Re;

[Guest guest]

Thanks for the good wishes. I will be thinking of you too, and wish

you all the best. Actually my surgery is on the 28th, but I will be

right behind you. I am praying that he gets it all done in one day,

so I don't have to go back in for the 5/2 date. If you are like me the

anxiety is building & I am getting very nervous! I still have so much

on my " to do " list, that I am staying pretty focused on that.

Cam, I had a funny thought. Do you suppose all the men facing

revision have taken your satin pj's idea to heart? It somehow places

funny pictures in my head - know what I mean?

, keep in touch! We can go down the long path together.

Nan

[Guest guest]

Val,

I hope men do take me at my word and buy silkies! I actually ordered

mine on line at intimo.com which primarily sells mens silks....I liked

the style they had for ladies, more of a mens button down...I didn't

know if I was fgoing to be able to lift my arms after surgery very

well. No problem there...just tricky getting feet into pants..

Oh well, its never perfect!

[Guest guest]

--- " cammaltby " wrote: " ... Oh well, its never perfect! " Love it!

Can we get that quote on T-shirts or bumper stickers!! It SO says

what it's like to be a scoliosis survivor! smiles, Marty

>

[Guest guest]

,

I think when it is all said and done your hubby would have to be a

rock not to see what you have been through. Just be sure he is around

when you are up from recovery. You won't look so hot and that ought to

give him an idication of what you have been through. You can always

ask DrGlazer to be the " heavy " before discharge if you think he needs

an extra reminder of how little you are going to be able to do for

awhile!

Cam

[Guest guest]

Llweyn, , Cam, Carol... did I miss anybody?

I am sitting here crying, on the subject of husband's

understanding. Some just don't. When you have had to deal with

scoliosis your whole adult life, you get so good at covering things

up, physically, emotionally, and tolerating the pain... It makes it

real easy for those around you to just not " get it " .

I'd really like to talk about this a whole lot more but think I

should focus on the positive, for 's sake. You know him

best. Please, if you think he will not be capable to wait on you

hand and foot for 4 weeks post-op, get on the phone and call in the

troops! My mother and older sister came to my aid and I am so

grateful for them.

As it turned out, 3 weeks post-op while still mostly on my back in

bed on pain meds, I was on the speaker phone doing divorce mediation

with my husband of 27 years. I know some guys can be incredibly

understanding and considerate, but I think the majority of them are

completely clueless!

Wishing you well, Marty

[Guest guest]

Bonnie, somehow missed adding you to my last post. I so agree with

your comment: " ... That's why this group is so important. We do

understand. "

It is amazing to have people that truely understand what this is all

about. Take care, Marty

[Guest guest]

That does make me sad, Marty. I hope he has some clue how much he has lost!

Sharon

[ ] Re: Re;

> Sharon, Titch... loved your comments on your fellas! When I took my

> then-hubby into doctor to look at all my pre-surgery-decision test

> results, instead of getting the " light turned on " effect, you could

> almost see him reach up over his head and turn the light bulb off!

> LOL! Take care, Marty

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

You know the one test I tho't would make an impression? Is it the MRI

that gives ya a sort of " sliced and diced " frame by frame view of the

body?? Well, does anyone remember seeing how your spine would show up

on one side of the pictures, then fade out, then - oh there it is

again, on the OTHER side of the pic's. Impacted me! -even tho' I knew

I was crooked, just seemed so weird to see that series. hugs, Marty

[Guest guest]

, Great posting! Very touched to hear of that amazing teacher;

seems even more wonderful when someone reaches out and helps your

child, doesn't it. Also, like hearing of your success story, tho'

can't imagine the pain that 3 surgeries in two years must have bro't

on. You are a real trooper! Did you KNOW you would need three

surgeries in the beginning, or did it just turn into that? I am at

the stage where I know I will need a second revision to correct the

flatback, just not ready to start the process; at this moment, I am

without even a local Ortho-doc. My one here in Tucson has retired

and the one in Phoenix - I don't want to return to. Plus now

instead of Aetna, I will have TriCare and Medicare (starting in

May). BUT, again, love hearing that you are happy with your final

UPRIGHT outcome, with what sounds like minimal complications and

pain. TERRIFIC! That's what we all need to focus on! Best wishes,

Marty

>

> Dear ,

>... I know you'll find through this many people who will be there

for you in ways you never would have imagined. When I had my last

surgery, my son Niles was in middle school. He had a teacher, who I

didn't know except for parent teacher conferences, who called

weekly, got Niles a school advocate, someone he could talk to about

his scared feelings about me. This teacher called me for the whole

school year, and became a good friend, and made the whole experience

for Niles so much better by getting him some support emotionally.

This is just one example, and there were many like that.

>

> I am doing well after my surgeries, and I'm three years out from

the last one. I got my ability to live my life back from them, I'm

mobile, level, and best of all painfree. It was a journey, but glad

I went through with it, and I look forward to hearing about your

progress as you go through the journey.

>

>

>

[Guest guest]

Marty, Yee Gads!!! You're almost as old as I am!!! You will love Tricare for Life - they really are super to deal with.

