Re: first flatbacker

[Guest guest]

Ouch Evie,

Ouch. I am so sorry you just found out this drastic news. It is

however, very survivable. In fact, if you have surgery, in time you

will be dancing to the tune of your new body but yet it is a very

hard road to take. As difficult as it was, I have absolutely no

regrets and I do have lingering tingling in my left side. In the

left column, in files, Cam's questions file is listed there. It is

pretty all encompassing. I used it myself and added my own to it. I

am three months post op. Yes, I had osteotomies? sp? where they cut

into the lumbar, I had three in L3 done. It hurts but is still

healing. Let's start with the easy stuff. Where are you from? Which

revision specialist is doing your surgery. Do you have scoli? A

Harrington rod? Anyway, welcome to the site, the group is very

supportive and will help with all your questions. I know this is a

freaky and madning thing to have to deal with and never mind just

finding out about it. Find your center and take a deep, deep breathe

and if you believe then pray.

>

> Hi All, I'm brand new to these forums AND have just found out

about my

> own flatback and the recommended surgery to correct it. I am going

> through all the stages of emotions and am just out of the " freaked "

> stage and am in the middle of " Pi**ed " . I won't go into that bit

> because it's pointless.

>

> So I'd like to start out with broad questions if I could. I noticed

> that awhile back, cammaltby, in reference to her pre-surgery prep,

> posted " ... we went over my 5 pages of questions for at least an

hour.

> (I will try to get those up in the files section soon). "

Cammaltby, I

> would be grateful to be able to see this file and use it as a

> guideline for my follow-up visits and second opinions.

>

> IN Addition, it would be very helpful, comforting, discomforting

> perhaps to hear from others who:

>

> 1) opted NOT to have the correctional surgery (or are delaying the

> surgery) - - why NOT to do it, pain soultions or delaying

strategies ...

>

> 2) have had the surgery where they cut a notch of the spine and

bolt

> it all back together - - how long ago did you do this? long term

> fallouts? Still in pain? worse off? does it feel like a patchwork

that

> created another problem?

>

> 3) anyone have doubts/misgivings/regrets about this (to me, anyway)

> drastic solution?

>

> I also realize after all these questions, I'm asking an audience

> whether they made a bad choice and for a lot of reasons, people

will

> tend toward the positive, HOWEVER, as I said, I'm Pi**ed. and I

> suppose I want to know what the downsides and risks are. Yeah, I

got

> the stats and numbers from the websites, but I want to know from

you

> guys who can give me the honest skinny.

>

> I'm getting a CT-Myelogram this week and am freaked about that as

it

> is. As a whole, I'm scared, mad and (did I mention " freaked " ?)

about

> this new stage of my health finance and family plans picture.

bitter

> bitter pill, but I need to swallow it bit by bit, washed down with

a

> lot of ginger ale.

>

> thanks all, Evie.

>

[Guest guest]

HI Evie,

I assure you, we understand each of your emotions, including Pi--ed and Freaked.

I think we can answer your questions, but first really need to know just what is the surgery recommended to you (I understand the "notch" and "bolts"). Anterior/posterior? Or posterior only? Fusion from where to where? What docs have you seen? Are you going to see another/ Who? Did you have Harrington Rod surgery for scoliosis? How long is your fusion now? Answers to all these will enable us to give you appropriate answers.

That being said, having had revision surgery 81/2 years ago, I can say that I feel your pain (as trite as that sounds) both physically and mentally. Lots of us have been there and will be glad to help.

