Re: New here and looking for info or advice!

[Guest guest]

Hi and welcome to our little corner of the world.

I think you will find lots of info and support here, and whether you

are diagnosed with flatback or not, makes no difference, our

membership is for folks like you who are living a post-Harrington

life.

You put a lot of information up, but I am not really sure what you

are looking for. As you know, we are all just patients...so anything

we might say...well, its just a guess..so please bear that in mind!

I didn't see anything in your report that shocked me. I have now

learned that the kind of problems you are encountering are not

unusual at all following fusion, and maybe more so with a HR. Some

people get unlucky and it happens earlier and some people live a

lifestyle where the changes in the aging spine with fusion doen't

seem to have as much impact. The bottom line seems to be that the

discs above and below fusion do not do well over time and when they

start to fail, neurological problems can, and do, crop up.

What I have learned and would offer you as advice at this point is

to become as educated about this condition as you can so that when

you are with a doctor you can be sure to ask the right questions

(and follow-up questions) because some of this stuff is pretty dry.

I have also learned that just because a doctor says he can treat you

doesn't necessarily mean its true. There are many fine doctors out

there with orthopedic backgrounds that apparently will tread where

they should not...either telling patients they have to suck it up

and live in pain, or performing a complex surgery that they really

do not have the skills to undertake. Whatever happens going forward,

you are probably not looking at a run of the mill, one level fusion

and/or decompression. That may be the surgery proposed to you, but

you want to find a doctor who has skills and experience in

maintaining your spinal balance.

In your case, if I was going to hazard a guess...you are going to be

asked to consider addressing the cervical issue surgically. I am

thinking that your lumbar area is beginning to show signs of wear

and you may start seeing your problems move downstream. At 40 you

are young and if PT is helping that area of your spine...you may

have gotten an indication that you need to do all you can to

preserve what is left! The usual stuff will probably be

recommended...get your weight down, watch your nutition, use

excellent body mechanics, give up any activities that pound your

spine, and get excellent PT to help strengthen your core muscles.

You don't say who you are consulting or where you live. No matter

what you do, I would recommend at this point that you make sure you

had at least consulted an ortho with experience dealing with lots of

adults who have undergone scoliois surgery years ago and have a

Harrington Rod in their spines. Even if you have, by some miracle,

found you way to the very best doc in the world, you will find that

a great surgeon will encourage you to get another opinion, so you

should not feel funny asking for your records, films and reports if

you go this route. Believe me....the good docs don't need the

work...so they will help you do this. If you have a doctor that

seems to discourage anther opinion, run, don't walk from the office.

I am sure I have gone on too long. Please ask away....lots of us

have experienced the feeling of suddenly finding what was supposed

to be long in the past has become front and center once again when

least expected. It is a bit of a shock.

Take Care, Cam

[Guest guest]

Hi Cam,

Thanks so much for the great advice! I don't know if I posted this,

but originally I started seeing my Ortho doctor that I am now seeing

3 years ago when I was having terrible lower back pain. Like I

believe I said at first he thought I had flatback and after doing

additional xrays determined I did not, but had beginning stages of

herniated and/or degenerated discs below the fusion/rod. He said at

the time it would be best to wait until I could bear the pain no

more and then possibly it would be a fusion 2 to 4 levels below the

fusion I already had. But, he was not ready to just jump to

surgery. He wanted me to have a bone scan and MRI and CT, but I

could not take any more time off of work, so I just did PT and then

felt better and just never went back. Fast forward to today - I

started with the upper back pain like I said and that is what sent

me back to him... I had my family doctor order MRI after seeing him

for the severe pain I was in because I knew once I went back to the

Ortho doctor he would just send me for the same tests and I was just

trying to have everything I needed so I did not have to take any

more unnecessary time off work. But, when I went to the doctor this

time - I had only had an MRI of the Thoracic and Lumbar and my pain

was high so he sent me for the C spine. I live in the metro Detroit

Michigan area and the doctor I am seeing is Dr. Bono and works

directly with his partner Dr. Teck Soo who is a very well known

Neuro Ortho doctor. Dr. Bono has done a training or fellowship with

Dr. Erricho (sp sorry) since I have last seen him. I go back to

follow up with him on my newest C spine MRI on Tuesday of this

week. I have been through breast cancer and having a beautiful baby

girl born with Down syndrome (in 2004) so I am not afraid of the

truth. I am most afraid of the arthritis in my upper back and am

curious if to abutment of the cord is spinal cord compression or if

it means something less severe. I worry about being in a wheel

chair when my daughter is only 1 right now. These are my main

concerns. I just am ready to hear the answers of what is exactly

going on and what is my plan of action!

Thanks again to everyone for the support - I can definitely say that

pain wears on you quickly!

>

> Hi and welcome to our little corner of the world.

