Revision Surgery

September 29, 2008

Joanne,

I had my revision surgery, as well as about 5 other ladies on this list, with Dr. Lloyd Hey in Raleigh. I'm not sure how far it would be from you but would guess it's about 10 hours from Atlanta.

Peggy

[ ] Re: revision surgery

Dr. Shields, who is in with Dr. Dewberry, did my harrington ron surgery in 1981. His "bedside manners" were not good. I would go to him from time to time, if I was in paid. The last time, he told me that he could no longer help me and not to go back. I have been okay, except for the occasional overdoing something that caused alot of pain. Until about 4 years ago.. I have had more and more severe pain. Last summer my neck gave me hell. I have severa MRI's done, they found nothing. Finally, A PT mentioned that it was related to my surgery and my leaing forward and to the right. I wnet on the Inernet and found flatback syndrome and it fit my symptons to a "T". I have read about revision surgery, but not sure I want do go through that again. My pain control doctor has referred me to Dr. Dewberry here in Savannah. I am not sure I would trust him to do any revision surgery. I have been searching the inernet for doctors and the closest recommened are in New York and Houston. None in Georgia.How much pain are you in and are you able to work? Please keep me posted. My appointment with Dr. Dewberry is October 9th. I was just going to see him as a starting point. Never considered even thinking of him doing any revision surgery. Thanks for your time.Joannexity of this procedure. While it is not immediately pressing, > he did state that this is not a procedure you want to have done at > age fifty since the bones will loose density.> > I am currently 39 and have been diagnosed with osteopenia. Thus, I > don't want to wait a long period of time to proceed. I am hoping to > hear from others who have had revision surgery and learn of the pros > and cons of their experiences. Also, can I have suggestions for > additional sources of information on this syndrome and its > treatment? I appreciate any information provided. Tonya >

September 30, 2008

I actually was sent to Dr. Dewberry to see if the pain on my right

side was related to scoliosis, rather than referred pain from my

rupture. Dr. Dewberry came highly recommended as he has done

scoliosis surgery on a local physician's daughter and the daughter of

one of my staff members(I manage an OB-GYN practice in Statesboro).

My coworker was very impressed with him, though she did warn me that

he could come across as " all business " and somewhat " cocky " . Her

daughter saw Dr. Sheils as well and they preferred Dr. Dewberry.

While Dr. Dewberry did stick to the facts at hand, I found him to be

very pleasant,thorough with his exam and explanation of the

condition, and reassuring that this problem can be corrected.

Because I was overwhelmed with the diagnosis and prognosis, I failed

to ask pertainent questions such as how many revision surgeries he

has done, etc. Like you, I have been searching for scoliosis

specialists on the internet. Dr. Dewberry is the Director of the

Southeast Scoliosis Program (I'm not sure what that is), but I

noticed he is not on the major scoliosis websites.

My pain has not prevented me from working, but it definitely has

increased over the past few years(almost daily). Like many people

with chronic back problems, I think I've developed a fairly high pain

tolerance. However, as the intensity and frequency increases, I know

I will be forced to make a decision about revision surgery in the

near future. I am thankful that I have the time to do research and

weigh my options before proceeding.

I hope you do well with you consult with Dr. Dewberry. Keep me

posted.

Tonya

>

> Dr. Shields, who is in with Dr. Dewberry, did my harrington

> ron surgery in 1981. His " bedside manners " were not good. I would

> go to him from time to time, if I was in paid. The last time, he

> told me that he could no longer help me and not to go back. I have

> been okay, except for the occasional overdoing something that

caused

> alot of pain. Until about 4 years ago.. I have had more and more

> severe pain. Last summer my neck gave me hell. I have severa

MRI's

> done, they found nothing. Finally, A PT mentioned that it was

> related to my surgery and my leaing forward and to the right. I

wnet

> on the Inernet and found flatback syndrome and it fit my symptons

to

> a " T " . I have read about revision surgery, but not sure I want do

go

> through that again. My pain control doctor has referred me to Dr.

> Dewberry here in Savannah. I am not sure I would trust him to do

any

> revision surgery. I have been searching the inernet for doctors

and

> the closest recommened are in New York and Houston. None in

Georgia.

>

> How much pain are you in and are you able to work? Please keep me

> posted. My appointment with Dr. Dewberry is October 9th. I was

just

> going to see him as a starting point. Never considered even

thinking

> of him doing any revision surgery. Thanks for your time.

