Revision Surgery

[Guest guest]

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]

how do I get to that info? sorry if it is obvious, but I'm in so much pain, I

just need to be instructed like I'm a 4 year old, thanks, Londa2612@...

& Peggy Greene <jpgreene@...> wrote: 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]

Londa -- Just a quick note to say I posted replies to you and Peggy

earlier today. My reply to you is #109. Please feel free to send me

your phone number, too, if you would like me to call you. I am

really concerned about you. This is not a medical opinion, and I am

not a doctor, but do you have a good pain management specialist, or

can you get to one? I know the right pain doc is not always easy to

find. I think you need some relief from all that pain, though, as

the first precondition for getting other kinds of help -- for feeling

calm enough even to think about pursuing more definitive treatment.

I am rooting for you, thinking about you, praying for you to feel

better very soon. Take care, and please keep posting and sharing

your experiences here at the list, if nothing else. Let me know what

I can do to help.

Best,

E

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]

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]

Here is the home page address for the group. Anyone can join

it just like they did this group.

Scoliosis Treatment

The owner approves all messages before they post and the subject is strictly

limited to scoliosis. As I said earlier, there are many on this list that have

had revision surgery but most of them continue to have problems after revision.

Needless to say, those that have had successful surgeries seldom join groups

like this because they have no need of information or support. But you can ask

all the questions you want and someone will answer you that has had surgery.

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

Re: Revision Surgery

how do I get to that info? sorry if it is obvious, but I'm in so much pain, I

just need to be instructed like I'm a 4 year old, thanks, Londa2612@...

& Peggy Greene <jpgreene@...> wrote: 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]

Has anyone heard of VAX-D tx?? My neurologist read my MRI and said that I do

have a small HNP at L5-S1 and that he thought that this tx may help. He happens

to own the MRI and the VAX-D table by the way. I asked him if this could be the

aging process of the spine due to my scoliosis? He said he didn't believe so

since the MRI did not show any spondylisis or scarring. I was under the

impression that a HNP was part of the wear and tear of the spine above and below

the fused spine. I remind you that I have fusion from C3-C7 and T1-L4-5, I also

asked him if he had done much research into the disease itself, he didn't answer

me. I have brought him articles I have printed up from the internet on the

disease and the aging scoli patient and revision surgery. Honestly, I am so

angry, not that I have a small HNP (any size whether it be large or small is

still a herniated disk to me) and that he didn't think that I needed revision

surgery at the present. I am just feelling again that we are the only persons

that do any research ourselves. Perhaps we should get our research together and

publish our own research studies!! UGH Londa

d table vfisher <vfisher@...> wrote: 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 first looked into VAX-D when I started seeing it being advertised in the

newspaper. I automatically distrust any medical procedure that advertises

itself, such as Lasik eye surgery, but in the " any hope is good hope "

category, I looked into it. (I'd love to have Lasik--my vision is

terrible--but one thing I've learned from this Harrington rod fiasco is

that I ain't having ANY surgery until it's been around for three decades so

I can see the long-term fallout.)

A quick rehash of online research indicates that that VAX-D is

contraindicated (as in, it's a bad idea and a qualified practitioner

shouldn't use it) on anyone with instrumentation in their backs.

For example, at www. vax-d.net/doctor.htm, EDWARD A. FERRIS, M.D., Medical

Director, SOMA Medical Center, St. Louis, Missouri, says " ...As mentioned

above, the indications for VAX-D treatment are Acute and Chronic Lower Back

Pain related to Degenerative Disc Disease, Disc Herniation and Bulging,

Posterior Facet Arthropathy, regardless of previous treatment received,

*except surgical hardware instrumentation.* " (Emphasis added by me. ALso,

for some reason keeps rejecting this message with the URL

correctly written, so if you want to visit the site, delete the space

between www. and vax-d. I'm having a bad technology day AND a bad hair day.)

I researched this before and found even more detailed info about how this

should NOT be used with instrumentation.

In patient message boards, people are talking about how they did single

disk fusions without instrumentation simply so they could have VAX-D

treatment without risking damage to the instrumentation from the

VAX-Decompression forces, so my guess is that the rods, screws, or whatever

kind of instrumentation a person has simply can't hold up to the forces

that the VAX-D machine puts on them.

