Re: HELP! I NEED ADVISE

[Guest guest]

Hello ,

Welcome to the group. I am sorry you are having so many

problems...and that most of them seem to stem from this danged spinal

condition. You have been very unlucky in that you haven't had many

years of pain free living in your life. Sigh.

I really don't know much about Social Security and disability,

although we have several members that have stories very similar to

yours so I hope they will chime in and share their perspective. If

happens to see this she may be very insightful as she actually

works with people helping them file their claims...but knows the

other side's rule etc.

I did spend most of my working life working for a federal agency and

as the union rep...and on this I would give this advice about your

situation: Talk to an attorney who specializes in these kinds of

cases before you contact the government! When you get a letter like

this it may feel like an emergency, that you must respond right

away...but I am guessing if you read the fine print there are ample

time perameters for you to carefully and thoughtfully proceed with

giving them the answers they need without bungling up your future

interactions with them. As it stands right now they do not have the

full picture...but neither do you. You want to paint the picture so

that it illustrates correctly your situation. You may need an

attorny's advice so that you can fill in your picture with the colors

that the SSAdmin undertands. Take your time and do it YOUR way.

I am sorry that you feel that accepting disability is " living off the

system " . I am sure there is not one member here that would judge you

that way...and the fact that you were approved on your first go-

around supports what most have found that have had to persue a

disabilty claim....that they were qualified and entitiled to the

support. Try not to let other peoples uneducated views of the world

interfere with your view of yourself. I know most of us have

experienced the ... " but you look fine " statement at one time or

another and the best retort I have learned from this group to that

one is " And you look smart enough to know that not all disabilities

are visable " . Keep that in your back pocket for the next smart-alec

you run into.

Unsolicited advice: Get yourself a good second opinion on the

condition of your spine. You don't seem to be doing as well as might

be expected after your revision...but I am only a patient, not

doctor. In any event, your situation fused to S-1 with anterior work

previously done would be a daunting prospect for any surgeon. I think

you would need a highly qualified surgeon with a lot of experience

dealing with this kind of proplem. There are a few of them out there,

fortunatly spread across the country. Where exactly do you live now?

Sorry to run on so long.

Take Care, Cam

[Guest guest]

Thank you so much Cam for your quick response. I stayed home today due

to a Nor'easter and that I'm sick and achey. I live in Connecticut.

Supposely the Doctor I go to is one of the best around this area. He

specializes in Revision surgeries like mine. He's not probably as good

as this Dr. Boachie? (isn't he the guy from NY that was on that show

about Surgery saved my life?) Maybe I should go to another Ortho, but

I'm not sure who or where. I have relatives in Texas, near Dallas.

And I thought they had one of the best Dr's around?

I like your advice on the response back to the " not looking disabled "

comment. My usual comment is more on the lines of " you don't look like

an a@!hole " . Sadly enough most of the commments come from my Father

who has similiar issues, except I had surgery and he's afraid too. But

that's another story.

I called a lawyer today and had to leave a message. I also called the

800 number that was on the letter and the lady there was a complete

btch (DOT) So I decided to call the case manager at the local SS site that

I originally went to. He was much nicer and understandable. I told

him my situation and he reffered me to another lady who I had to leave

another message for. (not getting anywhere fast!) I'm going to try to

call the lawyer back in a few minutes to see if they even want to

bother with my case.

I'll keep looking and watching for more advice. Hopefully this

you spoke of will see my posts.

In the meantime I finally got my x'rays from right after my revision

surgery and I posted them in the photo section. The album

is " " . Check them out and let me know what you think. I'm going

to add the back view in a minute. The side view is up now.

Thanks!

[Guest guest]

, let me just welcome you to the group while saying I'm sorry you need to be among us.

I haven't much to add to Cam's reply, except to say that another top revision surgeon to look into is Rand at New England Baptist, Boston. He did my revision, which was complicated by a serious spinal cord problem. (He enlisted the help of a neurosurgeon colleague to address that.) He was also Cam's surgeon, and has helped quite a few members of this group.