>

> Joanne

>

> xity of this procedure. While it is not immediately pressing,

> > he did state that this is not a procedure you want to have done

at

> > age fifty since the bones will loose density.

> >

> > I am currently 39 and have been diagnosed with osteopenia. Thus,

I

> > don't want to wait a long period of time to proceed. I am hoping

> to

> > hear from others who have had revision surgery and learn of the

> pros

> > and cons of their experiences. Also, can I have suggestions for

> > additional sources of information on this syndrome and its

> > treatment? I appreciate any information provided. Tonya

> >

>

September 30, 2008

Thank you so much for such a world of information and advice. I am

located in Statesboro Georgia and have already had contact with

others here. This forum was been a wonderful starting point for

my " research " on this newly diagnosed problem. Like you, I think I

have actually had this for some time. However, I am grateful that I

have time and resources to help me make the right decision.

I was certainly inspired to hear your story and appreciate you taking

the time to share with me!

Tonya

Statesboro, GA

>

> Dear Tonya,

>

> Welcome to the group, sorry you find yourself needing further

surgery, but you are among friends that have been or are going down

the same path. I have had three post Harrington Rod surgeries, and am

nearly six years years out from revision and doing well. I have

osteoporosis( found in my early forties) and yes bone strength is

important, because it's important in placement of ones hardware. It's

kinda like, here you are falling apart spine wise, and bone strength

is dwindling,so decisions do have to be made about surgery,but for

most of us it's not an emergency, so theres time to consult surgeons

for opinions, do research and make a informed decision. A great deal

of us are in our early forties when Flatback raises it's ugly head,

or at least when we recognise it, or a doc finally does and has a

name and idea what to do for it. For some it comes on quite quickly,

others like me lived for years and years with it, not knowing what it

was and consulting docs who didn't either. The blessing of having it

now, versus me when mine kicked in, the early eighties they had no

idea what it was and I ran from doc to doc looking for answers

knowing there just had to be an answer, and it took till 2000 to find

a doc who diagnosised me and had a surgical plan to help me. Now it

seems to be diagnosised sooner, and people get treated sooner,

awareness of it is better.

>

> Flatback turns you into a medical reader and researcher. The joy of

this group is that besides the sharing back and forth, there is a lot

of information on the site for those beginning their research. In the

files section and data section, there is tons of good reading. Also

branch out and read, just Google Flatback, so much info you can read,

and read, and read. I'm still learning and I've been in the thick of

this for eight years now. Keep a pad next to the computer, when you

see a term you don't know write it down and research that too.

Flatback, a loss of Lordosis, needs a structural fix to restore it,

but many of us have a gamut of other problems that need to be

addressed during the surgery, stenosis being one of them for some of

us. The best thing you can do for your medical search is to request

all office visits reports, but also when seeing a doc write any

medical terms down, and research them too. When possible bring

someone with you to all doctors appointments to catch all that is

said, you can get overwhelmed with the medical -ease these doc talk

in. Keep a list of questions you have while researching for your next

visit, doc's love an informed patient, just don't hand your care to

them, but participate in your care, decisions are always yours, and

getting informed is your quest.

>

> Are you still located in Georgia? We have members there that have

had revision, and they would be a good start for you to look into

doc's for opinions. It's good with such a complicated surgery to get

at least two or three opinions on your case.

>

> I'm glad I had the surgery, before hand due to pain, I was unable

to walk more than a few feet, and could only stand for a couple of

minutes till the pain got bad, and I had to sit down to resolve the

pain. My world got smaller and smaller as it progressed. Since I

didn't want to medicate it, and injections didn't help, I wanted the

surgery done yesterday, in hopes of getting my life back. For me it

was a bit complicated, did a lami/decompression first to hopefully

stave off revision, only gave me a year till revision was needed. Had

revision, did well, till my Harrington Rod fusion mass not touched

during the revision cracked four months post op, so revision #2 was

necessary to fix the crack, so they went into my thorasic region

fused upwards from T5 to T1, replaced my hardware, and did a total

reworking of my entire spine except my neck. I'm now fused T1 to the

sacrum. Some things suck about being fused that much, I always feel

as though I have a board strapped to my back, as my torso moves as

one piece. I have no twisting ability, just a little at the

shoulders. I can lean forward from the hips a bit, nothing that even

compares to being able to bend, some have more of a ability to do

that after surgery than me, I have an odd hardware configuration and

for me I can only lean forward a few inches. I use grabbers for

things on the ground or squat, or leave them there till family gets

home. For the most part I get around it with tools and you get used

to it. I'm without that awful pain, can walk and stand as much as I'd

like, so the rest while inconvenient and frustrating sometimes, I'd

never go back to my pre revision body. I'm more able bodied now than

before, and grateful everyday for Dr. Kumar(Denver) and his skills,

this surgery, and proud of myself that I never gave up my quest to

find somebody who could fix me.