Popping a screw or a rod would, indeed, be really really bad. You should

definitely seek other opinions from orthopedists as well as other VAX-D

practitioners before undergoing this if you have instrumentation. If you

don't have instrumentation, well, let me know how it goes! (However, when

your back is as screwed up as ours are, you probably shouldn't do ANYTHING

without three or four opinions, but I know I'm preachin' to the choir here.)

Elissa

At 08:29 AM 11/30/2001 -0800, you wrote:

Has anyone heard of VAX-D tx?? My neurologist read my MRI and said that

I do have a small HNP at L5-S1 and that he thought that this tx may

help. He happens to own the MRI and the VAX-D table by the way. I asked

him if this could be the aging process of the spine due to my

scoliosis? He said he didn't believe so since the MRI did not show any

spondylisis or scarring. I was under the impression that a HNP was part of

the wear and tear of the spine above and below the fused spine. I remind

you that I have fusion from C3-C7 and T1-L4-5, I also asked him if he had

done much research into the disease itself, he didn't answer me. I have

brought him articles I have printed up from the internet on the disease and

the aging scoli patient and revision surgery. Honestly, I am so angry, not

that I have a small HNP (any size whether it be large or small is still a

herniated disk to me) and that he didn't think that I needed revision

surgery at the present. I am just feelling again that we

are the only persons t

d table vfisher <vfisher@...> wrote: 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]

What is an HNP?

**** NEW/changed URL FOR SALVAGE SITE, ADD TO FAVORITES BOOKMARK****

LIFE IS UNCERTAIN....EAT DESSERT FIRST

" Harrington Rod people and other post-op multiple spine surgery people may

be interested in the following website dedicated to flatback syndrome and

multiple spine surgery cases: " Salvaged Sisters of Scoliosis " website

http://forums.delphiforums.com/adultscoliosis/messages

[Guest guest]

> Tina,

> Here is a link to an article about revision surgery.

> http://www.scoliosismd.com/flatback.html Alyssa

Alyssa,

thanks so much for the link - now I understand. Tina

[Guest guest]

Hi, and welcome.

Revision surgery is when you've already had surgery but are having problems and

need to be operated on again.

In this context most of the revision surgeries discussed are to correct a

sagittal imbalance (a.k.a. flatback syndrome, or HARMS) which resulted from

Harrington rod instrumentation used earlier to treat scoliosis.

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

Revision surgery

What exactly is revision surgery? Thanks, new here!

[Guest guest]

Margo,

I do hope that your doctor will send you to a pulmonary specialist. My

doctor sent me to one who has tested me at least once a year, helped with my

treatment, and, as a bonus, helped me to calm down! I do have COPD and asthma

(never had it before) etc. I feel so much better now that I have two good

doctors

who know my situation. Of course, I cannot diagnose or prescribe, etc., but I

do hope that you do see a specialist. Perhaps then your treatment for pain

will not be up for grabs!

Sincerely,

Carole

[Guest guest]

Hi ...

You need to remember that we're all just lay people. And, while our

opinions may be interesting, they could easily be wrong.

I can't remember where you live. Maybe you can post that information,

along with the names of the two specialists. I think that a third

opinion, hopefully one that agrees with one of the first two doctors,

is in order.

Regards,

[Guest guest]

Dear ,

Since surgery is required in either scenario of the lumbar spine I think it

isn't that critical which opinion is right. The correction will be much less

awful that the original surgery because it is smaller. I think you/he have to

do it to relieve your son's pain.

The second problem in the thoracic spine is the real issue. I think it might

depend on who issued the two conflicting opinions. Did you tell the second

doctor what the first one said? I'd return to both and see if either would

comment on the other's opinion and get a third from an outstanding expert. (I

don't know where you live so I can't recommend any.) Sorry I can't be more

specific. I agree the disagreement puts you in a terrible bind. The thoracic

region's importance is the lung/heart complication although that would be a few

years off if it progresses. gave the website yesterday of the studies on

progression to check out.

Good luck for you both.

Jolene

[Guest guest]

Jolene,

Thank you for your response. Your thoughts and suggestions are very

helpful. I feel so desparate and so alone with this situation. You have

provided

some much needed support and understanding.

