Re: refered to Lenke and Bridwell

[Guest guest]

This past week I had an appointment with Dr. Philip Mayer (SE Michigan) who is a member of scoliosis research society and also was one of the surgeons who did my scoliosis surgery 11 years ago. Dr. Mayer looked at me and heard the story of my 11 year post surgical saga of walking problems (he helped with surgery but was not in my HMO at the time, so follow-through was with the other surgeon). He informed me that, although there may be many willing to do the revision surgery I need, there is no one in Michigan who can really do the job. He has refered my to Dr. Lenke in St. Louis. Thanks to you all on this newsgroup, I was already aware of Dr. Lenke. Dr. Mayer's office visit write up (I always have a copies of everything) described me as "an informed consumer."

Thanks for your help in my being so "well informed" !

I checked DR. Lenke's web site and it looks like he would take Medicare and my medigap.

Now I'm hoping you all can help me become more even more well informed regarding St. Louis and what I might expect in terms of visits, surgery, and aftercare with Dr.s Lenke/Bridwell. I just reviewed that lovely lengthy email from SB regarding surgery with Dr. Bridwell. And also another from who had surgery with Dr. Bridwell in April of this year. From these I have a good idea of the follow through expectations. Thanks so much for this helpful information !

Can anyone who has had Dr. Lenke tell me if he has similar follow-through policies and expectations?

I would need to travel from Michigan, and am wondering about :

*the number of visits before surgery...was one trip enough or did you need to go back and forth to St. Louis several times?

*how long in St. Louis post op, and how many visits back have you had to make?

*Dr. Mayer is a colleague of Dr. Lenke on the Scoliosis Research Society, so I am hoping Dr. Mayer could do the follow through from here. Anyone worked that out with these doctors?

The name of the hospital in St. Louis?

I am a single parent with limited support.

My biggest concerns are:

*pulling this off financially... on SSD and unemployed for past 3 years due to back related physical limitations

*What kinds of costs have folks incurred staying in St. Louis post op?

*If they sent me to nursing care (!!!) after surgery what would that be like???

*I experienced a bad time in hospital in first surgery because of understaffing of nurses... I dread having no one there with me to help in the "little things" (and big) when the nurses don't come, or move me inappropriately, and I can't move

*caring for my adopted 9 yo daughter during time in surgery: assuming I find someone to take her in for the time I am in St. Louis, (one month?) what kind of support would I need for how long at home with her? (would I need to have her live away from home for another month or ???) If it is a year at least with no bend and lift.... ARGH laundry, cleaning, picking up the floors, cooking. This is where it begins to seem impossible.

any ideas on any of these questions will be greatly appreciated

:~)

Carol in SE Michigan

"No storm can shake my inmost calm, when to that Rock I'm clinging........ "

[Guest guest]

Carol,

I know this all seems impossible, it's doable, just takes a lot of planning, some help, and some common sence. Dr. Lenke consulted on my case, at a SRS meeting, my Doc's( Kumar and O'Brien) think he is top notch. We have had many members use Bridwell for revision, so they are very familiar with St. Louis, and how aftercare goes. Once you are home you will need support for awhile, and this will take some planning. How are your support systems( Friends, Family, church etc), and of those, who would be willing to check in on you, maybe bring in some meals, and run your daughter say to and from school and any sports or activities she's involved in. How able is your child to do things for herself, some kids are more self sufficent than others. You can also see what is available to you as far as home health care aid, would be good to have someone to help with bathing in the early days. There will be some equipment you will need, a grabber or two, a sock aid, a raised toilet seat( maybe good to have that installed pre surgery, and have a dedicated bathroom for just your use, as my raised toilet seat required taking off the regular toilet seat), a shower chair, and a long shoe horn, and a walker( I used one for about three weeks post op), and a cane for early trips out. Also look at your home, in the first days, it's easiest to have everything on one level, kitchen, bath, and bed. Our home during my revisions wasn't set up that way, so a bed was set up in the family room so I had access to everything on one level. Kitchens need to be looked at, you may have to move things, look at it with an eye of I use this daily and can't bend, where should it be moved to? My kitchen is set up for my comfort, have lots of things on the counters and don't apologise for it, it makes my life easier. Ah, laundry, it's good your daughter is the age she is she will be a big help. Your grabber will be a big help. You can drop clothes into the washer, but getting them out will be tough, she can help with that, or your trusty grabber can help.Same for the dryer, but if she can take them out and into the basket, then she can take them to you for folding. I'd say, the first month home, folding is about your speed, so work with her to learn what skills she will have to do, with only two of you laundry will be light, so don't freak, I managed to do it all after about a month home and there is five in our family. Big cleaning you will need help with, a lot of doc's say vacuums are tabo, might be another skill to teach your daughter, mine all were taught that at about that age, and they think it's kinda fun. Washing up dishes was easy for me, unloading the bottom rack, not so much, so with only two of you, maybe only use the top rack, or have her hand you the dishes from the bottom to put away. Bathrooms aren't easy, I got good at moving a sponge around the bottom of the shower with my foot to clean it, also there are great bathroom cleaning sponges with cleaner in them on extension polls right in the store to do the walls and tub, they are great, I still use them and they do a great job. It 's all doable, just have to learn new skills to do it. So now is the time to prepare, have talks with your daughter, teach her skills to share the load, have real talks with those in your support system, and prepare. Cooking, make it as easy as possible, no one has died from having soup and a sandwich for dinner, or a frozen dinner, and as you feel better, move into more complicated meals. Not tough if you arrange your kitchen pre surgery. I know no Mom wants to burden their kids, don't look at it that way, look at it as sharing the load. As the days tick on you'll be able to do more and more, but the first say six weeks will be hard.You may have to play it by ear too,depends on how you do, how many med's you need, and wether you are really with it to take care of a child. I'd say once you are home, plan on at least three to four weeks of support, the first two having someone there most of the time, especially bathing. Beyond that, you'll have to play it by ear. The first two weeks home I was medicated to a level that My hubby asked the kids to come to him with questions as I wasn't capable of answering clearly. At a month I was doing simple things, light meals for the family, folding laundry, and I was driving short trips at that point ( I was a early one, many doc's don;t allow driving for much longer). By six weeks out from surgery my hubby started traveling for work again( mind you I had a teenage daughter, and two that were in middle school or almost) so I had support. I was also lucky that my church brought in the dinner meal for a month, that was such a help and relief. Teachers at the kids schools chipped in too, brought them home and to school on Days couldn't. Send a long note to your childs teacher being very real about just what will go on, and also the principal, A lot of school districts have a home support person, and ours was a jewel.