>

> So my suggestion is to read everything, got through the site,

member stories in the Files section is a good place to start, you

will find yourself in the stories there. Ask questions, we aren't

docs, but people who have the same thing and have been through the

process. Welcome and we look forward to hearing more of your story!

>

> Colorado Springs

> [ ] revision surgery

>

> Hi-

>

> I am new to this group as I have just been diagnosed with

flatback

> syndrome. My initial surgery was done in 1983 at University

Hospital

> in Augusta Georgia. Dr. performed the Harrington

rod

> placement and I had a fairly normal recovery. In 2005, I had a

> laminectomy for a large herniation at L5-S1.

>

> Over the past year, I have had increasing lower back pain. A

recent

> MRI showed another L5-S1 rupture. I consulted Dr. Dewberry

(He

> has performed scoliosis surgeries on several aquaintences of

mine).

> He performed additional x-rays and diagnosed me with flatback

> syndrome. He stated that I would eventually need to have revision

> surgery. He went over the risks and benefits as well as the

> complexity of this procedure. While it is not immediately

pressing,

> he did state that this is not a procedure you want to have done

at

> age fifty since the bones will loose density.

>

> I am currently 39 and have been diagnosed with osteopenia. Thus,

I

> don't want to wait a long period of time to proceed. I am hoping

to

> hear from others who have had revision surgery and learn of the

pros

> and cons of their experiences. Also, can I have suggestions for

> additional sources of information on this syndrome and its

> treatment? I appreciate any information provided. Tonya

>

October 1, 2008

You have given me so much information to think about. I am interested

in my meeting with Dr. Dewberry, since it has been about 20 years since

I have seen a doctor that specializes in scolosis. I just find it

amazing how many doctors and MRI's i have had done last summer when my

neck started giving me trouble. It took a PT to even get close to the

diagnosis of flatback and explain what was happening to me.

At my age and the severity of the curves ( I was a complete " S " ), not

sure if I can even consider the revision, we will see. I have two rods

that go from my butt to my neck. I was also in the halo and stretched 4

inches after I could not move my legs during the " wake-up test " during

the first surgery.

I noticed your " name - i lovemyrotts - are you referring to the breed of

dog? If so, please go check out my website - petportraitsbyjo.com. I

paint as a hobby. Since the pain has gotten worse, it takes longer for

me to finish a painting. I am still working, yesterday was the first

day I even considered calling in sick. That is something I never do,

but I was in more pain the usual and the regular meds did not give much

relief, I had to take the heavy duty and it helped.

I have built up such a tolerance that it amazes doctors that I can

function with the meds I take. Afraid it is getting to the point that

the strong meds are not working.

Anyway, thanks again for all of the info - by the way, where are you

located?

> >

> > Dr. Shields, who is in with Dr. Dewberry, did my harrington

> > ron surgery in 1981. His " bedside manners " were not good. I would

> > go to him from time to time, if I was in paid. The last time, he

> > told me that he could no longer help me and not to go back. I have

> > been okay, except for the occasional overdoing something that

> caused

> > alot of pain. Until about 4 years ago.. I have had more and more

> > severe pain. Last summer my neck gave me hell. I have severa

> MRI's

> > done, they found nothing. Finally, A PT mentioned that it was

> > related to my surgery and my leaing forward and to the right. I

> wnet

> > on the Inernet and found flatback syndrome and it fit my symptons

> to

> > a " T " . I have read about revision surgery, but not sure I want do

> go

> > through that again. My pain control doctor has referred me to Dr.

> > Dewberry here in Savannah. I am not sure I would trust him to do

> any

> > revision surgery. I have been searching the inernet for doctors

> and

> > the closest recommened are in New York and Houston. None in

> Georgia.

> >

> > How much pain are you in and are you able to work? Please keep me

> > posted. My appointment with Dr. Dewberry is October 9th. I was

> just

> > going to see him as a starting point. Never considered even

> thinking

> > of him doing any revision surgery. Thanks for your time.

