Re: Revision of a revision?

[Guest guest]

Hi Kelley,

Welcome to the group. What a double rotten thing...first scoli

surgery, then revision which now needs revising. Great.

I have heard of folks in your situation. In fact we have a beloved

member, Dawg, out in Cali. just recouperating from her revised

revision. I am sure if you search the posts and member stories you

can get the full on story. And she is back with us posting now, so I

know she will chime in soon.

I don't really know what to suggest as to your concerns with

choosing a surgeon. It is a difficult thing...but it sounds like you

are trusting your information and instincts and proceeding slowly. I

am a patient of Dr Rands and have had a good recovery and great

outcome, so I can't doubt that you have gotten good info from him. I

worry that you sound like you are thinking geography of a surgeon

should trump skills and ability. I can understand that, but I live

on an island and so I knew I was not going to be close to home no

matter what. I travelled for my opinions, made my decision and have

not regrets. It was a bit of a logistical challenge, but I managed.

travelled from LA to San Francisco to have her surgery with

DrHu which was a challenge, but looks now as if it has paid off.

Whatever you do, make sure whoever you consider for surgery has had

many successful outcomes with folks the same as you. Lots. If they

are hemming and hawing about the number of patients they have

revised a revision on....look a little further!

I hope you will tell us more about yourself as you go along. And

yes...we all are about your age....the lucky ones who had primary

surgery about 20-30 years ago with all the chickens now coming home

to roost!

Take Care, Cam

[Guest guest]

Welcome to the group, Kelley.

Nice looking web site. :^) So are you going to see the First or

his junior? (Seems the tradition of son learning Dad's trade isn't dead

yet!) Both appear to have great credentials.

If either has much experience with flatback revision, we could really use

that information. I've been watching the flatback forums for about 5 years,

and the southeast could definitely use some flatback superstars. I don't

think everyone who has this type of surgery frequents these sites, but if a

name has never come up here it seems unlikely that surgeon has done many

revisions.

So ask lots of questions, and ask for contact information for any past

revision patients.

I wish you luck.

Sharon

[ ] Revision of a revision?

> Hi all,

>

> Well, I had a revision surgery for flatback the end of 1999. I was

> living in Southern CA then and had it done at Loma University

> Hostpital by Dr. Shook. Great guy, but my fusion didn't take

> in several places and now I have 2 loose pedicle screws and I'm

> living on epidural steroid injections. I've since moved to Virginia

> Beach, VA and I'm having trouble finding a surgeon close by. I've

> seen Dr. Rand in Boston and he has a plan and is definitely a doctor

> to trust to this task, but he's so far away from home!

> I've seen a surgeon at the University of Virginia in

> Charlottesville: Dr. Shaffrey who happens to have a double

> certification in neurosurgery and orthopedic surgery, but for some

> reason I just can't feel comfortable with him (no real approach to

> the problem after 3 visits). So, I have an appointment with Dr.

> at the land Spine Center in Baltimore on June

> 20th. I figure it's closer to home than Boston (plus I did their

> web site! ).

> Anyway, while I deal with my obvious confusion about the surgeon,

> has anyone else here had to have a redo of their original revision

> surgery? I absolutely hate the thought of going through it all over

> again, but I've just about lost all feeling in my left foot and the

> outer part of my calf up to my knee and I still have that " forward

> lean " , so I guess it's time to stop procrastinating and get

> something done about this!

> Thanks for any input - it's so cool to find a scoliosis group where

> everyone is so close to my own age(46)!

>

> Kelley

>

>

>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Hi Kelley -

Welcome to our little group...I'm glad you found us! I'm the one Cam

told you about - LOL. I too live in So. Cal, and I've had my had my

original 2001 revision revised, and revised, and revised again. So

no, you are not alone! As wonderful as Loma is, I inquired

there first to have my surgery. But I found that they don't really

have a doc that is up on revision surgery, so I didn't go there.

After having several failed revisions, I found a doc in San

Francisco through this group. And I believe we got it right this

time! I'm two months postop now, and standing tall and proud. And

walking with no pain either! So I agree with cam......you will

probably have to travel some to see a doctor who can fix you up for

good. Unfortunately there are none of these specialists who ever

seem to be close enough to where we live. I didn't really care for

the flying back and forth to Frisco that I had to do, but I know it

was worth it.

