Re: Dr. Gelb at University of land

[Guest guest]

I haven't heard of him Martha but he sounds great. I haven't really

studied up on revision surgeons from your area because I live just

outside NYC, so I have concentrated my efforts on NYC docs. It is just

more convenient for me transportation wise. I can take a train into NYC

and be there in 20 minutes from where I live. You will find many

specialists in or near the cities. You are in a good area also for having

reliable revision surgeons nearby. I am sure you will find one suitable

to you in your area if that is your preference You will probably hear

from others in the group that can make recommendations to you for

surgeons. It sounds like you are already happy with Dr Gelbs bedside

manner. That counts for a lot. It can sometimes be difficult to find a

surgeon you are comfortable with and one that you can agree with his plan

for surgery too. It sounds like you hit a home run already. I don't know

how many docs you have seen so far but it usually is a good idea to get

opinions from about 3 revision docs just to make sure. I think you are

on the right track already. It's even better if they are on your medical

insurance plan. That of course takes the stress out of the cost of all

this. But you can " bargain " with them, so to speak even if they aren't on

your plan. See how much they are willing to take to do the surgery above

what your plan allows. And then get it in writing before you move ahead

with this. First and foremost is the quality of the surgeon is the most

important factor.

Dr Gelbs plan for your surgery sounds very much like the one that my doc

has planned for me. This plan was the only one that I felt even semi

-comfortable with. That is why I will opt for that particular plan

too. It seemed like the lesser of two evils. But as you will find,

everyone in this Feisty group we all have different preferences. We just

have to find the one that works for us. . You will get a lot of very good

guidance here.

Everyone who is facing this is scared. You have a lot of company here.

We are all facing this in one way or another. Some of us are here for

the first revision and some for their 2nd, 3rd, and unfortunately more

spinal surgeries. But we can all relate to being scared of spinal

surgery. I call it post traumatic stress stemming from our original

scoliosis surgeries. I believe that might have a lot to do with it. Not

to mention this is a very complicated and seriousness of surgery in of

itself. I wish you good luck in your search. You are doing the right

thing in getting as much medical information as possible about Revision

and all that it entails. Take Care. God Bless

Carol-(from NY)

On Mon, 24 Apr 2006 13:43:30 -0000 " marthalsiii " <marthalsiii@...>

writes:

> I saw Dr. Gelb. He seemed really knowledgable about flat-back

> syndrome and said he had done many surgeries for this. In my case,

> he

> said he would fuse the lower back to the upper fusion, leaving the

> Harrington rod in, and stabilize the entire fused spine to the

> sacral

> wings of the pelvis - like a tripod. Does anyone here know of him?

> I

> haven't seen his name in your database. He would do basically two

> surgeries in one - taking 10 hours. He would center my entire spine

>

> over the sacral base and reshape the lumbar curve taking wedges out

> of

> some of the vertebrae. I am very scared because of all the pain I

> remember as a child. I like him - very personable.

> Sincerely,

> Martha Anne

>

>

>

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod

> Malalignment Syndrome. Not medical advice. Group does not control

> ads or endorse any advertised products.

>

[Guest guest]

Hello Martha Anne,

I have lived in the Baltimore MD area all my life &

had my surgery (T5 to L4, Harrington rod) in August of

1983, by Dr. Edmund McDonnell at Children's Hospital

on Greenspring Ave in Baltimore. He is now 90 years

old & out of the loop as he put it. I am NOT having

the extreme problems that everyone else on this list

are having. I do have a decreased quality of life

issues, but also have lupus, heart valve problem,

osteroporosis, etc. ANYWAY, I broke a bone in my foot

a year ago & it won't heal. But in trying to keep non

weight bearing, crutches etc, it really threw me more

off balance than I have been for years, & unable to

get the back pain under control. I gave up on the foot

healing & now am better.

ANYWAY, I went to see Dr. Cohen, a surgeon at

Hopkins Hospital. He only did a few x-rays & said

I NEEDED surgery, fusion into the sacrum, that would

be one long surgery or two short, but still 4-6 hrs if

my heart could take it. I told him I was off balance,

he had me turn to the side & said I & the x-ray showed

that I " LOOKED PRETTY BALANCED " . He made no mention

of revising the old fusion, of which I think is more

in need than the fusion to the sacrum because of

degenerative disc disease. He did say I would need a

CAT scan before surgery. He jumped to surgery as the

ONLY answer so quickly & said NOTHING else will work.

No brace, corset (custom made), exercise, physical

therapy, pool therapy, NOTHING. He left a bad taste in

my mouth. He said his practice does about 200 to 250

revisions a year. I just didn't get a good feeling

about him or the surgery. A friend of mine told me

that I should follow that feeling, because that was

your sixth sense.

I am very interested in what you find out & if you

have surgery, PLEASE let me know, since I am an hour

away & would come & visit.

GOOD LUCK to you & everyone. I am Counting my

blessings, because you ALL have it worse than me. I

feel for you all. I had a neighbor that just had 3

vertebrae fused & said it was HORRIBLE & if he had

know it was going to be so bad, he NEVER would have

done it. WOW!!! His would have been a piece of cake.

His surgery was short, fused to the nature curve of

the spine, morphine pump (no nurses telling you " you

can't get morphine as a prescription " at 3AM when it

has been 6 hours since you had it last & are on on

IV's), no body cast & he didn't have to go through his

at a young age & deal with this all his life. I guess

we are a strong group of people, because we have had

to be. I PRAY FOR YOU ALL ALL THE TIME.

