need advice please

[Guest guest]

Felicia, Thanks so much. I just checked and found someone who had the same surgery I will with Dr. Kabaish and she said she couldn’t be more pleased. It’s funny I had checked the site previously and found nothing, though this is a note from 2009. Maybe something about the way I entered with your link got me the note. Who knows? I’m just glad to have gotten it. Thanks again and Good Luck! Kate

From: Felicia Kramer

Sent: Friday, February 04, 2011 8:25 AM

ubject: [ ] Re: Need Advice Please

Kate, the forum I mentioned is the National Scoliosis Foundation forum. There's different categories to post in, and there's one about doctors that others have used. Here's the link: http://www.scoliosis.org/forum/index.php?Good luck.

Felicia Kramer

http://anotherbrightidea.etsy.com

www.feliciakramer.blogspot.com

[Guest guest]

Pamela,

I don't want to be an alarmist, but I had four surgeries with two different

highly respected local surgeons. I'm quite sure that had I sought out Dr. Lenke

or someone with his experience when I started having problems after the first

surgery I would not be looking at my fifth surgery - I would have been fixed

with the second one.

Perhaps others will weigh in on this, but I think I would think twice about

having this serious surgery with a doctor who only does 2-3 per year.

I also don't have pets, so I can't speak from personal experience, but I believe

I read somewhere that you should not walk your dogs post-surgery because of the

chance that there will be a sudden pull or a quick movement required. But - as

I said, I can't speak from experience.

Just some thoughts ....

>

>

> Thanks Felicia. Your Dr Lenke sounds qualified...glad you are in good hands nd

thx for the long response. I think I would rather 2 shorter surgeries than one

long....sounds weird huh? Maybe I'll change my mind. I'm either going with a

local Dr Seybold who does 2-3 per year or I will go into NYC for Dr Bendo which

is a major inconvenience considering I am single and have 2 dogs...a Great Dane

and a Pomeranian. Waiting until spring to make the first appointment and then

schedule the dreaded deed. It's not surgery I fear so much, it is being soooo

vulnerable after.

>

>

> Pamela

>

>

>

>

>

>

> From: feliciakramer4@...

> Date: Fri, 4 Feb 2011 05:55:58 -0800

> Subject: [ ] Re: Need Advice Please

>

>

>

>

>

>

>

> Pamela,

> When I had my evaluation with Dr. Lenke, I was offered two different dates.

The first was a one-day surgery of 10-12 hours, but if it took longer than

expected, they would stop and continue on another day. The other date was a

month sooner and was a two-day surgery with a video tutorial. Since there was a

possibility that the one-day surgery would become two, I just opted for the

earlier two-day surgery. And I teased Dr. Lenke that my reasoning was that he

will have a camera on him so he's not about to screw anything up - no " oops "

allowed. He promised he would be on his best behavior! He said his hospital is

the only one doing tutorials of this type, where the medical personnel watching

are allowed to ask questions during the surgery, and that the osteotomy

procedure is the one they are most interested in seeing.

>

> I have had four fusion surgeries already. I am currently fused from T4 to the

sacrum, with a gap in the hardware from T10 to the lumbar which a previous

surgeon removed and did not replace during my third surgery. (BTW, Dr. Lenke

was adamant that he would NEVER have left that gap, even though I was supposedly

completely fused. I was just as upset when I saw my xrays post-op!) Dr. Lenke

said I have significant kyphosis above my fusion, so he will fuse from T4 to T1.

He will examine my thoracic hardware and may reinforce it if necessary. Then he

will start at T10 and redo my entire lumbar area to the sacrum, with an

osteotomy at L3. Generally speaking, Dr. will remove any previous hardware

during the first day. On the second day he will do the osteotomy and insert the

new hardware. (When I asked what I would be like on the in-between day he said

they might try to get me on my feet for a minute. Yikes!!)

