Re: Your Experience

November 3, 2005

Please check out the Feisty message archives. You can even input a search term, e.g., "Boston," and pull up everything we've written over the past five years. I had surgery there with Dr. Rand at New England Baptist and was very happy.

We also have multiple resources available at the site which should help you get filled in on the answers to all of your questions.

Best,

ksmith1450 <ksmith1450@...> wrote:

Hello! I am wondering if anyone had surgery performed in the Bostonarea. Who was your surgeon? What was your experience? I underwentmy original Harring rod fusion from T2 to L3 in the 1970s. I amconcerned that I am not getting any younger and if surgery isinevitable, it is probably better to get it over with and to do sosooner rather than later. Under what circumstances is surgeryabsolutely indicated. Also, I recently learned of the vascularconcerns and other issues. I would appreciate hearing from you. Thank you!

November 3, 2005

At what levels were you fused prior to the revision

surgery? When did you have your revision surgery? I

understand that you are from Chicago. I am surprised

that Chicago does not have resources comparable to

Boston.

--- Rasche

<feistyfounder@...> wrote:

> Please check out the Feisty message archives. You

> can even input a search term, e.g., " Boston, " and

> pull up everything we've written over the past five

> years. I had surgery there with Dr. Rand at

> New England Baptist and was very happy.

>

> We also have multiple resources available at the

> site which should help you get filled in on the

> answers to all of your questions.

>

> Best,

>

> ksmith1450 <ksmith1450@...> wrote:

> Hello! I am wondering if anyone had surgery

> performed in the Boston

> area. Who was your surgeon? What was your

> experience? I underwent

> my original Harring rod fusion from T2 to L3 in the

> 1970s. I am

> concerned that I am not getting any younger and if

> surgery is

> inevitable, it is probably better to get it over

> with and to do so

> sooner rather than later. Under what circumstances

> is surgery

> absolutely indicated. Also, I recently learned of

> the vascular

> concerns and other issues. I would appreciate

> hearing from you.

> Thank you!

>

> Support for scoliosis-surgery veterans with

> Harrington Rod Malalignment Syndrome. Not medical

> advice. Group does not control ads or endorse any

> advertised products.

>

November 9, 2005

Hi again, Kim --

O.K., I guess I don't mind repeating my story -- but once more, I

would also urge you to visit the Feisty website (assuming you have

not yet done so --

) and

explore the message archives and other resources. You will find many

of our individual case histories, comments on various doctors, etc.

I was fused from T5-T12 at age 13, without instrumentation. I

experienced scoliotic deterioration in 1986, in my late thirties.

This was treated by the DeWald group at Rush Medical Center in

Chicago. My surgeon, Kim Hammerberg, MD, extended my fusion to L-4

at that time, causing the flatback syndrome which eventually

necessitated revision surgery.

I have had approximately six revision procedures, the first two of

these (anterior-posterior, separated by one week) at New England

Baptist Hospital in 2001. I chose to have the earliest procedures

done by Rand, MD, after sending my films to various other

surgeons in other parts of the country and conferring with them by

phone and letter. I had also learned of a neurosurgeon at

Northwestern University in Chicago, Ondra, MD, who was

reportedly experienced wih flatback revision, but I had some trouble

getting a firm appointment with him because of intervening events

such as one of his trips to the People's Republic of China (where he

later operated on the daughter of the premier). By this time, I was

carrying my torso at a ninety-degree angle to the ground, could not

walk without the support of a walker, and was barely functional in

daily life. I did not know how much longer I could even think of

traveling anywhere for surgery, so I went ahead and committed to

surgery with Dr. Rand. He did an excellent and amazing job on my

spine, operating on me for a total of about 18 hours and extending

the fusion to S-1. For a year or more afterwards, people continued

to greet me with astonishment and use terms such as " miracle " in

referring to the restructuring of my back.