I know this sounds hard, it will be, but the more prepared you are, the easier it will go, and I've done the revision thing not once but twice, and a year before that a decompression surgery, so I had three big surgeries in two calendar years, and I made it through, but with the help of others, and the support of my family. You will be glad you did it not only for you but your child, revision is the best gift I gave my kids.

Colorado Springs

RE: [ ] Re: refered to Lenke and Bridwell

This past week I had an appointment with Dr. Philip Mayer (SE Michigan) who is a member of scoliosis research society and also was one of the surgeons who did my scoliosis surgery 11 years ago. Dr. Mayer looked at me and heard the story of my 11 year post surgical saga of walking problems (he helped with surgery but was not in my HMO at the time, so follow-through was with the other surgeon). He informed me that, although there may be many willing to do the revision surgery I need, there is no one in Michigan who can really do the job. He has refered my to Dr. Lenke in St. Louis. Thanks to you all on this newsgroup, I was already aware of Dr. Lenke. Dr. Mayer's office visit write up (I always have a copies of everything) described me as "an informed consumer."

Thanks for your help in my being so "well informed" !

I checked DR. Lenke's web site and it looks like he would take Medicare and my medigap.

Now I'm hoping you all can help me become more even more well informed regarding St. Louis and what I might expect in terms of visits, surgery, and aftercare with Dr.s Lenke/Bridwell. I just reviewed that lovely lengthy email from SB regarding surgery with Dr. Bridwell. And also another from who had surgery with Dr. Bridwell in April of this year. From these I have a good idea of the follow through expectations. Thanks so much for this helpful information !

Can anyone who has had Dr. Lenke tell me if he has similar follow-through policies and expectations?

I would need to travel from Michigan, and am wondering about :

*the number of visits before surgery...was one trip enough or did you need to go back and forth to St. Louis several times?

*how long in St. Louis post op, and how many visits back have you had to make?

*Dr. Mayer is a colleague of Dr. Lenke on the Scoliosis Research Society, so I am hoping Dr. Mayer could do the follow through from here. Anyone worked that out with these doctors?

The name of the hospital in St. Louis?

I am a single parent with limited support.

My biggest concerns are:

*pulling this off financially... on SSD and unemployed for past 3 years due to back related physical limitations

*What kinds of costs have folks incurred staying in St. Louis post op?

*If they sent me to nursing care (!!!) after surgery what would that be like???

*I experienced a bad time in hospital in first surgery because of understaffing of nurses... I dread having no one there with me to help in the "little things" (and big) when the nurses don't come, or move me inappropriately, and I can't move

*caring for my adopted 9 yo daughter during time in surgery: assuming I find someone to take her in for the time I am in St. Louis, (one month?) what kind of support would I need for how long at home with her? (would I need to have her live away from home for another month or ???) If it is a year at least with no bend and lift.... ARGH laundry, cleaning, picking up the floors, cooking. This is where it begins to seem impossible.

any ideas on any of these questions will be greatly appreciated

:~)

Carol in SE Michigan

"No storm can shake my inmost calm, when to that Rock I'm clinging........ "

[Guest guest]

Carol,

Can I just say how relieved I am to hear of a fine surgeon who had the

perspective to refer you on to another doctor because he recoginized

your unique and challenging needs! I can't remember which member who

said it a few years ago (was it Peggy?)...but it went along the lines

of " just because someone wants to do surgery on you doesn't mean they

are qualified or that you should let them " . And I do remember Kams

account of a surgeon who seemed almost giddy at the prospect of taking

on her challenging surgery....she fairly quickly left the appt and

later went on to have surgery with DrBridwell.

I hope some of the Bridwell and Lenke patients will chime in, but to

save you doing a ton of searching I can point you to the members who

are a few years post op and have posts on the board that are worth

finding. If you go to the search feature on the messages and search

for " medglen " (Martha in Chicago) or " kam " (Kam in OKC) you will find

information to supplement SB's. I know if you don't get other posts

here that answer your questions that Martha and Kam will be more than

happy to have answer questions and I will try to cajole them into

answering you if they don't on their own. Also, be sure to just type

in Bridwell or Lenke's name in the seach box and you will find a

number of others who can help.

