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Re: Dr. Rand - Boston NEBH

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Hi Pat,

Oh your dates are coming up soon. I will get them on the calendar so we all

remember to root for you...especially in the " between " days.

I had an almost identical set of surgeries with DrRand and if you go into the

files section of the group I think a lot of my post op and recovery timeline

musings are there.

At the time of my surgeries there was a floor of NEBH that was actually a rehab

center...so I went there between surgeries which was pretty nice. I think you

will have to leave the campus and go down the road a ways....bummer. I had only

a 6 day interval between the surgeries but actually didnt feel all that bad

after the first surgery after the first 48 hours...it was the second set of

surgeries that really knocked me down. I think we all feel like we have been run

over by a truck, maybe even backed up on a few times too, after these surgeries

are done...but usually after about 2 weeks most everyone starts to feel better

and slowly move around a bit better. Still...honestly....the whole recovery

period is long and challenging, each of us slowly getting to new levels of

functioning in our own time. I can only say that I wouldnt make big plans for

the first 3 or 4 months after surgery. After that time you will be able to do

more. Just how much more seems to vary widely.

I think most of us wring our hands about the lost motion when fused to the

sacrum...but to be honest...after you are healed and become adapted to your new

self you really wont notice too much. A lot of what you will get back will

depend on how much stretch you have in your hamstrings....but eventually you

will be able to do just about anything you need to.

I was always able to attend to all my physical needs...although some here have

found they needed, often just temporarily, an aid to wipe themselves with. It

will all depend on how long your arms and torso are and the actual amount of

lordosis you get. They will help you with that at the hospital. They are great

at NEBH and will get you what you need so dont be afraid to ask.

Where do you live and what kind of post op living support will you get from

family and friends?

Take Care, Cam

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Pat,

I didn't have my surgery done by Dr. Rand, but he was one of the

surgeons I consulted with prior to making the decision to actually

have the surgery. Dr. Glazer at BIDMC ultimately did my surgery. Dr.

Rand seemed like a great surgeon to me, so I'm sure your surgery will

go well.

Regarding toileting, I used a reaching aid for wiping for a while

after surger, but now no longer need it. It was annoying, but I only

used it for 2-3 weeks at most. How much difficulty you will have will

mostly depend on your body dimensions (e.g., length of torso and

arms), as well as your flexibility in areas other than your back.

You obviously won't be able to bend your back anymore after the

surgery, but working on hip and leg flexibility afterward with PT

should help you regain flexibility in those areas, so they can

somewhat compensate for the lack of flexibility in your back. I

wouldn't be too concerned, as you get used to it after a while.

I can't comment on the recovery between the two stages. Mine was done

in two stages as well, but only 24 hours apart, so there was no chance

for recovery in between for me.

I wish you all the best for your upcoming surgery, and I will be

thinking of you on those dates.

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I had 2 surgeries with Dr. Rand just a bit over 2 years ago. Can't believe how

the time flies. He was able to do both of my surgeries posteriorly and I had 6

or 7 days in between. I will say that I wasn't exactly thrilled with the rehab.

As far as toiletry problems, I still have a difficult time with it when I am out

and have had to change completely how I handle clean up time. Clean up time was

the most difficult adjustment I had to make. I am right handed and have to use

my left hand because the curve (I now have) prevents my right side from reaching

that far. My hamstrings are and have always been exceedingly tight but 2 years

later I can almost get my hands on the floor during yoga. My recovery was

problematic in that I am unable to bend on my knees. May 23rd, I am getting a

new right knee so hopefully that will take care of the bending problem. That

said even though I couldn't use my knees in the beginning I devised a way of

picking things off the floor that my husband called my giraffe pose. If you

ever saw giraffes bend down then you would know what I mean.

2 years later I am still having problems walking and need a can for distance but

I am good for just regular walking around my house. I have zero pain in my

lumbar region, which had been my worst but my thoracic region remains

problematic since surgery. Dr. Rand is a wonderful surgeon and one of the few

docs I have ever met who actually listens to what you say and does not minimize

your symptoms. He pays close attention and doesn't give lip service. I travel

from phila to boston just for him. He's a great doc and I have only good things

to say about him.