Also, if you'd rather go to Texas, there's LaGrone in Amarillo. Being a northeasterner myself I don't know how far that is from Dallas, but Dr. LaGrone is also among the best.

Best of luck, and please keep us updated.

Sharon

PS: Out of curiosity, is that a bone growth stimulator I see implanted next to your spine? I don't think I've seen one in anyone else's x-ray. Mine was something I wore 4 hours per day.

[ ] Re: HELP! I NEED ADVISE

Thank you so much Cam for your quick response. I stayed home today due to a Nor'easter and that I'm sick and achey. I live in Connecticut. Supposely the Doctor I go to is one of the best around this area. He specializes in Revision surgeries like mine. He's not probably as good as this Dr. Boachie? (isn't he the guy from NY that was on that show about Surgery saved my life?) Maybe I should go to another Ortho, but I'm not sure who or where. I have relatives in Texas, near Dallas. And I thought they had one of the best Dr's around?I like your advice on the response back to the "not looking disabled" comment. My usual comment is more on the lines of "you don't look like an a@!hole". Sadly enough most of the commments come from my Father who has similiar issues, except I had surgery and he's afraid too. But that's another story.I called a lawyer today and had to leave a message. I also called the 800 number that was on the letter and the lady there was a complete btch (DOT) So I decided to call the case manager at the local SS site that I originally went to. He was much nicer and understandable. I told him my situation and he reffered me to another lady who I had to leave another message for. (not getting anywhere fast!) I'm going to try to call the lawyer back in a few minutes to see if they even want to bother with my case.I'll keep looking and watching for more advice. Hopefully this you spoke of will see my posts.In the meantime I finally got my x'rays from right after my revision surgery and I posted them in the photo section. The album is "". Check them out and let me know what you think. I'm going to add the back view in a minute. The side view is up now.Thanks!

[Guest guest]

,

Nice photos girl...what a lotta bling.

It looks like you still have all your original implants and the

sucessive surgery was an extension? Do you feel the implants down

around L4? they look prominent.

I hope someone with a little more SSI info will chime in...but at

least you have started the process with an attorney. I hope your

chosen firm comes through.

As Sharon said...I am from the northeast, born and lived in Wilton CT

in my early years. My home is now in Nantucket MA but we are living

abroad this year in Denmark. I did have a successful revision with

DrRand in Boston and got my second opinion from DrBoachie in NYC. At

the point you are at I can't think why you would need to travel out

of the NE or mid-atlantic states in order to consult with a top ortho

who has a LOT of experience with complex revisions. I realize that

each successive surgery can create it's own problems, and I am not

advocating surgery one way or the other...but since your current

ortho seems to have gotten you as far as he thinks he can go, and

your function seems to be less than you would hope...I would think

you might benefit from hearing from other sources that you are at the

end of the road before accepting that as a final answer.

The top docs are not looking for work. They will tell you what they

think....for good or ill. They will not take you on unless they

honestly believe they can help. So, if possible once you get this

other stuff beat back....consider that you may still benefit from

seeing someone new.

Let us know what you hear back from the lawyer.

Take Care,

Cam

[Guest guest]

The lawyer I spoke to today said that there's not much he could do.

He said he only works with people trying to get SSI. He suggested to

wait and hear what the lady at my local branch says. I called there

today and told them the situation. I spoke to my original case rep,

who is very helpful. I told the lawyer my situation and said I could

do a few things. Pay back the money....not going to happen. Dont'

have it, my mortgage company has that! Tell them I'll pay them back

in payments. Or fight it telling them when I was in for my review in

2006 I told the lady everything I was doing and nothing was asked

about how much I was making. The case reviewer knew I was trying to

work. So I was under the understanding that I was still disabled and

that I would go up for review again in a few years. No one told me I

had to bring my pay check stubs to the office. So now I have to wait

until tomorrow and speak to another person. (The original case

manager refered me to her and I had to leave a message.) So I'm

feeling that I'm pretty much screwed.