I think one thing to bear in mind is that DrMayer didn't appear to

feel there was any requirement for haste from what you said, and as my

surgeon says this is an " owner driven " kind of surgery. You get to

pick the time and place then, and if you find you need to delay your

surgery until you have all the loose ends in your life squared away ,

then so be it.

I think has given you a good general list for how to start

thinking about your needs once you are home. Even tomorrow you can

start walking through your day seeing what things you are doing a lot

of bending or leaning down for and at some point, if you go forward,

you can rearrange. A 10 year old is capable of a lot more than we

think. In many parts of the world they are earning a living at that

age....I always try to remember this when I ask my 12 year old to

please pick his own clothes up off the floor!

Any tasks your daughter learns to take on for the two of you will be

to her benefit as a human being, and will make her feel like she is

contibuting to getting you " well " , which is any childs greatest wish

for their parent. If you delay surgery until school is out perhaps she

can travel to a family members home for a " vacation " while you are

having surgery. You may also be able to enroll her in a camp for the

weeks following your surgery when you may not going to want the extra

comings and goings of kids for the first few weeks when you really

want to sleep a lot during the day. A church or Y camp may have an

affordable option, and I think even many of the sleep away camps that

are pricier also have a scholarship option...so perhaps that could

help cover her needs a little too.

I can't imagine being without a very helpful adult companion in the

week or two following hospital discharge, assuming you don't go to

rehab (and honestly I can't recall any of the StLouis bunch doing

so...but most stayed in town at an apt nearby the hospital until a

week following surgery). Some have done surgey solo...but I don't

think its an ideal situation. You may be able to have a family member

come and stay with your during the surgery/StLouis phase and then

after you are home perhaps another friend/family member, (or series of

them) can camp out at your house until you feel " ready " to go it

alone. Or you can stay with them. I know Martha flew home to Chicago a

week or so after discharge and you may very well be able to do so to.

As for the day to day stuff of managing youself or the home....when

the time comes to have the discussion about planning specific dates

for surgery I would expect you can speak with the social workers at

the Jewish Hospital and ask questions about " discharge

planning " and see if they can point you to the obvious people in your

community who can help you with any of that.

You might even call your own local PCP and see where they suggest you

call. I think every state is a little different, and probably every

community is too. Here in Mass the hospital in Boston was willing to

arrange for my needs out here on Nantucket for " home health services "

and/or a " Visiting nurse " . I had these discussions as a routine part

of my Pre-op testing day (at NEBH its a long day where you see

practically everyone who will touch your life in the hospital and they

give you a thorough " going over " physically too).

Try not to feel like you have to get this figured out overnight...much

as I know that you would now like to get this behind you. Take it in

small steps, with each step building on the previous, and you will

slowly get there. Kind of like how we have to do the shopping before

surgery! You have a 10 year old daughter...so you must remember the

" Little Enging that Could. " I think I can, I think I can,... I know I

can,... I know I can!

And we are here to help you stay as informed as we can get you. I wish

I knew more about SSDI and unemployment and what benefits you might

acess there....but I know others with experience will chime in. Please

don't let it overwhelm you.

Take Care, Cam

[Guest guest]

Carol,

How nice that your doctor referred you to someone who has the

experience required for this type of surgery, versus trying to make

you his guinea pig & tackle it himself

I had my surgery last summer in Chicago at Northwestern University

Hospital, so I am not familiar with the St. Louis area and the

accomodations there. I have other medical issues involved, so I was

in the hospital for two weeks and then in a rehab hospital for

another 4 weeks. I was lucky that my mom took the summer off of work

to watch my kids for us (then ages 2 and 3 1/2). She continued to

watch them for one more week after I got home from the hospital, then

at 7 weeks post-op I watched them again fulltime. It was rough at

first, but they're pretty self-sufficient and helpful around the

house. And since I already didn't drive and such pre-surgery, it

wasn't a huge adaptation for me to get used to after surgery.

At age 9, hopefully your daughter will be a good help for you too

during those first few weeks home (and continue on thereafter)! Do

you have friends or family nearby that are willing to take care of

her while you're away? Do you have a church or other community group

that can help you when you first arrive home - with bringing

occasional meals, grocery shopping for you & your daughter, checking

on you to make sure things are alright.

I don't know what Michigan's rules are, but do you qualify for home

services? I am in a wheelchair and am mostly homebound, and I get

help cooking, cleaning, shopping, etc provided for by the state

(Illinois). Perhaps Michigan has a program similar to that? I don't

know if they consider a person for short-term help though, but since

you're on SSDI, it can't hurt to check into it - the worst they can

do is tell you that you don't qualify! You can start to check into

it by looking into your local Center for Independent Living (CIL):

http://www.ilru.org/html/publications/directory/index.html

Good luck with all of this!

>

> This past week I had an appointment with Dr. Philip Mayer (SE

Michigan) who

> is a member of scoliosis research society and also was one of the

surgeons

> who did my scoliosis surgery 11 years ago. Dr. Mayer looked at me

and

> heard the story of my 11 year post surgical saga of walking

problems (he

> helped with surgery but was not in my HMO at the time, so follow-

through was

> with the other surgeon). He informed me that, although there may

be many

> willing to do the revision surgery I need, there is no one in

Michigan who

> can really do the job. He has refered my to Dr. Lenke in St.