> >

> > Joanne

> >

> > xity of this procedure. While it is not immediately pressing,

> > > he did state that this is not a procedure you want to have done

> at

> > > age fifty since the bones will loose density.

> > >

> > > I am currently 39 and have been diagnosed with osteopenia. Thus,

> I

> > > don't want to wait a long period of time to proceed. I am hoping

> > to

> > > hear from others who have had revision surgery and learn of the

> > pros

> > > and cons of their experiences. Also, can I have suggestions for

> > > additional sources of information on this syndrome and its

> > > treatment? I appreciate any information provided. Tonya

> > >

> >

>

October 1, 2008

I'm located in Statesboro (actually Brooklet, which is just west of

Statesboro). My " name " does refer to the breed. While I have no

children, I do have four-legged " kids " . I have two male rottweilers

and two females. I ended up with so many when I became involved with

animal rescue.

I have a single rod from T5 to L4. My scoliosis was a " backwards S

shape " with a 54 degree curvature. Up until my rupture in 2005 I

lead a fairly normal lifestyle. I've never really required much in

the way of perscription pain medications (which is a good thing since

I don't tolerate them well) until I had my rupture. Prior to my

laminectomy, I was unable to get any relief from any meds or

injections. However, once I had the surgery I was able to keep

things under control with over-the-counter analgesics like Alieve,

Ibuprofen, etc. With my recent herniation and increased lumbar pain,

my PCP did prescribe Darvocet. Luckily, I haven't had to take it

often. It completely knocks me out! I have a horror of developing a

dependence on pain medication and know that I will definitely proceed

with revision surgery when the " light " stuff quits working.

Thanks for the information on your website. I will check it out.

Keep me posted!

Tonya

> > >

> > > Dr. Shields, who is in with Dr. Dewberry, did my

harrington

> > > ron surgery in 1981. His " bedside manners " were not good. I

would

> > > go to him from time to time, if I was in paid. The last time, he

> > > told me that he could no longer help me and not to go back. I

have

> > > been okay, except for the occasional overdoing something that

> > caused

> > > alot of pain. Until about 4 years ago.. I have had more and more

> > > severe pain. Last summer my neck gave me hell. I have severa

> > MRI's

> > > done, they found nothing. Finally, A PT mentioned that it was

> > > related to my surgery and my leaing forward and to the right. I

> > wnet

> > > on the Inernet and found flatback syndrome and it fit my

symptons

> > to

> > > a " T " . I have read about revision surgery, but not sure I want

do

> > go

> > > through that again. My pain control doctor has referred me to

Dr.

> > > Dewberry here in Savannah. I am not sure I would trust him to do

> > any

> > > revision surgery. I have been searching the inernet for doctors

> > and

> > > the closest recommened are in New York and Houston. None in

> > Georgia.

> > >

> > > How much pain are you in and are you able to work? Please keep

me

> > > posted. My appointment with Dr. Dewberry is October 9th. I was

> > just

> > > going to see him as a starting point. Never considered even

> > thinking

> > > of him doing any revision surgery. Thanks for your time.

> > >

> > > Joanne

> > >

> > > xity of this procedure. While it is not immediately pressing,

> > > > he did state that this is not a procedure you want to have

done

> > at

> > > > age fifty since the bones will loose density.

> > > >

> > > > I am currently 39 and have been diagnosed with osteopenia.

Thus,

> > I

> > > > don't want to wait a long period of time to proceed. I am

hoping

> > > to

> > > > hear from others who have had revision surgery and learn of

the

> > > pros

> > > > and cons of their experiences. Also, can I have suggestions

for

> > > > additional sources of information on this syndrome and its

> > > > treatment? I appreciate any information provided. Tonya

> > > >

> > >

> >

>

November 19, 2008

Hi All

Thank god i found this forum as so many of my questions have been

answered, just by looking at past posts. But of course now i have a

dozen more - so thought i would ask people out there to let me know

what they experienced!

I have been told that i have to have a " pedicale substraction closed

wedge osteotomy " or something like that! I would like to hear from

anyone who has had something like this! I am try to find out the

following:

1. How long after the op were you able to sit? Doc said i would

battle to sit for 2 months!

2. Did you have to wear a brace?

3. How did you find the walking around - the doc said that they

would have me up and walking soonest after surgery.