>

> We all have to make the surgery decision for ourselves. I have people close to

me who have known about their various medical issues for many years and chose

not to do anything about them. Now they are at the ages where surgery would be

much more difficult and perhaps not even advisable, and they are suffering with

pain and limited mobility every day of their lives. Personally, I choose to do

whatever is available to me so that I don't end up that way. One of my favorite

quotes is by Jack Kerouac: " I promise I shall never give up and that I'll die

yelling and laughing. " My sentiments exactly!

>

> Sorry for this long post. Hope it helps.

>

>

>

>

> Felicia Kramer

> http://anotherbrightidea.etsy.com

> www.feliciakramer.blogspot.com

>

[Guest guest]

Hi Felicia,

Of course you're worried about the uncertainties. It's what us Type A

personalities do. We try to think of all the possible things that can

happen and work out ways to deal with the uncertainties in advance. I

have a favorite saying: " Fantasy is worse than reality. " Right now,

you have no idea, really, how things will be after surgery but you

plan for every contingency you can think of. After the surgery,

however, you will finally know. You will have your reality and you

will deal with it. It will work out. We've all felt the pre-revision

uncertainly, and we've all managed, somehow, to deal with the reality.

I suggest that for now, take all the practical advice you can find,

like filling your cupboard and freezer with staples. I think the

hardest thing to do when you first come home is to shower and dress

without any help. I found " No Rinse Bathing Wipes " at a medical

supply store and did they come in handy! Some hospitals use them on a

daily basis instead of giving sponge baths.

I'm not saying it will be easy to be home alone at first, but I bet it

will work. You'll see. If, once at home, you find you absolutely must

have help, there are local agencies that can send an aide to you for a

couple of hours a day. Just long enough to help you shower, dress,

and prepare your breakfast and lunch. That's what I did.

Bonnie

[Guest guest]

Pamela,

I think the take away idea you should have from all our input is that it is

possible to manage on your own at home after surgery, but it will require you to

spend some time, energy (and money probably) getting your environment set up so

that it is safe and healthy for your to be alone.

If you have a two floor house, and live alone, why not consider making one of

your first floor rooms into a temporary bedroom? A dining room or living room

would be a fine space with a hospital bed (you can rent from a hospital supply

store). Store the extra furniture in an unused room upstairs.

Is your yard fenced in so that your dogs can take care of themselves without

needing to be walked? If not, that is one thing you can do to prepare. Perhaps a

doggie door could also work?

As to pain meds....gosh...I left the hospital on percocet and tylenol....but I

would not have done without it until well after 8 weeks. I needed it to function

and keep myself comfortable enough to move....a key part of recovery!

You can pre plan most of your dry goods, arrange your house so that literally

everything is within easy reach, freeze lots of good that you normally buy

fresh, cook for yourself and freeze things.

There are some things you will need help with. You almost certainly will not

drive the first month, and probably well into the second....so if that is

something that poses a problem you will have to arrange for cabs. You might want

to investigate what social services might be available for those with

disabilities....temporary or otherwise re: a van or other county transportation.

Just start a little list for yourself of what your daily activities are in order

to get a handle on what exactly you will need to accomplish while you are not

feeling so great. If you have surgery in NYC I recall there is a good rehab

center in Westchester NY that a member transferred to from a NYC hospital...so

if you get 7-10 days in a place like that before you head home you will be a

long way toward managing....after all....they legally cant release you until you

CAN manage what they call the " activites of daily living " .

I echo the sentiment that staying local with a surgeon without excellent

experience in our malady is potentially setting yourself up for serious

disappointment. I would hate to see you do it.

Everyone figures all this out in due course for themselves. Listen to your inner

voice, take your time with your decisions. Try not to make too many compromises.

After all, its your life we are talking about here.

