Revision Surgery

[Guest guest]

Hi ,

Yes, your info., support and encouragemet are always very helpful!

Hmmm, is it also possible that having little or no lumbar lordosis

(like me) makes it easier to bend further forward at the hips than

having proper lumbar lordosis?? It seems silly, but I can't even

imagine/remember what it's like to have sagittally balanced

posture...... Talk about irrational fears - I'm afraid that after

being so messed up for so long, I will feel ABNORMAL with the more

normal posture that revision surgery hopefully will bring.....

I think I've only read about one person who felt they were given TOO

much lordosis. This actually is a fear of mine because my hip also

being deformed is a part contributor to my messed up posture. I

think that's one of the reasons why Dr. Boachie thinks I should get

my other hip replaced first.

I think you are really smart to keep using the grabber, . We

definitely don't want you to have any more cracks to your fusions or

any other problems!

Best wishes,

loriann

[Guest guest]

Dear Loriann,

I know what you feel aabout being unsure about what it will feel like to be

upright again after years of being so screwed up. I found it took a good year

for my muscles to adjust to being corrected, and I had a lot of shoulder

problems, they didn't like being straight after all those years of being uneven.

With time that has worked itself out. I did physical therapy to help with my

right shoulder which had been the one who drouped, it's okay now, but the

therapy was painful. I also did therapy too increase my core muscles. All in

all is good to be upright!

Colorado Springs

Re: Revision SUrgery

Hi ,

Yes, your info., support and encouragemet are always very helpful!

Hmmm, is it also possible that having little or no lumbar lordosis

(like me) makes it easier to bend further forward at the hips than

having proper lumbar lordosis?? It seems silly, but I can't even

imagine/remember what it's like to have sagittally balanced

posture...... Talk about irrational fears - I'm afraid that after

being so messed up for so long, I will feel ABNORMAL with the more

normal posture that revision surgery hopefully will bring.....

I think I've only read about one person who felt they were given TOO

much lordosis. This actually is a fear of mine because my hip also

being deformed is a part contributor to my messed up posture. I

think that's one of the reasons why Dr. Boachie thinks I should get

my other hip replaced first.

I think you are really smart to keep using the grabber, . We

definitely don't want you to have any more cracks to your fusions or

any other problems!

Best wishes,

loriann

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

[Guest guest]

Loriann, I echo your sentiment! I am always amazed when I see in a mirror how

bent over I am, and I do find it relatively easy to bend over, shave my legs,

tie my shoes, etc. Part of it may be because I'm so short waisted due to the

scoliosis, and have naturally long arms. But I too fear losing that if this

imbalance is corrected.

Sharon

Re: Revision SUrgery

Hi ,

Yes, your info., support and encouragemet are always very helpful!

Hmmm, is it also possible that having little or no lumbar lordosis

(like me) makes it easier to bend further forward at the hips than

having proper lumbar lordosis?? It seems silly, but I can't even

imagine/remember what it's like to have sagittally balanced

posture...... Talk about irrational fears - I'm afraid that after

being so messed up for so long, I will feel ABNORMAL with the more

normal posture that revision surgery hopefully will bring.....

[Guest guest]

Loriann writes:

> I was hoping that after my revision surgery, since they won't be

> extending my fusion any further up or down than it already is, I

> would still be able to pick things up off the floor. Is there

> anyone who has had revision surgery with osteotomy(ies) that

> CAN do so? If

> yes, how long is your fusion?

I had revision with osteotomies. My fusion was not extended, so L4-

L5, L5-S1, and below are unfused. However, they don't bend worth a

tinker's darn, so any illusion that I have any kind of extra mobility

from this lack of fusion is, well, an illusion. I am able, in theory,

to bend from the hips, but I never do this, so I'm pretty much always

ramrod straight all the time.

Both before and after revision, I could shave my legs and pick things

up off the floor. (Not IMMEDIATELY after revision, mind you -- I mean

months after the surgery when the worst of the post-op trauma

subsided.) I just don't do these activities by bending in the middle.

To pick stuff up that I can't grab with my toes, I bend my knees,

grab the toy or pen off the ground, and stand up again. To shave, I

squat with one knee on the ground and the target leg either bent to

get the ankle/calf area or extended to get behind the knee. (I

mention shaving because this often comes up as a concern around

here.)

I don't have particularly good muscle tone or flexibility -- just

enough strength in my thighs to get to the ground and stand up again,

developed after years of not being able to lean over to get things

off of the lower shelf of the fridge. And I don't think this has

anything to do with my unfused disks, since I could pick stuff up off

the floor with a straight back even when I was in the TLSO brace,

which extended far past my unfused disks.

Anyway, I don't think it's a blanket statement that anyone who has

revision will be unable to pick things up off the floor afterwards. I

assume it's another function of the many, many individual factors

affecting the person. I found that my surgeon gave me a pretty

accurate depiction of the likely outcome -- hopefully everyone else's

will be able to do the same. (However, I should note that

posits that my surgeon tells people what she thinks that they want to

hear about outcomes and capabilities.)

Elissa

[Guest guest]

,

Your scoliosis/revision experience sounds very much like mine; and I agree with

you about those regrets!

I spent the first 3 months post revision in a TLSO, on complete bed rest with

bathroom privledges only...talk about regrets! I questioned my decision to

proceed with the revision every other minute for those 3 months! Then, miracle

of miracles, I was up walking...STANDING STRAIGHT AND TALL AND WITH A WHOLE NEW

SHAPE TO MY PREVIOUSLY BENT, PAINFUL BODY!! Talk about thrilled!!

I'm now 4 years post revision and while I still have some residual neuro deficit

and pain, I know I'm so much better off today than I was 5 and 6 years ago. I

have a wonderful, supportive family...a husband with whom I'll celebrate 21

yeras of marriage with this month and 2 terrific sons. I ride on a motorcycle

with my husband as often as possible...I love working in my vegetable garden and

am in the process of canning many of the tomatoes I grew this summer...I

celebrated my 50th birthday last month by spending a romantic, long weekend with

my husband in Ocean City, Md... I live a full, happy, life and try to push any

regrets about my surgical decisions to the back of my mind...I thank God each

morning when I put my feet on the floor, stand up straight, and walk out to my

kitchen to make my morning coffee!! It truely is the little things that make

life so worth living!

All the best to all,

Beth

--------- Re: Revision SUrgery

>

>

> ,

>

> I've wondered the same thing about Nutty/Simone....

>

> Could it be that she has two rods like I do, one on each side of the

> spine? One of mine goes from T6 to L5 and the other shorter one goes

> from L2 to sacrum. My fusion according to the operative report is

> from T5 to sacrum. I've always wondered why they didn't make the

> long rod go one more vertebrae to end at the sacrum like the short

> rod does.....

>

> A question for you and the group: After I recovered from my

> Harrington Rod surgery, even though I was fused from T5 - sacrum, I

> was able to pick things up from the floor. Were you?

>

> I was hoping that after my revision surgery, since they won't be

> extending my fusion any further up or down than it already is, I

> would still be able to pick things up off the floor. Is there anyone

> who has had revision surgery with osteotomy(ies) that CAN do so? If

> yes, how long is your fusion?

>

> I definitely agree with that not being able to pick things up

> off the floor is a small price to pay compared to some of the

> benefits that may be achieved from revision. I just wish the

> benefits were a little bit more of a sure thing..... I think I know

> the answer to this, but I'll ask anyways since there are some new

> members. Does anyone REGRET having their revision surgery? Ugh,

> sorry for focusing on the negative again. , I need to take more

> lessons from you!!!!

