FIFTH QUESTION OF THE WEEK, 05-03-2005

[Guest guest]

Here is this week's Question of the Week. Answers will be incorporated

in our forthcoming FAQ. We hope to make this document as informative

and comprehensive as possible -- useful especially to new members just

learning about HARMS/flatback syndrome and attempting to research

their options.

To prepare and submit your answer, hit " Reply, " compose your message,

and submit it to the group. (Do NOT change the subject line above,

unless you are changing the subject.)

Thanks in advance for your important contribution to our collective

wisdom!

*********************************************************************

QUESTION OF THE WEEK

(5) How can I best prepare for revision surgery?

[Guest guest]

Talk with people who have been there!!! Eat well, build up those leg

muscles, store your own blood. Have a bed ready on the first floor of your

house, get a toilet riser, have people ready and willing to cook for you, or

prepare and freeze foods ahead of time. Set your kitchen up so you don't

have to bend or stretch. You'll ownly be able to lift 2 pounds when you get

home, so have light weight dishes, microwave if possible. Be prepared for

hours of television watching, so have movies available to you, and someone

to put them in the DVD player. Enlist help from loved ones, accept help from

loved ones!!! Cut your hair as short as you can ( I ALMOST shaved my

head!!).

>From: " Rasche " <poetryperson@...>

>Reply-

>

>Subject: FIFTH QUESTION OF THE WEEK, 05-03-2005

>Date: Tue, 03 May 2005 23:22:49 -0000

>

>Here is this week's Question of the Week. Answers will be incorporated

>in our forthcoming FAQ. We hope to make this document as informative

>and comprehensive as possible -- useful especially to new members just

>learning about HARMS/flatback syndrome and attempting to research

>their options.

>

>To prepare and submit your answer, hit " Reply, " compose your message,

>and submit it to the group. (Do NOT change the subject line above,

>unless you are changing the subject.)

>

>Thanks in advance for your important contribution to our collective

>wisdom!

>

>*********************************************************************

>

>QUESTION OF THE WEEK

>

>(5) How can I best prepare for revision surgery?

>

>

[Guest guest]

How can I best prepare for revision surgery?

First of all, get yourself mentally ready. I was overwhelmed with the busy work of getting ready for surgery, all the appointments, giving blood, EKG's, tests that I had to take a moment to center myself, and prepare my kids for what it was going to be like after, how Mom would be in pain and on med's. Having my kids understand as best they could that things would be very different at home while I recovered, but that things would eventually get back to normal. That when Mom was on major medications it probably was much better to go to Dad with day to day problems.

Get as much support for the family as possible, if people offer to bring in meals, take them up on it. Have rides planned for kids, since you probably won't be driving for a month or so. Put up meals in the freezer, the microwave becomes your friend.

My hospital sent home with me daily living aides like, a raised toilet seat, a walker, a cane, dressing stick, sock pull. Check with your doc how it works at your hospital, and purchase them before hand if necessary. These are pretty manditory items. Since the raised toilet seat requires you to have the normal toilet seat removed, doing this in advance is a good idea. During my recovery we just made one bathroom Mom's with the raised toilet seat. I also found it more comfortable to have a pillow propped against the back of the toilet so I could lean back comfortably, just throw it away after the seat is no longer necessary.

This isn't delicate, let fiber caplets become your friend. Laxitives, stool softeners, didn't get it for me. You can get toxic if things aren't moving through you well, and I did, threw up and was very ill. Went to the emergency room three times, my regular doc, etc. and no one asked if my bowels were moving often enough. A friend suggested that maybe I was sick because of that and told me about the fiber caplets, and they worked, and I was finally able to keep food down.

No one can prepare you for how you will handle pain, the med's, and the overwhelming feeling like you have been hit by a bus. Time handles that, and hopefully you will have good people around you to be a support. Don't push yourself, surgery like this couldn't be more major, and you won't be your old self for months. I'm a pop right back girl, and for even me I was surprised just how long it took.

Colorado Springs

FIFTH QUESTION OF THE WEEK, 05-03-2005

Here is this week's Question of the Week. Answers will be incorporatedin our forthcoming FAQ. We hope to make this document as informativeand comprehensive as possible -- useful especially to new members justlearning about HARMS/flatback syndrome and attempting to researchtheir options.To prepare and submit your answer, hit "Reply," compose your message,and submit it to the group. (Do NOT change the subject line above,unless you are changing the subject.)Thanks in advance for your important contribution to our collectivewisdom!*********************************************************************QUESTION OF THE WEEK(5) How can I best prepare for revision surgery? 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]

Many people have made some excellent suggestions for how to prepare for surgery, so I don't want to repeat what has been said before. I will just stress the things that seemed most important to me and my recovery:

1) Ask for a physical therapy program - preferably a holistic one, and by that I mean one that includes exercise, help with balance, getting in and out of cars, daily activities, water therapy, hot/cold therapy, biofeedback and hypnotherapy (relaxation and visualization were part of this as were pre-surgery audio tapes), and group/individual counseling and educational sessions.