Take Care, Cam

[Guest guest]

Cam,

You've given me a lot to think about. I can do this probably if I can get 7 days in rehab first. I will be in a rental during recovery. All set up for at least 2-3 weeks after I get home. My Great Dane is a dilema I will have to figure out. I can't do opiates and I hope there is an alternative there. I will probably go with the NYC Dr Bendo after seeing the number of revisions some people here are having. I don't have insurance every year so I have one shot this year. Thank you Kathy too for letting me know it's possible. Pamela

From: cammaltby@...Date: Fri, 4 Feb 2011 23:09:24 +0000Subject: [ ] Re: need advice please

Pamela,I think the take away idea you should have from all our input is that it is possible to manage on your own at home after surgery, but it will require you to spend some time, energy (and money probably) getting your environment set up so that it is safe and healthy for your to be alone.If you have a two floor house, and live alone, why not consider making one of your first floor rooms into a temporary bedroom? A dining room or living room would be a fine space with a hospital bed (you can rent from a hospital supply store). Store the extra furniture in an unused room upstairs.Is your yard fenced in so that your dogs can take care of themselves without needing to be walked? If not, that is one thing you can do to prepare. Perhaps a doggie door could also work?As to pain meds....gosh...I left the hospital on percocet and tylenol....but I would not have done without it until well after 8 weeks. I needed it to function and keep myself comfortable enough to move....a key part of recovery!You can pre plan most of your dry goods, arrange your house so that literally everything is within easy reach, freeze lots of good that you normally buy fresh, cook for yourself and freeze things.There are some things you will need help with. You almost certainly will not drive the first month, and probably well into the second....so if that is something that poses a problem you will have to arrange for cabs. You might want to investigate what social services might be available for those with disabilities....temporary or otherwise re: a van or other county transportation.Just start a little list for yourself of what your daily activities are in order to get a handle on what exactly you will need to accomplish while you are not feeling so great. If you have surgery in NYC I recall there is a good rehab center in Westchester NY that a member transferred to from a NYC hospital...so if you get 7-10 days in a place like that before you head home you will be a long way toward managing....after all....they legally cant release you until you CAN manage what they call the "activites of daily living".I echo the sentiment that staying local with a surgeon without excellent experience in our malady is potentially setting yourself up for serious disappointment. I would hate to see you do it.Everyone figures all this out in due course for themselves. Listen to your inner voice, take your time with your decisions. Try not to make too many compromises. After all, its your life we are talking about here.Take Care, Cam

[Guest guest]

Pam,

I am a little confused. Did you actually have a consult with DrBendo already and

set a date with him? Please tell us about that.

I know you can do it...its just a matter of getting everything all set up. There

has to be someone who will take your dog for a month or so....perhaps a rescue

group would be set up with foster dog parents?

Take Care, Cam

[Guest guest]

Pamela, Just one point about drugs. With previous surgeries it seemed my surgeons were more concerned about turning me into a drug addict than the fact that I was in PAIN. I had to practically beg for every little refill. When the time came, I had no trouble weaning off. I have an allergy to codeine and all of its derivatives, so when I questioned Dr. Lenke about this, his reply was reassuring. First, he will likely involve the pain management team to find something that agrees with me. And if I'm in pain I won't move and that's what he wants me to do - move. So he assured me that I will have the drugs for as long as I need them. Felicia Kramerhttp://anotherbrightidea.etsy.comwww.feliciakramer.blogspot.com

[Guest guest]

Hi Felicia,

I'm with you. I can't stand to wait until things get worse. I say

take care of it now, not when I'm more debilitated. Personally, I

can't see how that helps. And why spend more time in pain and with

disability waiting for the surgery, which you know you will have

eventually, when you can do it now and feel better sooner. My motto

is " Never give up. " It has served me very well in all aspects of life.

You are in wonderful hands with Dr. Lenke.

Bonnie

[Guest guest]

No, I'm not taking any hormones. I haven't been to my GYN yet. Will do that on Tuesday morning. I'm not sure if it's menopause making my sex drive skyrocket or something else.