>

> I think you will find lots of info and support here, and whether

you

> are diagnosed with flatback or not, makes no difference, our

> membership is for folks like you who are living a post-Harrington

> life.

>

> You put a lot of information up, but I am not really sure what you

> are looking for. As you know, we are all just patients...so

anything

> we might say...well, its just a guess..so please bear that in mind!

>

> I didn't see anything in your report that shocked me. I have now

> learned that the kind of problems you are encountering are not

> unusual at all following fusion, and maybe more so with a HR. Some

> people get unlucky and it happens earlier and some people live a

> lifestyle where the changes in the aging spine with fusion doen't

> seem to have as much impact. The bottom line seems to be that the

> discs above and below fusion do not do well over time and when

they

> start to fail, neurological problems can, and do, crop up.

>

> What I have learned and would offer you as advice at this point is

> to become as educated about this condition as you can so that when

> you are with a doctor you can be sure to ask the right questions

> (and follow-up questions) because some of this stuff is pretty dry.

>

> I have also learned that just because a doctor says he can treat

you

> doesn't necessarily mean its true. There are many fine doctors out

> there with orthopedic backgrounds that apparently will tread where

> they should not...either telling patients they have to suck it up

> and live in pain, or performing a complex surgery that they really

> do not have the skills to undertake. Whatever happens going

forward,

> you are probably not looking at a run of the mill, one level

fusion

> and/or decompression. That may be the surgery proposed to you, but

> you want to find a doctor who has skills and experience in

> maintaining your spinal balance.

>

> In your case, if I was going to hazard a guess...you are going to

be

> asked to consider addressing the cervical issue surgically. I am

> thinking that your lumbar area is beginning to show signs of wear

> and you may start seeing your problems move downstream. At 40 you

> are young and if PT is helping that area of your spine...you may

> have gotten an indication that you need to do all you can to

> preserve what is left! The usual stuff will probably be

> recommended...get your weight down, watch your nutition, use

> excellent body mechanics, give up any activities that pound your

> spine, and get excellent PT to help strengthen your core muscles.

>

> You don't say who you are consulting or where you live. No matter

> what you do, I would recommend at this point that you make sure

you

> had at least consulted an ortho with experience dealing with lots

of

> adults who have undergone scoliois surgery years ago and have a

> Harrington Rod in their spines. Even if you have, by some miracle,

> found you way to the very best doc in the world, you will find

that

> a great surgeon will encourage you to get another opinion, so you

> should not feel funny asking for your records, films and reports

if

> you go this route. Believe me....the good docs don't need the

> work...so they will help you do this. If you have a doctor that

> seems to discourage anther opinion, run, don't walk from the

office.

>

> I am sure I have gone on too long. Please ask away....lots of us

> have experienced the feeling of suddenly finding what was supposed

> to be long in the past has become front and center once again when

> least expected. It is a bit of a shock.

>

> Take Care, Cam

>

[Guest guest]

Hi , Appreciated you sharing what's been going on with you.

Especially with a sweet baby that depends on you, I truly hope things

go well in your future. Wishing you answers that satisfy your

concerns on your visit next Tuesday. Good Luck, Marty

> Hi Cam,

> Thanks so much for the great advice! I don't know if I posted this,

> but originally I started seeing my Ortho doctor that I am now seeing

> 3 years ago when I was having terrible lower back pain...

[Guest guest]

Thanks Marty and everyone here! I will probably be asking more

questions and you guys will get sick of me real quick! lol

Ok - here are some questions I have - I realize that nobody can give

me complete answers, but I still hope to get advice here from those

that have already and are going through it.

I guess my first question - back to my MRI - are my results typical

as to what most of yours said as well?

Is it possible that I could just have surgery for now on my C spine

and what exactly can they do for me regarding the C spine. I know

that arthritis gets worse with time - do most of you have arthritis

in your spine as well - and anything I can do now to slow it down or

help it?

At what point do you decide to do revision surgery and can revision

surgery slow down the process that is already going on in my back?

I understand what narrowing of the neural foraminal canal means -

but, does it just get worse - can it get better and at what point

does it become dangerous? Do the neurological things just progress

as well? And is it when you start having neurological problems that

the doctors start thinking surgery?

Like I said I am seeing Dr. Bono here in MI - he is on Spine Universe

http://www.spineuniverse.com/mdpage.php?doctorID=1635

and his link to his office website:

http://www.michiganspinesurgeons.com/pages/practice.php

I know that nobody can tell me what to do -but, I think from what I

have researched that at the very least I am with a good doctor to

start with. As to if I choose to have a surgery (if needed) by him

is another matter, but he does seem very informed and when I saw him

3 years ago he and his partner Dr. Teck Soo were very knowledgable

about flatback. So, I guess I am wanting to know by what you all

see from their sites - and with all of the knowledge that you all

have - do you agree that I am seeing a good doctor at least to start

with?