[Guest guest]

Hi Barbara,

Just a note to welcome you to the group from me, the " other "

Barbara. You will find lots of information here. The people in this

group really do take the time to help each other.

Since you are looking for a doctor in Minnesota have you

considered the Mayo Clinic in Rocheser? At one time I was given a

referral to a Dr. Dekutoski at Mayos. I didn't see him but just

thought I would throw out a name. You might want to check the

Scoliosis Research Society web site for doctors in your area. Do you

live in the Twin Cities? I used to live in Minneapolis in the early

80's; that's where my kids were born. Great city.

Sorry you are in so much pain. I had a revision in 2001 and

still have nerve pain in my leg. At this point in my life I'm

looking at a hip replacement in the near future. You will find

others in this group at various points in this continuous struggle

with our spines. There are pre-op, post-op, good recoveries,

difficult recoveries, various levels of pain, etc. Best of luck.

Barbara in Missouri

> I am 28 years post op from my first surgery for scoliosis as a 17

> year old. I need to have the revision surgery to remove my

Harrington

> Rod which runs the length of my spine to L4, have an osteotomy, and

> then fusion into the sacrum and ileum. I have a million questions,

> but would like to ask if anyone has had this surgery performed in

MN

> and by which doctor.

>

> I also want to ask if people will tell me how their pain levels are

> post op, particularly after an osteotomy.

>

> And finally, another question foremost in my mind is, has anyone

had

> their fusion into the ileum? And how did the fusion process go?

>

> This is a good starting place. I have other questions about post op

> strategies that I will be eager to ask later as well. I have a

> history of blood clots (pulmonary embolism and DVT); I also have

> three genetic factors for clotting as well, so it feels like the

> risks are high for me. If you got through the surgery with any

blood

> clotting issues, I would be grateful for these insights as well.

>

> I am soooo relieved to learn of this chat room. I got the

information

> from the people at the OrthoSpine Clinic in New York. They were so

> nice. I just really, really need to hear from people who are going

> through the same thing as me. I have lost my job/ the business I

> owned and have to lay down many times a day. The pain and life

> limitations are really driving me down a surgical road in hopes of

> relief.

> With gratitude for your insights,

> Barbara

[Guest guest]

Hi Debsworld, (sorry not sure of your first name)

I have not had the revision surgery yet but I also went to UCSF and saw DR

Hu a few months ago. Sounds like they would do the same thing for me with

removing part of the rod and osteotomies to 3-4 levels. I am not having any

trouble with my legs but she did say if you wait too long you can start having

nerve damage etc.... DO you live here in California? Have you scheduled your

surgery yet? Keep us posted.

[Guest guest]

That is the same doctors I am looking at seeing in SF. I live in MD

now I am moving to Calif next week. (Simi Valley area) I have been

trying to get the appt with UCSF but Dr Bradford is on vacation this

whole month so they told me I have to wait till probably Nov to see

him. So nothing scheduled as of yet. I am having trouble with

fainting feeling, bad headaches etc too, they cannot figure it out

but say it may be related to the back as well. Ever heard of that?

Thanks for the info!

Debbie

> Hi Debsworld, (sorry not sure of your first name)

> I have not had the revision surgery yet but I also went to UCSF

and saw DR

> Hu a few months ago. Sounds like they would do the same thing

for me with

> removing part of the rod and osteotomies to 3-4 levels. I am not

having any

> trouble with my legs but she did say if you wait too long you can

start having

> nerve damage etc.... DO you live here in California? Have you

scheduled your

> surgery yet? Keep us posted.

>

>

>

>

[Guest guest]

Dear Debsworld,

I had my last revision surgery in December of 2002, and though it was a big

surgery I don't regret it for a moment. I was in so much pain and unable to walk

very far that it was a no brainer to have the surgery. I am upright, have level

shoulders, am able to walk wherever I want, and best of all I am pain free. I am

fused from T-2 to the sacrum. I had my complete Harrington Rod removed, and have

new hardware, three rods, two bolts, and twenty some odd screws. I believe there

are members of the group that have had revision surgery and still have parts of

their Harrington rods. I had my Harrington Rod surgery at UCSF in 1973, at age

14. I had my revisions with Dr. Anant Kumar in Denver Colorado in January 2002

and December 2002. Please know that pain control after surgery is much better

today, that the braces are more comfortable, and while it's a huge event in your

life, I was able to come out of it feeling and looking much better. Let me know

if I can help!