Louis. Thanks

> to you all on this newsgroup, I was already aware of Dr. Lenke.

Dr. Mayer's

> office visit write up (I always have a copies of everything)

described me as

> " an informed consumer. "

> Thanks for your help in my being so " well informed " !

>

> I checked DR. Lenke's web site and it looks like he would take

Medicare and

> my medigap.

>

> Now I'm hoping you all can help me become more even more well

informed

> regarding St. Louis and what I might expect in terms of visits,

surgery, and

> aftercare with Dr.s Lenke/Bridwell. I just reviewed that lovely

lengthy

> email from SB regarding surgery with Dr. Bridwell. And also

another from

> who had surgery with Dr. Bridwell in April of this year.

From

> these I have a good idea of the follow through expectations.

Thanks so much

> for this helpful information !

>

> Can anyone who has had Dr. Lenke tell me if he has similar follow-

through

> policies and expectations?

>

> I would need to travel from Michigan, and am wondering about :

> *the number of visits before surgery...was one trip enough or did

you need

> to go back and forth to St. Louis several times?

> *how long in St. Louis post op, and how many visits back have you

had to

> make?

> *Dr. Mayer is a colleague of Dr. Lenke on the Scoliosis Research

Society, so

> I am hoping Dr. Mayer could do the follow through from here.

Anyone worked

> that out with these doctors?

> The name of the hospital in St. Louis?

>

> I am a single parent with limited support.

> My biggest concerns are:

> *pulling this off financially... on SSD and unemployed for past 3

years due

> to back related physical limitations

> *What kinds of costs have folks incurred staying in St. Louis post

op?

> *If they sent me to nursing care (!!!) after surgery what would

that be

> like???

> *I experienced a bad time in hospital in first surgery because of

> understaffing of nurses... I dread having no one there with me to

help in

> the " little things " (and big) when the nurses don't come, or move me

> inappropriately, and I can't move

> *caring for my adopted 9 yo daughter during time in surgery:

assuming I find

> someone to take her in for the time I am in St. Louis, (one month?)

what

> kind of support would I need for how long at home with her? (would

I need

> to have her live away from home for another month or ???) If it is

a year

> at least with no bend and lift.... ARGH laundry, cleaning, picking

up the

> floors, cooking. This is where it begins to seem impossible.

>

> any ideas on any of these questions will be greatly appreciated

> :~)

>

> Carol in SE Michigan

>

>

>

>

>

>

>

>

> " No storm can shake my inmost calm, when to that Rock I'm

clinging........

> "

>

>

>

> <http://geo./serv?

s=97359714/grpId=15709830/grpspId=1705094709/msgI

> d=23566/stime=1221912727/nc1=5191951/nc2=5191949/nc3=5286666>

>

[Guest guest]

HI Carol,

I saw Dr. Bridwell a few years ago, just for a consultation. He and Dr. Lenke are in the same practice at Jewish Hospital in St. Louis. We stayed at a hotel that is attached by walkway to Jewish, where Dr. Bridwell/Lenke's office is. I forgot the name of the hotel, but Dr. Lenke's office can give it to you. They have a special, cheaper, rate for people who are staying there for a visit to a Jewish doctor. So when you call to make a reservation, make sure to tell them you have a medical appointment at Jewish and you would like the special medical rate. There is an inexpensive restaurant in the hotel, and you could always use the hospital cafeteria. Hospital cafeteria's are generally pretty cheap.

Good luck.

Bonnie

[Guest guest]

"He and Dr. Lenke are in the same practice at Jewish Hospital in St. Louis. We stayed at a hotel that is attached by walkway to Jewish, where Dr. Bridwell/Lenke's office is."

Bonnie,

Thanks for this info. When you go for an initial consult is it a short appointment? How far is this hospital/hotel/dr office from the airport?

Carol

"No storm can shake my inmost calm, when to that Rock I'm clinging........ "

-----Original Message-----From: [mailto: ] On Behalf Of BonnieSent: Sunday, September 21, 2008 7:28 PM Subject: [ ] Re: refered to Lenke and Bridwell

HI Carol,

I saw Dr. Bridwell a few years ago, just for a consultation. He and Dr. Lenke are in the same practice at Jewish Hospital in St. Louis. We stayed at a hotel that is attached by walkway to Jewish, where Dr. Bridwell/Lenke's office is. I forgot the name of the hotel, but Dr. Lenke's office can give it to you. They have a special, cheaper, rate for people who are staying there for a visit to a Jewish doctor. So when you call to make a reservation, make sure to tell them you have a medical appointment at Jewish and you would like the special medical rate. There is an inexpensive restaurant in the hotel, and you could always use the hospital cafeteria. Hospital cafeteria's are generally pretty cheap.

Good luck.

Bonnie

[Guest guest]

" Jewish Hospital in St. Louis. "

Bonnie, Do you know if there is a rehab hospital there, or connected?

Has anyone on list ever stayed in a rehab unit following their surgery with Bridwell or Lenke?