And questions - when and why (both your reasons and your doctors

reasons) do you decide to have surgery?

Thanks everyone - hopefully I won't repeat myself too much here!

> > Hi Cam,

> > Thanks so much for the great advice! I don't know if I posted

this,

> > but originally I started seeing my Ortho doctor that I am now

seeing

> > 3 years ago when I was having terrible lower back pain...

>

[Guest guest]

10-15 years ago I had frequent episodes of cervical spine pain. Cortisone helped and eventually it would quiet down. he neurosurgeon I saw offered a surgery, however I was knee deep in my real estate career and how could I possibly take of that much time?!?

The good news is that although my arthritis has progressed (I'm about to have my third back surgery) the neck has been quiet for many years,.

I don't know if this helps; I suppose each person is different...

> > > Hi Cam,> > > Thanks so much for the great advice! I don't know if I posted > this, > > > but originally I started seeing my Ortho doctor that I am now > seeing > > > 3 years ago when I was having terrible lower back pain...> >>

[Guest guest]

---

,

I am a special education teacher and my entire class, of 6, have Down

Syndrome, I bet your baby is beautiful!!!, PA

In , " huckleberrygirl2 "

<lisahuckleberry@...> wrote:

>

> Hi Cam,

>

> Thanks so much for the great advice! I don't know if I posted

this,

> but originally I started seeing my Ortho doctor that I am now

seeing

> 3 years ago when I was having terrible lower back pain. Like I

> believe I said at first he thought I had flatback and after doing

> additional xrays determined I did not, but had beginning stages of

> herniated and/or degenerated discs below the fusion/rod. He said

at

> the time it would be best to wait until I could bear the pain no

> more and then possibly it would be a fusion 2 to 4 levels below the

> fusion I already had. But, he was not ready to just jump to

> surgery. He wanted me to have a bone scan and MRI and CT, but I

> could not take any more time off of work, so I just did PT and then

> felt better and just never went back. Fast forward to today - I

> started with the upper back pain like I said and that is what sent

> me back to him... I had my family doctor order MRI after seeing

him

> for the severe pain I was in because I knew once I went back to the

> Ortho doctor he would just send me for the same tests and I was

just

> trying to have everything I needed so I did not have to take any

> more unnecessary time off work. But, when I went to the doctor

this

> time - I had only had an MRI of the Thoracic and Lumbar and my pain

> was high so he sent me for the C spine. I live in the metro

Detroit

> Michigan area and the doctor I am seeing is Dr. Bono and

works

> directly with his partner Dr. Teck Soo who is a very well known

> Neuro Ortho doctor. Dr. Bono has done a training or fellowship

with

> Dr. Erricho (sp sorry) since I have last seen him. I go back to

> follow up with him on my newest C spine MRI on Tuesday of this

> week. I have been through breast cancer and having a beautiful

baby

> girl born with Down syndrome (in 2004) so I am not afraid of the

> truth. I am most afraid of the arthritis in my upper back and am

> curious if to abutment of the cord is spinal cord compression or if

> it means something less severe. I worry about being in a wheel

> chair when my daughter is only 1 right now. These are my main

> concerns. I just am ready to hear the answers of what is exactly

> going on and what is my plan of action!

>

> Thanks again to everyone for the support - I can definitely say

that

> pain wears on you quickly!

>

>

>

>

> >

> > Hi and welcome to our little corner of the world.

> >

> > I think you will find lots of info and support here, and whether

> you

> > are diagnosed with flatback or not, makes no difference, our

> > membership is for folks like you who are living a post-Harrington

> > life.

> >

> > You put a lot of information up, but I am not really sure what

you

> > are looking for. As you know, we are all just patients...so

> anything

> > we might say...well, its just a guess..so please bear that in

mind!

> >

> > I didn't see anything in your report that shocked me. I have now

> > learned that the kind of problems you are encountering are not

> > unusual at all following fusion, and maybe more so with a HR.

Some

> > people get unlucky and it happens earlier and some people live a

> > lifestyle where the changes in the aging spine with fusion doen't

> > seem to have as much impact. The bottom line seems to be that the

> > discs above and below fusion do not do well over time and when

> they

> > start to fail, neurological problems can, and do, crop up.

> >

> > What I have learned and would offer you as advice at this point

is

> > to become as educated about this condition as you can so that

when

> > you are with a doctor you can be sure to ask the right questions

> > (and follow-up questions) because some of this stuff is pretty

dry.

> >

> > I have also learned that just because a doctor says he can treat

> you

> > doesn't necessarily mean its true. There are many fine doctors

out

> > there with orthopedic backgrounds that apparently will tread

where

> > they should not...either telling patients they have to suck it up

> > and live in pain, or performing a complex surgery that they

really

> > do not have the skills to undertake. Whatever happens going

> forward,

> > you are probably not looking at a run of the mill, one level

> fusion

> > and/or decompression. That may be the surgery proposed to you,

but

> > you want to find a doctor who has skills and experience in

> > maintaining your spinal balance.