Unfortunately I was still in bad pain, which became unendurable by

late 2003. This time I did manage to get together with Dr.Ondra here

in Chicago. I liked him and judged him to be as well qualified and

expert as Dr. Rand, so I checked into Northwestern for additional

revision in early 2004. I needed my pelvic bolts removed because

their positioning was causing some of the worst pain. We also

decided on additional correction involving several new pedicle

subtraction osteotomies because, somewhat mysteriously, my sagittal

deformity was measured at 11 cm on the SRS plumbline test. Friends

and family were certain that I had been much straighter after the

Boston surgery, but Dr. Ondra was adamant that I could not have lost

correction since then. He did two more posterior procedures,

totaling some 18-19 hours, during which he reduced the sagittal

deviation to 1 or 2 cm. He subsequently performed a third procedure

which perhaps does not technically qualify as a revision --I was

running a very high fever and was presumed to be riddled with

infection, but Ondra found only a hematoma which he evacuated in the

course of a relatively short (five-hour) operation. The fever was

apparently related to a vancomycin allergy, finally diagnosed by a

team of dermatologists and allergists who had me on sterioids and

frequent monitoring for some weeks afterwards while I remained

flaming red and itching from head to toe.

At long last, I got to go home. Two weeks later, I was back in the

hospital on complete bed rest and scheduled for an emergency

procedure to revise my revision. I was badly stooped over, having

lost much of my recent correction, and in considerable pain from

what proved to be a stress fracture around T10-T11. The fracture was

on the verge of extending to my spinal cord and rendering me

paraplegic. Dr. Ondra went in one more time and devised a kind of

support structure for my upper thoracic spine to prevent future

problems. While I was in surgery, my spine fractured in another

place as well.

Since then I have done reasonably well, except for continuing pain

and less stamina than I would like. I now have an implanted morphine

pump. I also take my Fosamax religiously. (I am 56 years old and

have had full-fledged osteoporosis for several years now.) I have

not been able to return to work or career commitments outside my

little home office.

Before the initial revision in Boston, I did see several spinal

surgeons in Chicago. The first one I saw was Dr. Hammerberg, who

diagnosed my flatback syndrome but told me it was a result of disk

deterioration. The next four or five doctors told me the truth. A

kindly older scoliosis surgeon, Dr. Schafer at Northwestern,

was especially frank with me, as he studied my x-rays, in commenting

on the severe damage I had sustained from the Harrington rod. I

sensed his sorrow, and even some degree of shock at my condition, as

he said, " We just didn't know any better back then, . " I

did not think to ask whether he realized that my rod had been

installed in 1986 (at which time, if I'm not mistaken, LaGrone --

then at the University of Washington -- and other young spinal

surgeons were already beginning to perform the earliest revisions

for iatrogenic flatback syndrome). Given my history, I was not eager

to head into the O.R. with the first few surgeons who volunteered to

try and undo the damage.

In Chicago, both Dr. Shafer and Dr. Hammerberg (among other surgeons

in other cities) wanted to perform my initial revision surgery. At

the time, however, each of these two local volunteers had done only

about five such revisions. As best I could determine, some of their

revision patients at that time were not faring particularly well.(As

you probably know, this type of revision surgery is a challenging

and complex undertaking, requiring considerably more experience and

expertise than does basic scoliosis correction.)

Dr. Rand, in contrast, had been correcting flatback syndrome for

some years, was continuing to perform flatback revision surgery

about once a month, and had an excellent track record. I held out

for someone of his experience despite the 1,000-mile trip involved

and despite a four-year battle with my reluctant insurance carrier.

All in all,I believe I made the right decision. I am happy with the

work performed on my spine by both Rand in Boston and Ondra in

Chicago.

Best,

> > Hello! I am wondering if anyone had surgery

> > performed in the Boston

> > area. Who was your surgeon? What was your

> > experience? I underwent

> > my original Harring rod fusion from T2 to L3 in the

> > 1970s. I am

> > concerned that I am not getting any younger and if

> > surgery is

> > inevitable, it is probably better to get it over

> > with and to do so

> > sooner rather than later. Under what circumstances

> > is surgery

> > absolutely indicated. Also, I recently learned of

> > the vascular

> > concerns and other issues. I would appreciate

> > hearing from you.

> > Thank you!

> >

> > Support for scoliosis-surgery veterans with

> > Harrington Rod Malalignment Syndrome. Not medical

> > advice. Group does not control ads or endorse any

> > advertised products.

> >

December 13, 2005

UCSF is considered tops on the West Coast and is well known

nationwide -- probably worldwide -- for flatback revision surgery.

Dr. Bradford was the elder pioneer there. I have heard many good

things about some of his former trainees, especially Dr. Serena Hu.

The place to go for revision in Chicago is Northwestern University,

where Dr. Ondra -- and here I speak from personal

experience -- is tops. I can not say enough good things about this

remarkably skilled, experienced, and personable neurosurgeon who has

now operated on me four times.