I sure do have a lot of bling! I've had a couple things removed. I

have them all in a baggie in my room!) The battery is out and the

right side of my lower fusion, L4 - S1, is out. The screws you speak

of was rubbing up against a muscle and I could feel it when I touched

my back. I can still feel the other screws on the other side.

I'm convinced I'll be having my neck fused next. I have major muscle

spasms all the time. I take valium but that just makes me sleepy.

My foot doctor gave me Celebrex which I thought was helping until the

other day when I was so achey I wanted to cry. Sometimes I just want

to give up. I'm damned if I do and damned if I don't. I tend to

push myself to the limit and then I pay for it.

So who do you suggest that I go see? There's not many doctors that I

know of.

I'm trying to remember if I answered all your questions. If not I'll

respond to you in the next one!

[Guest guest]

Sharon,

That is a bone stimulator you see in that picture. That xray was

taken post op after my revision surgery in 2005. They have taken

that out and the right side of my lower fusion, L4-S1. The screws

were pertruding and starting to back out of the bone.

Like you I also had a Neoru-surgeon in the operating room. Dr. Yugi,

I think his name was. I never met him. He's from Yale New Haven and

is suppose to be a top-notch doctor. I guess Dr. Kime needed him

there for the more complex part of the surgery. I'm not quite sure.

I asked them to tape it so I could watch it later, but my doctor said

I really didn't want to watch it. (yeah I would, I love that that

stuff!)

I'd much rather go see someone in Boston than Texas, only because I

don't have the money. My parents did bring me to Boston Children's

Hospital for a 2nd opinion back before my first surgeries. Not sure

who it was though.

Well if I get through all this SSI stuff then I'll make some more

appointments with maybe the doctor in Boston.

Thanks for all the support.

>

> , let me just welcome you to the group while saying I'm sorry

you need to be among us.

>

> I haven't much to add to Cam's reply, except to say that another

top revision surgeon to look into is Rand at New England

Baptist, Boston. He did my revision, which was complicated by a

serious spinal cord problem. (He enlisted the help of a neurosurgeon

colleague to address that.) He was also Cam's surgeon, and has

helped quite a few members of this group.

>

> Also, if you'd rather go to Texas, there's LaGrone in

Amarillo. Being a northeasterner myself I don't know how far that is

from Dallas, but Dr. LaGrone is also among the best.

>

> Best of luck, and please keep us updated.

>

> Sharon

>

> PS: Out of curiosity, is that a bone growth stimulator I see

implanted next to your spine? I don't think I've seen one in anyone

else's x-ray. Mine was something I wore 4 hours per day.

>

>

> [ ] Re: HELP! I NEED ADVISE

>

>

> Thank you so much Cam for your quick response. I stayed home

today due

> to a Nor'easter and that I'm sick and achey. I live in

Connecticut.

> Supposely the Doctor I go to is one of the best around this area.

He

> specializes in Revision surgeries like mine. He's not probably as

good

> as this Dr. Boachie? (isn't he the guy from NY that was on that

show

> about Surgery saved my life?) Maybe I should go to another Ortho,

but

> I'm not sure who or where. I have relatives in Texas, near

Dallas.

> And I thought they had one of the best Dr's around?

>

> I like your advice on the response back to the " not looking

disabled "

> comment. My usual comment is more on the lines of " you don't look

like

> an a@!hole " . Sadly enough most of the commments come from my

Father

> who has similiar issues, except I had surgery and he's afraid

too. But

> that's another story.

>

> I called a lawyer today and had to leave a message. I also called

the

> 800 number that was on the letter and the lady there was a

complete

> btch (DOT) So I decided to call the case manager at the local SS site

that

> I originally went to. He was much nicer and understandable. I

told

> him my situation and he reffered me to another lady who I had to

leave

> another message for. (not getting anywhere fast!) I'm going to

try to

> call the lawyer back in a few minutes to see if they even want to

> bother with my case.

>

> I'll keep looking and watching for more advice. Hopefully this

> you spoke of will see my posts.