> >

> > In your case, if I was going to hazard a guess...you are going to

> be

> > asked to consider addressing the cervical issue surgically. I am

> > thinking that your lumbar area is beginning to show signs of wear

> > and you may start seeing your problems move downstream. At 40 you

> > are young and if PT is helping that area of your spine...you may

> > have gotten an indication that you need to do all you can to

> > preserve what is left! The usual stuff will probably be

> > recommended...get your weight down, watch your nutition, use

> > excellent body mechanics, give up any activities that pound your

> > spine, and get excellent PT to help strengthen your core muscles.

> >

> > You don't say who you are consulting or where you live. No matter

> > what you do, I would recommend at this point that you make sure

> you

> > had at least consulted an ortho with experience dealing with lots

> of

> > adults who have undergone scoliois surgery years ago and have a

> > Harrington Rod in their spines. Even if you have, by some

miracle,

> > found you way to the very best doc in the world, you will find

> that

> > a great surgeon will encourage you to get another opinion, so you

> > should not feel funny asking for your records, films and reports

> if

> > you go this route. Believe me....the good docs don't need the

> > work...so they will help you do this. If you have a doctor that

> > seems to discourage anther opinion, run, don't walk from the

> office.

> >

> > I am sure I have gone on too long. Please ask away....lots of us

> > have experienced the feeling of suddenly finding what was

supposed

> > to be long in the past has become front and center once again

when

> > least expected. It is a bit of a shock.

> >

> > Take Care, Cam

> >

>

[Guest guest]

---

,

I am almost 12 weeks post op from revision surgery by Dr. Rand

in Boston, I live outside Phila. My surgeries were 1/13 and

1/24,2006. I was driven to the surgery due to awful sciatic pain due

to flatback from the good old Harrington Rod put in in 1972 at Boston

CHildren 's hospital , I am 45 now. I did not start having any issues

with my back until last spring, 2005. I had never heard of flatback

until summer 2005. I did not take alot of time to decide. i found

this site, asked about some doctors and then went to see Rand in

Boston. If i did not like him I was going to go to NYC to see one of

the other doctors spoken about on this site. I really liked Rand and

had spoken with Cam, who was a few months post op from him. I left my

Nov. 10th appt with him asking him to set the date for after the

first of the year....here I am almost 12 weeks...who would have

thought!!! THat is how I found my way to surgery for

flatback..,PA

In , " huckleberrygirl2 "

<lisahuckleberry@...> wrote:

>

> Thanks Marty and everyone here! I will probably be asking more

> questions and you guys will get sick of me real quick! lol

>

> Ok - here are some questions I have - I realize that nobody can

give

> me complete answers, but I still hope to get advice here from those

> that have already and are going through it.

>

> I guess my first question - back to my MRI - are my results typical

> as to what most of yours said as well?

>

> Is it possible that I could just have surgery for now on my C spine

> and what exactly can they do for me regarding the C spine. I know

> that arthritis gets worse with time - do most of you have arthritis

> in your spine as well - and anything I can do now to slow it down

or

> help it?

>

> At what point do you decide to do revision surgery and can revision

> surgery slow down the process that is already going on in my back?

>

> I understand what narrowing of the neural foraminal canal means -

> but, does it just get worse - can it get better and at what point

> does it become dangerous? Do the neurological things just progress

> as well? And is it when you start having neurological problems

that

> the doctors start thinking surgery?

>

> Like I said I am seeing Dr. Bono here in MI - he is on Spine

Universe

>

> http://www.spineuniverse.com/mdpage.php?doctorID=1635

>

> and his link to his office website:

>

> http://www.michiganspinesurgeons.com/pages/practice.php

>

> I know that nobody can tell me what to do -but, I think from what I

> have researched that at the very least I am with a good doctor to

> start with. As to if I choose to have a surgery (if needed) by him

> is another matter, but he does seem very informed and when I saw

him

> 3 years ago he and his partner Dr. Teck Soo were very knowledgable

> about flatback. So, I guess I am wanting to know by what you all

> see from their sites - and with all of the knowledge that you all

> have - do you agree that I am seeing a good doctor at least to

start

> with?

>

> And questions - when and why (both your reasons and your doctors

> reasons) do you decide to have surgery?

>

> Thanks everyone - hopefully I won't repeat myself too much here!

>

>

>

>

> > > Hi Cam,

> > > Thanks so much for the great advice! I don't know if I posted

> this,

> > > but originally I started seeing my Ortho doctor that I am now

> seeing

> > > 3 years ago when I was having terrible lower back pain...