Colorado Springs

Revision Surgery

I have been told I have to have the revision surgery due to

Flatback. Anyone had this? I have talked to docs at s

Hopkins, but have opted to have the surgery in Calif at UCSF.

Supposedly the best place in the country besides Hopkins to get this

surgery done.

They say they have to remove the lower part of the rod and leave the

upper part inside. Then reconstruct about 4 of my lower vertebrae.

And say I have lost the reflexes to my legs already and things are

only going to get worse as I wait.

This whole thing scares me to death, the surgery the first time was

horrible, this one sounds even worse.

So I was wondering if anyone had any insight into this whole thing?

Thanks !!

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 Debbie...

Dr. Bradford isn't doing much in terms of surgery these days,

especially big surgeries. May I suggest that you try Drs. Berven, Hu,

or Deviren at UCSF? They're all great surgeons. Drs. Berven and

Deviren were trained by Dr. Bradford.

Regards,

> That is the same doctors I am looking at seeing in SF. I live in MD

> now I am moving to Calif next week. (Simi Valley area) I have been

> trying to get the appt with UCSF but Dr Bradford is on vacation this

> whole month so they told me I have to wait till probably Nov to see

> him. So nothing scheduled as of yet. I am having trouble with

> fainting feeling, bad headaches etc too, they cannot figure it out

> but say it may be related to the back as well. Ever heard of that?

> Thanks for the info!

>

> Debbie

[Guest guest]

I just had my revision done 8/5. The anticipation is worse than the actual

surgery. In my case anyway. Just keep a positive attitude, research, correspond

with members here, and you'll be on your way to success.

Best of luck to you.

xoxo's

[Guest guest]

Thanks for the info! This site jas been very helpful. Glad my dad

told me to check into it!

Debbie

> I just had my revision done 8/5. The anticipation is worse than

the actual surgery. In my case anyway. Just keep a positive

attitude, research, correspond with members here, and you'll be on

your way to success.

> Best of luck to you.

> xoxo's

>

[Guest guest]

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.

I was fused from T-5 to L-3 in my Harrington Rod surgery in 1973. From 1984 till

2000 I had a lot of symptoms that I went from doctor to doctor trying to get

answers for. I had pain that shot down my right leg, low back pain, severe right

hip pain. At the end I couldn't stand up straight. Most doctors said my fusion

was fine, and that I would never be pain free and to live with it. I got to the

point I was in so much pain that when we moved to Colorado from Oregon I thought

I'd give doctors one more shot. Dr. Kumar took one look at my X-ray and said " Oh,

my, who did this? " I knew at that moment I was in the right place. He explained

that I had Flatback Syndrome, the hows and whys of it. For the first time in my

life I had someone who truly understood scoliosis and what I had been through

with it. We opted for a decompression surgery for steniosis and hardware removal

to see if I could avoid fusion to the sacrum, or at least buy me some time.

Within six months the pain was back and it was onto fusion to the sacrum, or

surgery #2. Fusion to the sacrum went well till six months following it and my

old fusion above this surgery cracked, and I had waist pain and was falling over

to the right to the point that my ribs were resting on my hip. So then we were

onto surgery #3 with Dr. Kumar. This time they fused my open vetebraes T-2 to

T-5, took out hardware I had put in the second surgery and replaced it with two

long rods, one short rod, twenty some odd stainless steel screws. They left in

the bolts in my Illiac crests. I have most of my spine fused, but for me it has

given me the freedom to live my life. I'm better now than I have been in twenty

years.

The plan was with me to remove my Harrington rod, I wasn't given the option to

leave it in. I have it in a bag, it makes for good conversations. If you are

fused down to the sacrum, I'm sure you'll get some new hardware. In surgery #2 I

got cages, small segmented rods, screws and those 5 inch bolts. I know we are

all different and if your doc says that removing your Harrington would smash

things by all means leave it there. What your looking for is a good outcome, and

each case is different, what worked for me might not work for you. I had a lot

of surgery to get where I am, 30 some hours, and my only regret is having the

decompression instead for going for the fusion to the sacrum from the get go.

But if the decompression had worked I would have been a happy troupper, so it's

all in hind sight.