>

> In the meantime I finally got my x'rays from right after my

revision

> surgery and I posted them in the photo section. The album

> is " " . Check them out and let me know what you think. I'm

going

> to add the back view in a minute. The side view is up now.

>

> Thanks!

>

[Guest guest]

Hi Angie,

First of all, don't worry about going to jail. That is not going to happen. Social Security must hire the dumbest people possible. My son is bi-polar and gets SSD to supplement his income from working, like what it sounds like what you are getting. They claim they over-paid him $16,000.00 over a 4 year period. This is the third time it has happened to him. The first two he was able to get appealed and he didn't have to pay any of it back. But that was a much smaller amount. He appealed this one too, but it was turned down, so now because he is low income, he can only pays back $20.00 per month. They did the same thing to his wife and she is paying $20.00 a month on $6000.00. As long as he makes his payment, everything is fine with them, BUT he gets tons of letters and one will contradict the other in the same day. Each month he gets a letter saying what next months check will be for and it is never figured right. At first he tried to get an attorney, but when he heard what they charged and couldn't guarantee they could fix it, he decided to go it alone. My husband and I take care of his taxes with the IRS and we have power of attorney, but Social Security won't allow us to talk to them or try to help him. We can attend meetings, but we can't say anything or ask any questions. If anyone wonders why the system is so broke, they just need to read the file we keep of their letters. We live in Texas and have a Human Resource office that helps him fill out the appeal and mails it for him. Is there any state or county office you can get help with to make sure you are filing the right forms? You need to appeal it first. His wife is also bi-polar and doesn't work, but she still has to pay it back. So actually my son is paying $40 a month for the both of them. At that rate can you imagine how long it is going to take to pay back $22,000.00. One good thing is, they don't charge interest like the IRS does.

I hope I have been able to help ease your mind a bit. Just remember, you are much smarter than they are, but sad to say, they can be wrong and still be right! Go figure!!!

Pat E. from Texas

[ ] Re: HELP! I NEED ADVISE

Thank you so much Cam for your quick response. I stayed home today due to a Nor'easter and that I'm sick and achey. I live in Connecticut. Supposely the Doctor I go to is one of the best around this area. He specializes in Revision surgeries like mine. He's not probably as good as this Dr. Boachie? (isn't he the guy from NY that was on that show about Surgery saved my life?) Maybe I should go to another Ortho, but I'm not sure who or where. I have relatives in Texas, near Dallas. And I thought they had one of the best Dr's around?I like your advice on the response back to the "not looking disabled" comment. My usual comment is more on the lines of "you don't look like an a@!hole". Sadly enough most of the commments come from my Father who has similiar issues, except I had surgery and he's afraid too. But that's another story.I called a lawyer today and had to leave a message. I also called the 800 number that was on the letter and the lady there was a complete btch (DOT) So I decided to call the case manager at the local SS site that I originally went to. He was much nicer and understandable. I told him my situation and he reffered me to another lady who I had to leave another message for. (not getting anywhere fast!) I'm going to try to call the lawyer back in a few minutes to see if they even want to bother with my case.I'll keep looking and watching for more advice. Hopefully this you spoke of will see my posts.In the meantime I finally got my x'rays from right after my revision surgery and I posted them in the photo section. The album is "". Check them out and let me know what you think. I'm going to add the back view in a minute. The side view is up now.Thanks!

[Guest guest]

First of all I just want to say I love this forum. There is actually

people out there that are kind enough to take the time out of their

hectic life to help another out. I really appreciate it.

PatE that does make me feel a little better. But I still don't want to

pay anything back. (But then again who does!) I'm just nervous and

just not sure which direction to go. If I don't work, I can't afford a

thing, if I do work I still don't make enough and I'm in more pain. I

just can't win.

We were thinking about moving to Texas because the weather is warmer

and the cold kills me in the winter. But our house wouldn't sell for

as much as we owe, so that was out of the question. My sister in law

says you can afford to be poor in Texas!