Bonnie

[ ] first flatbacker

Hi All, I'm brand new to these forums AND have just found out about myown flatback and the recommended surgery to correct it. I am goingthrough all the stages of emotions and am just out of the "freaked"stage and am in the middle of "Pi**ed". I won't go into that bitbecause it's pointless.So I'd like to start out with broad questions if I could. I noticedthat awhile back, cammaltby, in reference to her pre-surgery prep,posted "... we went over my 5 pages of questions for at least an hour.(I will try to get those up in the files section soon)." Cammaltby, Iwould be grateful to be able to see this file and use it as aguideline for my follow-up visits and second opinions. IN Addition, it would be very helpful, comforting, discomfortingperhaps to hear from others who: 1) opted NOT to have the correctional surgery (or are delaying thesurgery) - - why NOT to do it, pain soultions or delaying strategies ...2) have had the surgery where they cut a notch of the spine and boltit all back together - - how long ago did you do this? long termfallouts? Still in pain? worse off? does it feel like a patchwork thatcreated another problem?3) anyone have doubts/misgivings/regrets about this (to me, anyway)drastic solution?I also realize after all these questions, I'm asking an audiencewhether they made a bad choice and for a lot of reasons, people willtend toward the positive, HOWEVER, as I said, I'm Pi**ed. and Isuppose I want to know what the downsides and risks are. Yeah, I gotthe stats and numbers from the websites, but I want to know from youguys who can give me the honest skinny.I'm getting a CT-Myelogram this week and am freaked about that as itis. As a whole, I'm scared, mad and (did I mention "freaked"?) aboutthis new stage of my health finance and family plans picture. bitterbitter pill, but I need to swallow it bit by bit, washed down with alot of ginger ale.thanks all, Evie.

[Guest guest]

HI Evie,

I assure you, we understand each of your emotions, including Pi--ed and Freaked.

I think we can answer your questions, but first really need to know just what is the surgery recommended to you (I understand the "notch" and "bolts"). Anterior/posterior? Or posterior only? Fusion from where to where? What docs have you seen? Are you going to see another/ Who? Did you have Harrington Rod surgery for scoliosis? How long is your fusion now? Answers to all these will enable us to give you appropriate answers.

That being said, having had revision surgery 81/2 years ago, I can say that I feel your pain (as trite as that sounds) both physically and mentally. Lots of us have been there and will be glad to help.

Bonnie

[ ] first flatbacker

Hi All, I'm brand new to these forums AND have just found out about myown flatback and the recommended surgery to correct it. I am goingthrough all the stages of emotions and am just out of the "freaked"stage and am in the middle of "Pi**ed". I won't go into that bitbecause it's pointless.So I'd like to start out with broad questions if I could. I noticedthat awhile back, cammaltby, in reference to her pre-surgery prep,posted "... we went over my 5 pages of questions for at least an hour.(I will try to get those up in the files section soon)." Cammaltby, Iwould be grateful to be able to see this file and use it as aguideline for my follow-up visits and second opinions. IN Addition, it would be very helpful, comforting, discomfortingperhaps to hear from others who: 1) opted NOT to have the correctional surgery (or are delaying thesurgery) - - why NOT to do it, pain soultions or delaying strategies ...2) have had the surgery where they cut a notch of the spine and boltit all back together - - how long ago did you do this? long termfallouts? Still in pain? worse off? does it feel like a patchwork thatcreated another problem?3) anyone have doubts/misgivings/regrets about this (to me, anyway)drastic solution?I also realize after all these questions, I'm asking an audiencewhether they made a bad choice and for a lot of reasons, people willtend toward the positive, HOWEVER, as I said, I'm Pi**ed. and Isuppose I want to know what the downsides and risks are. Yeah, I gotthe stats and numbers from the websites, but I want to know from youguys who can give me the honest skinny.I'm getting a CT-Myelogram this week and am freaked about that as itis. As a whole, I'm scared, mad and (did I mention "freaked"?) aboutthis new stage of my health finance and family plans picture. bitterbitter pill, but I need to swallow it bit by bit, washed down with alot of ginger ale.thanks all, Evie.

[Guest guest]

Dear ,

Thank you so much for your words and for the invaluable forums. I have a lot of reading to do! There are a lot of views and stories – exactly what I was looking for. I think I need a folder for all these printouts.

To answer some of your questions:

I’m in Seattle, Harrington rod from 1983(ish, can’t remember exactly), I don’t have a revision specialist yet. I’m getting the CT Myelogram this week and will get more details soon.

Thanks also for sharing your stats. 3 cuts?! I want to cry. Lastly, please let me know if I should have sent this email somewhere else or another way - for example, replying just to redmarmie insteadof the group.

Thanks again for your help. Gotta go read now.