> > > Hello! I am wondering if anyone had surgery

> > > performed in the Boston

> > > area. Who was your surgeon? What was your

> > > experience? I underwent

> > > my original Harring rod fusion from T2 to L3 in the

> > > 1970s. I am

> > > concerned that I am not getting any younger and if

> > > surgery is

> > > inevitable, it is probably better to get it over

> > > with and to do so

> > > sooner rather than later. Under what circumstances

> > > is surgery

> > > absolutely indicated. Also, I recently learned of

> > > the vascular

> > > concerns and other issues. I would appreciate

> > > hearing from you.

> > > Thank you!

> > >

> > > Support for scoliosis-surgery veterans with

> > > Harrington Rod Malalignment Syndrome. Not medical

> > > advice. Group does not control ads or endorse any

> > > advertised products.

> > >

December 13, 2005

UCSF is considered tops on the West Coast and is well known

nationwide -- probably worldwide -- for flatback revision surgery.

Dr. Bradford was the elder pioneer there. I have heard many good

things about some of his former trainees, especially Dr. Serena Hu.

The place to go for revision in Chicago is Northwestern University,

where Dr. Ondra -- and here I speak from personal

experience -- is tops. I can not say enough good things about this

remarkably skilled, experienced, and personable neurosurgeon who has

now operated on me four times.

> > > Hello! I am wondering if anyone had surgery

> > > performed in the Boston

> > > area. Who was your surgeon? What was your

> > > experience? I underwent

> > > my original Harring rod fusion from T2 to L3 in the

> > > 1970s. I am

> > > concerned that I am not getting any younger and if

> > > surgery is

> > > inevitable, it is probably better to get it over

> > > with and to do so

> > > sooner rather than later. Under what circumstances

> > > is surgery

> > > absolutely indicated. Also, I recently learned of

> > > the vascular

> > > concerns and other issues. I would appreciate

> > > hearing from you.

> > > Thank you!

> > >

> > > Support for scoliosis-surgery veterans with

> > > Harrington Rod Malalignment Syndrome. Not medical

> > > advice. Group does not control ads or endorse any

> > > advertised products.

> > >

December 14, 2005

Thank you so much for you email. I just had a sigh of relief re: UCSF and Dr Serena Hu. I am so scared to go through another 16 level revision, and would really love to talk to some of her patients recovered or not. My previous surgeries have been with another doctor local to me obviously with no relief... Please God let this one work!! Thanks again, Kim Rasche <feistyfounder@...> wrote: UCSF is considered tops on the West Coast and is well known nationwide -- probably worldwide -- for flatback revision surgery. Dr. Bradford was the elder pioneer there. I have heard many good things about some of his former trainees, especially Dr. Serena Hu.The place to go for revision in Chicago is Northwestern University, where Dr. Ondra -- and here I speak from personal

experience -- is tops. I can not say enough good things about this remarkably skilled, experienced, and personable neurosurgeon who has now operated on me four times.> > > Hello! I am wondering if anyone had surgery> > > performed in the Boston> > > area. Who was your surgeon? What was your> > > experience? I underwent> > > my original Harring rod fusion from T2 to L3 in the> > > 1970s. I am> > > concerned that I am not getting any younger and if> > > surgery is> > > inevitable, it is probably better to get it over> > > with and to do so> > > sooner rather than later. Under what circumstances> > > is surgery> > > absolutely indicated. Also, I recently learned of> > > the vascular> > >

concerns and other issues. I would appreciate> > > hearing from you. > > > Thank you!> > > > > > > > > > > > > > > > > > > > > > > > > > > Support for scoliosis-surgery veterans with> > > Harrington Rod Malalignment Syndrome. Not medical> > > advice. Group does not control ads or endorse any> > > advertised products. > > > > > > > > > > > >