> >

>

[Guest guest]

Thanks ! I would love to go back to school and get my degree in

Special Ed -every year I have planned on going back to school and

every year it has been something.... Maybe someday! And yes my

little Lily is the light of my life! She is almost 19 months old

and sometimes way too smart for her and my own good! haha! I can

definitely say I have been through alot prior to Lily and then of

course finding out about Lily (I found out prenatally) though I knew

I was having her no matter what and it did not take long to

adjust... She had alot of complications and is truly a miracle -

doctors thought she might not make it due to developing hydrops when

I was still pregnant with her, but 5 weeks in NICU and she came home

and then last year she had Open Heart surgery to correct her AV

canal - I knew about that before I had her as well though - it was

tough especially doing this as a single parent (I have an 18 yr old

son as well!) but, I wouldn't trade it for the world! She is as

feisty as they come I tell ya, but with all she's been through who

wouldn't be! Anyway's, I will try and post a link to my photobucket

so you can see her - she is a strawberry blonde blue eyed beauty!

Thanks for posting to me about your surgery as well - I have been in

so much pain lately that it is getting tough - I have a desk job and

that is pure torture somedays! My lower back does have pain, but I

think I have been living in pain for so long that I am not as

affected by it. I think you just deal with what I consider to be

normal pain - but, this new stuff is terrible and I cannot go on

forver like this for sure. Plus, I am not getting any younger and I

just could not imagine what it would be like to be out of pain.

I have to run right now, but I will check back later. I live in MI

and don't know if it would be feasible to go to NY to see Dr. Errico

or to see Dr. Rand, I am not sure if I could swing it, but right now

I am not sure how one keeps their health insurance and has this

surgery either....

Anyway's, like I said any info would be great! I just cannot wait

to get to my doctor on Tuesday to see what he has to say.

> > >

> > > Hi and welcome to our little corner of the world.

> > >

> > > I think you will find lots of info and support here, and

whether

> > you

> > > are diagnosed with flatback or not, makes no difference, our

> > > membership is for folks like you who are living a post-

Harrington

> > > life.

> > >

> > > You put a lot of information up, but I am not really sure what

> you

> > > are looking for. As you know, we are all just patients...so

> > anything

> > > we might say...well, its just a guess..so please bear that in

> mind!

> > >

> > > I didn't see anything in your report that shocked me. I have

now

> > > learned that the kind of problems you are encountering are not

> > > unusual at all following fusion, and maybe more so with a HR.

> Some

> > > people get unlucky and it happens earlier and some people live

a

> > > lifestyle where the changes in the aging spine with fusion

doen't

> > > seem to have as much impact. The bottom line seems to be that

the

> > > discs above and below fusion do not do well over time and when

> > they

> > > start to fail, neurological problems can, and do, crop up.

> > >

> > > What I have learned and would offer you as advice at this

point

> is

> > > to become as educated about this condition as you can so that

> when

> > > you are with a doctor you can be sure to ask the right

questions

> > > (and follow-up questions) because some of this stuff is pretty

> dry.

> > >

> > > I have also learned that just because a doctor says he can

treat

> > you

> > > doesn't necessarily mean its true. There are many fine doctors

> out

> > > there with orthopedic backgrounds that apparently will tread

> where

> > > they should not...either telling patients they have to suck it

up

> > > and live in pain, or performing a complex surgery that they

> really

> > > do not have the skills to undertake. Whatever happens going

> > forward,

> > > you are probably not looking at a run of the mill, one level

> > fusion

> > > and/or decompression. That may be the surgery proposed to you,

> but

> > > you want to find a doctor who has skills and experience in

> > > maintaining your spinal balance.

> > >

> > > In your case, if I was going to hazard a guess...you are going

to

> > be

> > > asked to consider addressing the cervical issue surgically. I

am

> > > thinking that your lumbar area is beginning to show signs of

wear

> > > and you may start seeing your problems move downstream. At 40

you

> > > are young and if PT is helping that area of your spine...you

may

> > > have gotten an indication that you need to do all you can to

> > > preserve what is left! The usual stuff will probably be

> > > recommended...get your weight down, watch your nutition, use

> > > excellent body mechanics, give up any activities that pound

your

> > > spine, and get excellent PT to help strengthen your core

muscles.

> > >

> > > You don't say who you are consulting or where you live. No

matter

> > > what you do, I would recommend at this point that you make

sure

> > you

> > > had at least consulted an ortho with experience dealing with

lots

> > of

> > > adults who have undergone scoliois surgery years ago and have

a

> > > Harrington Rod in their spines. Even if you have, by some

> miracle,

> > > found you way to the very best doc in the world, you will find

> > that

> > > a great surgeon will encourage you to get another opinion, so

you

> > > should not feel funny asking for your records, films and

reports

> > if

> > > you go this route. Believe me....the good docs don't need the

> > > work...so they will help you do this. If you have a doctor

that

> > > seems to discourage anther opinion, run, don't walk from the

> > office.