>

> Thanks,

>

> loriann

>

>

>

> > Dear Nutty/ Simone,

> >

> > I have a question? If you are fused from T-4 to L-1 isn't T-6 thru

> T-10 included in that fusion set. I looked at a spinal model since I

> was confused, and maybe the numbers are switched or something.

> > removed]

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

> Syndrome. Not medical advice. Group does not control ads or endorse any

> advertised products.

>

>

>

[Guest guest]

Hi Jenni...

You'd be amazed at the individual differences in recovery between

individuals. I've known some people who came through surgery as if it

were as simple as an appendectomy. I've known others who tooks years

to recover. The risk of potential complications is long. If you read

the past messages in this forum, you'll get a good idea of the types

of things that can happen. If you decide to have revision surgery,

you'll have to sign a document that lists the common complications.

The one thing that seems consistent is that people who are very

physically fit seem to have an easier recovery than those who aren't.

I would definitely encourage you to get a referral to UCSF.

Unfortunately, Dr. Bradford is in the midst of retiring, so he's not

the major surgeon on surgeries any more. Drs. Hu, Berven, & Deviren

are all very qualified revision surgeons, however, so you'll be in

good hands there.

Regards,

P.S. I run the Scoliosis Association of San Francisco. Please feel

free to email me privately if you'd like. (lindaracine @ earthlink.net)

>

>

> Can anyone give me input on revision surgery - risks vs. advantages,

> recovery time, etc.

> I have a long posterior fusion of T-2 to L-4. My rod is broken, has

> been for 23+ years, and there is a fracture in my thoracic region.

> I also have spondylolisthesis with a bone graft of L-5. My surgery

> was done at Stanford Hospital in 1977. I have seen my pediatric

> ortho off and on since then, the last visit was 10 years ago. I

> will be seeing him again on Tuesday, 11-23. I have beeen reading

> about revision, and looked into Drs. I am thinking of asking for a

> referral to UCSF and Dr. Bradford (I live in N.CA). I don't

> think my doctor has done revisions, mainly because he is a pediatric

> doctor.

> Anyway, any input would be great.

>

> Thanks, Jenni

[Guest guest]

---Hi Jenni,

Hi my name is Debbie and I have a broken rod also. I know for a

fact is has been broken for at least 4 years. Problably more, but

didn't start hurting till this year. Thanks to my chiropractor, my

fault for going but he did give my L4 and L5 some extended life.

If you want to talk off line you can email at:

debdepp2003@....

Does your rod hurt?

Debbie

In , " Jenni Gates "

<jtdgates@s...> wrote:

>

>

> Can anyone give me input on revision surgery - risks vs.

advantages,

> recovery time, etc.

> I have a long posterior fusion of T-2 to L-4. My rod is broken,

has

> been for 23+ years, and there is a fracture in my thoracic region.

> I also have spondylolisthesis with a bone graft of L-5. My surgery

> was done at Stanford Hospital in 1977. I have seen my pediatric

> ortho off and on since then, the last visit was 10 years ago. I

> will be seeing him again on Tuesday, 11-23. I have beeen reading

> about revision, and looked into Drs. I am thinking of asking for a

> referral to UCSF and Dr. Bradford (I live in N.CA). I don't

> think my doctor has done revisions, mainly because he is a

pediatric

> doctor.

> Anyway, any input would be great.

>

> Thanks, Jenni

[Guest guest]

Contact Juststand... wrote:

>Greetings!

>

>I know I am terribly late in response to all of the

>important topical discussions, but just wanted to

>weigh in that I agree there should be more discussion

>and info available regarind revision surgeries.

>

>Prayers go out to in her surgery.

>

>

>

Thanks so much!

in Oakland

[Guest guest]

Bonnie,

You are not alone. Sometimes it is hard for people to

keep up with all the mail and respond in a timely

fashion, especially when the question is one that pops

up again and again. I must confess as group moderator

I am probably one of the worst offenders -- I am

basically running this group all by my lonesome right

now and also trying to return to making a living, and

I just can not get to all the important and worthwhile

posts and emails I wish I had time to answer.

Not to brush you off, but have you tried browsing or

searching the message archives, and have you checked

out the many resources available at the Feisty

website? Over the past five years or so, we have

written many, many words on the subjects you bring up

in your posts! Many of us have coped with surgery

while parenting young children, and maybe even more of

us have coped with the pain meds conundrum. The one

bit of opinionated advice I would like to give you

here and now is to PLEASE not worry about taking

narcotics for your pain. Popular hysteria on the

subject has scared too many people to the point of not

taking the medicine their doctors reasonably prescribe

to help their legitimate pain. In your situation there

is no need to fear addiction. (If you should happen to

have a history of substance abuse or addictive

problems, that is important for you doctor to know,

but is not a reason to avoid appropriate medication

for your pain.)

Thanks so much for writing, and please be patient with

us . . .

Best,

--- Bonnie Traugh <bon2scott@...> wrote:

> just wondering if anyone got my message about

> revision surgery aftercare, what to expect as far as

> physical support for my back . i have a 5yr old and

> need to know what to really expect. my surgery has

> not been set up yet. i see my doc on Oct 6.

> currently me PCP has me on percocet to control pain.

> it is working very well. but i am scared of

> becoming addicted to them. he has me on them every

> 4-6 hrs a day. but i have only been taking them 3

> times a day. i can live with a few hrs of pain a

> day god knows i have been living in pain with no

> relief for years and years. so what i get now is a

> help. also if there is anyone out there from PA . i

> would really like to talk to you one on one. maybe

> get together via land line or if close enough meet

> in person. i feel like i have no one who

> understands me and i really need that right now.

> thanks a bunch bonnie

>

>

>

> ---------------------------------

> for Good

> Click here to donate to the Hurricane Katrina

> relief effort.

[Guest guest]

Hi Carol,

I can only imagine the bunch of emotions you must be feeling right now

that you have your surgery dates on the books. Will be sending

positive thoughts that the insurance worries will work themselves out

just the way you need them to and that you can manage your pain in the

meanwhile. Best wishes to you now and in the future,

loriann

P.S. I also sent info. to your email about the Feisty calendar.

>

> I just wanted to say that I have tentatively set my revision surgery

> date for Mar. 6, 2007. That is for the anterior surgery. Then on March

> 13, 2007 I will have the more gruelling posterior surgery. I am having

> it at UCSF with Dr. Serena Hu. So, I just hope that I can make it that

> long with all the pain that I'm in. Thank goodness I have the Ultram,

> but even two pills every 6 hrs doesn't take away all the pain. I take

> Lyrica at bedtime, because during the day it makes me too sleepy, and

> sleepy doesn't work when you're at work! Now we just have to wait and

> see about the new insurance that my husband gets on Jan. 1 thru his

> work. What it covers is up in the air right now. I just hope that UCSF

> and Dr. Hu are IN NETWORK. Otherwise I don't know what we're going to

> do!!