2) Ask questions. Any that occur to you, write in your little notebook and call the doctor's office or if you have an appt., make sure you get answers.

3) Accept help and ask for help if you need it. If you need a handicap sticker (temporary or permanent, get one). Your doctor will be glad to help you with this, and you have earned it. It will also make life easier while you are trying to pull everything together for surgery.

4) Have a family conference about what's going on and depending on the age of children; let everyone know how they can support you and what you can and cannot do. Let them know that after surgery, you won't be able to do some of the things you can do now (and clarify with your doctor, what these may be), but you will welcome their company, their care and love, their understanding and their patience. For younger children, let them know where they will be while you are in surgery and when they will see you - building in safety and comfort.

5) Tell your relatives, friends and co-workers (if you are working outside the home) the amount of information you are comfortable with them knowing and asking for the support you need from them. Take the time you need off of work - the job will be there when you get back and you need to allow time to heal. That's crucial for your back and for your well being.

6) Take an advocate with you. My husband was a miracle worker. Just having him there took a lot of pressure off of me - and as an old Vietnam medic he turned out to be a great nurse after both surgeries. He chose to sleep in my room and they accomodated him. There are always places around the hospital for less money - be sure to check into these - the Mc House is a place to start - when they aren't full, they will provide a place for other patients' families.

7) Take some of your favorite things w/you. I took affirmation tapes and some music tapes my daughter had put together for me - my husband changed the tape player for me until I could do it myself - this was very soothing, particularly right after surgery.

8) Ask the doctor about after surgery pain - it really is individual about your response and how you react to pain - if you have a high pain threshold. Don't be afraid to tell them if you are in pain and need more medication. Being brave when you are in intense pain isn't necessary - it takes long enough to get the doctor's approval for pain relief w/o waiting too long to ask for help.

9) Somehow knowing the second time around that there would be a period of time right after that I would be in pain helped. I talked myself through by knowing that it would pass.

10) Let visitors know when you are ready for them to come. After the first surgery, I woke up to 14 frightened faces looking at me. I couldn't focus because I was so out of it on morphine and I was definitely not making sense. I had the "push button" morphine so I thought I was so funny when I kept saying, "Button, button, whose got the button." I think they either thought I was dying or crazy with the latter being the worst choice. I couldn't wait to get off the morphine because it made me so loopy.

11) Make plans for post surgery before surgery - if you are living alone and will need someone to help you afterward, be sure to be realistic about that need, and either have a family member you trust, or check into in-home nursing care (or in-facility) - the latter two are covered by most insurance policies and Medicare. After most fusion and revision surgeries, you will need nursing care - it will make your life easier or just down right possible.

12) Once you have made the decision to have surgery, remember you have made the decision, and in that moment you have taken control of your life and what happens next. You can make a plan to be as strong and healthy as possible before surgery and a plan (rehab should be a part of your post surgical plan w/your doctor), too. So let go, and let God, however, you believe in God (or in yourself if not God...)

13) Talk w/someone if you are feeling depression, scared, concerned about your state of mind - there's no shame in going to a counselor, social worker or therapist....covered by your insurance or your local MHMR. Hypnotherapy can help you with pain management and pre-surgery prepration, but it should be done by a certified professional who can give you an audio tape/CD or teach you self-hypnosis to use in preparing for surgery and the period post surgery....

14) Make your travel plans with your condition in mind and be sure you have worked out how you will travel with as little pain as possible according to your doctor's directions. We drove home (9) hrs from Amarillo in a van stopping every hour to walk (your best exercise friend) and traveling only 4 hours at a time.

15) Treat yourself with the same kindness you would treat your best friend or your daughter mother if she were having surgery - w/kindness and concern. Declare a moratorium on serious crisis or stress until you area ready to handle it.

16) Have all your insurance matters straight - so that this kind of stress doesn't arise during your recoup period or if it does have your spouse handle it if possible. I had a doctor's office calling weekly asking for payment because my insurance company was slow in paying. That was a kind of stress I could do without.