Evie.

[Guest guest]

Evie,

Hi and welcome! As you spend time going back through the site I know

you will find out that we were all just as shocked at ticked off as

you when we learned that the " fix " from our childhood has come back

to haunt. It stinks.

I had read a book, " Death and Dying " , by beth Kubler-Ross,

many years ago after a family member had passed. I realized as I was

going through my own initial reactions to finding out I had flatback

that the stages of coming to an understanding with a beloved persons

death seemed almost exactly the same to me as getting my head around

this monster: denial, anger, bargaining, depression, acceptance.

I have never spoken with a therapist about this, so I am just

guessing, but perhaps it is a normal way we humans come to terms

with " bad news " . So, please dont feel you have to shy away from the

angry part. It helps to acknowledge it. Even as I was working my way

to a decision about surgery I would find myself crying about how

unfair it all was at the oddest times.

If you are reading from the actual site you will have tons of

reading off the pull down menu on the left hand side. You are

welcome to use anything you find to form you own questions for the

doctors that you will, no doubt, be interviewing.

If there is one piece of advice I can give you at this stage it is

to not get too hurried at this point. Flatback itself is generally

no emergency. Surgery can be delayed and if you decide to go ahead

it can be at the time and place of your choosing. It is huge surgery

(ies) and you will want to be sure you have found the best

surgeon/hospital for you and your situation. Timing, insurance,

family issues will all play a part in deciding how you can go

from " point a " to " point b " as best you can. Rest assured we are

here to be your friends, point you toward information and to support

you along the way.

If you are looking for some info on those that have had the " half-

way " surgery you can search under " edie " and I think most of the

post will come up from her and her experience delaying revision by

having the partial laminectomy and decompression surgery and follow

up PT. I think most of those discussions took place last fall. She

is still getting along, and is happy with her decision but says she

knows full revision is still in the future.

Myself, I am very happy with my revision surgery and results, which

included a/p staged surgery..two cages, BMP, fusion to sarcrum

complete with osteotomy at L3. I no longer have pain and am fairly

to very active...although I do like to take little " breaks " through

the day....I like to just lay flat for about 10 mins every 4-5 hours

just to let the muscles in my back relax. Of course this is a

preference, not a requirement...but still. I had my surgery in

February of 2005 and as I was told the recovery period was 18

months...I am not surprised any longer when I still find that I am

making progress. For instance, today, for the first time since

surgery I was able to apply my own toe nail polish.....HUGE!

So...everyones milage seems to vary ....but work your way through

your questions and I am sure you will make a good decision.

I am off on vacation tomorrow but will hopefully have a little

computer time along the way. Nice meeting you.

Take Care, Cam

[Guest guest]

Hi Evie,

I just wanted to say hello and welcome. I can't offer alot of

info about the surgery for flatback, as I am in the same boat as

you right now. I have my first appointment with Dr. Hu at UCSF in

Ca. in a little more than 2 weeks and am more than anxious to hear

what she has to say.

You will receive alot of information, insight, compassion and more

often than not, a good chuckle from all these wonderful people in

this forum..

WELCOME!

>

> Hi All, I'm brand new to these forums AND have just found out about

my

> own flatback and the recommended surgery to correct it. I am going

> through all the stages of emotions and am just out of the " freaked "

> stage and am in the middle of " Pi**ed " . I won't go into that bit

> because it's pointless.

>

> So I'd like to start out with broad questions if I could. I noticed

> that awhile back, cammaltby, in reference to her pre-surgery prep,

> posted " ... we went over my 5 pages of questions for at least an

hour.

> (I will try to get those up in the files section soon). " Cammaltby,

I

> would be grateful to be able to see this file and use it as a

> guideline for my follow-up visits and second opinions.

>

> IN Addition, it would be very helpful, comforting, discomforting

> perhaps to hear from others who:

>

> 1) opted NOT to have the correctional surgery (or are delaying the

> surgery) - - why NOT to do it, pain soultions or delaying

strategies ...

>

> 2) have had the surgery where they cut a notch of the spine and bolt

> it all back together - - how long ago did you do this? long term

> fallouts? Still in pain? worse off? does it feel like a patchwork

that

> created another problem?