Thank you for your advise and support and I hope things work out for

your son and his wife also.

[Guest guest]

Hi !

I'm 31 and have been on disability for 3 years (due to multiple

sclerosis though, not my flatback issues). From what I understand

there is a protected " trial work period " that they offer. I do not

know the specific amount of time, but you are allowed to work

fulltime and keep all of your benefits without fear of losing them.

If things don't work out, and you must stop working, then you can

continue your disability pay without having to go thru the rigors of

re-applying. When you returned to work, did you go through the

government's Ticket to Work program? I don't know if that makes a

difference or not with them trying to come after you now. And

definately don't feel like you're milking the system. Social

Security Disability is there for people like us. I think that it's

outstanding that you've shown the initiative to return to work. I

would love to do so, but it would be physically impossible for me to

handle right now with some of the other health issues I have (in fact

I may be having another surgery sometime in the next month or two,

ugh). As far as I know, I have at least two more years before they

review my case, and some people with MS have never had their cases

reviewed, since it is a progressive disease with no cure. And I

don't know how many hours you were working when you returned, but you

are allowed to make (currently, it changes each year) up to

$900/month without jeopardinzing your benefits.

I would like to echo what several others have already mentioned -

please look into getting another opinion on your back from a top

specialist, and get in touch with a lawyer who has experience with

disability issues. Maybe consider contacting your local disability

advocacy center or Center for Independent Living (you can find one by

clicking on your state here at

http://www.ilru.org/html/publications/directory/index.html), to see

if they have any advice or resources for you in your case against

social security.

I wish you the best of luck in this and with your continued spinal

issues. Please keep us updated on how things are working out for

you!

>

> Hi, I'm a 35 year old female from CT. I've had scoliosis since I

was

> about 8 or 9. I was suppose to wear my brace, but fought my

parents,

> so sooner or later my curve got so bad I needed surgery. Had

surgery

> when I was 14 in 1986. Have a double curve, can't remember the

> exacts, but I know one of them was 98 degrees. My doctor at the

time,

> Dr. Banta, said that if I didn't have the surgery I would be in a

> wheelchair by 21 and most likely be dead, from my lungs being

>

[Guest guest]

,

It may be true that you can be poor in Texas, but if I was you, I

would prefer to be poor in Massachusetts where they have provisions

for health care for everyone. I think the state insurance is ground

breaking coverage for everyone. I haven't heard anything that makes

me think Texas is anything but overwhelmed when it comes to meeting

the health needs of it's citizens. I don't know what coverage is

available in CT but my guess is the liberal northeast might actually

be advantagous to you.

As to who I would get a second, and maybe third opinion from....

I would start, as I myself did several years ago, re-reading old

posts and trying to get a feel for who people saw in my general

geographic area and who was having good outcomes. I took those names

and " filtered " it several ways. First off I used the Scoliosis

Research Society's physician locator. To be a member of this society

a surgeon must devote at least 20% of his practice to spinal

deformites. I don't know about you....but if a surgeon didn't want to

be at least that much of a specialist...then I didn't think he/she

was going to get me where I wanted and needed to be. So I would use

their site as one source of information: (www.srs.org) Use

the " physician locator " tab on the left. You will have to agree that

you understand that:

" All SRS members listed have met strict SRS Fellowship requirements

which include that a minimum of 20% of their practice is devoted to

spinal deformities. It does not necessarily indicate that they are

better doctors than those who are not members.

We urge you to ask specific questions regarding training and

experience in the field before seeking treatment from a physician. We

are offering this list to help you in your search for a physician.

Please remember that the final decision on a health care provider and

treatment is yours alone and SRS cannot take any responsibility for

the actions, omissions or performance of these members in the

handling of your case. "

You can do a sort by just typing in a state. (I noted that DrKime is

not a member). You are looking for a listing that indicates the

physician devotes his interest to " adult scoliosis " and " aging spine "

or " degenerating spine " .