>

> Carol V (CA)

>

[Guest guest]

Amile,

I'm glad you found this group too! When are you scheduled for your revision

surgery? How many flatback surgeries has Dr Orr performed? Welcome to the

group- I hope you find lots of info

>

> I finally found a doctor that thinks he can help me. I have problems with

numbness on my left side, which they cannot find any nerve damage, I have a

constant inflammed ankle which is cause by the unbalanced way I walk, I cannot

stand nor walk for very long with out my hips and legs hurting, it bothers me to

sit straight without tiltling the chair back and can not sleep all night withot

tossing and turning. I have thought for years it is because of the harrington

rods put in in 1978 and that I had flat back syndrome, up until now I have been

turned away from every doctor saying that my fusion was solid and there was

nothing that they could. Now I have found Dr. Orr at Cleveland Clinic that says

he can cut through part of the fusion and cut out part of the rod and give me

back the curve I need to walk again. I am excited and very scared that I could

be a lot better and it will give me my life back, or I could be in terrible pain

the rest of my life, so far my back is the only think that doesn't hurt. Would

like to hear from you that have revision sugery to wey my odds if this is really

going to be worth it. I am 52 years old and feel I have many years left, I would

love to keep up with my grandkids.

>

> Thanks,

> A

>

[Guest guest]

Peggy, what a blast from the past! I don't think I've heard from you for, well,

almost forever?!-- Can that be right? -- How great to see your name at the

Feisty site one again!

Scoliosis Treatment is an excellent group with a long and impressive history. I am

sure you are right about the revision surgery experience available there. But in

case you have been away for a while or are not aware of this, innumerable

members of our own group have undergone flatback revision surgery in recent

years. Many of us would be happy to share our own experiences, and you can also

find lots of play-by-play accounts onsite from those who have alrady dne

so.(There is also another, newer group devoted to flatback deformties,

Flatback-Revised, which undoubtedly has catalogued similar reports on revision

surgery experiences. A number of our own members belong to that group as well.)

Since , a.k.a. The Feisty Forum, is the oldest and

largest flatback group on the Web, I believe we also have the most abundant and

detailed information available on the experience of flatback revision surgery in

all its individual versions and permutations. Many of our members are glad to

discuss their experiences in detail, plus we have some nine years of flatback

revision surgery sagas archived in our Messages section. These can be browsed

and skimmed, or the reader can try a targeted search using a keyword. (We also

have a number of interesting readings available, most pertaining to flatback

revision surgery, in such areas of the site as " File " and " Links. " )

If the issue is spinal revision surgery in general-- not flatback revision

surgery specifically -- then the more generic scoliosis groups would be a good

bet. Another excellent resource for more generalized scoliosis information is

the National Scoliosis Foundation site, which offers a number of different

forums for various age groups, each dealing with a different aspect of the

scoliosis or scoliosis-surgery experience.

Best,

>

> For those of you facing revision surgery, there are several people on the

group that have had revision surgery. I'm sure they would

share their experiences and answer any questions you might have if you want to

join that list.

>

> Peggy Greene

>

> Osteoporosis dx @ 33- Fosamax for 5 years

> Fibromyalgia - Zyprexa for sleep, massage for pain

> Scoliosis - Harrington rod fusion T3-L3 in 1985

> 9-year-old Daughter with scoliosis in Boston brace

> Severe Degenerative Disc Disease - support brace

> Hypothyroidism

> Restricted Lung Disease

> Allergies

> GERD

>

>

>

[Guest guest]

Well, this was a breath of fresh air -- what an invigorating post! Your moniker or "handle" is very familiar to me, but I am not sure of your first name or how to adress you . . . (For various reasons I haven't had too much sleep this week and am not totally on the ball right now.)I am curious as to whom you are addressing in this post -- the mysterious E -- since my own name is (also, to some of my friends, Eliana). You must be responding to some other "E," though, since I have already had (I hope) as much fusion and revision surgery as I care to contemplate in one lifetime. My last procedure, in 2004, brought the tally up to 8. I love your affirmational, upbeat attitude. We sure do need that around here. Many thanks, on behalf of myself and anyone else who may have perked up and cracked an irrepressible grin upon catching sight of your post.Best,>> Hey E,> > You're going to be fine - really. REALLY. All your emotions are valid> and normal - the nice thing about this site and others is that we've all> been there and realize there is no "right" way to feel about all this sh--.> Unlike all the healthies who think they know best, I've learned that *just> getting through* a spinal reconstructive surgery/recovery is a tremendous> success.> > I personally have spoken to 2 women (1 phone, 1 email) who are very happy> with their results. My research has shown that this procedure has been> much improved since the 80's and as long as you are operated on by one of> the top dogs, you have reason to feel confident of a successful outcome.> > This may sound goofy - but do you remember that song by Burton Cummings> "Stand Tall" ?? It was popular back in the 70's. Music is my therapy and> listening to the words ...'Stand tall, don't you fall' really helps me with> all this stuff. Might not do a damn thing for you but ya never know!> > God Bless!>

[Guest guest]

I am still waiting for a date for surgery. Dr Orr has been doing these for 8 years, he does about 12 a year, he says they are challenging. I hope that is good!! I still have not gotten to many answers on if it is a good idea. At least I can still get around, not much and it is really uncomfortable, but by back doesn't hurt. My fear is that I will be worse off after the surgery. I was really happy when I found a doctor that could help me, but now that I am waiting for a date, I am talking myself out of it. I just need to read more on those who have gone through this and wiegh my odds. I have read posts from the past and still can't find too much on anyone talking about thier revision surgeries.

From: rebeccamaas <rebeccamaas@...>Subject: Re: Revision Surgery Date: Thursday, July 30, 2009, 4:22 PM

Amile,I'm glad you found this group too! When are you scheduled for your revision surgery? How many flatback surgeries has Dr Orr performed? Welcome to the group- I hope you find lots of info >> I finally found a doctor that thinks he can help me. I have problems with numbness on my left side, which they cannot find any nerve damage, I have a constant inflammed ankle which is cause by the unbalanced way I walk, I cannot stand nor walk for very long with out my hips and legs hurting, it bothers me to sit straight without tiltling the chair back and can not sleep all night withot tossing and turning. I have thought for years it is

because of the harrington rods put in in 1978 and that I had flat back syndrome, up until now I have been turned away from every doctor saying that my fusion was solid and there was nothing that they could. Now I have found Dr. Orr at Cleveland Clinic that says he can cut through part of the fusion and cut out part of the rod and give me back the curve I need to walk again. I am excited and very scared that I could be a lot better and it will give me my life back, or I could be in terrible pain the rest of my life, so far my back is the only think that doesn't hurt. Would like to hear from you that have revision sugery to wey my odds if this is really going to be worth it. I am 52 years old and feel I have many years left, I would love to keep up with my grandkids. > > Thanks,> A>

[Guest guest]

Annette,

There is another group, where there are many people who have had revision surgery and have much experience to share. There are written documents at this site where revised patients have recorded their experiences, lists of things a person may need to prepare for surgery, and many people who are willing to share their revision experience.

I found both this site and the above mentioned site when I began to have back problems thirty years after my Harrington rod fusion. I have not had revision surgery myself, but have read many posts from those who have.

Best of luck,

Jeanne

Re: Revision Surgery Date: Thursday, July 30, 2009, 4:22 PM

Amile,I'm glad you found this group too! When are you scheduled for your revision surgery? How many flatback surgeries has Dr Orr performed? Welcome to the group- I hope you find lots of info >> I finally found a doctor that thinks he can help me. I have problems with numbness on my left side, which they cannot find any nerve damage, I have a constant inflammed ankle which is cause by the unbalanced way I walk, I cannot stand nor walk for very long with out my hips and legs hurting, it bothers me to sit straight without tiltling the chair back and can not sleep all night withot tossing and turning. I have thought for years it is because of the harrington rods put in in 1978 and that I had flat back syndrome, up until now I have been turned away from every doctor saying that my fusion was solid and there was nothing that they could. Now I have found Dr. Orr at Cleveland Clinic that says he can cut through part of the fusion and cut out part of the rod and give me back the curve I need to walk again. I am excited and very scared that I could be a lot better and it will give me my life back, or I could be in terrible pain the rest of my life, so far my back is the only think that doesn't hurt. Would like to hear from you that have revision sugery to wey my odds if this is really going to be worth it. I am 52 years old and feel I have many years left, I would love to keep up with my grandkids. > > Thanks,> A>

[Guest guest]

Thanks for the info. Just curious why haven't you had revision surgery?