>

> 3) anyone have doubts/misgivings/regrets about this (to me, anyway)

> drastic solution?

>

> I also realize after all these questions, I'm asking an audience

> whether they made a bad choice and for a lot of reasons, people will

> tend toward the positive, HOWEVER, as I said, I'm Pi**ed. and I

> suppose I want to know what the downsides and risks are. Yeah, I got

> the stats and numbers from the websites, but I want to know from you

> guys who can give me the honest skinny.

>

> I'm getting a CT-Myelogram this week and am freaked about that as it

> is. As a whole, I'm scared, mad and (did I mention " freaked " ?) about

> this new stage of my health finance and family plans picture. bitter

> bitter pill, but I need to swallow it bit by bit, washed down with a

> lot of ginger ale.

>

> thanks all, Evie.

>

[Guest guest]

Evie,

Welcome to a rare spot in the universe where you can express stuff

that's floating around in your head (about your spine and how it

seems to alter all the plans you've made - and scream really loud

sometimes) and people will actually nod in agreement/understanding as

they read. It's been about 14 months since I found several of these

amazing people and will be forever grateful to all of those who

answered my questions, tolerated my debate, and asked me the right

questions so that I could make the best decisions possible for me.

I had revision surgery in December and January (ant/posterior, BMP,

two new rods, several screws, and two cages - my x-rays can be viewed

n the files section) and am doing exceedingly well. I work full-time

(desk job that allows me to get up and go places often) and walk

several miles a week. I still test my limits (that's my personality),

but when I listen to my body, all is well. My biggest complaint at

present is that my upper body strength is still quite low (extremely

low compared to pre-revision) and I have pain/stinging in my neck and

shoulder blades when I try to lift or pull something; anything that

causes a slight strain. I suspect I'm still healing, but this has

been the slowest area to recover and I wasn't expecting. Is this

enough to make me wish I hadn't gone through with surgery. ABSOLUTELY

NOT! I wouldn't live with my former pain for a billion dollars. I'm

not even joking.

I don't think there is a person that posts or even reads here that

hasn't been frightened, angry, excited about what could be, and

completely overwhelmed at some point in time (often experiencing many

of these emotions simultaneously!). I hope you will allow yourself to

experience the full spectrum until you decide what it best for you.

If there is anything I can do to help along the way, please let me

know!

kam

[Guest guest]

---

WOW, applying your own polish! That is amazing! I look froward to

that day..as simple as it sounds. I tried to put on a toe ring to

wear with my sandals but was unable to do it....noone was home to

assist so I had to go with out..I am sure I was such a sight trying

to put it on.....laying on the bed, trying to get my ankle up far

enough to reach my toe....wasn't happening. ,PA

In , " cammaltby " <cammaltby@...>

wrote:

>

> Evie,

>

> Hi and welcome! As you spend time going back through the site I

know

> you will find out that we were all just as shocked at ticked off as

> you when we learned that the " fix " from our childhood has come back

> to haunt. It stinks.

>

> I had read a book, " Death and Dying " , by beth Kubler-Ross,

> many years ago after a family member had passed. I realized as I

was

> going through my own initial reactions to finding out I had

flatback

> that the stages of coming to an understanding with a beloved

persons

> death seemed almost exactly the same to me as getting my head

around

> this monster: denial, anger, bargaining, depression, acceptance.

>

> I have never spoken with a therapist about this, so I am just

> guessing, but perhaps it is a normal way we humans come to terms

> with " bad news " . So, please dont feel you have to shy away from the

> angry part. It helps to acknowledge it. Even as I was working my

way

> to a decision about surgery I would find myself crying about how

> unfair it all was at the oddest times.

>

> If you are reading from the actual site you will have tons of

> reading off the pull down menu on the left hand side. You are

> welcome to use anything you find to form you own questions for the

> doctors that you will, no doubt, be interviewing.