> > >

> > > I am sure I have gone on too long. Please ask away....lots of

us

> > > have experienced the feeling of suddenly finding what was

> supposed

> > > to be long in the past has become front and center once again

> when

> > > least expected. It is a bit of a shock.

> > >

> > > Take Care, Cam

> > >

> >

>

[Guest guest]

,

If I can suggest....take a pen and paper and write all your

questions down and make sure you cover them all with your doctor

next week. You have the right to go over all these questions so try

to find some quiet time (which I know is hard with a little one) and

put pen to paper. Write down everything....your fear of becoming

wheelchairbound, your questions about stenosis...all of it.

I would add to your list a question about how many patients your

doctor has treated with syptoms and with treatment plans similar to

what he is recommending for you. If he proposes surgery, ask if he

will provide you with patients your may contact to talk to about

their experiences with the surgery and outcome. As a guide, I think

the surgeons you hear about on this board are doing 1-2 post

Harrington rod revisions a month and have performed well over 100

such surgeries..I think as most of us are " aging up " it is becomming

a more prevalent problem.

Lastly, like most of us, you sound like you are likely to ignore or

minimize pain, since it has been a way of life for you for much of

your life. Being stoic in the Drs office doesn't serve you or your

children. Be honest about how much pain you are in and talk over the

solutions....both long and short term. One discussion we have had

lately is about getting handicapped placards so that those having

difficulty walking can at least park close and save a few steps. If

it sounds like a temporory (or permanant) solution that might

help...ask your doctor if he or his staff will help you with this.

It seems like most in this group have not had trouble getting one

once they decided it was worth the time to persue.

I hope you have a good appointment next week and will be interested

to hear how it goes.

Good luck, Cam

[Guest guest]

--,

Oh, what a sweet name, Lily!!!I work for a private school that was

started in 1965 by parents who had a Down Syndrome child, Mildred and

PaUl Krentel. It is called the Melmark Home and School, in Berwyn,

PA. I have worked there since 1981. I was fortunate enough to know

the Krentels, Mr.Krentel passed away but Mrs. Krentel is still alive

and on the Board of the school. Mrs. Krentel has written a few books

about her life etc. I believe one of the first books was "

ComeS Home " . I am sure if you look up the last name Krentel on one of

the book sites you can find her books, pretty amazing woman. We have

a Bell Choir that Mrs. Krentel started that is made up of alot of our

Down's Syndrome Kids. It is an amAzing site to see them play those

bells!!!

I recenlty started back to work after the surgeries and a few of my

kids cried when I came back...they thought I had left them and was

not coming back. I was gone since Jan 11th and that was along time

for them!!I am sure you are realizing that Lily will have a full life

and with the fiesty personality, will go far!!I do alot of vocational

training, getting them ready for jobs after they are done with their

schooling. Going to work is like going to a party everyday, they make

it so much fun and make me laugh everyday, I can't imagine life

without them and I am not even their parents!!!I have a 14 year old

daughter and every summer during extended school year for the kids

she comes with me, she has been doing it since she was about 6 years

old, the kids love it, and I feel my daughter has a better

understanding of people with differences due to her exposure at my

school.Please post the pictures of Lily, I would LOVE to see them!!!

Yes, Boston and NYC maybe far for you to travel to see a doctor. I am

sure you can find someone closer to your area. THis flatback thing

really takes you down for the count!! Probably a good thing to get it

squared away. Just my 2 cents, the sooner, the better!!!I just can't

believe that I am looking at 12 weeks post op, it seems like

yesterday I was bugging Cam about every little detail, to my up

coming surgery!! (Cam, your the BEST!!)I must say that I am glad I

did it!! Iam so glad I found this site, I may not have made an

informed decision about a doctor without this site, ask, ask ,

ask....until you get the info you need!!!!, PA

- In , " huckleberrygirl2 "

<lisahuckleberry@...> wrote:

>

> Thanks ! I would love to go back to school and get my degree

in

> Special Ed -every year I have planned on going back to school and

> every year it has been something.... Maybe someday! And yes my

> little Lily is the light of my life! She is almost 19 months old

> and sometimes way too smart for her and my own good! haha! I can

> definitely say I have been through alot prior to Lily and then of

> course finding out about Lily (I found out prenatally) though I

knew

> I was having her no matter what and it did not take long to

> adjust... She had alot of complications and is truly a miracle -

> doctors thought she might not make it due to developing hydrops

when

> I was still pregnant with her, but 5 weeks in NICU and she came

home

> and then last year she had Open Heart surgery to correct her AV

> canal - I knew about that before I had her as well though - it was

> tough especially doing this as a single parent (I have an 18 yr old

> son as well!) but, I wouldn't trade it for the world! She is as

> feisty as they come I tell ya, but with all she's been through who

> wouldn't be! Anyway's, I will try and post a link to my

photobucket

> so you can see her - she is a strawberry blonde blue eyed beauty!