4. Pain - how long does it carry on for?

5. Did you have to do any special excercises etc?

6. How long till you could drive?

7. How did you cope once home?

The reason for all the questions is that i will have to go to another

town to have surgery - about 850 km away and i am trying to figure

out how the hell i would get home! I also have my own business - i am

a short term insurance broker and work from home - so need to be able

to work out how long i would not be able to work properly! I am of

course also a mother and wife - so need to know what the rest of my

family is in for! What the doctors tell you and what is the truth i

do believe is always different and the best way to ge the information

is from People who have been through it!

I would appreciate any feedback.

Thanks

Jackie

November 19, 2008

Jackie,

I had a revision surgery in July 07. Sitting is the hardest thing after revision (or at least for me). I could sit for short periods of time but no longer than an hour for about 4-5 weeks. I flew home from my surgery and the flight was right at an hour. I had to stand next to my seat during my flight for about 10 minutes.

I wore a brace for 6 months because I have osteopenia.

Physical therapy got me up the day after surgery and I took a few steps. It was painful, but they like you up and walking around as soon as possible. By the time I got to the rehab floor I was walking up and down the hall several times per day.

Pain? That is a tough one. EVERYONE is different. I was able to get off pain meds at about 5 weeks. I have a high pain tolerance and was not on any pain medication prior to surgery. Many people are on pain meds longer. I still have days where I need to lie down after I get home from work but not often.

Special exercises: my physical therapist at the hospital gave me some leg exercises to do but they mainly want you to walk. I now swim (the best thing ever!), work out with weights, ride a stationary bike and walk.

I drove at about 5 weeks- once off the pain medication.

Once home I did ok. I took several naps per day and walked up and down my street. I was home alone, but my hubby works close by and called several times per day to check on me. I hired a maid to clean and I don't have any small kids. I went back to work full time at 10 weeks.

Just remember that everyone's timeline is different. Good luck and let me know if you have any further questions.

From: jackiegray58 <jackiegray58@...>Subject: [ ] Revision Surgery Date: Wednesday, November 19, 2008, 5:01 AM

Hi AllThank god i found this forum as so many of my questions have been answered, just by looking at past posts. But of course now i have a dozen more - so thought i would ask people out there to let me know what they experienced!I have been told that i have to have a "pedicale substraction closed wedge osteotomy " or something like that! I would like to hear from anyone who has had something like this! I am try to find out the following:1. How long after the op were you able to sit? Doc said i would battle to sit for 2 months!2. Did you have to wear a brace?3. How did you find the walking around - the doc said that they would have me up and walking soonest after surgery.4. Pain - how long does it carry on for? 5. Did you have to do any special excercises etc?6. How long till you could drive?7. How did you cope once home?The reason for all the questions is that i will have to go

to another town to have surgery - about 850 km away and i am trying to figure out how the hell i would get home! I also have my own business - i am a short term insurance broker and work from home - so need to be able to work out how long i would not be able to work properly! I am of course also a mother and wife - so need to know what the rest of my family is in for! What the doctors tell you and what is the truth i do believe is always different and the best way to ge the information is from People who have been through it!I would appreciate any feedback.ThanksJackie

November 19, 2008

-Dear Cam,

Great explanation! I know its an old post but very well done.

I'm new to all of this and only feel overwhelmed and so deeply afraid.

I left Dr. Errico at NYU Hospital last Thursday with him telling me " you know I

need to fix

you. "

I'm still in shock.

Thank you.

Annette

>

> Hi Amy,

>

> Welcome to the group.

>

> Your question about what constitutes revision surgery is a little broad

> actually. As a medical term, it simply mean the revision of any

> previous surgery. So, for example, someone who has had a prior hip

> surgery can have a " revision " if further intervention is required.

>

> In the case of our particular group, we speak of " revision " for those

> of us who have had prior scoiosis surgeries, with our groups main focus

> being on those who have developed a condition known as flatback or

> fixed sagittal imbalance. We also have members who have not developed

> this partiular malady, but instead suffer from other effects of their

> earlier scoliosis surgeries and require a revision anyway.

>

> From the groups start page we have this information on those topics:

>

> " Flatback deformity is a loss of normal lumbar lordosis, or curve. The

> medical term for this is fixed sagittal imbalance. Flatback typically

> develops when there has been a posterior spinal fusion with distraction

> instrumentation (ex: Harrrington rod). It is often accompanied by

> degeneration, instability, and stenosis. Most people also experience

> fatigue and muscle pain. A leaning forward posture, or being " bent

> over " is typical.