From: rebeccamaas <rebeccamaas>Subject: Re: Revision SurgeryFeistyScolioFlatbac kers@groups .comDate: Thursday, July 30, 2009, 4:22 PM

Amile,I'm glad you found this group too! When are you scheduled for your revision surgery? How many flatback surgeries has Dr Orr performed? Welcome to the group- I hope you find lots of info >> I finally found a doctor that thinks he can help me. I have problems with numbness on my left side, which they cannot find any nerve damage, I have a constant inflammed ankle which is cause by the unbalanced way I walk, I cannot stand nor walk for very long with out my hips and legs hurting, it bothers me to sit straight without tiltling the chair back and can not sleep all night withot tossing and turning. I have thought for years it is because of the harrington rods put in in 1978 and that I had

flat back syndrome, up until now I have been turned away from every doctor saying that my fusion was solid and there was nothing that they could. Now I have found Dr. Orr at Cleveland Clinic that says he can cut through part of the fusion and cut out part of the rod and give me back the curve I need to walk again. I am excited and very scared that I could be a lot better and it will give me my life back, or I could be in terrible pain the rest of my life, so far my back is the only think that doesn't hurt. Would like to hear from you that have revision sugery to wey my odds if this is really going to be worth it. I am 52 years old and feel I have many years left, I would love to keep up with my grandkids. > > Thanks,> A>

[Guest guest]

Hi,

 

It appears you are nearing a surgical date?  I can understand the jitters and am hoping the best for you!!!   Would it be OK if I asked where you hurt the most?  My back does hurt a lot as do the constant spasms an a host of other things.  Some times you can get into the PDA files and I have found places where studies showed good things about healing.  If I could get a 50% decrease in pain, I would be thrilled, even though I would like better result.  I also need a total knee replacement.  II guess a lot of people here have multiple problems.

 

Thanks for reading this and please know I hope the best for you.

 

Take care!

 

Peace,

 

Robin

On Sun, Aug 2, 2009 at 8:04 PM, Annette Milekovich <amile57@...> wrote:

 

I am still waiting for a date for surgery. Dr Orr has been doing these for 8 years, he does about 12 a year, he says they are challenging. I hope that is good!! I still have not gotten to many answers on if it is a good idea. At least I can still get around, not much and it is really uncomfortable, but by back doesn't hurt. My fear is that I will be worse off after the surgery. I was really happy when I found a doctor that could help me, but now that I am waiting for a date, I am talking myself out of it. I just need to read more on those who have gone through this and wiegh my odds. I have read posts from the past and still can't find too much on anyone talking about thier revision surgeries.  

From: rebeccamaas <rebeccamaas@...>Subject: Re: Revision Surgery

Date: Thursday, July 30, 2009, 4:22 PM

 

Amile,I'm glad you found this group too! When are you scheduled for your revision surgery? How many flatback surgeries has Dr Orr performed? Welcome to the group- I hope you find lots of info

>> I finally found a doctor that thinks he can help me. I have problems with numbness on my left side, which they cannot find any nerve damage, I have a constant inflammed ankle which is cause by the unbalanced way I walk, I cannot stand nor walk for very long with out my hips and legs hurting, it bothers me to sit straight without tiltling the chair back and can not sleep all night withot tossing and turning. I have thought for years it is because of the harrington rods put in in 1978 and that I had flat back syndrome, up until now I have been turned away from every doctor saying that my fusion was solid and there was nothing that they could. Now I have found Dr. Orr at Cleveland Clinic that says he can cut through part of the fusion and cut out part of the rod and give me back the curve I need to walk again. I am excited and very scared that I could be a lot better and it will give me my life back, or I could be in terrible pain the rest of my life, so far my back is the only think that doesn't hurt. Would like to hear from you that have revision sugery to wey my odds if this is really going to be worth it. I am 52 years old and feel I have many years left, I would love to keep up with my grandkids.

> > Thanks,> A>

-- Live the life you have imagined!HD ThoreauThings do not change.  We change.  HD ThoreauThere is life after PTSD!!!   Life is what you make of it!Waneeshee.......may the way be beautiful for you

[Guest guest]

Hi, Jeanne --

You mentioned the group Flatback-Revised. They are an outgrowth of this group

which I also recommend to people. Their list of things to take to the hospital

first appeared in our own resources at this group, and you can find it at our

own site as well. I believe a number of other resources at their site are the

same as ours -- for instance, you should be able to find Mina's

classic and much-loved write-ups on flatback syndrome and related topics at both

sites. We also have lots of other information, particularly in our " Files " and

" Links " section, including information and tips on revision surgery, surgeons'

published papers, etc. Some people have archived their post-revision x-rays as

well as family photos in the Photos section.

It seems like a good idea for us to add a resource on revision-surgery

experiences, as they evidently have done at F-R. What it would take is for

someone motivated and interested to go through our archives, pull from the

massive amounts of personal experiences described in posts to the group, and

archive selected personal accounts in the " Files " section. I would love it if

someone with the time and inclination would volunteer to do so someday-- email

me, Feisty members, if you are interested in this project! Meanwhile, I don't

think there is any dearth of information on revision surgery experiences here at

" Feisty " -- it's just the mass of personal experiences are concentrated within

our message archives, which span nine years and countless revision surgeries.

Best,

> >

> > I finally found a doctor that thinks he can help me. I have

problems with numbness on my left side, which they cannot find any nerve damage,

I have a constant inflammed ankle which is cause by the unbalanced way I walk, I

cannot stand nor walk for very long with out my hips and legs hurting, it

bothers me to sit straight without tiltling the chair back and can not sleep all

night withot tossing and turning. I have thought for years it is because of the

harrington rods put in in 1978 and that I had flat back syndrome, up until now I

have been turned away from every doctor saying that my fusion was solid and

there was nothing that they could. Now I have found Dr. Orr at Cleveland Clinic

that says he can cut through part of the fusion and cut out part of the rod and

give me back the curve I need to walk again. I am excited and very scared that I

could be a lot better and it will give me my life back, or I could be in

terrible pain the rest of my life, so far my back is the only think that doesn't

hurt. Would like to hear from you that have revision sugery to wey my odds if

this is really going to be worth it. I am 52 years old and feel I have many

years left, I would love to keep up with my grandkids.

> >

> > Thanks,

> > A

> >

>

[Guest guest]

,

For your information F-R has some people who actually journalled their experience both leading up to, and especially, during their recovery period, in their files. This is one big difference between what has been posted over the years and what some have recently experienced. Both groups are excellent in their own ways, which is why I belong to both, among others, for the variety of information. You also mentioned that they are an outgrowth of this group, but I remember you mentioning that this group was an outgrowth of a previous group. This just means that everything evolves, which I believe is for the better.