I probably missed something - take reading materials, objects that make you feel safe - pictures, anything meaningful that can be w/you for the days you are in the hospital....o.k. enough already - you have a wealth of info from a # of experts here-- everyone take care - I had facet injections today instead of botox - I'll let y'all know how it goes and if it's better than botox.........Peaceful Evening, Jennie B.

[Guest guest]

I'm sorry but I can't answer this one. I'm not at that stage yet.

Francine

FIFTH QUESTION OF THE WEEK, 05-03-2005

Here is this week's Question of the Week. Answers will be incorporatedin our forthcoming FAQ. We hope to make this document as informativeand comprehensive as possible -- useful especially to new members justlearning about HARMS/flatback syndrome and attempting to researchtheir options.To prepare and submit your answer, hit "Reply," compose your message,and submit it to the group. (Do NOT change the subject line above,unless you are changing the subject.)Thanks in advance for your important contribution to our collectivewisdom!*********************************************************************QUESTION OF THE WEEK(5) How can I best prepare for revision surgery? 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]

I don't have much to add to this that hasn't already been said. I

did realize this November when I had the revision hardware removed

what was causing my stomach to act up while I was in the hospital.

It was the water, there was something about the water that didn't

agree with me. My dad bought me in a bottle of water he bought at

the Mc's down stairs and my stomach started to feel better.

So, if you have a sensitive stomach like I do, I would recomend

taking your own bottled water along or have someone who can get some

bottled water for you while you are in the hospital, after you get

off the ice chips and move to a liquid diet.

Also, I know it is tough to do, but I would suggest cutting your

hair as short as possible. I didn't cut my hair very short and with

having an anterior/posterior incision to worry about and keep dry it

was tough to wash my hair. When I had surgery this November I cut

all of my hair off and it was much easier to manage. I also ended

up in bed for five days without being able to get out and I had a

major rats nest in the back of my hair. I know someone else brought

the hair cutting up, but I wanted to mention it again because it is

a tough subject for most. But remember, your hair will grow back

and with it being so short, you don't have to worry about sitting in

the stylist chair to get it cut and styled until you are feeling

better.

Another thing that was mentioned, be sure to have someone there that

can speak for you. Totally unexpectedly I had to have a tube put

down my throat, after that I couldn't talk and I didn't want to

anyway. My dad had to take over for me to agree to the care that I

needed and to be sure that I was getting what I needed. My plan was

that he should go home after the surgery and then come back to get

me when I was ready to be discharged, my mom and my dad didn't agree

with that option and I am very happy that they were thinking about

it more clearly than I was.

Besides that, everything else I can think of has already been said.

> Here is this week's Question of the Week. Answers will be

incorporated

> in our forthcoming FAQ. We hope to make this document as

informative

> and comprehensive as possible -- useful especially to new members

just

> learning about HARMS/flatback syndrome and attempting to research

> their options.

>

> To prepare and submit your answer, hit " Reply, " compose your

message,

> and submit it to the group. (Do NOT change the subject line above,

> unless you are changing the subject.)

>

> Thanks in advance for your important contribution to our collective

> wisdom!

>

>

*********************************************************************

>

> QUESTION OF THE WEEK

>

> (5) How can I best prepare for revision surgery?

[Guest guest]

Well, even though I'm not committed to the surgery yet I'll throw in my 2 cents.

1. Make sure you have enough help for afterwards. Like hire a housekeeper, or enlist your neighbors or church to supply food and meals.

2. Have a family member be your advocate at the hospital. Hospitals are short staffed everywhere! You must be fully aware of your conditions and expectations. Ask what "everything" is for! Yes, some staff will be upset with you but its your right to know! Always ask what they are giving you and why are they taking more blood etc. There are some nurses who were taught to make family leave the room for the slightest procedure to the patient. I always vote to have family stay in the room. It keeps the staff on their toes.

3. Hair care: I have long hair and like to go camping where there is no running water. I always put my hair in two braids. Its easy to sleep on does not get tangled and usually will stay clean for several days. Hospitals actually have Shampoo trays. They allow for a patient's hair to be washed while laying in bed. (one of my most pleasant memories of my original surgeries was a nurse who took the time to wash and blow dry my hair while I was laying in bed) Thank you Sue Wolf where ever you are!

4. Move your bed downstairs or have a small fridge upstairs so you can rest when needed and get food too.

I'm sure I'll be thinking of more as this hits me right where I'm at in my life right now. I'll be interested in hearing what others have to say.

AMY

[Guest guest]

How can I best prepare for revision surgery?