>

> Often this leads to revision surgery, which includes instrumentation

> and augmented fusion. Typically this reduces and stabilizes the

> flatback deformity and reestablishs balance. With proper selection of

> technique for each individual patient's spine, a qualified and skilled

> surgeon may improve the patient's pain, quality of life, and functional

> capacity. This is not an operation to be entered into lightly. "

>

> Taking that information one step further often depends on what each

> indiviual circumstances may be. Many times revision will require

> extending the fusion to the sacrum, removal of all, or part, of the

> prior instrumentation and placing new implants (rods, cages,

> screws/bolts). The most critical portion of the surgery involves

> reestablishing your lordosis (your backwaist) and making sure that your

> are balanced....since once this fusion is over the patient will be

> permanently " married " to this stance. The reseach shows that " balance "

> is the number one factor that determines if a patient will be satisfied

> with the effects of this surgery, in the long run.

>

> Where are you at in your " journey " and are you suffereing the effects

> of a prior scoliosis surgery?

>

> Take Care, Cam

>

November 19, 2008

thanks for the response - the flight from Cape Town is about an hour - so that gives me hope!!! I have a full time maid (one of the perks of living in Africa) so at least that is not an issue - but i must admit, that the thought of being incapacitated (??) is enough to bring me to the verge of madness - i am one of those very independent people who, despite my back, have always managed to do pretty much what ever i wanted to!! But will keep you posted. Hubby and I are going to chat this weekend, we were saying that we were going to give it 6 months before we went to see this doc in Cape Town, but i must admit that i am findnig every day more difficult! Was in floods of tears this morning because i am sick to death of feeling like an 80 year old! But, then it is chin up again , and we carry on!!

Maybe we will be gonig to see the doc in Cape Town a little sooner and then can get a better idea of what is what and where to next - but want to go armed with as much info as possible!

Will keep you posted.

From: jackiegray58 <jackiegray58>Subject: [ ] Revision Surgery Date: Wednesday, November 19, 2008, 5:01 AM

Hi AllThank god i found this forum as so many of my questions have been answered, just by looking at past posts. But of course now i have a dozen more - so thought i would ask people out there to let me know what they experienced!I have been told that i have to have a "pedicale substraction closed wedge osteotomy " or something like that! I would like to hear from anyone who has had something like this! I am try to find out the following:1. How long after the op were you able to sit? Doc said i would battle to sit for 2 months!2. Did you have to wear a brace?3. How did you find the walking around - the doc said that they would have me up and walking soonest after surgery.4. Pain - how long does it carry on for? 5. Did you have to do any special excercises etc?6. How long till you could drive?7. How did you cope once home?The reason for all the questions is that i will have to go

to another town to have surgery - about 850 km away and i am trying to figure out how the hell i would get home! I also have my own business - i am a short term insurance broker and work from home - so need to be able to work out how long i would not be able to work properly! I am of course also a mother and wife - so need to know what the rest of my family is in for! What the doctors tell you and what is the truth i do believe is always different and the best way to ge the information is from People who have been through it!I would appreciate any feedback.ThanksJackie

November 19, 2008

Thanks

Opinions - this is where my biggest issue is! I have only been able to find 2 doctors in South Africa who have ever done this op on Harrington Rod patients (or as they call it - spinal deformities) One of them has done 2 and the other between 15 and 20. The doc who has done the most is in Cape Town (1 hour flight) so we will be going to see him! Have been corresponding with him via email though. My hubby and i are going to have to chat this weekend, we said that we would go in 6 months time to see this doc, but i must admit that every day is getting harder and i think we are going to have to go sooner. I must admit that i find this whole thing of being so dependent the scariest!! Have always been able to do pretty much every thing i ever wanted - on my own! I have a wonderful husband and 2 kids (15 and 13) so at least i know that i will have support from them - but of course, i have always been the one to take care of them and don't like

the idea of them taking care of me!! but this is something i will have to get my head around! Thanks for the support - it is good chatting to people who have at least been there!

From: Kirkaldie <.Kirkaldie@...>Subject: Re: [ ] Revision Surgery Date: Wednesday, November 19, 2008, 3:40 PM

Dear Jackie,

Welcome, and sorry you are facing another surgery, but you are among friends here. Where are you located, and who will be doing your surgery? Did you get other opinions?