And another word of advice - if you don't feel completely

comfortable with a doctor - look for another. In all actuality,

there are probably only about 5 or 6 true revision specialists in

the entire country - and this group knows them all.

Best of luck -

>

> Hi all,

>

> Well, I had a revision surgery for flatback the end of 1999. I

was

> living in Southern CA then and had it done at Loma

University

> Hostpital by Dr. Shook. Great guy, but my fusion didn't

take

> in several places and now I have 2 loose pedicle screws and I'm

> living on epidural steroid injections. I've since moved to

Virginia

> Beach, VA and I'm having trouble finding a surgeon close by. I've

> seen Dr. Rand in Boston and he has a plan and is definitely a

doctor

> to trust to this task, but he's so far away from home!

> I've seen a surgeon at the University of Virginia in

> Charlottesville: Dr. Shaffrey who happens to have a double

> certification in neurosurgery and orthopedic surgery, but for some

> reason I just can't feel comfortable with him (no real approach to

> the problem after 3 visits). So, I have an appointment with Dr.

> at the land Spine Center in Baltimore on June

> 20th. I figure it's closer to home than Boston (plus I did their

> web site! ).

> Anyway, while I deal with my obvious confusion about the surgeon,

> has anyone else here had to have a redo of their original revision

> surgery? I absolutely hate the thought of going through it all

over

> again, but I've just about lost all feeling in my left foot and

the

> outer part of my calf up to my knee and I still have that " forward

> lean " , so I guess it's time to stop procrastinating and get

> something done about this!

> Thanks for any input - it's so cool to find a scoliosis group

where

> everyone is so close to my own age(46)!

>

> Kelley

>

[Guest guest]

I think there are more than 5 or 6, probably more like a dozen, but that's

still not a lot for a country this size.

Let's see, the names I know that have been talked up would be:

Bradford

Hu

Kumar

O'Brien

LaGrone

Bridwell

Lenke

Ondra

Rand

Glazer

Boachie

Farcy

Errico

I've probably overlooked one or two, and not all names have come up

frequently. Probably the real " big guns " for frequency of mention are:

Hu

LaGrone

Bridwell

Rand

Boachie

Please note that this is a completely subjective list based on my perception

of how many patients of each surgeon I've " run into " online over the years.

Sharon

[ ] Re: Revision of a revision?

....In all actuality,

there are probably only about 5 or 6 true revision specialists in

the entire country - and this group knows them all.

Best of luck -

[Guest guest]

" I think there are more than 5 or 6, probably more like a dozen, but

that's

still not a lot for a country this size.

I've probably overlooked one or two, and not all names have come up

> frequently. Probably the real " big guns " for frequency of mention

are: "

>

> Hu

> LaGrone

> Bridwell

> Rand

> Boachie

Pardon my incorrect wording Sharon - instead of sayin there

were " only " 5 or 6 specialists in the country, what I meant was

there are only 5-6 'big gun' specialists in the country........as

you have correctly pointed out.

>

> I think there are more than 5 or 6, probably more like a dozen,

but that's

> still not a lot for a country this size.I've probably overlooked

one or two, and not all names have come up

> >

> Let's see, the names I know that have been talked up would be:

>

> Bradford

> Hu

> Kumar

> O'Brien

> LaGrone

> Bridwell

> Lenke

> Ondra

> Rand

> Glazer

> Boachie

> Farcy

> Errico

>

> I've probably overlooked one or two, and not all names have come

up

> frequently. Probably the real " big guns " for frequency of mention

are:

>

> Hu

> LaGrone

> Bridwell

> Rand

> Boachie

>

> Please note that this is a completely subjective list based on my

perception

> of how many patients of each surgeon I've " run into " online over

the years.

>

> Sharon

>

> [ ] Re: Revision of a revision?

>

>

> ...In all actuality,

> there are probably only about 5 or 6 true revision specialists in

> the entire country - and this group knows them all.

> Best of luck -

>

>

[Guest guest]

,

Not sure if you were looking for feedback on the three questions but

I can relate my experience.

> 1. I'll be in the hospital for a month and my husband won't

be able to stay in the vicinity for any length of time.