The bridge is a core strengthening move. You lie on your back with knees bent, feet planted firmly on the floor. Then you lift your butt up in the air as high as you can go. I have the screws into my iliacs so there is no way I can do a pelvic tilt or use my hips. I have to put my whole torso into it. And after 12 years of marriage he finally admitted that there are positions he was afraid of because he thought it would hurt my back and it's actually more comfortable now that we've tried it! LOL Maybe that's why the increase in sex drive...there's finally something new!

Peggy

[ ] Re: need advice please

Pamela,Thanks, I was confused because you sort of sounded like you had gotten to the point where you had already seen DrBendo and were deciding between him and your local guy....and also had a tentative date. In truth....sometimes members skip over telling us where they are and it can get a little confusing, so I was just trying to figure out if I had missed something.Back when I was in a quandary about revision I remember feeling like if I actually saw surgeons for opinions and they suggested I was a candidate for it, then I would have to go ahead right away....thus I put making those appointments for awhile. When I finally saw both DrRand and DrBoachie, arguably two surgeons with very good reputations on the east coast, both of them told be that although I was a candidate for surgery, it was not an emergency and I could take all the time I needed to set a date. In fact DrRand, who I saw first, suggested I was not "ready"...and in retrospect I was not mentally in the same place I was 10 months later when I had had a good second opinion and intervening epidural injections that really didnt work. By my second visit with him he didnt hesitate to suggest that I meet with the office scheduler for surgery. So....I guess I am just trying to save your worry that DrBendo is going to rush you into surgery. Very likely you will find that seeing him will just be another step along the way. You may not have to problem solve all the other things going on in your situation as it relates to being set up for surgery. And you'll have plenty of time while waiting for the snow to melt.Take Care, Cam

[Guest guest]

OH honey... I'm trying this one tonight!From: Peggy Greene <jpgunlimited@...>Subject: Re: [ ] Re: need advice please Date: Thursday, February 10, 2011, 6:30 AM

No, I'm not taking any hormones. I haven't been to my GYN yet. Will do that on Tuesday morning. I'm not sure if it's menopause making my sex drive skyrocket or something else.

The bridge is a core strengthening move. You lie on your back with knees bent, feet planted firmly on the floor. Then you lift your butt up in the air as high as you can go. I have the screws into my iliacs so there is no way I can do a pelvic tilt or use my hips. I have to put my whole torso into it. And after 12 years of marriage he finally admitted that there are positions he was afraid of because he thought it would hurt my back and it's actually more comfortable now that we've tried it! LOL Maybe that's why the increase in sex drive...there's finally something new!

Peggy

[ ] Re: need advice please

Pamela,Thanks, I was confused because you sort of sounded like you had gotten to the point where you had already seen DrBendo and were deciding between him and your local guy....and also had a tentative date. In truth....sometimes members skip over telling us where they are and it can get a little confusing, so I was just trying to figure out if I had missed something.Back when I was in a quandary about revision I remember feeling like if I actually saw surgeons for opinions and they suggested I was a candidate for it, then I would have to go ahead right away....thus I put making those appointments for awhile. When I finally saw both DrRand and DrBoachie, arguably two surgeons with very good reputations on the east coast, both of them told be that although I was a candidate for surgery, it was not an emergency and I could take all the time I needed to set a date. In fact DrRand, who I saw first, suggested I was not "ready"...and in retrospect I was not mentally in the same place I was 10 months later when I had had a good second opinion and intervening epidural injections that really didnt work. By my second visit with him he didnt hesitate to suggest that I meet with the office scheduler for surgery. So....I guess I am just trying to save your worry that DrBendo is going to rush you into surgery. Very likely you will find that seeing him will just be another step along the way. You may not have to problem solve all the other things going on in your situation as it relates to being set up for surgery. And you'll have plenty of time while waiting for the snow to melt.Take Care, Cam