>

> Thanks for posting to me about your surgery as well - I have been

in

> so much pain lately that it is getting tough - I have a desk job

and

> that is pure torture somedays! My lower back does have pain, but I

> think I have been living in pain for so long that I am not as

> affected by it. I think you just deal with what I consider to be

> normal pain - but, this new stuff is terrible and I cannot go on

> forver like this for sure. Plus, I am not getting any younger and

I

> just could not imagine what it would be like to be out of pain.

>

> I have to run right now, but I will check back later. I live in MI

> and don't know if it would be feasible to go to NY to see Dr.

Errico

> or to see Dr. Rand, I am not sure if I could swing it, but right

now

> I am not sure how one keeps their health insurance and has this

> surgery either....

>

> Anyway's, like I said any info would be great! I just cannot wait

> to get to my doctor on Tuesday to see what he has to say.

>

>

>

>

> > > >

> > > > Hi and welcome to our little corner of the world.

> > > >

> > > > I think you will find lots of info and support here, and

> whether

> > > you

> > > > are diagnosed with flatback or not, makes no difference, our

> > > > membership is for folks like you who are living a post-

> Harrington

> > > > life.

> > > >

> > > > You put a lot of information up, but I am not really sure

what

> > you

> > > > are looking for. As you know, we are all just patients...so

> > > anything

> > > > we might say...well, its just a guess..so please bear that in

> > mind!

> > > >

> > > > I didn't see anything in your report that shocked me. I have

> now

> > > > learned that the kind of problems you are encountering are

not

> > > > unusual at all following fusion, and maybe more so with a HR.

> > Some

> > > > people get unlucky and it happens earlier and some people

live

> a

> > > > lifestyle where the changes in the aging spine with fusion

> doen't

> > > > seem to have as much impact. The bottom line seems to be that

> the

> > > > discs above and below fusion do not do well over time and

when

> > > they

> > > > start to fail, neurological problems can, and do, crop up.

> > > >

> > > > What I have learned and would offer you as advice at this

> point

> > is

> > > > to become as educated about this condition as you can so that

> > when

> > > > you are with a doctor you can be sure to ask the right

> questions

> > > > (and follow-up questions) because some of this stuff is

pretty

> > dry.

> > > >

> > > > I have also learned that just because a doctor says he can

> treat

> > > you

> > > > doesn't necessarily mean its true. There are many fine

doctors

> > out

> > > > there with orthopedic backgrounds that apparently will tread

> > where

> > > > they should not...either telling patients they have to suck

it

> up

> > > > and live in pain, or performing a complex surgery that they

> > really

> > > > do not have the skills to undertake. Whatever happens going

> > > forward,

> > > > you are probably not looking at a run of the mill, one level

> > > fusion

> > > > and/or decompression. That may be the surgery proposed to

you,

> > but

> > > > you want to find a doctor who has skills and experience in

> > > > maintaining your spinal balance.

> > > >

> > > > In your case, if I was going to hazard a guess...you are

going

> to

> > > be

> > > > asked to consider addressing the cervical issue surgically. I

> am

> > > > thinking that your lumbar area is beginning to show signs of

> wear

> > > > and you may start seeing your problems move downstream. At 40

> you

> > > > are young and if PT is helping that area of your spine...you

> may

> > > > have gotten an indication that you need to do all you can to

> > > > preserve what is left! The usual stuff will probably be

> > > > recommended...get your weight down, watch your nutition, use

> > > > excellent body mechanics, give up any activities that pound

> your

> > > > spine, and get excellent PT to help strengthen your core

> muscles.

> > > >

> > > > You don't say who you are consulting or where you live. No

> matter

> > > > what you do, I would recommend at this point that you make

> sure

> > > you

> > > > had at least consulted an ortho with experience dealing with

> lots

> > > of

> > > > adults who have undergone scoliois surgery years ago and have

> a

> > > > Harrington Rod in their spines. Even if you have, by some

> > miracle,

> > > > found you way to the very best doc in the world, you will

find

> > > that

> > > > a great surgeon will encourage you to get another opinion, so

> you

> > > > should not feel funny asking for your records, films and

> reports

> > > if

> > > > you go this route. Believe me....the good docs don't need the

> > > > work...so they will help you do this. If you have a doctor

> that

> > > > seems to discourage anther opinion, run, don't walk from the

> > > office.

> > > >

> > > > I am sure I have gone on too long. Please ask away....lots of

> us

> > > > have experienced the feeling of suddenly finding what was

> > supposed

> > > > to be long in the past has become front and center once again

> > when

> > > > least expected. It is a bit of a shock.