Llweyn

From: [mailto: ] On Behalf Of Rasche Sent: August 6, 2009 10:32 PM Subject: Re: Revision Surgery

Hi, Jeanne --You mentioned the group Flatback-Revised. They are an outgrowth of this group which I also recommend to people. Their list of things to take to the hospital first appeared in our own resources at this group, and you can find it at our own site as well. I believe a number of other resources at their site are the same as ours -- for instance, you should be able to find Mina's classic and much-loved write-ups on flatback syndrome and related topics at both sites. We also have lots of other information, particularly in our "Files" and "Links" section, including information and tips on revision surgery, surgeons' published papers, etc. Some people have archived their post-revision x-rays as well as family photos in the Photos section.It seems like a good idea for us to add a resource on revision-surgery experiences, as they evidently have done at F-R. What it would take is for someone motivated and interested to go through our archives, pull from the massive amounts of personal experiences described in posts to the group, and archive selected personal accounts in the "Files" section. I would love it if someone with the time and inclination would volunteer to do so someday-- email me, Feisty members, if you are interested in this project! Meanwhile, I don't think there is any dearth of information on revision surgery experiences here at "Feisty" -- it's just the mass of personal experiences are concentrated within our message archives, which span nine years and countless revision surgeries.Best,> >> > I finally found a doctor that thinks he can help me. I have problems with numbness on my left side, which they cannot find any nerve damage, I have a constant inflammed ankle which is cause by the unbalanced way I walk, I cannot stand nor walk for very long with out my hips and legs hurting, it bothers me to sit straight without tiltling the chair back and can not sleep all night withot tossing and turning. I have thought for years it is because of the harrington rods put in in 1978 and that I had flat back syndrome, up until now I have been turned away from every doctor saying that my fusion was solid and there was nothing that they could. Now I have found Dr. Orr at Cleveland Clinic that says he can cut through part of the fusion and cut out part of the rod and give me back the curve I need to walk again. I am excited and very scared that I could be a lot better and it will give me my life back, or I could be in terrible pain the rest of my life, so far my back > > > > Thanks,> > A> >>

[Guest guest]

Annette,

As it turns out, the severe pain I was having in my lower back and right leg was primarily caused by a very large synovial cyst that was pressing against my spinal column at the L4-L5 level. A wonderful interventional radiologist was able to go into the cyst with a needle under guided imaging and rupture the cyst. This was a couple months ago and so far I have less back pain than my husband who does not have scoliosis or ever had fusion surgery. I have no other significant problems with my lower spine and my scoli doctor never raised the idea of surgery.

Currently I am working with a physical therapist to keep my core strong and supportive of my spine. I've been able to go 33 years since my fusion, and I'm hoping, if I'm very careful, I won't need revision surgery.

Jeanne

Re: Revision SurgeryFeistyScolioFlatbac kers@groups .comDate: Thursday, July 30, 2009, 4:22 PM

Amile,I'm glad you found this group too! When are you scheduled for your revision surgery? How many flatback surgeries has Dr Orr performed? Welcome to the group- I hope you find lots of info >> I finally found a doctor that thinks he can help me. I have problems with numbness on my left side, which they cannot find any nerve damage, I have a constant inflammed ankle which is cause by the unbalanced way I walk, I cannot stand nor walk for very long with out my hips and legs hurting, it bothers me to sit straight without tiltling the chair back and can not sleep all night withot tossing and turning. I have thought for years it is because of the harrington rods put in in 1978 and that I had flat back syndrome, up until now I have been turned away from every doctor saying that my fusion was solid and there was nothing that they could. Now I have found Dr. Orr at Cleveland Clinic that says he can cut through part of the fusion and cut out part of the rod and give me back the curve I need to walk again. I am excited and very scared that I could be a lot better and it will give me my life back, or I could be in terrible pain the rest of my life, so far my back is the only think that doesn't hurt. Would like to hear from you that have revision sugery to wey my odds if this is really going to be worth it. I am 52 years old and feel I have many years left, I would love to keep up with my grandkids. > > Thanks,> A>

[Guest guest]

Jeanne,

If I am as late as I think I am in responding to to this post, I hope you will

forgive me.

I was so interested to hear about your situation. I have had wonderful

experiences with interventional radiologists myself, and I was certainly

impressed with yours! I'm so glad you are rid of the pain from that nasty

synovial cyst.

Would you mind telling us (even if you already have -- I have some trouble

keeping everyone's history completely intact in my late-middle-age brain): Was

your fusion an instrumented fusion, i.e., did your surgeon implant any hardware?

If not, do you think he had any awareness of the importance of sagittal

mechanics? My own first fusion was one of the early ones, without hardware. I

have often wondered how I might have fared if I had declined the second fusion

(and spiffy new Harrington rod) in adulthood.

If you ARE one of the lucky ones among us who have escaped flatback syndrome,

you might be able to help us understand just what factors were most influential.

Another question that occurs to me is whether your fusion did or did not extend

into the lumbar region.

Regarding the PT to strengthen your core, I am wondering if this involves any

version of Pilates. As you may know, one of our members, Andra Stanton, has

written a wonderful book called *Pilates for Fragile Backs*, which enables

instructors or therapists to adapt the exercises for " people like us. " I am

thinking of trying a program like this myself (after toting the book to the

fitnsss center I just joined), since I think I need to strengthen my own core as

much as possible. I would be interested to know more about your PT.

Hope I have not thrown too many " essay questions " at you all at once! In any

case, please keep us posted on your progress.

Best,

> >

> > I finally found a doctor that thinks he can help me. I

have problems with numbness on my left side, which they cannot find any nerve

damage, I have a constant inflammed ankle which is cause by the unbalanced way I

walk, I cannot stand nor walk for very long with out my hips and legs hurting,

it bothers me to sit straight without tiltling the chair back and can not sleep

all night withot tossing and turning. I have thought for years it is because of

the harrington rods put in in 1978 and that I had flat back syndrome, up until

now I have been turned away from every doctor saying that my fusion was solid

and there was nothing that they could. Now I have found Dr. Orr at Cleveland

Clinic that says he can cut through part of the fusion and cut out part of the

rod and give me back the curve I need to walk again. I am excited and very

scared that I could be a lot better and it will give me my life back, or I could

be in terrible pain the rest of my life, so far my back is the only think that

doesn't hurt. Would like to hear from you that have revision sugery to wey my

odds if this is really going to be worth it. I am 52 years old and feel I have

many years left, I would love to keep up with my grandkids.

> >

> > Thanks,

> > A

> >

>

[Guest guest]

,

Thanks for asking about my situation. I don't know if I will remain lucky enough to avoid revision surgery permanently, but I am doing all I can to prevent it.

I did have an instrumental fusion with a Harrington rod in 1977 and was fused from T4 to L3. My curve was a right thoracic curve of around 50 degrees which was reduced to 13 degrees post op. Since the rod is straight, my back is flat down to L3, but I have maintained the lordotic curve below that level. The ct myelogram I had in April indicated my lordosis appears the same as it was immediately following surgery. My mother recalls the surgeon, Dr. DeWald in Chicago at Rush, saying something about trying to do something with the lordosis in my back. I think I had more than the normal amount of lordosis, so maybe that has helped my situation.

The myelogram and ct showed that my unfused lumbar disc spacing is okay though I do have two mild bulging discs and some mild arthritic changes. The scoli doctor who requested the ct myelogram told me that it was unusual to have this type of cyst without other major spinal problems.

I've had three children, natural birth, and no real problems with my back during or after pregnancy. I was able to have epidurals for two of those births, although for the last one the pain doc on call was afraid to touch my back and refused to give me the epidural. We spoke with the head of the anesthesiology department, and he came and did the procedure himself. Thank goodness!