Carol

"No storm can shake my inmost calm, when to that Rock I'm clinging........ "

-----Original Message-----From: [mailto: ] On Behalf Of BonnieSent: Sunday, September 21, 2008 7:28 PM Subject: [ ] Re: refered to Lenke and Bridwell

HI Carol,

I saw Dr. Bridwell a few years ago, just for a consultation. He and Dr. Lenke are in the same practice at Jewish Hospital in St. Louis. We stayed at a hotel that is attached by walkway to Jewish, where Dr. Bridwell/Lenke's office is. I forgot the name of the hotel, but Dr. Lenke's office can give it to you. They have a special, cheaper, rate for people who are staying there for a visit to a Jewish doctor. So when you call to make a reservation, make sure to tell them you have a medical appointment at Jewish and you would like the special medical rate. There is an inexpensive restaurant in the hotel, and you could always use the hospital cafeteria. Hospital cafeteria's are generally pretty cheap.

Good luck.

Bonnie

[Guest guest]

,

you said: "......your doctor referred you to someone who has the experience required for this type of surgery, versus trying to make you his guinea pig & tackle it himself "

Yes, He is a rare one! He has a practice that is combined with a PT practice, and tries to steer clients to PT before resorting to surgery, as he says it is not necessary in many cases and in some cases surgery makes things worse.

" I was in the hospital for two weeks and then in a rehab hospital for another 4 weeks. "

What was the 4 weeks in the rehab hospital like?

I was lucky that my mom took the summer off of work to watch my kids for us (then ages 2 and 3 1/2). She continued to watch them for one more week after I got home from the hospital. Then at 7 weeks post-op I watched them again fulltime.

Wow! without any help? With no bending or twisting?

Did you have the same post op guidelines as Bridwell? Did you start walking every day?

Carol

"No storm can shake my inmost calm, when to that Rock I'm clinging........ "

-----Original Message-----From: [mailto: ] On Behalf Of rebeccamaasSent: Sunday, September 21, 2008 12:21 PM Subject: [ ] Re: refered to Lenke and Bridwell

Carol,How nice that your doctor referred you to someone who has the experience required for this type of surgery, versus trying to make you his guinea pig & tackle it himself :)I had my surgery last summer in Chicago at Northwestern University Hospital, so I am not familiar with the St. Louis area and the accomodations there. I have other medical issues involved, so I was in the hospital for two weeks and then in a rehab hospital for another 4 weeks. I was lucky that my mom took the summer off of work to watch my kids for us (then ages 2 and 3 1/2). She continued to watch them for one more week after I got home from the hospital, then at 7 weeks post-op I watched them again fulltime. It was rough at first, but they're pretty self-sufficient and helpful around the house. And since I already didn't drive and such pre-surgery, it wasn't a huge adaptation for me to get used to after surgery.At age 9, hopefully your daughter will be a good help for you too during those first few weeks home (and continue on thereafter)! Do you have friends or family nearby that are willing to take care of her while you're away? Do you have a church or other community group that can help you when you first arrive home - with bringing occasional meals, grocery shopping for you & your daughter, checking on you to make sure things are alright.I don't know what Michigan's rules are, but do you qualify for home services? I am in a wheelchair and am mostly homebound, and I get help cooking, cleaning, shopping, etc provided for by the state (Illinois). Perhaps Michigan has a program similar to that? I don't know if they consider a person for short-term help though, but since you're on SSDI, it can't hurt to check into it - the worst they can do is tell you that you don't qualify! You can start to check into it by looking into your local Center for Independent Living (CIL):http://www.ilru.org/html/publications/directory/index.htmlGood luck with all of this!>> This past week I had an appointment with Dr. Philip Mayer (SE Michigan) who> is a member of scoliosis research society and also was one of the surgeons> who did my scoliosis surgery 11 years ago. Dr. Mayer looked at me and> heard the story of my 11 year post surgical saga of walking problems (he> helped with surgery but was not in my HMO at the time, so follow-through was> with the other surgeon). He informed me that, although there may be many> willing to do the revision surgery I need, there is no one in Michigan who> can really do the job. He has refered my to Dr. Lenke in St. Louis. Thanks> to you all on this newsgroup, I was already aware of Dr. Lenke. Dr. Mayer's> office visit write up (I always have a copies of everything) described me as> "an informed consumer." > Thanks for your help in my being so "well informed" !> > I checked DR. Lenke's web site and it looks like he would take Medicare and> my medigap. > > Now I'm hoping you all can help me become more even more well informed> regarding St. Louis and what I might expect in terms of visits, surgery, and> aftercare with Dr.s Lenke/Bridwell. I just reviewed that lovely lengthy> email from SB regarding surgery with Dr. Bridwell. And also another from> who had surgery with Dr. Bridwell in April of this year. From> these I have a good idea of the follow through expectations. Thanks so much> for this helpful information !> > Can anyone who has had Dr. Lenke tell me if he has similar follow-through> policies and expectations? > > I would need to travel from Michigan, and am wondering about :> *the number of visits before surgery...was one trip enough or did you need> to go back and forth to St. Louis several times?> *how long in St. Louis post op, and how many visits back have you had to> make?> *Dr. Mayer is a colleague of Dr. Lenke on the Scoliosis Research Society, so> I am hoping Dr. Mayer could do the follow through from here. Anyone worked> that out with these doctors?> The name of the hospital in St. Louis?> > I am a single parent with limited support.> My biggest concerns are:> *pulling this off financially... on SSD and unemployed for past 3 years due> to back related physical limitations> *What kinds of costs have folks incurred staying in St. Louis post op?> *If they sent me to nursing care (!!!) after surgery what would that be> like???> *I experienced a bad time in hospital in first surgery because of> understaffing of nurses... I dread having no one there with me to help in> the "little things" (and big) when the nurses don't come, or move me> inappropriately, and I can't move> *caring for my adopted 9 yo daughter during time in surgery: assuming I find> someone to take her in for the time I am in St. Louis, (one month?) what> kind of support would I need for how long at home with her? (would I need> to have her live away from home for another month or ???) If it is a year> at least with no bend and lift.... ARGH laundry, cleaning, picking up the> floors, cooking. This is where it begins to seem impossible. > > any ideas on any of these questions will be greatly appreciated > :~)> > Carol in SE Michigan> > > > > > > > > "No storm can shake my inmost calm, when to that Rock I'm clinging........> " > > > > <http://geo./serv?s=97359714/grpId=15709830/grpspId=1705094709/msgI> d=23566/stime=1221912727/nc1=5191951/nc2=5191949/nc3=5286666>>