I'll stop rambling.

Lynne Gaither

> Date: Mon, 24 Apr 2006 13:43:30 -0000

> From: " marthalsiii " <marthalsiii@...>

> Subject: Dr. Gelb at Univeristy of land

>

> I saw Dr. Gelb. He seemed really knowledgable about

> flat-back

> syndrome and said he had done many surgeries for

> this. In my case, he

> said he would fuse the lower back to the upper

> fusion, leaving the

> Harrington rod in, and stabilize the entire fused

> spine to the sacral

> wings of the pelvis - like a tripod. Does anyone

> here know of him? I

> haven't seen his name in your database. He would do

> basically two

> surgeries in one - taking 10 hours. He would center

> my entire spine

> over the sacral base and reshape the lumbar curve

> taking wedges out of

> some of the vertebrae. I am very scared because of

> all the pain I

> remember as a child. I like him - very personable.

> Sincerely,

> Martha Anne

__________________________________________________

[Guest guest]

-Thank you so much, Lynn, for the kind words. I think I should get

one more opinion. Dr. La Grone in Texas has been mentioned on this

site and in lots of websites when " googleing " flatback, so I want to

go see him. I read about the lady from NC who flew all the way there

and had the surgery and flew back.

So you never had the fusion to the pelvis? Did other therapy help

you. Dr. Kelb said my fused column is not even in line with the

lower portion of my back. It looked scarey on the xray. Not too

stable. I am just scared and I hurt. Not a good combination.

I will let you know if I go to Kelb, though. He really seems nice.

He is well trained, anyway. His credentials are good and his

physician's assistant said not one of his patients had regretted the

procedure. They all have less (if any) pain afterwards, but so many

on this website have so many procedures and so much pain. In one

way, it seems to good to be true that this total fusion would be good

for life and a pain free life at that.

Lots of love, Martha Anne

-- In , Lynne Gaither

<cordedpetticoats@...> wrote:

>

> Hello Martha Anne,

> I have lived in the Baltimore MD area all my life &

> had my surgery (T5 to L4, Harrington rod) in August of

> 1983, by Dr. Edmund McDonnell at Children's Hospital

> on Greenspring Ave in Baltimore. He is now 90 years

> old & out of the loop as he put it. I am NOT having

> the extreme problems that everyone else on this list

> are having. I do have a decreased quality of life

> issues, but also have lupus, heart valve problem,

> osteroporosis, etc. ANYWAY, I broke a bone in my foot

> a year ago & it won't heal. But in trying to keep non

> weight bearing, crutches etc, it really threw me more

> off balance than I have been for years, & unable to

> get the back pain under control. I gave up on the foot

> healing & now am better.

> ANYWAY, I went to see Dr. Cohen, a surgeon at

> Hopkins Hospital. He only did a few x-rays & said

> I NEEDED surgery, fusion into the sacrum, that would

> be one long surgery or two short, but still 4-6 hrs if

> my heart could take it. I told him I was off balance,

> he had me turn to the side & said I & the x-ray showed

> that I " LOOKED PRETTY BALANCED " . He made no mention

> of revising the old fusion, of which I think is more

> in need than the fusion to the sacrum because of

> degenerative disc disease. He did say I would need a

> CAT scan before surgery. He jumped to surgery as the

> ONLY answer so quickly & said NOTHING else will work.

> No brace, corset (custom made), exercise, physical

> therapy, pool therapy, NOTHING. He left a bad taste in

> my mouth. He said his practice does about 200 to 250

> revisions a year. I just didn't get a good feeling

> about him or the surgery. A friend of mine told me

> that I should follow that feeling, because that was

> your sixth sense.

> I am very interested in what you find out & if you

> have surgery, PLEASE let me know, since I am an hour

> away & would come & visit.

> GOOD LUCK to you & everyone. I am Counting my

> blessings, because you ALL have it worse than me. I

> feel for you all. I had a neighbor that just had 3

> vertebrae fused & said it was HORRIBLE & if he had

> know it was going to be so bad, he NEVER would have

> done it. WOW!!! His would have been a piece of cake.

> His surgery was short, fused to the nature curve of

> the spine, morphine pump (no nurses telling you " you

> can't get morphine as a prescription " at 3AM when it

> has been 6 hours since you had it last & are on on

> IV's), no body cast & he didn't have to go through his

> at a young age & deal with this all his life. I guess

> we are a strong group of people, because we have had

> to be. I PRAY FOR YOU ALL ALL THE TIME.

> I'll stop rambling.

> Lynne Gaither

>

> > Date: Mon, 24 Apr 2006 13:43:30 -0000

> > From: " marthalsiii " <marthalsiii@...>

> > Subject: Dr. Gelb at Univeristy of land

> >

> > I saw Dr. Gelb. He seemed really knowledgable about

> > flat-back

> > syndrome and said he had done many surgeries for

> > this. In my case, he

> > said he would fuse the lower back to the upper

> > fusion, leaving the

> > Harrington rod in, and stabilize the entire fused

> > spine to the sacral

> > wings of the pelvis - like a tripod. Does anyone

> > here know of him? I

> > haven't seen his name in your database. He would do

> > basically two

> > surgeries in one - taking 10 hours. He would center

> > my entire spine

> > over the sacral base and reshape the lumbar curve

> > taking wedges out of

> > some of the vertebrae. I am very scared because of

> > all the pain I

> > remember as a child. I like him - very personable.

> > Sincerely,

> > Martha Anne

>

> __________________________________________________

>