> > > >

> > > > Take Care, Cam

> > > >

> > >

> >

>

[Guest guest]

Thanks !!! Here is a link to my photobucket account - I have

pictures of Lily from when she was in my belly up until today - I

have some pics on there from when she was first born and in critical

condition - that is the first time I saw her as they had to do an

emergency C section - they knocked me out really quick and had her

out 5 minutes later - she was really sick, but as you will be able

to see is incredibly healthy besides some leakage in her Mitral

valve - she takes heart meds for this - and we are hoping she will

not have to have any more heart surgery, just too early too tell

right now! Thanks I will post more to you tomorrow!

http://smg.photobucket.com/albums/v442/627/

How are you feeling - are you out of pain and was the surgery as bad

as you thought it would be?

Talk to you soon!

> > > > >

> > > > > Hi and welcome to our little corner of the world.

> > > > >

> > > > > I think you will find lots of info and support here, and

> > whether

> > > > you

> > > > > are diagnosed with flatback or not, makes no difference,

our

> > > > > membership is for folks like you who are living a post-

> > Harrington

> > > > > life.

> > > > >

> > > > > You put a lot of information up, but I am not really sure

> what

> > > you

> > > > > are looking for. As you know, we are all just

patients...so

> > > > anything

> > > > > we might say...well, its just a guess..so please bear that

in

> > > mind!

> > > > >

> > > > > I didn't see anything in your report that shocked me. I

have

> > now

> > > > > learned that the kind of problems you are encountering are

> not

> > > > > unusual at all following fusion, and maybe more so with a

HR.

> > > Some

> > > > > people get unlucky and it happens earlier and some people

> live

> > a

> > > > > lifestyle where the changes in the aging spine with fusion

> > doen't

> > > > > seem to have as much impact. The bottom line seems to be

that

> > the

> > > > > discs above and below fusion do not do well over time and

> when

> > > > they

> > > > > start to fail, neurological problems can, and do, crop up.

> > > > >

> > > > > What I have learned and would offer you as advice at this

> > point

> > > is

> > > > > to become as educated about this condition as you can so

that

> > > when

> > > > > you are with a doctor you can be sure to ask the right

> > questions

> > > > > (and follow-up questions) because some of this stuff is

> pretty

> > > dry.

> > > > >

> > > > > I have also learned that just because a doctor says he can

> > treat

> > > > you

> > > > > doesn't necessarily mean its true. There are many fine

> doctors

> > > out

> > > > > there with orthopedic backgrounds that apparently will

tread

> > > where

> > > > > they should not...either telling patients they have to

suck

> it

> > up

> > > > > and live in pain, or performing a complex surgery that

they

> > > really

> > > > > do not have the skills to undertake. Whatever happens

going

> > > > forward,

> > > > > you are probably not looking at a run of the mill, one

level

> > > > fusion

> > > > > and/or decompression. That may be the surgery proposed to

> you,

> > > but

> > > > > you want to find a doctor who has skills and experience in

> > > > > maintaining your spinal balance.

> > > > >

> > > > > In your case, if I was going to hazard a guess...you are

> going

> > to

> > > > be

> > > > > asked to consider addressing the cervical issue

surgically. I

> > am

> > > > > thinking that your lumbar area is beginning to show signs

of

> > wear

> > > > > and you may start seeing your problems move downstream. At

40

> > you

> > > > > are young and if PT is helping that area of your

spine...you

> > may

> > > > > have gotten an indication that you need to do all you can

to

> > > > > preserve what is left! The usual stuff will probably be

> > > > > recommended...get your weight down, watch your nutition,

use

> > > > > excellent body mechanics, give up any activities that

pound

> > your

> > > > > spine, and get excellent PT to help strengthen your core

> > muscles.

> > > > >

> > > > > You don't say who you are consulting or where you live. No

> > matter

> > > > > what you do, I would recommend at this point that you make

> > sure

> > > > you

> > > > > had at least consulted an ortho with experience dealing

with

> > lots

> > > > of

> > > > > adults who have undergone scoliois surgery years ago and

have

> > a

> > > > > Harrington Rod in their spines. Even if you have, by some

> > > miracle,

> > > > > found you way to the very best doc in the world, you will

> find

> > > > that

> > > > > a great surgeon will encourage you to get another opinion,

so

> > you

> > > > > should not feel funny asking for your records, films and

> > reports

> > > > if

> > > > > you go this route. Believe me....the good docs don't need

the

> > > > > work...so they will help you do this. If you have a doctor

> > that

> > > > > seems to discourage anther opinion, run, don't walk from

the

> > > > office.

> > > > >

> > > > > I am sure I have gone on too long. Please ask away....lots

of

> > us

> > > > > have experienced the feeling of suddenly finding what was

> > > supposed

> > > > > to be long in the past has become front and center once

again

> > > when

> > > > > least expected. It is a bit of a shock.

> > > > >

> > > > > Take Care, Cam

> > > > >

> > > >

> > >

> >

>