[Guest guest]

Thanks, Cam, you have given me a lot to think about and try to plan. I do, as you say, have some time. It is a lot to figure out.

It helps to have some others who have gone through this to hear input. This is so helpful

What did we do before newsgroups? Just muddled along, I guess!

Carol

"No storm can shake my inmost calm, when to that Rock I'm clinging........ "

-----Original Message-----From: [mailto: ] On Behalf Of cammaltbySent: Saturday, September 20, 2008 10:45 PM Subject: [ ] Re: refered to Lenke and Bridwell

Carol,Can I just say how relieved I am to hear of a fine surgeon who had theperspective to refer you on to another doctor because he recoginizedyour unique and challenging needs! I can't remember which member whosaid it a few years ago (was it Peggy?)...but it went along the linesof "just because someone wants to do surgery on you doesn't mean theyare qualified or that you should let them". And I do remember Kamsaccount of a surgeon who seemed almost giddy at the prospect of takingon her challenging surgery....she fairly quickly left the appt andlater went on to have surgery with DrBridwell.I hope some of the Bridwell and Lenke patients will chime in, but tosave you doing a ton of searching I can point you to the members whoare a few years post op and have posts on the board that are worthfinding. If you go to the search feature on the messages and searchfor "medglen" (Martha in Chicago) or "kam" (Kam in OKC) you will findinformation to supplement SB's. I know if you don't get other postshere that answer your questions that Martha and Kam will be more thanhappy to have answer questions and I will try to cajole them intoanswering you if they don't on their own. Also, be sure to just typein Bridwell or Lenke's name in the seach box and you will find anumber of others who can help.I think one thing to bear in mind is that DrMayer didn't appear tofeel there was any requirement for haste from what you said, and as mysurgeon says this is an "owner driven" kind of surgery. You get topick the time and place then, and if you find you need to delay yoursurgery until you have all the loose ends in your life squared away ,then so be it.I think has given you a good general list for how to startthinking about your needs once you are home. Even tomorrow you canstart walking through your day seeing what things you are doing a lotof bending or leaning down for and at some point, if you go forward,you can rearrange. A 10 year old is capable of a lot more than wethink. In many parts of the world they are earning a living at thatage....I always try to remember this when I ask my 12 year old toplease pick his own clothes up off the floor! Any tasks your daughter learns to take on for the two of you will beto her benefit as a human being, and will make her feel like she iscontibuting to getting you "well", which is any childs greatest wishfor their parent. If you delay surgery until school is out perhaps shecan travel to a family members home for a "vacation" while you arehaving surgery. You may also be able to enroll her in a camp for theweeks following your surgery when you may not going to want the extracomings and goings of kids for the first few weeks when you reallywant to sleep a lot during the day. A church or Y camp may have anaffordable option, and I think even many of the sleep away camps thatare pricier also have a scholarship option...so perhaps that couldhelp cover her needs a little too.I can't imagine being without a very helpful adult companion in theweek or two following hospital discharge, assuming you don't go torehab (and honestly I can't recall any of the StLouis bunch doingso...but most stayed in town at an apt nearby the hospital until aweek following surgery). Some have done surgey solo...but I don'tthink its an ideal situation. You may be able to have a family membercome and stay with your during the surgery/StLouis phase and thenafter you are home perhaps another friend/family member, (or series ofthem) can camp out at your house until you feel "ready" to go italone. Or you can stay with them. I know Martha flew home to Chicago aweek or so after discharge and you may very well be able to do so to.As for the day to day stuff of managing youself or the home....whenthe time comes to have the discussion about planning specific datesfor surgery I would expect you can speak with the social workers atthe Jewish Hospital and ask questions about "dischargeplanning" and see if they can point you to the obvious people in yourcommunity who can help you with any of that. You might even call your own local PCP and see where they suggest youcall. I think every state is a little different, and probably everycommunity is too. Here in Mass the hospital in Boston was willing toarrange for my needs out here on Nantucket for "home health services"and/or a "Visiting nurse". I had these discussions as a routine partof my Pre-op testing day (at NEBH its a long day where you seepractically everyone who will touch your life in the hospital and theygive you a thorough "going over" physically too).Try not to feel like you have to get this figured out overnight...muchas I know that you would now like to get this behind you. Take it insmall steps, with each step building on the previous, and you willslowly get there. Kind of like how we have to do the shopping beforesurgery! You have a 10 year old daughter...so you must remember the"Little Enging that Could." I think I can, I think I can,... I know Ican,... I know I can!And we are here to help you stay as informed as we can get you. I wishI knew more about SSDI and unemployment and what benefits you mightacess there....but I know others with experience will chime in. Pleasedon't let it overwhelm you.Take Care, Cam

