Re: Flatback Syndrome SUCCESS: There is hope!

[Guest guest]

sDear ,

Welcome to the group, and thank you for your recent post. I am glad

to hear that you have had such a successful outcome after all the

suffering you went through.

I realize you may be new to our group and may not realize that we are

very careful in what we say about some of these subjects, given that

all of us are different and that this site does not promote or

recommend any specific physician. The most important point I want to

make as longtime list owner and informal flat back information person

is that NO surgeon can guarantee or promise the kind of stellar

results you got from your revision surgery. Many patients with severe

progressive flat back syndrome need to adapt to somewhat less pain

relief and general life satisfaction, even after comprehensive

anterior and posterior revision by one of the " stars " (Bradford,

Boachie-Adjei, Lagrone, Ondra, Rand, the Minneapolis and St. Louis

groups, et al).

Dr. Berven is certainly on our list of acceptable surgeons for flat

back revision surgery, as a relative newcomer to the UCSF group.Some

of our members have had their revisions peformed by Berven, with

varying degrees of post-op satisfaction; more, perhaps, have had

surgery with the more experienced Serena Hu or the group-

" granddaddy, " Bradford. (Is he retired now?) We had another

former UCSF/Bradford protegee on our list at one time -- a surgeon

who had settled in Southern California -- but we no longer think she

is up to standards.

It is incorrect to describe Sigrid Berven, however, as

" a doctor who was the mentor of the doctor that recognized

> and refined surgery for Flatback Syndrome. "

As you probably meant to say, Berven was not Bradford's mentor, but

vice-versa; Berven trained under Bradford. And Bradford is only one

of the " grand old men " of revision surgery; it is debatable, to say

the least, whether he was the first of these stellar surgeons

to " recognize and refine surgery for Flatback Syndrome. " (I am not

sure what you mean by this, exactly -- that he was among the first to

recognize iatrogenic flatback syndrome secondary to nonsegmental

instrumentation? To develop one or more of the methodologies now used

in revision surgery? To refine someone else's methodology?)

I am not clear from your post whether you are familiar with any of

the other surgeons (e.g., those mentioned in para. 2 of this reply)

who began the pioneering work of flatback revision surgery during the

same general period as Bradford began his revision work. All of

thesee people should be listed and discussed in our on-site resouerce

material (where we also have several of Berven's papers archived, by

the way, at Berven's request). If you go through the bibliographies,

revision-surgeon CVs, and medical databases in general, you will find

the same names popping up again and again as co-authors. It's

possible Bradford was the very first, but I do not get that

impression. I would be interested in any data you might have in

support of this assertion.

Mina has been discussed and praised here many times through

the years. Many of us " old-timers " feel we owe her just about

everything. A now-inactive member of this group, Suzy Habibi, was at

one time archiving 's writings at her own website, which she

started under 's guidance. Later on, both women appeared to

have withdrawn from active web participation. At this point

Mina's groundbreaking historical documents -- which she produced

entirely on her own time, researching and interviewing the necessary

authorities extensively, subjecting her copy to medical review,

posting her manuscripts online for free duplication and distribution

by any interested party -- were archived by several of us at several

different sites, with the hope that they would thus remain available

and valuable to a whole new generation of flatbackers. You will find

them not only at at the website you cited, but also at this website

and at Flatback-Revised, possibly among others.

Finally, I would like to caution you respectfully that, as inspiring

and hopeful as your narrative is, we need to take great care in

citing our own particular experience as reason for others to expect a

similar outcome. I have encountered several other revision veterans

who report results as good as yours -- and many others who have not

been quite so lucky; who must continue to accept some degree of pain

and disability in their daily lives. I myself (as of age 58) have had

eight revision surgeries, performed by two of the most outstanding

revision surgeons in the country. I am very fortunate to appear

cosmetically, aesthetically normal (afer previously hunching over a

walker, torso at a ninety-degree angle to the ground, neck

chronically hyperexteneded, attracting stares wherever I went, etc.).