Most all of us having revision have had osteotomies, I've had three, as part of our surgeries. Google pedicle subtraction osteotomies, and tons of info will come up, with good pictures of what it looks like. They remove a wedge of bone to help straighten up your spine.

1. Sitting after surgery was tough, and I was limited to 30 minutes sitting at a time for the first six weeks. With time away from surgery it improves, just takes time and healing.

2. I wore a brace for 3 months following my first revision, and for six following my second. Many like having the brace, makes them feel secure while healing, I plain hated mine, hot and uncomfortable, mine was a TLSO, a soft plastic form of my body from the armpits to the hips, with velcro to remove it for showering and sleeping. There are a few braces out there, in the files section under photos, under Cam, she has a great picture of what hers looked like. Some doc's don't have patients wear braces at all. You'll get through it, not fun, but doable.

3. I was up walking( not far mind you) the day I woke up from surgery. First they had me get up and sit on the edge of the bed, once I was settled, they got me up to my feet. For some thats it for a first try, especially if you are shaky. Before you are allowed home, they have you walking a decent distance, and have you able to climb a few steps. You will need a walker for those first few weeks home( for me three weeks) and then I went to a cane when out in public. By week five I wasn't using and aid for walking, but thats me, everyone is different, and just how you will feel and do is as individual as you.

4. Pain, wow, thats a tough question. You need to be aware of the reasons for your pain, some of us have come through this relatively pain free after the surgical pain was over, and others will have lingering pain, much improved by the surgery, but still there. I'm in the painfree group, lucky yes. The majority of those who under go the surgery find that having ones flatback surgically corrected, lessens pain, and makes getting around easier. I'd say most are very pleased with their outcomes, painfree or not.

Surgical pain for me lasted about three months, and by then I was off all med's. Many need pain meds far longer than me. Pain and how one feels it is a different as we all are. While we all have Flatback, our surgeries similar, some are more complicated than others. So a timetable on just when you will be over surgical pain isn't really possible.

5. I did some physical therapy at the three month mark. Some docs say no to anything other than walking till the one year mark. Walking is good exercise, and helps build endurance, and I walked a lot during recovery.

6. I drove at about the one month mark, very early, but with my doc's permission. Mind you I wasn't driving but to the school and back, nothing extensive. Most doc's let patients drive around the three month post op mark. Mostly you have to have the strength in your feet to handle braking, and be stepped down on meds to where it is safe. I'd say this too will be personal, just geared to how you are recovering.

7. The first three weeks home are a blur. The first two are mostly about taking care of bodily functions, a walk to the bathroom, or a shower( with help), will be your big events of the day. You will sleep a great deal. I say you will need someone with you for the first three weeks. After that you can go longer periods alone. I got better and stronger each day, but it does feel like it goes on forever, the recovery. It plain goes slow, but every week you get stronger and can do more. I remember making the first family meal at about one month( nothing fancy) but it felt so good to be useful.

When you come home, really it's all about you and your healing. You will use a walker and you will be tuckered out just walking to the bathroom. You will need a raised toilet seat, at our house we had three bathrooms, so we dedicated one to me, and had it setup just for me. Showering can and will be exhausting, so you will need a shower chair for the first bit home. You will need a grabber to help with clothing, and anything down low. Many use a dressing stick with a long shoe horn. Slip on shoes are best. Keep clothes easy and comfortable, satiny PJ's help getting in and out of bed, and I wore sweats and a T-Shirt. A sock aid to help put on socks is a must, I still use mine. The nitty gritty is the first six weeks is tough, you are dependant, needy, uncomfortable, painful, and struggling, but you are building bone, making fusions, recovering from blood loss and trauma to your body. It's not easy, probably one of

the toughest things you'll do, but so worth it. I'm glad I did it every day.

Work and going back to it, just depends on how you heal.Some are back at three months, some at six. There are some that after all this have to reevaluate their job, either do something else, or not work. Since you have an office type job, it will depend on how comfortable you are sitting. Getting up during the day and walking helps, and if you have a place to lay down for a few minutes a couple of times a day, thats really helpful. Many ease back into work gradually, partime for a while and then back to fulltime. There is no clean cut answer to this other than you will have to follow your body and listen to it.

Many have to travel for surgery, I was lucky and had mine locally, but travel home is possible. Planes are great, if there aren't too many transfers, get med's accordingly. Some travel home by car or van, for me the car in the brace was uncomfortable, just the half hour home, I remember all bumps in the road. I think my prefered way would have been to lay down in a bed in a van. Some if traveling a great distance home, after hospital go to rehab facilities for a week or two to help heal up a bit before the long trip home. Worth a discussion with your doc.