[Guest guest]

Hi Carol,I am planning to have surgery with Dr. Bridwell in January. When I went for my initial visit in June, it took all day. They told me to be there at 8:00am, and I was. I waited almost 2 hours to see the doc, then he came in and looked at my x-rays and ordered a bunch of new x-rays. So I went and got those, then waited to see the doc again. He came back and went over all the medical issues and his recommendations. Then I had to wait to meet with his nurse, Bernie, who goes over the details and answers all your questions. They had told me to expect to be there into the afternoon -- I was there until 3pm. I have also asked them about rehab many times, and was told it is their policy -- Lenke's too from what I understand -- NOT

to send people to rehab. Bernie said that they had had bad luck with people doing PT that actually made things worse. Instead of rehab they prescribe walking -- starting out slow but walking a mile a day by the end of the month, then 2 miles a day the next month. They send you home after 7-10 days in the hospital and you must have someone to care for you there.I would much rather go to rehab, since I have no one who can take off a few weeks to take care of me (I have 3 small kids who need care too) -- but Bernie said that unless there are major complications they would not authorize rehab. I'm going to have to hire someone. I did get some great suggestions from people here about places to stay after surgery -- thank you!Eve [ ] Re: refered to Lenke and Bridwell

HI Carol,

I saw Dr. Bridwell a few years ago, just for a consultation. He and Dr. Lenke are in the same practice at Jewish Hospital in St. Louis. We stayed at a hotel that is attached by walkway to Jewish, where Dr. Bridwell/Lenke' s office is. I forgot the name of the hotel, but Dr. Lenke's office can give it to you. They have a special, cheaper, rate for people who are staying there for a visit to a Jewish doctor. So when you call to make a reservation, make sure to tell them you have a medical appointment at Jewish and you would like the special medical rate. There is an inexpensive restaurant in the hotel, and you could always use the hospital cafeteria. Hospital cafeteria's are generally pretty cheap.

Good luck.

Bonnie

[Guest guest]

Carol,

I agree that the advent of newgroups has changed they way of many of

our lives...certainly it changed the course of mine. If there is

anything that frustrates me it is that the information about what is

probably happening to many people like us is out there...but for

whatever reason I think a lot of them are just not getting

information from their doctors that is accurate about what is going

on with them. And I suspect a lot of us were so traumatized by this

surgery as kids that we just try to ignore the fact that our backs a

failing us and so perhaps the information is not sought out.

I have not doubt that being an informed consumer is very important

for you, but also for the surgeon. It makes it easier for them to

talk to us about the very intricate procedures that are

proposed...and they then know that when we give our consent to the

prosedure that we really have an inkling of what exactly we are

saying " yes " to. I know if I was a surgeon it is what I would want in

a patient!

Take Care, Cam

[Guest guest]

> Now I'm hoping you all can help me become more even more well

informed

> regarding St. Louis and what I might expect in terms of visits,

surgery, and

> aftercare with Dr.s Lenke/Bridwell.

I think I visited with Dr Bridwell 3 times before surgery-- the

initial consultation, another visit after having all the tests he

requested and the third visit the day before surgery.

>

> I would need to travel from Michigan, and am wondering about :

> *the number of visits before surgery...was one trip enough or did

you need

> to go back and forth to St. Louis several times?

> *how long in St. Louis post op, and how many visits back have you

had to

> make?

my husband and I rented an efficiency apartment at Ellsworth

Apartments about 3 blocks from the hospital. I think it was around

$650 for the month

http://www.apartmentguide.com/searchresults.aspx?

srch=lt_1_1**st_1_25**propertycity_1_na_St.+Louis**geo_20_38.6272_-

90.1978_50**bd_1_-1**bt_1_-1**listingpricelow_9_0_-1**name_2_ellsworth

> *Dr. Mayer is a colleague of Dr. Lenke on the Scoliosis Research

Society, so

> I am hoping Dr. Mayer could do the follow through from here.

Anyone worked

> that out with these doctors?

when I fell at the mall and wanted to be checked out, I went to a

local orthopedic doctor.

> The name of the hospital in St. Louis?

Jewish

> *What kinds of costs have folks incurred staying in St. Louis post

op?

apartment rental

> *If they sent me to nursing care (!!!) after surgery what would

that be

> like???

they were looking for a facility that would accept my insurance but

fortunately, I was able to go to the apartment instead. be sure and

walk down the hall!!!

> *I experienced a bad time in hospital in first surgery because of

> understaffing of nurses... I dread having no one there with me to

help

all the rooms on the orthopedic floor are private and my husband

ended up staying with me most nights. He found it to be very helpful

in helping him learn how to help me get to the bathroom safely.

when the nurses don't come, or move me

> inappropriately, and I can't move

> *caring for my adopted 9 yo daughter during time in surgery:

assuming I find

> someone to take her in for the time I am in St. Louis, (one month?)

what

> kind of support would I need for how long at home with her? (would

I need

> to have her live away from home for another month or ???) If it is

a year

> at least with no bend and lift.... ARGH laundry, cleaning, picking

up the

> floors, cooking. This is where it begins to seem impossible.