>

> If there is one piece of advice I can give you at this stage it is

> to not get too hurried at this point. Flatback itself is generally

> no emergency. Surgery can be delayed and if you decide to go ahead

> it can be at the time and place of your choosing. It is huge surgery

> (ies) and you will want to be sure you have found the best

> surgeon/hospital for you and your situation. Timing, insurance,

> family issues will all play a part in deciding how you can go

> from " point a " to " point b " as best you can. Rest assured we are

> here to be your friends, point you toward information and to

support

> you along the way.

>

> If you are looking for some info on those that have had the " half-

> way " surgery you can search under " edie " and I think most of the

> post will come up from her and her experience delaying revision by

> having the partial laminectomy and decompression surgery and follow

> up PT. I think most of those discussions took place last fall. She

> is still getting along, and is happy with her decision but says she

> knows full revision is still in the future.

>

> Myself, I am very happy with my revision surgery and results, which

> included a/p staged surgery..two cages, BMP, fusion to sarcrum

> complete with osteotomy at L3. I no longer have pain and am fairly

> to very active...although I do like to take little " breaks " through

> the day....I like to just lay flat for about 10 mins every 4-5

hours

> just to let the muscles in my back relax. Of course this is a

> preference, not a requirement...but still. I had my surgery in

> February of 2005 and as I was told the recovery period was 18

> months...I am not surprised any longer when I still find that I am

> making progress. For instance, today, for the first time since

> surgery I was able to apply my own toe nail polish.....HUGE!

>

> So...everyones milage seems to vary ....but work your way through

> your questions and I am sure you will make a good decision.

>

> I am off on vacation tomorrow but will hopefully have a little

> computer time along the way. Nice meeting you.

>

> Take Care, Cam

>

[Guest guest]

Dear Evie,

Welcome to the group, you'll find a nice group of guys( yup we have a couple) and gals who are in various stages of dealing with Flatback. I'm sorry you are going through this, and yes it sucks, hard to have this come back to bite us in the butt all these years later. I went through all the emotions you are talking about! I'm three years and a half years out from my last revision and doing quite well. As Cam says there are stages of grief you go through with this, but let me give you some hope that you can come through this both mentally and physically. It's a tough row to hoe, but doable. When standing at the beginning of this mess it seems so huge to deal with, but as you bite off each stage, finding your doc, all the tests, getting a surgical plan, surgery, recovery, you will find you have friends here to support you every step along the way. This is why I stay with the group all these years out, to let you guys know that are just at the beginning, that while this will be one of the biggest life changing things you'll go through, you don't have to do it alone.

When I got to my doc, Dr. Anant Kumar in Denver and finally got my diagnosis, after seeing more than twenty doc's through about 15 years of knowing something was wrong, I wanted this fixed yesterday, my pain was so bad. I was very limited in my ability to walk, and stand. Since I was only 40, and had grammar school age kids, my doc and I made the decision to put off full blown revision till I absolutely needed it, and opted for Decompression/Lami/Harrington rod Hardware removal. I always knew that revision was down the road for me, but given my family situation at the time, that I didn't want to give up my ability to bend just yet, and I was a little freaked out by the " Big" surgery I opted for the decompression to hopefully buy me some years till I "Had" to have a full on revision. This surgery gave me a year till revision was necessary, not as long as I had hoped, but did give me time to have my family ready, and for me to get my brain wrapped around the big surgery. Edie and I are I think the only two that have gone this route in the group, she is still after a year doing well, and managing her pain well through exercise and med's. Decompression is a stop gap measure, gives you maybe some time, but should never be looked at as the complete fix for Flatback. Please read my story in the files section under stories, I'm from Colorado, it gives a full rundown of my surgeries.

I as I said am three years out from my revisions, and painfree. I walk as much as I'd like, can stand for hours like I did just last week at the DMV. I am thankful each day to have gotten back the ability to live a full life. I'm thankful to my surgeons, Dr. Anant Kumar, and Dr. O'Brien for their skills. My only regret is that I wasn't diagnosised earlier, that I had to go all those years with a disability that limited my movement and involement in activities my family enjoyed. I feel truly blessed, and lucky, that if I had to have something, at least there was something that could be done about it. I live my life trying to look at hardships in life as lessons, and Flatback has been a great lesson for me. Now being part of this group and helping others who are going through this, gives me a opportunity to take something that was a huge obstacle to go through and turn it into a way to give back and help.