Much good luck for your surgeries and have someone bring you some real food

while you are in rehab. They have (in my opinion) the worst food on the planet.

If interested, I still have pictures of the first meal they served me on my

iphone.

Avis

>

> Pat,

>

> I didn't have my surgery done by Dr. Rand, but he was one of the

> surgeons I consulted with prior to making the decision to actually

> have the surgery. Dr. Glazer at BIDMC ultimately did my surgery. Dr.

> Rand seemed like a great surgeon to me, so I'm sure your surgery will

> go well.

>

> Regarding toileting, I used a reaching aid for wiping for a while

> after surger, but now no longer need it. It was annoying, but I only

> used it for 2-3 weeks at most. How much difficulty you will have will

> mostly depend on your body dimensions (e.g., length of torso and

> arms), as well as your flexibility in areas other than your back.

>

> You obviously won't be able to bend your back anymore after the

> surgery, but working on hip and leg flexibility afterward with PT

> should help you regain flexibility in those areas, so they can

> somewhat compensate for the lack of flexibility in your back. I

> wouldn't be too concerned, as you get used to it after a while.

>

> I can't comment on the recovery between the two stages. Mine was done

> in two stages as well, but only 24 hours apart, so there was no chance

> for recovery in between for me.

>

> I wish you all the best for your upcoming surgery, and I will be

> thinking of you on those dates.

>

>

>

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So I must really be an oddball. When I had my original surgery in 1989, I was

no longer able to wipe by reaching it from behind. I had to reach through the

front of my legs to wipe that business. Ever since my revision in 2007, I have

been able to wipe my butt the " right " way (meaning by reaching my arm behind me

to wipe back there) with no problems!

>

> Hello Everyone,

> First let me say I have learned so much from this group, you are all truly

amazing and a wealth of information. I have been lurking here on and off for

about 4 years as my flatback progressed/degenerated to the point where now I

can no longer stand erect, I'm in constant pain, and walking more than a few

feet is agonizing. Like many of you, I had surgery for scoliosis and a

Harrington Rod has been in place since 1974. I had no real problems until about

6 years ago, when my symptoms began, a little bit at a time. I've spent the past

5 years working through the medical doctors, physical therapy, pool therapy,

specialists, and insurance red tape. After consulting with three different ortho

surgeons I have decided Dr. Rand has the most experience and knowledge regarding

the revision surgery I need and am scheduled for a posterior/anterior fusion

starting on May 24th with the posterior portion T10-S1 of the revision, and the

anterior portion of the surgery will be 10-14 days after this. Has anyone had

this two-step surgery with Dr. Rand? Can anyone give me an idea of the recovery

progress both between the two surgeries, and after both surgeries are complete?

Also, he is not removing the Harrington Rod but is rather going to " hook onto

it " and continue the fusion down to S1. I'm very interested/curious as to how

much this will limit my range of motion, as my original fusion with the

Harrington Rod is from T4 to L2 so in effect I'll be fused from T4-S1. One of my

main concerns, and this might sound silly, but will I be able to take care of my

own toileting from beginning to 'end' if you know what I mean? Any response to

my concerns here would be greatly appreciated, especially in regards to those

who have experience with Dr. Rand. I'm at 18 days away from my first surgery and

starting to get a little anxious.

> Thanks so Much - Pat

>

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Pat,

I do not usually reply to these emails there are to many I usually delete them.

I have had three scoliosis surgeries. My Harrignton Rod has since been removed

back in 2006. I had mutiple complications with that surgery and discovered 18

mos. post-op after a CT that the fusion did not take. 2007 I interveiwed and

consulted with three new surgeons because my surgeon for my first and second

sugereies retired, unfortuanately. Living in the Denver area I selected Dr.