>

> any ideas on any of these questions will be greatly appreciated

> :~)

I would think a 9 year old could be a big help at home after surgery!

>

> Carol in SE Michigan

>

>

>

>

>

>

>

>

> " No storm can shake my inmost calm, when to that Rock I'm

clinging........

> "

>

>

>

> <http://geo./serv?

s=97359714/grpId=15709830/grpspId=1705094709/msgI

> d=23566/stime=1221912727/nc1=5191951/nc2=5191949/nc3=5286666>

>

[Guest guest]

Carol,

My case was a little different from most here, because I have

multiple sclerosis in addition to flatback. The surgery helped my

flatback, but sort of put me in a wheelchair fulltime afterwards. I

was using a walker fulltime before and a wheelchair for longer

distances, but after the surgery, I have pretty much been in the

chair fulltime.

So my 4 weeks of rehab was for basic things like learning to roll

over in bed again and try to sit up. I didn't do those by myself

until about 5 weeks postop. I did very minimal walking, and was up

to about 75 feet max I think when I left for home.

I have adapted to being able take care of my kids with minimal

bending and twisting from my wheelchair. Reachers are my best

friends, haha. It takes some patience, just as it would if I were

able to stand and walk with the bending/twisting restrictions, but

it's doable

So I don't do all the walking that everyone else is encouraged to do,

but my fusion still healed beautifully according to the xrays.

Good luck with everything as you start this journey!

> >

> > This past week I had an appointment with Dr. Philip Mayer (SE

> Michigan) who

> > is a member of scoliosis research society and also was one of the

> surgeons

> > who did my scoliosis surgery 11 years ago. Dr. Mayer looked at me

> and

> > heard the story of my 11 year post surgical saga of walking

> problems (he

> > helped with surgery but was not in my HMO at the time, so follow-

> through was

> > with the other surgeon). He informed me that, although there may

> be many

> > willing to do the revision surgery I need, there is no one in

> Michigan who

> > can really do the job. He has refered my to Dr. Lenke in St.

> Louis. Thanks

> > to you all on this newsgroup, I was already aware of Dr. Lenke.

> Dr. Mayer's

> > office visit write up (I always have a copies of everything)

> described me as

> > " an informed consumer. "

> > Thanks for your help in my being so " well informed " !

> >

> > I checked DR. Lenke's web site and it looks like he would take

> Medicare and

> > my medigap.

> >

> > Now I'm hoping you all can help me become more even more well

> informed

> > regarding St. Louis and what I might expect in terms of visits,

> surgery, and

> > aftercare with Dr.s Lenke/Bridwell. I just reviewed that lovely

> lengthy

> > email from SB regarding surgery with Dr. Bridwell. And also

> another from

> > who had surgery with Dr. Bridwell in April of this

year.

> From

> > these I have a good idea of the follow through expectations.

> Thanks so much

> > for this helpful information !

> >

> > Can anyone who has had Dr. Lenke tell me if he has similar follow-

> through

> > policies and expectations?

> >

> > I would need to travel from Michigan, and am wondering about :

> > *the number of visits before surgery...was one trip enough or did

> you need

> > to go back and forth to St. Louis several times?

> > *how long in St. Louis post op, and how many visits back have you

> had to

> > make?

> > *Dr. Mayer is a colleague of Dr. Lenke on the Scoliosis Research

> Society, so

> > I am hoping Dr. Mayer could do the follow through from here.

> Anyone worked

> > that out with these doctors?

> > The name of the hospital in St. Louis?

> >

> > I am a single parent with limited support.

> > My biggest concerns are:

> > *pulling this off financially... on SSD and unemployed for past 3

> years due

> > to back related physical limitations

> > *What kinds of costs have folks incurred staying in St. Louis

post

> op?

> > *If they sent me to nursing care (!!!) after surgery what would

> that be

> > like???

> > *I experienced a bad time in hospital in first surgery because of

> > understaffing of nurses... I dread having no one there with me to

> help in

> > the " little things " (and big) when the nurses don't come, or move

me

> > inappropriately, and I can't move

> > *caring for my adopted 9 yo daughter during time in surgery:

> assuming I find

> > someone to take her in for the time I am in St. Louis, (one

month?)

> what

> > kind of support would I need for how long at home with her?

(would

> I need

> > to have her live away from home for another month or ???) If it

is

> a year

> > at least with no bend and lift.... ARGH laundry, cleaning,

picking

> up the

> > floors, cooking. This is where it begins to seem impossible.

> >

> > any ideas on any of these questions will be greatly appreciated

> > :~)

> >

> > Carol in SE Michigan

> >

> >

> >

> >

> >

> >

> >

> >

> > " No storm can shake my inmost calm, when to that Rock I'm

> clinging........

> > "

> >

> >

> >

> > <http://geo.. <http://geo./serv?> com/serv?

> s=97359714/grpId=15709830/grpspId=1705094709/msgI

> > d=23566/stime=1221912727/nc1=5191951/nc2=5191949/nc3=5286666>

> >

>