Drawbacks to this big surgery, yeah, there are a few. First the recovery takes a few months till you feel like yourself. I have numbness over a great deal of my back, the top of my butt, and the top side of my left thigh. I can't bend, can lean forward a few inches, but I don't like how it feel so I don't push beyond that. Not being able to bend brings challenges, I use a grabber for things on the floor, and getting laundry out of the dryer. I use a sock aid to put on socks. Shoes are mostly slip on, or tied then I slip them on. Nylons I have to get help with, as with sandles. Shaving my legs a huge challenge, I do it with a razor taped to a paint stick, and not as often as I would like. What I got from surgery is far better than what I lost!!! Being painfree, and upright, and level, is the best gift I was ever given, and while the drawbacks suck, they all can be gotten around with tools.

I had a myleogram and for me it was quite painful from the positioning. I have never been able to lay on my stomach, very painful. So if this is a problem for you, let the person giving you the test know, because you can be on your stomach for quite awhile and you might need pre-meds to handle it. Some of us fly through this test, but for me it was not fun, so not trying to scare you, but inform you so if being on your stomach is a problem for you , you can avoid the pain I went through.

Once again welcome, ask away, we are here to help!

Seattle is so pretty, We moved to the Denver area six years ago from Ashland, Oregon, and we miss it dearly. Nothing like the NorthWest!

Colorado Springs

[ ] first flatbacker

Hi All, I'm brand new to these forums AND have just found out about myown flatback and the recommended surgery to correct it. I am goingthrough all the stages of emotions and am just out of the "freaked"stage and am in the middle of "Pi**ed". I won't go into that bitbecause it's pointless.So I'd like to start out with broad questions if I could. I noticedthat awhile back, cammaltby, in reference to her pre-surgery prep,posted "... we went over my 5 pages of questions for at least an hour.(I will try to get those up in the files section soon)." Cammaltby, Iwould be grateful to be able to see this file and use it as aguideline for my follow-up visits and second opinions. IN Addition, it would be very helpful, comforting, discomfortingperhaps to hear from others who: 1) opted NOT to have the correctional surgery (or are delaying thesurgery) - - why NOT to do it, pain soultions or delaying strategies ...2) have had the surgery where they cut a notch of the spine and boltit all back together - - how long ago did you do this? long termfallouts? Still in pain? worse off? does it feel like a patchwork thatcreated another problem?3) anyone have doubts/misgivings/regrets about this (to me, anyway)drastic solution?I also realize after all these questions, I'm asking an audiencewhether they made a bad choice and for a lot of reasons, people willtend toward the positive, HOWEVER, as I said, I'm Pi**ed. and Isuppose I want to know what the downsides and risks are. Yeah, I gotthe stats and numbers from the websites, but I want to know from youguys who can give me the honest skinny.I'm getting a CT-Myelogram this week and am freaked about that as itis. As a whole, I'm scared, mad and (did I mention "freaked"?) aboutthis new stage of my health finance and family plans picture. bitterbitter pill, but I need to swallow it bit by bit, washed down with alot of ginger ale.thanks all, Evie.

[Guest guest]

Evie,

you responded just right. Just hit reply and type and send, unless

you want to post a new subject, then use post on the left side. Good

reading to you. I recently posted my own, post op journal in files,

if you would like to read it.

>

> Dear ,

> Thank you so much for your words and for the invaluable forums. I

have a lot

> of reading to do! There are a lot of views and stories ­ exactly

what I was

> looking for. I think I need a folder for all these printouts.

>

> To answer some of your questions:

> I¹m in Seattle, Harrington rod from 1983(ish, can¹t remember

exactly), I

> don¹t have a revision specialist yet. I¹m getting the CT Myelogram

this week

> and will get more details soon.

>

> Thanks also for sharing your stats. 3 cuts?! I want to cry.

Lastly, please

> let me know if I should have sent this email somewhere else or

another way -

> for example, replying just to redmarmie insteadof the group.

>

> Thanks again for your help. Gotta go read now.

> Evie.

>