December 15, 2005

It's good to hear from you again. I want to mention just one minor concern: I trust you understand that we are not emailing each other privately? This sometimes get confusing when you have "feisty" posts sent to your private email. -- I sometimes have to double-check to make sure that I have not mixed up a post to the forum with a personal email to me. Just to confuse things further, if you want to lower the number of private emails you receive, you can send and receive posts via our online website, / -- click on "Messages" at the lefthand side of the page, or go directly to /messages. You may also be interested in the other

resources available at the site, e.g., in the "Files" area. Of course you are always welcome to write to me privately as well, at feistyfounder@..., but when you use the feistyflatbackers address, your letter is going out to several hundred other people.Often this is a big plus in terms of finding the information you need. For instance, I am hoping that other members on the West Coast who may have consulted with revision surgeons at UCSF will see your post and perhaps provide more facts and personal experiences than I can. . Please believe me when I say that I can empathize totally with your fear of another extensive spinal operation. I have never encountered anyone in our group of more than 500 members who was laid back about revision surgery. I have been where you are -- hunched over, needing a walker, coming to grips with the realization

that revision surgery was my only hope. Still, most of us were terrified before we finally went through with the surgery. This is a major life decision. I commend you for wanting to research your options as thoroughly as possible. It is so important to make sure that you are working with a truly expert and trustworthy revision surgeon at a high-quality medical center. One more thing you can do at the feisty website, as part of your pre-op research, is to browse through some of the archived messages. If you are looking for a specific subject, you can input a search term in the box provided. For example, I expect a search for "Hu" or "UCSF," would bring up many comments and opinions. Thanks so much for participating in this forum, and please keep us posted as you proceed with your decision making. By sharing your own experiences, you are providing help and support for

any number of other members, including newcomers who may be facing similar concerns and questions down the road. Best, Prescott <kyprescott@...> wrote: Thank you so much for you email. I just had a sigh of relief re: UCSF and Dr Serena Hu. I am so scared to go through another 16 level revision, and would really love to talk to some of her patients recovered or not. My previous surgeries have been with another doctor local to me obviously with no relief... Please God let this one work!! Thanks again, Kim Rasche <feistyfounder@...> wrote: UCSF is considered

tops on the West Coast and is well known nationwide -- probably worldwide -- for flatback revision surgery. Dr. Bradford was the elder pioneer there. I have heard many good things about some of his former trainees, especially Dr. Serena Hu.The place to go for revision in Chicago is Northwestern University, where Dr. Ondra -- and here I speak from personal experience -- is tops. I can not say enough good things about this remarkably skilled, experienced, and personable neurosurgeon who has now operated on me four times.> > > Hello! I am wondering if anyone had surgery> > > performed in the Boston> > > area. Who was your surgeon? What was your> > > experience? I underwent> > > my original Harring rod fusion from T2 to L3 in the> > > 1970s. I am> > > concerned that I am not getting any younger and

if> > > surgery is> > > inevitable, it is probably better to get it over> > > with and to do so> > > sooner rather than later. Under what circumstances> > > is surgery> > > absolutely indicated. Also, I recently learned of> > > the vascular> > > concerns and other issues. I would appreciate> > > hearing from you. > > > Thank you!> > > > > > > > > > > > > > > > > > > > > > > > > > > Support for scoliosis-surgery veterans with> > > Harrington Rod Malalignment Syndrome. Not medical> > > advice. Group does not control ads or endorse any> > > advertised products. > > > > > > > > > > > >

January 25, 2010

New police are now required to have training on DD including Autism. There is

no state requirement to train existing/current officers. There is training

available out there and many Departments in McHenry County, Lake County, and a

few in northern Cook County have done that training. Ellen, remember the

presentations we had at the " work group " ? I serve on the State of Illinois

Department of Human Service Office of Inspector General over-site Board, and we

have attempted to change the requirement so that all officers receive training.

We have not been successful. The reason? Money. It would be an unfunded

mandate for local government if the state doesn't pay... and our state... well

enough said.

Rubin<mailto:brian@...> (www.Rubin.com)

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________________________________

From: IPADDUnite [mailto:IPADDUnite ] On Behalf

Of Bonnie Dohogne

Sent: Monday, January 25, 2010 11:37 AM

IPADDUnitegroups

Subject: your experience

Hi,

I've been meeting with a group of parents of transition age

kids/young adults - mostly from ton. Someone's raised the concern

about one of our kids on the autism spectrum being stopped by the

police and not understanding the situation.

I've learned that the ton Police Dept.

currently isn't doing any training about PwD. A police commander did

offer to distribute to all police a sheet about characteristics of

people on the spectrum. We also discussed ID cards (I saw some at

www.autismcards.com).

Wondering what, if any, training is done for police in your communities. And has

anyone used such an autism ID card?

Thanks in advance.

Bonnie Dohogne

January 25, 2010