The doctor I';m using for my upcoming surgery does not take Medicare, however Tricare for Life will become the primary insurer, so I'll get most of the doctor's fee back.

My last surgery (last year) I decided I would spring for a private room while in the hospital and had to pay up front - $169. a night - to have it, however Tricare ended up paying for the private room and I was reimbursed by the hospital.

> >> > Dear ,> >... I know you'll find through this many people who will be there > for you in ways you never would have imagined. When I had my last > surgery, my son Niles was in middle school. He had a teacher, who I > didn't know except for parent teacher conferences, who called > weekly, got Niles a school advocate, someone he could talk to about > his scared feelings about me. This teacher called me for the whole > school year, and became a good friend, and made the whole experience > for Niles so much better by getting him some support emotionally. > This is just one example, and there were many like that. > > > > I am doing well after my surgeries, and I'm three years out from > the last one. I got my ability to live my life back from them, I'm > mobile, level, and best of all painfree. It was a journey, but glad > I went through with it, and I look forward to hearing about your > progress as you go through the journey.> > > > > >>

[Guest guest]

,

Once you have your surgery, these people might come out of the woodwork and offer to help and support you. Maybe your sister, or someone else, would be willing to be the coordinator so that you and your family can recover from the surgery. Yes, it's hard on the family, too. You might want to make a list or schedule beforehand for your coordinator to use as a guideline.

Llweyn

-----Original Message-----From: [mailto: ]On Behalf Of Sent: April 7, 2006 1:54 PM Subject: Re: [ ] Re: Re; Dear ,Wow! You have been through lots and lots. I have tried to do everything possible ahead of time.I prepayed bills, stocked up on house supplies and tried to train my son to do as much for himselfas possible. He wakes up, feeds himself and dresses himself every morning now. Yes! My fear is that things won't get done. So, what? I have to learn to let it all go. I am just soused to doing everything. So, I have told everyone to bring food and begged my sister to clean the bathroom, every time she comes, because I know, that will drive me NUTS. The rest, we will just have to take as it comes. He will do his best and I willderive my emotional support wherever I can. I did notice that some relatives and friends that Iwas very close to have already disappeared into the wood work since I announced surgery wasgoing to happen. One I would have said was my very best friend. The loss of her, stopping smoking and thecontemplation of surgery was a bit much at first but I am adjusting to her absence now. I try to forgiveand as you say, accept that she just can't deal with it. Thanks for the advice. I take it your doing wellnow after 3 surgeries?

[Guest guest]

Hey " nyc... " ,

If you mean because I will be getting Medicare next month? Well,

maybe not (smiles). You see, part of my divorce agreement from ex, he

insisted that I file for disability... and if I got it, for every

dollar I got from disability, he could reduce my alimony by $0.50! I

didn't want to " believe " I was disabled and I knew my revision doctor

would not back me up document-wise. But when I didn't apply a year

after divorce, my ex went BACK to court to say I was in CONTEMPT!

So-o-o-o-o, since my Doc was no help, last April I applied for

Disability and THEY assigned me to one of their doctors. I saw her in

May. When I filled out the paperwork, where they show picture of

body, front and back views, and you are supposed mark all areas of

pain, numbness, tingling... It hit me like a brick, ALL the little

marks I was making and I began to cry. I had STILL been denying how

bad off I was and there it all was on that piece of paper. When I saw

the Doc, I told her it wasn't my idea to be there, that I wanted to

believe I could still work. That I had a brain and a belief of better

things ahead for me. But I told her about divorce stipulation, and I

told her how Ortho Doc took " before " pics but never " after " pics of

me. About the fusion failure at S1. How I couldn't do so many things

anymore, especially the job I was trained for, since my fingers were

numb and couldn't hold teeny-tiny screws and tools of Optical

profession. And how, here in sunny Arizona, I would see people 10-20-

30-40 years older than me... just zipping along, while when I caught a

look of myself in the storefront windows, I'd see a reflection of

someone SO much older than I really was. After I left her office, I

stood outside my car in the parking lot and just flat-out BOO-HOO-ed,

big-ol' sobs. A few weeks later, after Fourth of July week-end, I

discovered an auto-deposit had been made to my bank account for a

whole year's worth of Disability (WHOO-WHO, standing ovation!); I just

about passed out! SO-, short story long, this May I have technically

been on Disability for 2 years (retroactive plus one) and THAT

qualifies me for Medicare.

HOWEVER, I do think I MIGHT be the " oldest " fusion patient, at

youngest age, on this site... Can anyone beat 1967 at age 11?

--- " nycbeauaqua " wrote:

> Marty, Yee Gads!!! You're almost as old as I am!!! You will love

> Tricare for Life ...

[Guest guest]

HI Marty,

If my calculations are correct, you are only a year older than me. In summer of 1968 is when the family doctor first noticed my scoliosis and only casually mentioned my scoliosis, though I believe it was developing 2 years earlier after a childhood accident. The next year he referred me to a specialist (after scolding my mother for not taking care of it!) and then surgery in 1973. So I guess you have me beat for being older. I got my disability 2 1/2 years ago because the only way I could work was taking huge amount of pain killers. That was not a life, especially when I had an elderly mother and disabled brother to advocate for, since the rest of the family won't move here to help. I guess my brothers figure it was easier to let "baby sister" handle everything. I may have the family strong, stubborn streak, but I'm not that strong! They are finding that out pretty fast. At least I know enough to get help, as I finally have an appointment to see a surgeon for his evaluation. Getting disability did open a lot of new doors for me, as I am able to manage my life a lot better and have some quality back. Hopefully with the surgery, I'll have more.