I see two specialist in New Haven whos names I haven't ever read

about in conjuction with flatback correction but they might be worth

a look. The SRS fellowship directory lists them as " candidates " so

it is possible that they are newer doctors. As a rule of thumb,

ideally you would like to find yourself a surgeon who has had success

with this very inticate and tricky surgery, and who has patients you

can talk to to verify experience, and who performs this surgery on

average once a month. Personally, I liked the idea that the 2 doctors

I considered had at least 50 under their belt....but you may be

braver than me!

I also used published research as a indicator of interest or

knowledge...although the surgeon I chose, DrRand in Boston, has not

published much....admittedly because he is pretty much a one man show

who practices at a private hosptial unlike a university setting where

doctors do seem to publish more. You can use www.pubmed.gov to search

and read abstracts. It's pretty interesting reading. It's not too

tricky if you start out with words like scoliosis + fixed saggital

deformity you will see many hit's and follow the related abstracts

listed on the side...you will be surprised what you will learn. I

also will direct you to our own site's " links " and " files " where you

can find lots of information. There is a link to 's site where

she compiled a number of links to research. I don't think she has

updated it in a year or so but it will teach you enough to have a

very in depth converstaion with any doctor you get another opinion

from.

Lastly, I checked the doctors out through the state medical/insurance

board just to make sure they were not paying lots of claims and or

under scrutiny. As I said...you don't really get a lot of " do-overs "

in this surgery. Each successive surgery is more challenging because

of scar tissue. Earlier work may make the possiblity of getting a

balanced spine difficult. Way back I remember Kam telling of

DrLagrones opinion that a laminectomy on her without osteotomy and

fusion to S1 proposed by her local ortho was exactly the wrong way to

proceed, and in fact made things worse if/when she would ultimately

need more surgery. So I would try to put your researching efforts

into getting yourself to the best you possibly can.

These are surgeons, in no particular order, that immediatly come to

mind in your immediate area that members here have had revision with

and have written about their experiences:

In Boston:

Dr Rand, New England Baptist Hospital

Dr Glazer, Beth Isreal

In NYC:

Dr. Oheneba Boachie-Adjej, Hospital for Special Surgery

Dr. Errico,NYU Medical Center

Dr Jon Bendo, Hospital for Joint Disease

Use the search feature on this web site to track info down. Sorry, it

is a little tedious but thats how it goes.

Obviously no one here is going to ba able to tell you anything about

your medical condition. None of us are doctors....but we have seen

enough to know that dedicating yourself to finding the very best help

is worth the effort. Each of us has very unique and difficult medical

histories, so you should never assume that your results will match

anothers patient. What you are looking for is a verifiable track

record that feels comfortable to you. There are many surgeons willing

to dig into a back they have no business in because it's a challenge.

No thanks. Learn about you, gather all your past records and

documents, understand the differences in medical terms so you can

converse with a surgeon knowledgably, and ask as many questions

wherever necessary to satisfy your needs.

We will be here along the way.

Take Care, Cam

[Guest guest]

Hi ,

I agree with Cam, but would like to add that you need to find a doctor with at least 15-20 years experience with spinal surgery. My neurosurgeon was young with only 5 years experience and he used me to learn new procedures and totally screwed up my spine. At the time everyone agreed that because he was young he would be up on all the new techniques. It took over 7 years after my surgery for the state to finally take his license and this was with him killing one and maiming 13 others that had reported him. No telling how many didn't report him that are just making it today, like I am. He now is doing spines in West Virginia.

On the Social Security thing, please make an appeal and state you were never told to report your earnings. You just might get it excused. If not, agree to pay them a small amount each month. Don't try or agree to pay them in any large amount because if you do, it will be almost impossible to get them to except a smaller amount if something comes up and you can't continue to pay the larger amount. My son will probably never get his paid off, but so what. The way our government throws our money away, this is just a tiny drop in the bucket. BTW, we make a copy of our sons pay stub and send it along with his $20.00 payment each month. This way they can't say he doesn't report his earnings. Even so, they overpaid he again, but we caught it and they excused it right away. I swear they must hire only the job applicants that have no education and no experience, because the case managers we have talked with can't do simple math, but they like to feel they have the power over you. If you play dumb and pitiful you have a better chance then if you argue with them. Let us know how it goes.