Of course this depends on eask individual knowing what will

work...but my two surgeries were 1 week apart, I was hospitalized a

total of 13 days. I think that was a little on the short side, but

it was done. I had my husband in town the night before and 2 days

after surgery. Then he travelled to pick me up. We had a young son

at home and I did not want to leave him without a parent during this

stressful time. I found the staff at NEBH to be very attentive and

don't know that I didn't actually get more attention since the staff

seemed aware that there wasn't much visiting going on for me. You

will feel so crummy for most of the hospitalization that you may

feel better for not having to pull it together for company.

>

> 2. All the pre-op and post-op appointments and the cost of

> traveling. Can a local doctor be assigned and work with the

surgeon for some of these appointments?

I was scheduled for all the pre-op in one day. All the x-rays, blood

work, social work and so forth...about 5 hours worth. If I had

wanted I could have scheduled another get together with Rand but

didn't feel like I needed to. When I was considering Boachie/HSS in

NYC they indicated some of the preliminary work could be done by a

local physician, but I think I recall they wanted their own

cardiologist to do that part.

>

> 3. Autologous blood donation and transfer thereof.

I am pretty sure you are going to find this to be the most

challenging part of arranging surgery, even if you have it in your

back yard. The rules for drawing, storing, shipping and paying for

this seem to be as vast as can be. There is the Red Cross, there are

independant Blood Donor Centers affiliated with hospitals, there is

the donor center at whatever hospital you choose, and it still isn't

easy to figure out what rules will apply. Most everyone on this

board that has had revision has encountered some or many problems so

I would strongly recommend, not matter what, that you at least start

calling locally to figure out what systems/rules are in place that

you can tap into. I did auto donate at the local hospital and there

my own blood was up in the OR for my signature. Amazing.

> Also, I seem to be having trouble finding out about the hospitals

> that some of these surgeons are affiliated with. I want to know

> specifically about the post-op care of spine patients from the

staff on the floor where I'll be recovering. I wasn't at all happy

with some of the past care that I've received in the hospitals where

I've had surgery. Is it possible to get a pre-surgery tour or

something?

When you get to the point of interviewing surgeons this is an easy

question for them to answer. Then you can go to the annual U.S. News

and World report on hospitals and easily access the overall ranking,

complication rates, staff ratios etc..I am not sure about a

presurgery tour but NEBH holds a voluntary " Spine Class " that

introduces you to the whole system and answers broad questions about

the hospital practices and policies. I am sure if I wanted I could

have gotten a tour. You should ask for one if it will make you feel

better.

Loved this line!:

" Whoa! " being the first reaction to looking at one's x- ray isn't

exactly what a patient wants to hear from a potential

surgeon! "

You have plenty of time and lots of tools to figure out what is

right for you. You will get there!

Take Care, Cam

[Guest guest]

Kelley -

Here's what I did with the concerns you are facing:

1) I was in the hospital for a month (6 weeks actually) and my

husband wasn't able to stay in the vicinity either. It was much

eeasier than I had imagined.

2) I had a local doctor who took care of me postoperatively. And I

am flying back to see Dr. Hu for my 3 month check coming up in July.

But as far as preop, nope. I lost count of how many trips I made to

San Francisco prior to surgery. (But it wasn't many - probably only

like 3 or 4).

3)Autologous blood donation - after talking with the doctor about

this, I decided to just go with the blood bank. Donor blood is

probably safer now than it ever was in the past, and I felt

comfortable with it. I donated my own for my revision in 2001, but

that hospital was within driving distance of my home then.

Most hospitals wouldn't hesitate to allow you a tour of their spine

floors. If you decide to go with one of the best known surgeons

that people here have used, then you can get first-hand reports of

the hositals and care provided.

My best,

>

> Hi Cam, Sharon & ,

>

> Thanks for the welcome!

>

> These are my main concerns for having surgery away from home:

>

> 1. I'll be in the hospital for a month and my husband won't

be

> able to stay in the vicinity for any length of time.

>

> 2. All the pre-op and post-op appointments and the cost of

> traveling. Can a local doctor be assigned and work with the

surgeon

> for some of these appointments?

>

> 3. Autologous blood donation and transfer thereof.