This is actually a multi-faceted question for me, and alot of good

advice has already been given. Looking at the surgery as purely a

hospitalization..I would refer the reader to the files section of

this site for good ideas about what to bring. I wrote a long post

while the hospital experience was fresh in my mind (post #10052)

which contains some other thoughts about what worked for me in the

hospital.

The real work of preparing for surgery begins with picking the very

best surgeon and then preparing your mind, your body, your family,

your home, your friends and coworkers for what lies ahead, most of

which is a little bit unknown.

I believe we have adequatly covered the " surgeon " part of

prepartions, so I will try to add my thoughts on the other areas. I

do think the biggest part of preparation really is committing

yourself to the notion that you are the responsible party here. To

me, this means that you must do all that you can to increase the

chances of having a good outcome. You expect your surgeon to show up

for your surgeries healthy, fit, rested, and prepared...it is your

job to do the same, to the extent that you are able.

For me, I looked at a 2 day, three stage surgery as an assault on my

body that needed to be prepared. I took my surgeon at his word that

he thought I should prepare my cardio-vascular system as well as

possible. The only excercise I could do was in the pool, and it

stunk because it was winter and it hurt to get there and millions of

other excuses why I could have just as easily stayed on the couch.

Then I would think how terrible is would be if my body didn't have

the stamina to undergo the surgery...and that got me moving. Try to

find a good visual for yourself that keeps you able to prepare

yourself physically as your doctor suggests.

I read other information on nutrition and surgery...if you are

interested, Novartis has a web site with their research. Turns out

well nourished patients have a much lower rate of infections and

faster healing of wounds...not bad things going into these long

surgeries. I talked the idea of using the Novartis supplements

before and between stages over with my surgeon...got the go-ahead,

and don't regret it for a second. I had no infections, quick, clean

wound healing...and the Dr. has since said he was amazed at how high

my albumin count was prior to the second surgery and will be

recommending it to others.

Blood donation. A challenge to be sure. I am convinced that it is

not possible to give meaningful information here...my experience has

led me to believe that each geographic area (which may be tiny),

each hospital, insurance company, blood donor center has different

rules...making this one of the more challenging aspects

of " preparation " . All I can say is if you intend to auto-donate,

leave yourself enough time to really get this figured out...becasue

the time-line can be quite tight, and it would be a shame if this ws

your wish and you ran out of time. I believe you will be able to

start this research once you have identified your surgeon/hospital,

even if you haven't set dates.

Family preparation means alot of things. Naturally, if you have

young children you will need to make special arrangements to see

that their needs are taken into full account. For me, I explained to

my son (8yrs)what ws going to happen to me, and who was going to be

with him. I had long chats with his teacher so they knew what ws

going on at home. I did have him visit me in the hospital between

stages, but not until all the tubes were out. I was actually sitting

in a chair, pretty well spruced up for his benefit, when he came to

see me. I could see his face relax the second he saw that I didn't

look so bad. Who knows what children will imagine...but it can be

worse than reality. My husband had been at my pre-surgical appt with

the doctor and attended the hospitals " Spine surgery " course, so he

was pretty much up to speed with what I was going to need from him.

I would like to point out that my husband had no trouble triggering

his rights under the Family Medical Leave Act becasue of this

surgery and has taken the whole 12 weeks, in his case unpaid, to

stay home. Your spouses employer (or contract) may provide different

provisions in terms of eligibility to take that leave as paid, so it

is worth checking out. For us, even taking his time as unpaid made

the most sense, so we used our " preparation time " to sock away some

$$ so that would be possible.

I am lucky that I labor under a union contract, so there really is

not much my employer can say about my time away from work or

compensation while I am out sick...it was very easy to determine

what those benefits would be...but you should verify all that with

your company if your work situation is not so clear cut. If you are

lucky enough to have health insurance, it won't hurt to take the

time to study your benefits to be sure you understand how they will

be paid. Nothing like feeling rotten during the recovery period and

having to start working your way through insurance claims and doctor

bills.

Speaking of paper work that needs to be completed...do you have a

will? Do you have a living will? NEBH required a living will prior

to admission, your facility may differ. My husband and I had done

wills when our son was born and we had executed living wills at that

time. You probably should use your " prep " time thinking through all

the questions required for both documents and reviewing old ones to

make sure they still reflect your wishes. As ghoulish as this may

read, it actually set my mind at ease to know that all this was done

and in order.

Spend some time re-ordering your home to make sure anything you want

to use routinely during the 8-12 weeks post op is up high enough to

reach easily. You really won't be able to reach under a bathroom

sink for toilet paper or get dog food out of a low bin.

In short I recommend you at least temporarily adopt my(not original

author!) motto: Plan for the worst; hope for the best!