Pat E. Texas

[ ] Re: HELP! I NEED ADVISE

,It may be true that you can be poor in Texas, but if I was you, I would prefer to be poor in Massachusetts where they have provisions for health care for everyone. I think the state insurance is ground breaking coverage for everyone. I haven't heard anything that makes me think Texas is anything but overwhelmed when it comes to meeting the health needs of it's citizens. I don't know what coverage is available in CT but my guess is the liberal northeast might actually be advantagous to you.As to who I would get a second, and maybe third opinion from....I would start, as I myself did several years ago, re-reading old posts and trying to get a feel for who people saw in my general geographic area and who was having good outcomes. I took those names and "filtered" it several ways. First off I used the Scoliosis Research Society's physician locator. To be a member of this society a surgeon must devote at least 20% of his practice to spinal deformites. I don't know about you....but if a surgeon didn't want to be at least that much of a specialist...then I didn't think he/she was going to get me where I wanted and needed to be. So I would use their site as one source of information: (www.srs.org) Use the "physician locator" tab on the left. You will have to agree that you understand that:"All SRS members listed have met strict SRS Fellowship requirements which include that a minimum of 20% of their practice is devoted to spinal deformities. It does not necessarily indicate that they are better doctors than those who are not members. We urge you to ask specific questions regarding training and experience in the field before seeking treatment from a physician. We are offering this list to help you in your search for a physician. Please remember that the final decision on a health care provider and treatment is yours alone and SRS cannot take any responsibility for the actions, omissions or performance of these members in the handling of your case."You can do a sort by just typing in a state. (I noted that DrKime is not a member). You are looking for a listing that indicates the physician devotes his interest to "adult scoliosis" and "aging spine" or "degenerating spine".I see two specialist in New Haven whos names I haven't ever read about in conjuction with flatback correction but they might be worth a look. The SRS fellowship directory lists them as "candidates" so it is possible that they are newer doctors. As a rule of thumb, ideally you would like to find yourself a surgeon who has had success with this very inticate and tricky surgery, and who has patients you can talk to to verify experience, and who performs this surgery on average once a month. Personally, I liked the idea that the 2 doctors I considered had at least 50 under their belt....but you may be braver than me!I also used published research as a indicator of interest or knowledge...although the surgeon I chose, DrRand in Boston, has not published much....admittedly because he is pretty much a one man show who practices at a private hosptial unlike a university setting where doctors do seem to publish more. You can use www.pubmed.gov to search and read abstracts. It's pretty interesting reading. It's not too tricky if you start out with words like scoliosis + fixed saggital deformity you will see many hit's and follow the related abstracts listed on the side...you will be surprised what you will learn. I also will direct you to our own site's "links" and "files" where you can find lots of information. There is a link to 's site where she compiled a number of links to research. I don't think she has updated it in a year or so but it will teach you enough to have a very in depth converstaion with any doctor you get another opinion from.Lastly, I checked the doctors out through the state medical/insurance board just to make sure they were not paying lots of claims and or under scrutiny. As I said...you don't really get a lot of "do-overs" in this surgery. Each successive surgery is more challenging because of scar tissue. Earlier work may make the possiblity of getting a balanced spine difficult. Way back I remember Kam telling of DrLagrones opinion that a laminectomy on her without osteotomy and fusion to S1 proposed by her local ortho was exactly the wrong way to proceed, and in fact made things worse if/when she would ultimately need more surgery. So I would try to put your researching efforts into getting yourself to the best you possibly can. These are surgeons, in no particular order, that immediatly come to mind in your immediate area that members here have had revision with and have written about their experiences:In Boston:Dr Rand, New England Baptist HospitalDr Glazer, Beth IsrealIn NYC:Dr. Oheneba Boachie-Adjej, Hospital for Special SurgeryDr. Errico,NYU Medical CenterDr Jon Bendo, Hospital for Joint DiseaseUse the search feature on this web site to track info down. Sorry, it is a little tedious but thats how it goes.Obviously no one here is going to ba able to tell you anything about your medical condition. None of us are doctors....but we have seen enough to know that dedicating yourself to finding the very best help is worth the effort. Each of us has very unique and difficult medical histories, so you should never assume that your results will match anothers patient. What you are looking for is a verifiable track record that feels comfortable to you. There are many surgeons willing to dig into a back they have no business in because it's a challenge. No thanks. Learn about you, gather all your past records and documents, understand the differences in medical terms so you can converse with a surgeon knowledgably, and ask as many questions wherever necessary to satisfy your needs.We will be here along the way.Take Care, Cam