Drawbacks of being fused so high and so low are many, but I can't @#$%^ & since I

am pain free, and that was what I was looking for. I can't bend, I can lean

forward a little. I have a lot of numbness, most of my back and my left thigh. I

hate when people hug me or pat my back, I just want to come out of my skin it

feels so weird. I hope with time the numbness will receed some, I have gotten

feeling in my shoulders back. Not being able to bend means shaving ones legs is

an event, I can't put on nylons, Oh, well I always hated them anyway. I wear a

lot of slip on shoes, use grabbers to get things off the floor. I have trouble

picking up stuff with outreached arms, nothing heavy. I can't sit down in a

bathtub, and getting down and up from sitting on the floor isn't fun. Those are

the drawbacks, and on a down day when I've dropped something for the twentieth

time there can be a tear, mostly from frustration. Then I have the talk with

myself, the one about would I rather have the pain or the inconvenience . I

always opt for the inconvenience, dry my eyes and go on.

I look better, I am straight up and down, my rib hump is greatly reduced, I

have level shoulders, and yes I am pain free. Am I disabled, yes, but more abled

than I've been in years. I walk where I want, and have the joy of seeing the

sky! I hope this helps!

Colorado Springs

Revision Surgery

I have been told I have to have the revision surgery due to

Flatback. Anyone had this? I have talked to docs at s

Hopkins, but have opted to have the surgery in Calif at UCSF.

Supposedly the best place in the country besides Hopkins to get this

surgery done.

They say they have to remove the lower part of the rod and leave the

upper part inside. Then reconstruct about 4 of my lower vertebrae.

And say I have lost the reflexes to my legs already and things are

only going to get worse as I wait.

This whole thing scares me to death, the surgery the first time was

horrible, this one sounds even worse.

So I was wondering if anyone had any insight into this whole thing?

Thanks !!

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]

,

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]

[Guest guest]

Dear Loriann,

I could pick things up from the floor following the Harrington rod surgery, but

at that point I still had L-4 and L-5 open and movable. The fact that you can

bend when you are fused to the sacrum has me curious. I wonder if how high you

are fused and what hardware you have plays a roll in it. Since I am the Home

Depot hardware wise, that maybe why I'm so unbendable. Since I have cracked

fusions I don't push too much to see how far I can bend at the hips, I

definately feel the hardware when I go forward more than a foot.

As for regrets, I have none. I think we all have regrets when we wake up from

surgery and during that first month, I thought what the hell have I done to

myself. But when you get away from the pain and the walker and the brace, you

can then begin to see the merits of surgery. I guess that picking the right

surgeon for you is key, Knowing their skill set, talking to others who have had

the same thing done with them. I knew Dr. Kumar would give me the best outcome

possible, he has a confidence about him that makes you feel secure. I know this

is a gut thing, but it's important to do your homework along with following your

gut. I have been through three surgeries with this man and I count this doctor

among my friends along with his assistant Lee. I think having a doctor you can

talk to, and I mean really talk to is key. One who returns calls, where you are

not just another X-ray or case but a person with a family and a life. The best

compliment I can give Dr. Kumar is that he is now treating my 12 year old

daughter who has a 19 degree " c " curve, I wouldn't let another doctor treat her.

Lee and him understand what a dark day it was for me when I found her curve, I

couldn't believe that I would have to go through this again. But she is ahead in

the Scoliosis game since she has a mother who understands the beast, and a

doctor who will do his level best for her.

I wish you luck with your quest for the right doctor for you, and that you can

come out of surgery with the best outcome possible! Hope this was of help to

you!

Colorado Springs

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]

> 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?

>

Lorianne,

I haven't had, or scheduled surgery, however when I was questioning

Dr.Rand on this point (he is recommending to fuse the rest of me.. L-

5 to sacrum) he felt that because I am hypermobile in my joints I

would have good flexibility from the hips etc. so that may explain

some of the differences in your experience/our group....don't

know,just a thought.

FWIW...When he was verifying flexibility he was questioning me about

Marfan syndrome in my family (not) and seemed to think I did not have

it either. However, hypermobility of joints/scoleosis/tallness are

all indicators. Of course I read up on it when I returned home and

scared the #*%@ out of myself!

I am sure others who have been through the surgery can give you more

input on what to expect. Good luck, Cam