When I think back, I've always had a disability. I just never really admitted to it before. Maybe I should have gone into acting because I covered it so well for so many years. Though I have had some long-time friends mentioned that I always had a problem with my back. I guess maybe it does take others for us to finally admit what is really happening. Scoliosis Overcompensation Syndrome, maybe?

Llweyn

-----Original Message-----From: [mailto: ]On Behalf Of Marty T4 to S1Sent: April 8, 2006 11:57 AM Subject: [ ] Re: Re; Hey "nyc...", If you mean because I will be getting Medicare next month? Well, maybe not (smiles). You see, part of my divorce agreement from ex, he insisted that I file for disability... and if I got it, for every dollar I got from disability, he could reduce my alimony by $0.50! I didn't want to "believe" I was disabled and I knew my revision doctor would not back me up document-wise. But when I didn't apply a year after divorce, my ex went BACK to court to say I was in CONTEMPT! So-o-o-o-o, since my Doc was no help, last April I applied for Disability and THEY assigned me to one of their doctors. I saw her in May. When I filled out the paperwork, where they show picture of body, front and back views, and you are supposed mark all areas of pain, numbness, tingling... It hit me like a brick, ALL the little marks I was making and I began to cry. I had STILL been denying how bad off I was and there it all was on that piece of paper. When I saw the Doc, I told her it wasn't my idea to be there, that I wanted to believe I could still work. That I had a brain and a belief of better things ahead for me. But I told her about divorce stipulation, and I told her how Ortho Doc took "before" pics but never "after" pics of me. About the fusion failure at S1. How I couldn't do so many things anymore, especially the job I was trained for, since my fingers were numb and couldn't hold teeny-tiny screws and tools of Optical profession. And how, here in sunny Arizona, I would see people 10-20-30-40 years older than me... just zipping along, while when I caught a look of myself in the storefront windows, I'd see a reflection of someone SO much older than I really was. After I left her office, I stood outside my car in the parking lot and just flat-out BOO-HOO-ed, big-ol' sobs. A few weeks later, after Fourth of July week-end, I discovered an auto-deposit had been made to my bank account for a whole year's worth of Disability (WHOO-WHO, standing ovation!); I just about passed out! SO-, short story long, this May I have technically been on Disability for 2 years (retroactive plus one) and THAT qualifies me for Medicare. HOWEVER, I do think I MIGHT be the "oldest" fusion patient, at youngest age, on this site... Can anyone beat 1967 at age 11?

[Guest guest]

Dear Marty,

I had my Harrington Rod surgery in 1973 at UCSF T-5 to L-3. During my second

revision they went with Stainless Steel because of it's strenght, since my

scoliosis wants to go hard to the right. I had a TLSO brace for all three of

my surgeries with Dr. Kumar. The surgeon who helped on my surgeries, Dr.

O'Brien doesn't require bracing after revision, I guess it's

personal choice of the doc who does the surgery. I don't use a cane now at

all. I used a cane following my decompression, the surgery Edie and I have

in common, it helped me to be able to walk longer distances till I got

revised. I never got a bone growth stimulator either, but it does sound like

a good idea to me.

It's a blessing to be upright, painfree, and to get around without aids, and

to be level, love not having to pull my shoulder up to look normal. I got

way more than I even hoped for! Hope your second revision did the trick,

mine sure did!

[ ] Re: Re;

> , thanks for sharing! So, first surgery with Kumar was not your

> first FUSION, if I am reading correctly. Curious why they took out

> Titanium and replaced with SSteel at secong revision? Better " track

> record " ? ... 'Cos you know, I got 2 Titanium rods with 18 hooks &

> screws in my revision 12/2003, attached to my original fused mass and

> extended down to S1 (with fusion failure at S1,by the way). Not sure

> of the hardware name... I tho't it was MPV or MVP, but that't's a van

> or an athelete, right? LOL!! Was surprised when I read Cam's story

> about TLSO brace... never had one, wonder why not. And some other

> thing she talked about to " stimulate " bone growth electronically.

> Don't know about that either. This is all so enlightening! Think Cam

> said you still use a cane when out and about? I do but was surprised

> you do, if you are fully " upright " now. Balance issues still? Gotta

> go; take care, Marty

>

>

> --- <.Kirkaldie@...> wrote: Dear Marty,

>> My first surgery with Kumar was a decompression, trying to save my

> L5-S1 since I was relatively young(41). That gave me a year to get

> ready for full on front and back revision, which I did a year after

> the decompression. My second revision became necessary because I

> cracked the fusion mass above my revision, my Harrington rod fusion

> mass that Kumar hadn't gone into during my revision. ... They took out

> all my titanium hardware and replaced it with Stainless Steel...

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>