I have also experienced SOME pain relief, but nothing as impressive

as your apparent freedom from pain. In fact, I could not function at

all without my own intrathecal infusion pump, which gives me 5 mg

Dilaudid daily. I am sorry your own intrathecal Dilaudid regimen was

unsuccessful at a time when you were still badly in need of some pain

relief -- but to me and others, the pump has been a godsend and a

virtual lifesaver.

Nonetheless, I have remained totally disabled for the past ten years.

I do not expect to return to my previous careers in law or medical

publishing and am working to develop a home-based free-lance writing

practice that can help to sustain me. I can not begin to theorize why

some of us continue to struggle with fairly formidable obstacles

while others, like you, seem to have experienced the quintessential

Happy Ending! I rejoice for you and your heaiing -- just please

remember that you are probably closer to the exception than to the

rule among the estiamted one million of us who were crippled by the

Harrington rod. Ultimately, drawing on any kind of group or social

support available as well as on the medical resources we locate,

each of us must find her own way back to a livable life. Some of us

may ultimately triumph or succeed or regard our lives as gratifying

and worthwhile not because of extensive spinal surgery, but perhaps

in spite of it!

Best,

>

>

> For most of my life I suffered, as you have, with Scoliosis. In

1998

> I had two lamenectomies that were complete failures. I was

crippled

> with the resulting Flatback Syndrome. For six years of hell, I was

> relegated to a walker and if there was any distance involved, a

wheel

> chair. The pain was unimaginable. I went so far as to have a pain

> pump implanted that sent dilatud directly into my spine. No

> success. The pain and subsequent depression over the loss of my

> former life and what the future held for me, was more than

> devastating. I was suicidal and there was a point where I could no

> longer survive for the sake of my children. The drugs diminished

my

> mind and I lost many friends. Having once been a CEO of a multi

> million dollar company, I was reduced to hardly having the

> ability/will to just writing checks for personal bills.

>

> After hours and hours of research (it consumed my life)I came upon

> the name of a doctor who was the mentor of the doctor that

recognized

> and refined surgery for Flatback Syndrome. In 2005 I underwent two

> 10 hour surgeries (within days of each other) and I literally

walked

> out completely upright and pain free. It was the miracle I thought

I

> would never live to see! It has been two years and no one would

ever

> believe that I had suffered so. I no longer show any visible (and

> psychological)disabilities, with the exception of memory loss from

> those painful years. I lost 6 years of my life that can never be

> restored. But the future couldn't be brighter!

>

> The doctor's name is Sigurd Berven, MD. His address is: 400

Parnassus

> Ave, 3rd floor San Francisco, California 94143. His contact phone

> numbers are: Clinic (415) 353-2218 and Office (415) 514-2064. The

> staff is extremely professional and understanding of what you are

> going through. They calmed the frightening fear of another

> unsuccessful surgery. Dr. Berven is a kind,compassionate, caring

man

> who is dedicated to healing those of us who suffer so. I can't say

> enough about the total success of my surgeries, or him. You can

> google " Dr. Siguard Berven " for two profiles of him. They know me

> well, so feel free to mention my name, Bratspis, as one of

> their referrals. I have referred to other people to him and they

too

> have enjoyed total success.

>

> For a complete and indepth description of the surgery, there is a

Web

> Site by Mina entitled FLATBACK-ELIZABETH NINA. The web

> site is www.scoliosisnutty.com/php?pg=116. It is worth reading for

> anyone suffering with Flat Back Syndrome. It also has link for

> scoliosis.

>

> I hope that this gives you some hope. I know how desperate I was

to

> think that I was destined to live(?) a life of pain and disablity.

> Please feel free to contact me if you have any questions or need

> reassurance. It is a lonely disease and I know how important it is

to

> reach out to someone who understands.

>