September 18, 2008 3:47 PM

>

> Subject: Re: Revision to risky/ & khasch68

>

>

>

> I couldn't agree more, Llweyn. Thank you so much for sharing such

> thoughtful and detailed advice. I trust that our other member with the

> cervical issues will find it valuable as well.

>

> It puzzles me that your surgeon would have said it was too early to

> revise your flatback syndrome. We have talked so often here about

> whether it is better to get the surgery sooner rather than later in

> terms of arresting the deterioration. What is your surgeon's rationale

> for putting you off, I wonder. And would you get a differet answer now

> if you went back? It sounds as if this might be a good time for you to

> reconsider it . . . .? Personally, I feel the best about doctors who

> put it in the patient's hands -- the timing decision, I mean. It seems

> that you -- not your doctor -- are the best and most reliable expert

> when it comes to scheduling an important major intervention like this.

> After all, it's your body and your life -- not your surgeon's! (And if

> you did want to have early surgery, hypothetically, on what grounds

> would he or could he object? Would he really prefer to wait until your

> flatback had further worsened and disrupted your functioning? If so,

> why? -- just so he could have the more interesting challenge of a more

> severe case?)

>

> Best,

>

>

> .

>

>

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> =15027/stime=1221778036/nc1=5191949/nc2=5191951/nc3=5202317>

>