Kumar he is fabulous, I would recommend him to anyone who is considering any

such back surgeries. My oldest daughter will need surgery her in the future when

she can take the time off. I am fused from T-2 now all the way down. Yes, it

does limit your movement but I am very active and intend to remain active. It is

normal for you to be anxious, I was with all three of mine. I had all three of

mine in one surgery never went back a week or so later. You should be able to do

all of tioleting habits

on you own with a commonde over your toilet once you get home. You will need

assistance in the beginning in the hospital but at home you should be fine. It

really depends on how independent and active you are now as to how independent

you will be at home.

Good luck with everything I am sure you will do fine,

> From: Grownup <pmartin651@...>

> Subject: [ ] Dr. Rand - Boston NEBH

>

> Date: Sunday, May 8, 2011, 1:03 PM

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> Hello Everyone,

>

> First let me say I have learned so much from this group,

> you are all truly amazing and a wealth of information. I

> have been lurking here on and off for about 4 years as my

> flatback progressed/degenerated to the point where now I

> can no longer stand erect, I'm in constant pain, and

> walking more than a few feet is agonizing. Like many of you,

> I had surgery for scoliosis and a Harrington Rod has been in

> place since 1974. I had no real problems until about 6 years

> ago, when my symptoms began, a little bit at a time.

> I've spent the past 5 years working through the medical

> doctors, physical therapy, pool therapy, specialists, and

> insurance red tape. After consulting with three different

> ortho surgeons I have decided Dr. Rand has the most

> experience and knowledge regarding the revision surgery I

> need and am scheduled for a posterior/anterior fusion

> starting on May 24th with the posterior portion T10-S1 of

> the revision, and the anterior portion of the surgery will

> be 10-14 days after this. Has anyone had this two-step

> surgery with Dr. Rand? Can anyone give me an idea of the

> recovery progress both between the two surgeries, and after

> both surgeries are complete? Also, he is not removing the

> Harrington Rod but is rather going to " hook onto

> it " and continue the fusion down to S1. I'm very

> interested/curious as to how much this will limit my range

> of motion, as my original fusion with the Harrington Rod is

> from T4 to L2 so in effect I'll be fused from T4-S1. One

> of my main concerns, and this might sound silly, but will I

> be able to take care of my own toileting from beginning to

> 'end' if you know what I mean? Any response to my

> concerns here would be greatly appreciated, especially in

> regards to those who have experience with Dr. Rand. I'm

> at 18 days away from my first surgery and starting to get a

> little anxious.

>

> Thanks so Much - Pat

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Guest guest

,When did you have your surgery with Kumar?I'm a Kumar patient too, and just love him too. I had my last revision in 2002, and am holding up really well.

Pat, toileting gets easier with time. Hasn't been suggested by the others, but the wet flushable wipes are a godsend, they are sturdy enough to give you the extra couple of inches of reach, and help getting everything super clean, They are in the toilet paper isle, store brands are usually the best, extra wet.

Colorado SpringsOn Tue, May 10, 2011 at 12:00 PM, nancy escher <sagi_nle@...> wrote:

 

Pat,

I do not usually reply to these emails there are to many I usually delete them. I have had three scoliosis surgeries. My Harrignton Rod has since been removed back in 2006. I had mutiple complications with that surgery and discovered 18 mos. post-op after a CT that the fusion did not take. 2007 I interveiwed and consulted with three new surgeons because my surgeon for my first and second sugereies retired, unfortuanately. Living in the Denver area I selected Dr. Kumar he is fabulous, I would recommend him to anyone who is considering any such back surgeries. My oldest daughter will need surgery her in the future when she can take the time off. I am fused from T-2 now all the way down. Yes, it does limit your movement but I am very active and intend to remain active. It is normal for you to be anxious, I was with all three of mine. I had all three of mine in one surgery never went back a week or so later. You should be able to do all of tioleting habits

on you own with a commonde over your toilet once you get home. You will need assistance in the beginning in the hospital but at home you should be fine. It really depends on how independent and active you are now as to how independent you will be at home.