I don't do pilates, but I do use an exercise ball a lot. I've looked at core strengthening exercises on line and modified where needed as well as learning some new things from my physical therapist. I'm fortunate that I can ride an exercise bike without any pain and now can walk a reasonable distance since the cyst is gone. I don't push the walking though, I'm too concerned about doing something to cause the cyst to come back. I also don't want to strain my lower back anymore than necessary now that I know about flatback and the surgical possibility if my back deteriorates more.

I do still have lower back pain at times and some sciatica type pain in my right hip. But, I am in no more discomfort than my husband is with his non scoliosis back problems. Actually, he has more degeneration than I do. So, who knows what the future holds? I am terrified of the possibility of needing surgery in the future, but after reading so many posts from the members here and elsewhere about their successful revisions, I will be able to face whatever comes my way. At least I hope so!

Jeanne

Re: Revision Surgery

Jeanne,If I am as late as I think I am in responding to to this post, I hope you will forgive me.I was so interested to hear about your situation. I have had wonderful experiences with interventional radiologists myself, and I was certainly impressed with yours! I'm so glad you are rid of the pain from that nasty synovial cyst.Would you mind telling us (even if you already have -- I have some trouble keeping everyone's history completely intact in my late-middle-age brain): Was your fusion an instrumented fusion, i.e., did your surgeon implant any hardware? If not, do you think he had any awareness of the importance of sagittal mechanics? My own first fusion was one of the early ones, without hardware. I have often wondered how I might have fared if I had declined the second fusion (and spiffy new Harrington rod) in adulthood.If you ARE one of the lucky ones among us who have escaped flatback syndrome, you might be able to help us understand just what factors were most influential. Another question that occurs to me is whether your fusion did or did not extend into the lumbar region.Regarding the PT to strengthen your core, I am wondering if this involves any version of Pilates. As you may know, one of our members, Andra Stanton, has written a wonderful book called *Pilates for Fragile Backs*, which enables instructors or therapists to adapt the exercises for "people like us." I am thinking of trying a program like this myself (after toting the book to the fitnsss center I just joined), since I think I need to strengthen my own core as much as possible. I would be interested to know more about your PT.Hope I have not thrown too many "essay questions" at you all at once! In any case, please keep us posted on your progress.Best,> >> > I finally found a doctor that thinks he can help me. I have problems with numbness on my left side, which they cannot find any nerve damage, I have a constant inflammed ankle which is cause by the unbalanced way I walk, I cannot stand nor walk for very long with out my hips and legs hurting, it bothers me to sit straight without tiltling the chair back and can not sleep all night withot tossing and turning. I have thought for years it is because of the harrington rods put in in 1978 and that I had flat back syndrome, up until now I have been turned away from every doctor saying that my fusion was solid and there was nothing that they could. Now I have found Dr. Orr at Cleveland Clinic that says he can cut through part of the fusion and cut out part of the rod and give me back the curve I need to walk again. I am excited and very scared that I could be a lot better and it will give me my life back, or I could be in terrible pain the rest of my life, so far my back is the only think that doesn't hurt. Would like to hear from you that have revision sugery to wey my odds if this is really going to be worth it. I am 52 years old and feel I have many years left, I would love to keep up with my grandkids. > > > > Thanks,> > A> >>

[Guest guest]

L. DeWald --no kidding! He was my first Chicago spine doc before I

switched to his younger partner, Kim alled my own H. rod at Rush in 1986.

It's great to hear how well you're doing -- no doubt in part through your own

determination to do everything you can for yourself.

If you ever should need/opt for revision surgery, heaven forfend, I hope you'll

consider the Department of Neurological Surgery at Northwestern (assuming you're

in the Chicago area). We can hope that by eight years from now, at least, our

beloved Ondra will be back from his post in Washington, DC, and taking

care of our spines once more.

When my flatback became incapacitating as of 1998, Hammerberg (like several

other local neophyte revision surgeons eager for experience) very much wanted to

perform my flatback correction. When I learned that he had done only five or so

flatback revisions, and that the patients were not doing all that well, I

decided no way. I am tempted to say much more about that particular practice

group, but I'll refrain. I still marvel over the possibility that I may have

been the very last person in the Chicago Metro area to have a Harrington rod

implanted. As I mentioned, that was in 1986 -- by which time SRS surgeons were

well aware of the dangers. They made some noises about contouring, protecting

sagittal balance and the like - used some newer hooks called Moe hooks with the

H. rod -- all to no avail.

Hammerberg's position, when he was finally forced to acknowledge my extremely

severe and steadily worsning flatback syndrome, was " That's from your disk

disease. " Uh-huh. Four or five other docs, at other institutions, told me the

truth. One of them completely broke down when he caught his first glimpse of my

spinal films.

In , " Slinker " <slinkers5@...> wrote:

>

> ,

>

> Thanks for asking about my situation. I don't know if I will remain lucky

enough to avoid revision surgery permanently, but I am doing all I can to

prevent it.

>

> I did have an instrumental fusion with a Harrington rod in 1977 and was fused

from T4 to L3. My curve was a right thoracic curve of around 50 degrees which

was reduced to 13 degrees post op. Since the rod is straight, my back is flat

down to L3, but I have maintained the lordotic curve below that level. The ct

myelogram I had in April indicated my lordosis appears the same as it was

immediately following surgery. My mother recalls the surgeon, Dr. DeWald

in Chicago at Rush, saying something about trying to do something with the

lordosis in my back. I think I had more than the normal amount of lordosis, so

maybe that has helped my situation.

>

> The myelogram and ct showed that my unfused lumbar disc spacing is okay though

I do have two mild bulging discs and some mild arthritic changes. The scoli

doctor who requested the ct myelogram told me that it was unusual to have this

type of cyst without other major spinal problems.

>

> I've had three children, natural birth, and no real problems with my back

during or after pregnancy. I was able to have epidurals for two of those

births, although for the last one the pain doc on call was afraid to touch my

back and refused to give me the epidural. We spoke with the head of the

anesthesiology department, and he came and did the procedure himself. Thank

goodness!

>

> I don't do pilates, but I do use an exercise ball a lot. I've looked at core

strengthening exercises on line and modified where needed as well as learning

some new things from my physical therapist. I'm fortunate that I can ride an

exercise bike without any pain and now can walk a reasonable distance since the

cyst is gone. I don't push the walking though, I'm too concerned about doing

something to cause the cyst to come back. I also don't want to strain my lower

back anymore than necessary now that I know about flatback and the surgical

possibility if my back deteriorates more.

>

> I do still have lower back pain at times and some sciatica type pain in my

right hip. But, I am in no more discomfort than my husband is with his non

scoliosis back problems. Actually, he has more degeneration than I do. So, who

knows what the future holds? I am terrified of the possibility of needing

surgery in the future, but after reading so many posts from the members here and

elsewhere about their successful revisions, I will be able to face whatever

comes my way. At least I hope so!

>

> Jeanne

>

> Re: Revision Surgery

>

>

> Jeanne,

>

> If I am as late as I think I am in responding to to this post, I hope you

will forgive me.

>

> I was so interested to hear about your situation. I have had wonderful

experiences with interventional radiologists myself, and I was certainly

impressed with yours! I'm so glad you are rid of the pain from that nasty

synovial cyst.

>

> Would you mind telling us (even if you already have -- I have some trouble

keeping everyone's history completely intact in my late-middle-age brain): Was

your fusion an instrumented fusion, i.e., did your surgeon implant any hardware?

If not, do you think he had any awareness of the importance of sagittal

mechanics? My own first fusion was one of the early ones, without hardware. I

have often wondered how I might have fared if I had declined the second fusion

(and spiffy new Harrington rod) in adulthood.

