Re: Revision Surgery for Flatback

[Guest guest]

Hi ...

I have had both surgeries (although they were done in one day, and not as a revision, and I was only 42 at the time).

I wanted to introduce myself, because I run the scoliosis support group for the SF bay area. I can tell you that I think you’re in excellent hands with Dr. Berven. I have 100% confidence in him. If you email me privately (lindaracine @ earthlink.net, without the spaces) I can give you the contact information for a few people who had the same surgeries done by Dr. Berven.

Regards,

On 12/26/06 4:50 PM, " cynthben " <cynthben@...> wrote:

I am a new member of your group, considering revision surgery to

correct a Harrington rod surgery for scoliosis in 1994. At that

time, I was fused from L-5 to T-4 or 5 (12 vertebrae fused). For

about 10 years I was in fairly good shape, walking, skiing and

biking. In the past three years, I started having severe sciatica

with standing or walking, and now can hardly walk around the block.

I am also starting to lean forward more and more. Since I am 66,

although still in very good health and working full time with my own

business, I feel as if I need to have this surgery before it is too

late. When I had the first surgery, however, I thought it

would " fix " me for life. I had no idea of the flatback syndrome,

nor was I told that the vertebrae under the fusion wouldn't

ultimately be able to hold up the rest of my spine. I have been to

see Dr. Sigurd Berven in San Francisco, who is at UCSF, and is the

successor to Dr. Bradford. He recommends two surgeries, one

posterior, and then four days later, another anterior to do bone

fusions. I am terrified at the idea of two surgeries, and feel that

this just has that much chance of more complications. Has anyone in

your group had this dual procedure, and done well with it? I would

love to get any information, good and bad, about this, and what the

benefits or complications might be, and also what is the

recuperation time period, etc. I also have had two other names of

possible surgeons: Dr. LaGrone in Amarillo, and Dr. Bridewell in

St. Louis, MO. Thanks for your help.

[Guest guest]

Hi ,

Welcome to the group. You sound like you have gotten some good

information to start on...so as sorry as I am to hear that you are

in pain and contemplating a future surgery, but at least you have

had a good evaluation from a top spinal deformity surgeon.

I had a staged procedure, two years ago this February, one week

apart. This seems to becoming as common as the long one day series

of surgeries. I believe there are many reasons surgeons choose to do

them spaced out, but one of them can be that the shorter surgical

time of each staged surgeries can mean less blood loss, less

anesthesia or other challenges. For my surgeon there is also the

convenience of having the times line up nicely so that the vascular

surgeon has the first " go " on day #2, so there is no standing around

and waiting for another surgeon to be there and ready to step into

their " part " . Anyway, I was 48 at the time and decided that the two

day/staged approach made sense for me...and I have had a good

recovery.

I don't know how to compare for your what your recovery might be

like since you are comparing your previous recovery when you were

closer to the age I am at now. I did not feel too great for the

first 2-3 months after surgery...and then recovery was slow and

steady, but I don't think I have really regained most of my strength

and stamina until the 12-18 month post op period. I still feel like

I can gain more strength and stretch.

You didn't say exactly, but are they now proposing to fuse you to

the sacrum? I think if you are in the Northern Cali area, you are in

good hands...but you have some good names there if you want to get a

second opinion.

There is a lot of info on members in the files section...many of the

members who post regularly have had a staged revision surgery as you

are contmeplating...so if you have questions or just want

companionnship in this scoli-odessy...we are here for you.

Take Care, Cam

[Guest guest]

Hello , and welcome! You will find this little group to be

very informative and supportive regarding your new and unexpected

journey with flatback. All of us have dealt with the same thing you

now face.....we have either had the revision surgery already, need

to have it in the future, can't decide whether to have it or not, or

just plain 'ol don't want it. I think you'll find many answers to

your questions here too. Most all of us thought we were " fixed "

following our original Harrington Rod surgery and had many good

years - until our lower backs gave out. You will also find many who

have had the surgery done in 2 stages, and then again many who had

the entire thing done in one procedure. Where do you live ?

You have found who THE best revision specialists are I see; Dr.

Berven and Dr. Hu at UCSF are the tops here on the west coast. I

myself had my second revision just this past March at UCSF. I had

also traveled to Texas to see Dr. LaGrone prior to that. Did you

know that he is one of the few who will do the entire surgery all in

the same day? Most others prefer to do it in 2 stages, as you have

learned from Dr. Berven. I've had mine both done in the one-day

procedure, so I can't comment on your concerns over having the 2-

staged one. Many others on here can though. Naturally, I prefered

to have it all done in one shot.

Know that you won't be alone on your journey . We are just a

click away, and understand what you are going through!

My Best -

~~

>

> I am a new member of your group, considering revision surgery to

> correct a Harrington rod surgery for scoliosis in 1994. At that

> time, I was fused from L-5 to T-4 or 5 (12 vertebrae fused). For

> about 10 years I was in fairly good shape, walking, skiing and

> biking. In the past three years, I started having severe sciatica

> with standing or walking, and now can hardly walk around the

block.

> I am also starting to lean forward more and more. Since I am 66,

> although still in very good health and working full time with my

own

> business, I feel as if I need to have this surgery before it is

too

> late. When I had the first surgery, however, I thought it

> would " fix " me for life. I had no idea of the flatback syndrome,

> nor was I told that the vertebrae under the fusion wouldn't

> ultimately be able to hold up the rest of my spine. I have been

to

> see Dr. Sigurd Berven in San Francisco, who is at UCSF, and is the

> successor to Dr. Bradford. He recommends two surgeries, one

> posterior, and then four days later, another anterior to do bone

> fusions. I am terrified at the idea of two surgeries, and feel

that

> this just has that much chance of more complications. Has anyone

in

> your group had this dual procedure, and done well with it? I

would

> love to get any information, good and bad, about this, and what

the

> benefits or complications might be, and also what is the

> recuperation time period, etc. I also have had two other names of

> possible surgeons: Dr. LaGrone in Amarillo, and Dr. Bridewell in

> St. Louis, MO. Thanks for your help.