This is a tough surgery, takes a whole lot out of you, and since we are no longer kids, takes a good long while to pop back. The first three months is basic healing. The next three is adjusting to your new body and getting back into the world. Six to twelve months is about building strength and endurance. I'd say I didn't feel like my old self till about 18 months post op. It just takes a LONG time. But even then I'd do it again tomorrow if need be, as I got so much from it, it's good to have the pain gone and be able to walk and stand as much as I like. A gift, but didn't feel like it when I was in the middle of it. You just have to get through it, as Flatback doesn't fix itself, and will only get worse with time.

Hope that helped!

Colorado Springs

[ ] Revision Surgery

Hi AllThank god i found this forum as so many of my questions have been answered, just by looking at past posts. But of course now i have a dozen more - so thought i would ask people out there to let me know what they experienced!I have been told that i have to have a "pedicale substraction closed wedge osteotomy " or something like that! I would like to hear from anyone who has had something like this! I am try to find out the following:1. How long after the op were you able to sit? Doc said i would battle to sit for 2 months!2. Did you have to wear a brace?3. How did you find the walking around - the doc said that they would have me up and walking soonest after surgery.4. Pain - how long does it carry on for? 5. Did you have to do any special excercises etc?6. How long till you could drive?7. How did you cope once home?The reason for all the questions is that i will have to go

to another town to have surgery - about 850 km away and i am trying to figure out how the hell i would get home! I also have my own business - i am a short term insurance broker and work from home - so need to be able to work out how long i would not be able to work properly! I am of course also a mother and wife - so need to know what the rest of my family is in for! What the doctors tell you and what is the truth i do believe is always different and the best way to ge the information is from People who have been through it!I would appreciate any feedback.ThanksJackie

November 20, 2008

Jackie,

I too would go and see the doc that has done more of these surgeries. Do you have any options outside where you live?

Believe me, that if all this comes out very well, it's so worth it, and your family will be blessed too by having a Mom who isn't sore all the time, pain takes a toll on everyone around you. Sure it sucks to have to be dependant for awhile, but you are giving them an opportunity to grow as people, being a caregiver for awhile will probably make them stronger people, and make them appreciate you all the more. At 15 and 13, they will be a great help, good for them to see that life isn't always peachy. My family came out of my surgeries stronger( I've had three post Harrington Rod surgeries in two calendar years). You would do the same for them, so let them help you. You have to let go of the Wonderwoman in you, and just adjust to having people help you, you will need it. You will be back doing things in time, but healing is your first job, not fun but real.

Colorado Springs

[ ] Revision Surgery

Hi AllThank god i found this forum as so many of my questions have been answered, just by looking at past posts. But of course now i have a dozen more - so thought i would ask people out there to let me know what they experienced!I have been told that i have to have a "pedicale substraction closed wedge osteotomy " or something like that! I would like to hear from anyone who has had something like this! I am try to find out the following:1. How long after the op were you able to sit? Doc said i would battle to sit for 2 months!2. Did you have to wear a brace?3. How did you find the walking around - the doc said that they would have me up and walking soonest after surgery.4. Pain - how long does it carry on for? 5. Did you have to do any special excercises etc?6. How long till you could drive?7. How did you cope once home?The reason for all the questions is that i will have to go to another town to have surgery - about 850 km away and i am trying to figure out how the hell i would get home! I also have my own business - i am a short term insurance broker and work from home - so need to be able to work out how long i would not be able to work properly! I am of course also a mother and wife - so need to know what the rest of my family is in for! What the doctors tell you and what is the truth i do believe is always different and the best way to ge the information is from People who have been through it!I would appreciate any feedback.ThanksJackie

November 20, 2008

No, the only other option would be to go to England or USA and i am afraid that the South African rand makes that a no go - also, we do not have national health here and have to take out a medical plan privately - thank god we did and did take a good one that will probably pay most of the costs of the surgery (about 80%), but the costs of going overseas are just beyond us!! am still trying to see if there is someone in SA with more experience and will not give up on that! thanks for the kind words.

From: Kirkaldie <.Kirkaldie@ Comcast.net>Subject: Re: [ ] Revision Surgery Date: Wednesday, November 19, 2008, 3:40 PM