>

> If you ARE one of the lucky ones among us who have escaped flatback

syndrome, you might be able to help us understand just what factors were most

influential. Another question that occurs to me is whether your fusion did or

did not extend into the lumbar region.

>

> Regarding the PT to strengthen your core, I am wondering if this involves

any version of Pilates. As you may know, one of our members, Andra Stanton, has

written a wonderful book called *Pilates for Fragile Backs*, which enables

instructors or therapists to adapt the exercises for " people like us. " I am

thinking of trying a program like this myself (after toting the book to the

fitnsss center I just joined), since I think I need to strengthen my own core as

much as possible. I would be interested to know more about your PT.

>

> Hope I have not thrown too many " essay questions " at you all at once! In any

case, please keep us posted on your progress.

>

> Best,

>

>

>

> > >

> > > I finally found a doctor that thinks he can help me. I have problems

with numbness on my left side, which they cannot find any nerve damage, I have a

constant inflammed ankle which is cause by the unbalanced way I walk, I cannot

stand nor walk for very long with out my hips and legs hurting, it bothers me to

sit straight without tiltling the chair back and can not sleep all night withot

tossing and turning. I have thought for years it is because of the harrington

rods put in in 1978 and that I had flat back syndrome, up until now I have been

turned away from every doctor saying that my fusion was solid and there was

nothing that they could. Now I have found Dr. Orr at Cleveland Clinic that says

he can cut through part of the fusion and cut out part of the rod and give me

back the curve I need to walk again. I am excited and very scared that I could

be a lot better and it will give me my life back, or I could be in terrible pain

the rest of my life, so far my back is the only think that doesn't hurt. Would

like to hear from you that have revision sugery to wey my odds if this is really

going to be worth it. I am 52 years old and feel I have many years left, I would

love to keep up with my grandkids.

> > >

> > > Thanks,

> > > A

> > >

> >

>

[Guest guest]

,

I will definitely go to Northwestern should I need any future care for my back. The radiologist who ruptured my cyst was at Northwestern and he was a gem. I have read posts that previously named Dr. Ondra (yours probably) so I was already heading in that direction when things started to go south for me. I do live in the western suburbs of Chicago, so going to Northwestern would not be a hardship.

Isn't it frustrating that some of these "specialists" won't acknowledge what has been done to us? It must have been such an awful experience having a doctor breakdown over what has been done to your spine. What did this doctor say to you when he/she saw the films? I know there are so many great doctors out there and they are caught in this loyalty thing where they dare not speak ill of a medical peer.

Thank you for letting me know about Northwestern as it helps to know there is a place to go when/if I need to. I hope you are doing well and that your able to get your core strength up - it's a never ending battle as it seems I weaken in a few short days if I don't do my exercises.

Jeanne

Re: Revision Surgery> > > Jeanne,> > If I am as late as I think I am in responding to to this post, I hope you will forgive me.> > I was so interested to hear about your situation. I have had wonderful experiences with interventional radiologists myself, and I was certainly impressed with yours! I'm so glad you are rid of the pain from that nasty synovial cyst.> > Would you mind telling us (even if you already have -- I have some trouble keeping everyone's history completely intact in my late-middle-age brain): Was your fusion an instrumented fusion, i.e., did your surgeon implant any hardware? If not, do you think he had any awareness of the importance of sagittal mechanics? My own first fusion was one of the early ones, without hardware. I have often wondered how I might have fared if I had declined the second fusion (and spiffy new Harrington rod) in adulthood.> > If you ARE one of the lucky ones among us who have escaped flatback syndrome, you might be able to help us understand just what factors were most influential. Another question that occurs to me is whether your fusion did or did not extend into the lumbar region.> > Regarding the PT to strengthen your core, I am wondering if this involves any version of Pilates. As you may know, one of our members, Andra Stanton, has written a wonderful book called *Pilates for Fragile Backs*, which enables instructors or therapists to adapt the exercises for "people like us." I am thinking of trying a program like this myself (after toting the book to the fitnsss center I just joined), since I think I need to strengthen my own core as much as possible. I would be interested to know more about your PT.> > Hope I have not thrown too many "essay questions" at you all at once! In any case, please keep us posted on your progress.> > Best,> > > > > >> > > I finally found a doctor that thinks he can help me. I have problems with numbness on my left side, which they cannot find any nerve damage, I have a constant inflammed ankle which is cause by the unbalanced way I walk, I cannot stand nor walk for very long with out my hips and legs hurting, it bothers me to sit straight without tiltling the chair back and can not sleep all night withot tossing and turning. I have thought for years it is because of the harrington rods put in in 1978 and that I had flat back syndrome, up until now I have been turned away from every doctor saying that my fusion was solid and there was nothing that they could. Now I have found Dr. Orr at Cleveland Clinic that says he can cut through part of the fusion and cut out part of the rod and give me back the curve I need to walk again. I am excited and very scared that I could be a lot better and it will give me my life back, or I could be in terrible pain the rest of my life, so far my back is the only think that doesn't hurt. Would like to hear from you that have revision sugery to wey my odds if this is really going to be worth it. I am 52 years old and feel I have many years left, I would love to keep up with my grandkids. > > > > > > Thanks,> > > A> > >> >>

[Guest guest]

Hi, Lida --

This post started as a brief reply to your query about the surgeon who " broke

down " when he saw the damage to my spine from flatback syndrome. But I ended up

writing much more about revision surgeons and revision surgery in general, so I

may include part of it in my own " revision surgery story " to be added to our

site resources.

------

Well, maybe " broke down " was not quite the right way to describe his reaction.

As I recall, either he actually cried, or he came awfully close. He was

examining my spinal x-rays, noting that I had very little disk tissue remaining

between two lumbar vertebrae and no disk tissue at all between two others. He

seemed shocked, even shaken. Perhaps I was one of the earliest flatback patients

he had dealt with, or more likely my case was one of the most severe he had seen

at that time. (This was in February 2000, about two years after my flatback

syndrome became so disabling that I could no longer work or sleep lying down or

hold myself semi-upright without the support of a walker. My deformity was

completely fixed and rigid, forcing me to carry my torso at a 90-degree angle to

the ground.)

When this doctor looked up at me from my spinal films, he had an expression on

his face I can only describe as anguished. He said, " We just didn't know any

better, you know? We just didn't know any better back then, " in a tone that

suggested he was pleading for my understanding or forgiveness. He wore glasses,

and I could not quite tell whether he had tears behind them or not. I kind of

think he did. He was an esteemed and much-loved scoliosis surgeon in my city who

had performed fusions on untold numbers of adolescents with scoliosis -- thus,

like others his age and in his specialty, undoubtedly causing thousands of cases

of flatback syndrome.

He was apparently hoping to undo some of the damage he or his colleagues had

done. He had performed some kind of attempted revision surgery on five patients

with flatback at the time I saw him. Those patients were not doing well, though

-- not a single patient was in decent shape post-op, as I recall. One was still

in the hospital after six weeks with a raging undiagnosed infection.

I had heard similar reports about (or directly from) some of the five patients

the other surgeon, Hammerberg (in the DeWald group) had attempted to " revise "

around that time, and I had declined to let Hammerberg attempt my revision.

Since this other surgeon, however, did seem to be regarded as a decent guy and a

decent surgeon (for adolescent scoliosis, anyway), I seriously considered

letting him take a stab at my revision.