>

[Guest guest]

Dear ,

Welcome to the group, sorry that you are in pain and having somewhat limited mobility.I'm sooo glad that you are getting very sound medical advice, UCSF is one of the best hospitals, and have top notch doc's dealing with Flatback. It's so good to hear of someone who's getting excellent advice right from the get go, many of us have gone years searching for our diagnosis. While I didn't have staged revisions, and unfortunately I needed two, the majority of members that have gone ahead with surgery have had theirs staged. Mine were ten plus hours each, and boy does that much surgery in one day take a lot out of a person. Given your age, I think a staged surgery is totally the best idea. Blood loss during this surgery can be great, and a very long surgery just increases the chance for great blood loss. You have gotten two names for a second opinion, and both are excellent, Dr. Bridwell and Dr. La Grone, many members have had surgery with them. I had my last revision in 2002 in Denver with Dr. Anant Kumar, and just celebrated my four year anniversary. I'm doing very well, level, upright and painfree. It was a long recovery, as Cam said, the first three months were tough, wore a brace for six months, and didn't have my full energy back for about a year. Also there was the adjustments that had to be made to deal with a very fused spine, I'm fused T-1 to the sacrum, so at this point the only thing on me not fused is my neck. But I'm grateful each day for the surgery, and for my doc who worked hard to get me where I am today. I had my Harrington rod surgery in 1973 at age fourteen, at UCSF, boy it's a small world.

Anything we can do to be of help to you just ask, we are here to help!

Colorado Springs

[ ] Revision Surgery for Flatback

I am a new member of your group, considering revision surgery to correct a Harrington rod surgery for scoliosis in 1994. At that time, I was fused from L-5 to T-4 or 5 (12 vertebrae fused). For about 10 years I was in fairly good shape, walking, skiing and biking. In the past three years, I started having severe sciatica with standing or walking, and now can hardly walk around the block. I am also starting to lean forward more and more. Since I am 66, although still in very good health and working full time with my own business, I feel as if I need to have this surgery before it is too late. When I had the first surgery, however, I thought it would "fix" me for life. I had no idea of the flatback syndrome, nor was I told that the vertebrae under the fusion wouldn't ultimately be able to hold up the rest of my spine. I have been to see Dr. Sigurd Berven in San Francisco, who is at UCSF, and is the successor to Dr. Bradford. He recommends two surgeries, one posterior, and then four days later, another anterior to do bone fusions. I am terrified at the idea of two surgeries, and feel that this just has that much chance of more complications. Has anyone in your group had this dual procedure, and done well with it? I would love to get any information, good and bad, about this, and what the benefits or complications might be, and also what is the recuperation time period, etc. I also have had two other names of possible surgeons: Dr. LaGrone in Amarillo, and Dr. Bridewell in St. Louis, MO. Thanks for your help.

[Guest guest]

Hi , Thanks for taking the time to talk to me again the other day. I wrote to the Flatback Revision group today and after scrolling back a year, and even using "Berven" as a key word, I could not find any mention of anyone who has had Revision surgery with him. I am a bit alarmed by this. I know how highly you think of him, but actually, all the names I have had from his office were for other surgeries, mostly for the first time, not revision. Do you know of anyone who has had the same surgery as I will have, with Dr. Berven? Of the two people I have talked to who had Berven for their surgeon, one, your friend, had illius, and the other had a staph infection. Neither had Revision surgery. I am already scheduled but it would really help me if I could feel sure that he does my type of surgery-- with success-- all the time. I know you are busy now that you are working full time, but if you know of a few people who

have had Berven for this type of surgery I would really appreciate their names. Thanks!! Racine <lindaracine@...> wrote: Hi ...I have had both surgeries (although they were done in one day, and not as a revision, and I was only 42 at the time). I wanted to introduce myself, because I run the scoliosis support group for the SF bay area. I can tell you that I think you’re in excellent hands with Dr. Berven. I have 100% confidence in him.

If you email me privately (lindaracine @ earthlink.net, without the spaces) I can give you the contact information for a few people who had the same surgeries done by Dr. Berven.Regards,On 12/26/06 4:50 PM, "cynthben" <cynthben > wrote: I am a new member of your group, considering revision surgery to correct a Harrington rod surgery for scoliosis in 1994. At that time, I was fused from L-5 to T-4 or 5 (12 vertebrae fused). For about 10 years I was in fairly good shape, walking, skiing and biking. In the past three years, I started having severe sciatica with standing or walking, and now can hardly walk around the block. I am also starting to lean forward more and more. Since I am 66, although still in very good health and working full time with my own business, I feel as if I need to have this surgery before it is

too late. When I had the first surgery, however, I thought it would "fix" me for life. I had no idea of the flatback syndrome, nor was I told that the vertebrae under the fusion wouldn't ultimately be able to hold up the rest of my spine. I have been to see Dr. Sigurd Berven in San Francisco, who is at UCSF, and is the successor to Dr. Bradford. He recommends two surgeries, one posterior, and then four days later, another anterior to do bone fusions. I am terrified at the idea of two surgeries, and feel that this just has that much chance of more complications. Has anyone in your group had this dual procedure, and done well with it? I would love to get any information, good and bad, about this, and what the benefits or complications might be, and also what is the recuperation time period, etc. I also have had two other names of possible surgeons: Dr. LaGrone in

Amarillo, and Dr. Bridewell in St. Louis, MO. Thanks for your help.