Good luck with everything I am sure you will do fine,

> From: Grownup <pmartin651@...>

> Subject: [ ] Dr. Rand - Boston NEBH

>

> Date: Sunday, May 8, 2011, 1:03 PM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Hello Everyone,

>

> First let me say I have learned so much from this group,

> you are all truly amazing and a wealth of information. I

> have been lurking here on and off for about 4 years as my

> flatback progressed/degenerated to the point where now I

> can no longer stand erect, I'm in constant pain, and

> walking more than a few feet is agonizing. Like many of you,

> I had surgery for scoliosis and a Harrington Rod has been in

> place since 1974. I had no real problems until about 6 years

> ago, when my symptoms began, a little bit at a time.

> I've spent the past 5 years working through the medical

> doctors, physical therapy, pool therapy, specialists, and

> insurance red tape. After consulting with three different

> ortho surgeons I have decided Dr. Rand has the most

> experience and knowledge regarding the revision surgery I

> need and am scheduled for a posterior/anterior fusion

> starting on May 24th with the posterior portion T10-S1 of

> the revision, and the anterior portion of the surgery will

> be 10-14 days after this. Has anyone had this two-step

> surgery with Dr. Rand? Can anyone give me an idea of the

> recovery progress both between the two surgeries, and after

> both surgeries are complete? Also, he is not removing the

> Harrington Rod but is rather going to " hook onto

> it " and continue the fusion down to S1. I'm very

> interested/curious as to how much this will limit my range

> of motion, as my original fusion with the Harrington Rod is

> from T4 to L2 so in effect I'll be fused from T4-S1. One

> of my main concerns, and this might sound silly, but will I

> be able to take care of my own toileting from beginning to

> 'end' if you know what I mean? Any response to my

> concerns here would be greatly appreciated, especially in

> regards to those who have experience with Dr. Rand. I'm

> at 18 days away from my first surgery and starting to get a

> little anxious.

>

> Thanks so Much - Pat

>

>

>

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Guest guest

Hi ,

Just a fyi, if you go into your profile, you can set it to digest, then you will

get one email a day with the summary of all the conversations. C

>

> > From: Grownup <pmartin651@...>

> > Subject: [ ] Dr. Rand - Boston NEBH

> >

> > Date: Sunday, May 8, 2011, 1:03 PM

> >

> >

> >

> >

> >

> >

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> >

> > Hello Everyone,

> >

> > First let me say I have learned so much from this group,

> > you are all truly amazing and a wealth of information. I

> > have been lurking here on and off for about 4 years as my

> > flatback progressed/degenerated to the point where now I

> > can no longer stand erect, I'm in constant pain, and

> > walking more than a few feet is agonizing. Like many of you,

> > I had surgery for scoliosis and a Harrington Rod has been in

> > place since 1974. I had no real problems until about 6 years

> > ago, when my symptoms began, a little bit at a time.

> > I've spent the past 5 years working through the medical

> > doctors, physical therapy, pool therapy, specialists, and

> > insurance red tape. After consulting with three different

> > ortho surgeons I have decided Dr. Rand has the most

> > experience and knowledge regarding the revision surgery I

> > need and am scheduled for a posterior/anterior fusion

> > starting on May 24th with the posterior portion T10-S1 of

> > the revision, and the anterior portion of the surgery will

> > be 10-14 days after this. Has anyone had this two-step

> > surgery with Dr. Rand? Can anyone give me an idea of the

> > recovery progress both between the two surgeries, and after

> > both surgeries are complete? Also, he is not removing the

> > Harrington Rod but is rather going to " hook onto

> > it " and continue the fusion down to S1. I'm very

> > interested/curious as to how much this will limit my range

> > of motion, as my original fusion with the Harrington Rod is

> > from T4 to L2 so in effect I'll be fused from T4-S1. One

> > of my main concerns, and this might sound silly, but will I

> > be able to take care of my own toileting from beginning to

> > 'end' if you know what I mean? Any response to my

> > concerns here would be greatly appreciated, especially in

> > regards to those who have experience with Dr. Rand. I'm

> > at 18 days away from my first surgery and starting to get a

> > little anxious.

> >

> > Thanks so Much - Pat

> >

> >

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