>

> Also, I seem to be having trouble finding out about the hospitals

> that some of these surgeons are affiliated with. I want to know

> specifically about the post-op care of spine patients from the

staff

> on the floor where I'll be recovering. I wasn't at all happy with

> some of the past care that I've received in the hospitals where

I've

> had surgery. Is it possible to get a pre-surgery tour or

something?

>

> You're all right! I know that these things shouldn't be " thee "

> deciding factor in the surgeon that I choose.

>

> My appointment is with , Sr., Sharon. I've worked with

> Dr. Antoniades on the Web site and he's a doll, but I wanted to

> choose the surgeon that seemed to have the most experience and

that

> would be , Sr. I hear he's a terrific guy and I'll let you

> all know the outcome. Hopefully, he'll be frank with me if the

case

> is " over his head " so to speak. I actually saw a surgeon here

> locally and he admitted just that - I was appreciative of his

> honesty. ( " Whoa! " being the first reaction to looking at one's x-

> ray isn't exactly what a patient wants to hear from a potential

> surgeon! Ha, ha!)

>

> Thanks so much to all of you for your quick replies.

>

> Kelley

>

[Guest guest]

Kelley,

As much as we love them, having hunnies there at the hospital is

daunting. It takes energy we just don't have to make sure they are

OK. I had revision surgery, two surgeries in two days by Dr Glazer,

Beth Isreal Deaconess, Boston. I sent hunny home as soon as I woke

up from the second surgery. Much better,now I can sleep.

> >

> > Hi Cam, Sharon & ,

> >

> > Thanks for the welcome!

> >

> > These are my main concerns for having surgery away from home:

> >

> > 1. I'll be in the hospital for a month and my husband won't

> be

> > able to stay in the vicinity for any length of time.

> >

> > 2. All the pre-op and post-op appointments and the cost of

> > traveling. Can a local doctor be assigned and work with the

> surgeon

> > for some of these appointments?

> >

> > 3. Autologous blood donation and transfer thereof.

> >

> > Also, I seem to be having trouble finding out about the

hospitals

> > that some of these surgeons are affiliated with. I want to know

> > specifically about the post-op care of spine patients from the

> staff

> > on the floor where I'll be recovering. I wasn't at all happy

with

> > some of the past care that I've received in the hospitals where

> I've

> > had surgery. Is it possible to get a pre-surgery tour or

> something?

> >

> > You're all right! I know that these things shouldn't be " thee "

> > deciding factor in the surgeon that I choose.

> >

> > My appointment is with , Sr., Sharon. I've worked

with

> > Dr. Antoniades on the Web site and he's a doll, but I wanted to

> > choose the surgeon that seemed to have the most experience and

> that

> > would be , Sr. I hear he's a terrific guy and I'll let

you

> > all know the outcome. Hopefully, he'll be frank with me if the

> case

> > is " over his head " so to speak. I actually saw a surgeon here

> > locally and he admitted just that - I was appreciative of his

> > honesty. ( " Whoa! " being the first reaction to looking at one's

x-

> > ray isn't exactly what a patient wants to hear from a potential

> > surgeon! Ha, ha!)

> >

> > Thanks so much to all of you for your quick replies.

> >

> > Kelley

> >

>

[Guest guest]

Don't forget Wood at Mass. General.

In a message dated 6/4/06 2:56:53 PM, sharon.green18@... writes:

think there are more than 5 or 6, probably more like a dozen, but that's

still not a lot for a country this size.

Let's see, the names I know that have been talked up would be:

Bradford

Hu

Kumar

O'Brien

LaGrone

Bridwell

Lenke

Ondra

Rand

Glazer

Boachie

Farcy

Errico

I've probably overlooked one or two, and not all names have come up

frequently.  Probably the real "big guns" for frequency of mention are:

Hu

LaGrone

Bridwell

Rand

Boachie

Please note that this is a completely subjective list based on my perception

of how many patients of each surgeon I've "run into" online over the years.

Sharon

[ ] Re: Revision of a revision?

....In all actuality,

there are probably only about 5 or 6 true revision specialists in

the entire country - and this group knows them all.