[Guest guest]

Wow. You put a lot of effort into that email. Thanks. I'll take

everything everyone says and do some research. I appreciate it. I'm

just not sure if there's anymore they can do at this time. But it's

worth a shot. Once this SS scare is over, I'll start looking into

taking a trip to either Boston or NYC, since I live in the middle of

both.

I'll definatley look into the medical articles you suggested. I'm

always looking for answers or someone else that has the same symptoms.

Even though I have not yet found anyone with the same exact problems.

I'll keep everyone posted to what happens.

Thanks a bunch.

[Guest guest]

Thanks so much for your advice . I've gotten so many responses

from such great people who like me have the same situations or some of

the same issues.

I'm sorry to hear that you have MS and might be going in for another

surgery. I hope all goes well.

But let me ask you this. Being so young, like me, do you get

frusterated with people or with yourself? Knowing that we should be

able to do more and be more active, but we can't? I get run down a lot

and try to keep up with everyone, but it's just not possible.

I'm going to wait and see what happens tomorrow when I talk to the SS

office. The lady I needed to talk to wasn't in again. So once I find

out I'll let everyone know.

Thanks again.

[Guest guest]

Wow! That Dr. should be in jail! The guy I go to has a lot of

experience under his belt. I can't remember how many exactly, but I do

trust him. I'm still going to look into going to see another person,

though. Just in case if there's anymore they can do for me.

Again I appreciate everyone's help. This is definatley a great forum

to be a part of.

[Guest guest]

,

You said, " But let me ask you this. Being so young, like me, do you

get frusterated with people or with yourself? Knowing that we should

be able to do more and be more active, but we can't? I get run down

a lot and try to keep up with everyone, but it's just not possible. "

The answer is YES! I started using a quad cane 4 years ago at age

27. Between that and my handicap parking placard, I would get evil

looks from people as I got out of my car, like I was too young to

need them and therefore must be faking something.

Now that I'm in a wheelchair, I don't get those kinds of looks from

people (now I get the annoying " pity " looks, especially if one of my

preschoolers is sitting on my lap).

Using a cane helped quite a bit with the " getting run down a lot "

problem. People tended to give me a bit more personal space when I

used it, and they'd hold doors, save the elevator, and APOLOGIZE if

they bumped into me - things that most people didn't do if I wasn't

using my cane.

Good luck with the social security office today. Like someone else

mentioned, I too have found that coming acrossed as confused (which

isn't all that hard to do sometimes with SS!!) often helped more than

being angry on the phone.

>

> Thanks so much for your advice . I've gotten so many

responses

> from such great people who like me have the same situations or some

of

> the same issues.

>

> I'm sorry to hear that you have MS and might be going in for

another

> surgery. I hope all goes well.

>

> But let me ask you this. Being so young, like me, do you get

> frusterated with people or with yourself? Knowing that we should

be

> able to do more and be more active, but we can't? I get run down a

lot

> and try to keep up with everyone, but it's just not possible.

>

> I'm going to wait and see what happens tomorrow when I talk to the

SS

> office. The lady I needed to talk to wasn't in again. So once I

find

> out I'll let everyone know.

>

> Thanks again.

>