This surgeon told me very confidently that " any of us can do it, " presumably

meaning any member of the SRS. This was simply not true, although he undoubtedly

believed it was. I was very fortunate to have some phone conversations with

Mina around that time, since she had seen specialists all over the

country, including this particular surgeon, and she warned me emphatically away

from him. She, too, had once considered letting him operate on her but had

ascertained for herself that, despite his decades of experience in scoliosis

correction, he was sorely lacking in the experience and expertise essential to

the far more complex and challenging process of restructuring a spine deformed

by iatrogenic flatback syndrome..

In fact, the best revision surgeons are often the first to tell you that even in

their hands, with their track records of, say, 70 or 80 reasonably successful

revisions, there is a significant rate of complications with this extremely

exacting form of massive spinal reconstruction.

To my everlasting sorrow, had learned much of what she knew by

personaly undergoing early revision surgery with people at the best institutions

who simply were not up to the challenge at that point in their careers. As a

result, she had been badly messed up, and she was still trying to get some of

the demage ameliorated through additional surgery with better qualified

doctors. I knew, therefore, that she knew whereof she spoke. When

spoke, I listened.

One interesting sidelight on my meeting with the particular surgeon who was so

affected by my x-rays: I had vaguely heard of another surgeon in the very same

medical center, Dr. Ondra -- a younger surgeon, a neurosurgeon with some

orthopedic training as well, who reportedly knew how to handle flatback revision

surgery. I asked this man about Ondra and he was totally dismissive, saying he

saw no reason why a neurosurgeon should be involved with my case. I ended up

going to Boston, ultimately, for revision surgeon with a topnotch spine guy from

a strictly orthopedic background, Dr. Rand -- a fabulous surgeon I'd

recommend to anyone.

Several years later, I began to have some new problems, including the rather

common (at that time) problem of pelvic bolts positioned too far forward which

were causing me extroardinary pain. Thanks to a member of our Feisty group,

Donna Durgin, with whom I corresponded at some length in private emails, I began

to look at Dr. Ondra again as a possibility. He was beginning to build a real

reputation in Chicago -- not only did every single patient seem to adore him,

but every single surgery seemed to be a stellar success, even when he operated

on a friend's grandma in her nineties.

I am grateful to everyone who talked with me about Ondra, and especially to

Donna, who had had successful flatback revision surgery with him and who is

herself a nurse by profession. I had been handing out the same old line for so

long, " You will probably want to be sure your revision surgeon is a member of

the SRS " -- when in fact, a number of neurosurgeons nationwide were performing

successful revision surgeries while having nothing to do with the SRS (where

they were not wanted -- it was a closed orthopedists' group). The two distinct

groups, neuro and ortho, were operating completely independently of each other,

moving in their own respective worlds.

When I finally went to see Ondra in 2004, we had good chemistry and I was

impressed with everything he said about my condition. While admiring Dr. Rand's

work no end -- I overheard him, before I even met him, commenting on my x-rays

down the hall to a group of spinal fellows, saying that whoever operated on me

had done an excellent job, exactly what he would have done himself -- he felt

that at this point he had some additional help to offer me. Much to my surprise

and his, he ended up performing five operations on me in the winter of 2004. The

last of these was an emergency procedure following a stress fracture I

mysteriously developed at a crucial point in my fusion. He always leveled with

me, and he came in the night before this last operation to tell me that I had a

50 percent chance of coming out of it paraplegic. He said he would do everything

possible to prevent this. He said the most dangerous point would be when they

moved me onto the table, and that he would take full responsibility for doing

this himself, getting me moved and positioned. I came out of that surgery just

fine.

Around that time or not long after, Dr. Ondra spoke with some of his colleagues

-- I think in particular Dr. Bridwell in St. Louis, with whom he has

collaborated on a number of studies -- and persuaded them to begin admitting

neurosurgeons to the SRS. Somewhere along the way, Ondra also became chief of

spinal surgery at his own medical center. I completely lost track of the other

man I had seen there, the scoliosis surgeon -- I kind of think he is retired

now, as he was getting on in years even when I met him. It's amazing to look

back and see how divided things were even within one university medical center,

where two spinal surgeons were at one time operating in two different worlds.

But this was a situation Dr. Ondra inherited; he did not create it. Dr. Ondra

has always struck me as more of a turf-sharer than a turf-builder, and has spent

much of his career bringing people together in any number of ways. Maybe that's

why he has good friends from both the Bush and Clinton administrations and has

operated several times on the daughter of the highest-up government official in

the People's Republic of China. No doubt that's why he was recently summoned to

Washington -- where he now plays a major role in Veterans Affairs -- by

President Obama. (Dr. Ondra himself attended West Point and served as a

physician in the Gulf War.) No doubt that's also why he has expressed his

appreciation to those who added some orthopedic training to his topnotch

neurosurgical training. These people were, ironically, the aforementioned DeWald

group to whom I owe my very severe and complex case of flatback syndrome. Small

world, huh? I'm still learning to live in it -- learning to make peace, to build

coalitions when I might be a bit more inclined to build hostilities!

Still, I think we need to continue urging every prospective revision patient to

take a long, careful look at any revision surgeon she is considering for the

job.

There is a beautiful ceremony, Havdalah, for marking the end of the Jewish

Sabbath each week -- or, as Rabbi Abraham Heschel conceived of it, for

sanctifying the secular week to come. Over a cup of wine or grape juice and a

container of fragrant spices, in the light from a special braided candle, we

bless our Creator, among other things, for making distinctions -- for instance,

between light and darkness; between Shabbat and the six other days. One of these

distinctions, between " sacred and secular " or " sacred and profane " reads, in my

favorite translation, " between the holy and the not yet holy. "

Experienced and capable revision surgeons continue to train prospective revision

surgeons, who will someday take their place. This kind of learning must be

hands-on, and in any teaching hospital several bright and dexterous spinal

fellows may well be getting their start by performing various aspects of your

own surgery under the close watch of their instructor and mentor. Just please

don't let anyone learn on your body any other way than in this time-honored

context. He should be supervised, guided, helped, and watched. The fully ready,

fully credentialed, highly experienced senior man or woman should be present and

accountable.

This is your one and only precious personal body we are talking about. This is

your inestimably invaluable life -- your quality of life for all the years to

come. This operation may well be the longest, most serious, most complicated,

most massive surgical procedure you will ever undergo.

In light of all this, I say: Go with the holy. The not-yet-holy may well be

getting there by and by, but give them a few more years, at least, to get a

whole bunch more revisions under their belts, to get confident in handling all

conceivable complications, even to teach and supervise their own students.

Research the heck out of your intended surgeon, your intended hospital. Sign the

consent form only when you know for sure you have come to the right place, to

the right person. This way, you will still be taking some risks, but you will

have minimized those risks considerably. You will have given yourself the

optimal chance for a truly satisfactory outcome -- for a remaking of your spine

that will change your life for the better, increasing your indepedence and

enhancing your physical abilities while healing at least some of your suffering

and enabling you to go on in a stronger and more hopeful way.

As always -- my dear, beleagured, awesomely feisty friends --just my 2 cents.

-- In , " Lida Kraz " <lidakraz@...> wrote:

>

> ,

>

> When you say he " broke down " do you mean he cried?

>

> Lida in London

>

>

> Re: Revision Surgery

>

>

>

>

> Hammerberg's position, when he was finally forced to acknowledge my

> extremely severe and steadily worsning flatback syndrome, was " That's from

> your disk disease. " Uh-huh. Four or five other docs, at other institutions,

> told me the truth. One of them completely broke down when he caught his

> first glimpse of my spinal films.

>

>

>

> In FeistyScolioFlatbac <mailto:%40>

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> >

> > ,

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