Best of luck -

[Guest guest]

He said that he leaned forward but he had not had a prior harrington rod surgery. He did have both anterior and posterior fusions by Rand.

In a message dated 6/5/06 4:21:05 PM, sharon.green18@... writes:

Mm.  He's getting mentioned, but you told me the one patient of his you spoke to didn't even have flatback.  I'm sure he must be a good surgeon, but I wouldn't want to be one of his first flatback cases.

 

Sharon

 

Re: [ ] Re: Revision of a revision?

Yes, I know. That was disconcerting to me as well; however, he was recommended to me by Dr. Hall, my original fusion doctor at Boston Children's Hospital, as well as other sources, including Dr. LaGrone's office in Texas.  Also, Joanne was given his name, and Dr. Glazer mentioned him to .

In a message dated 6/5/06 2:37:59 PM, sharon.green18@... writes:

Kim, I didn't list him because in 5 years on the flatback forums I have never heard from anyone who had revision with him.

 

Sharon

scoliosis veterans * flatback sufferers * revision candidates

[Guest guest]

Oops! I mean, he did have both anterior and posterior fusions by Wood. I have gotten a number of recommendations for Wood from other revisions when I mentioned that I needed revision surgery.

In a message dated 6/5/06 5:51:04 PM, kim1450@... writes:

He said that he leaned forward but he had not had a prior harrington rod surgery.  He did have both anterior and posterior fusions by Rand. 

In a message dated 6/5/06 4:21:05 PM, sharon.green18@... writes:

Mm.  He's getting mentioned, but you told me the one patient of his you spoke to didn't even have flatback.  I'm sure he must be a good surgeon, but I wouldn't want to be one of his first flatback cases.

 

Sharon

 

Re: [ ] Re: Revision of a revision?

Yes, I know. That was disconcerting to me as well; however, he was recommended to me by Dr. Hall, my original fusion doctor at Boston Children's Hospital, as well as other sources, including Dr. LaGrone's office in Texas.  Also, Joanne was given his name, and Dr. Glazer mentioned him to .

In a message dated 6/5/06 2:37:59 PM, sharon.green18@... writes:

Kim, I didn't list him because in 5 years on the flatback forums I have never heard from anyone who had revision with him.

 

Sharon

scoliosis veterans * flatback sufferers * revision candidates

[Guest guest]

Kim, I didn't list him because in 5 years on the flatback forums I have never heard from anyone who had revision with him.

Sharon

[ ] Re: Revision of a revision?...In all actuality,there are probably only about 5 or 6 true revision specialists inthe entire country - and this group knows them all.Best of luck -

[Guest guest]

" he was recommended to me by Dr. Hall, as well as other sources,

including Dr. LaGrone's office in Texas. Also,

> Joanne was given his name, and Dr. Glazer mentioned him to

. "

Sorry Kim, but I agree with Sharon. I'm afraid these credentials

don't make this doctor a qualified revision specialist.

>

> In a message dated 6/5/06 2:37:59 PM, sharon.green18@... writes:

>

>

> > Kim, I didn't list him because in 5 years on the flatback forums

I have

> > never heard from anyone who had revision with him.

> >  

> > Sharon

> >

> >

>

[Guest guest]

Mm. He's getting mentioned, but you told me the one patient of his you spoke to didn't even have flatback. I'm sure he must be a good surgeon, but I wouldn't want to be one of his first flatback cases.

Sharon

Re: [ ] Re: Revision of a revision?

Yes, I know. That was disconcerting to me as well; however, he was recommended to me by Dr. Hall, my original fusion doctor at Boston Children's Hospital, as well as other sources, including Dr. LaGrone's office in Texas. Also, Joanne was given his name, and Dr. Glazer mentioned him to .In a message dated 6/5/06 2:37:59 PM, sharon.green18@... writes:

Kim, I didn't list him because in 5 years on the flatback forums I have never heard from anyone who had revision with him. Sharon

[Guest guest]

>

> Kim, I didn't list him because in 5 years on the flatback forums I

have never heard from anyone who had revision with him.

>

> Sharon

> [ ] Re: Revision of a revision?

>

>

> ...In all actuality,

> there are probably only about 5 or 6 true revision specialists

in

> the entire country - and this group knows them all.

> Best of luck -

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>