Re: SERIES 3, QUESTION #1

May 30, 2011

Good morning all - My initial knee jerk reaction/advice to someone having back surgery for the first time is "Don't let anyone cut on your spine, unless you have exhasted ALL other alternatives!!!" When I was getting ready for my catastrophic failure back surgery in 2007, it was so bizarre...half my office suddenly had back problems. I was mortified at how quickly the surgeons they consulted with were wanting to cut them open. I kep telling them "No, No, No". Once they saw me after my surgery, having flatback, their backs didn't hurt anymore. Go figure. I know that most, if not all, of us in the group are past the point of other alternatives. So the next best advice is "CHOOSE YOUR SURGEON WISELY". Back in 2007 I thought I did

everything right. I researched the procedure...chose the best surgeon in the city...got second & third opinions...got glowing recomendations from the other surgeons that my surgeon was the best man for the job...etc. I never thought to ask to contact other patients he had done the same surgery on. I found out afterwards that he had other patients whose multi-level fusion surgeries resulted in flatback. Fast forward 3 years... I was able to find the right surgeon due to information on the 2 internet flatback groups I'm in. Members' "before & after" pics were proof that Dr Hu @ UCSF was skilled enough to perform my revision. You've heard the old saying "It's easier to do a job right the first time, than to have to go & fix someone elses mistake". The bigger the mistake, the harder it is to find someone skilled enough to fix it. I know that most people have friends & family to help after

surgery...but I want to talk to & give encouragement to those who don't. Recovery from revision surgery CAN be done if you live alone. My family is VERY disfunctional, I didn't go to church, & I didn't know my neighbors. Did I mention I have 3 large dogs? The only help I got was that one of my sisters took me grocery shopping ONCE. I knew I was truely on my own when my doctor's office called me 2 days after I got home & told me there were no in home service providers in my area that accepted my insurance. So this is how I did it...I stocked my kitchen with 6 weeks worth or easy to prep food (mostly soups/sandwiches/ice cream)...attached chains to my dogs' bowls, so I could get them with my grabber...got every gadget the hospital had for patients with limited mobility (sock aid/grabber/3 ft long shoe horn/walker/shower chair/bedside potty chair/extension gadget to wipe my privates). All of which

I used. I think whoever invented the sock aid deserves a Nobel Prize! My surgeon & the hospital staff drilled into my head...NO BENDING / NO LIFTING / NO TWISTING. For me, it was an unrealistic expectation. I know I did things that I wasn't supposed to...but I had to survive!! So do EVERYTHING you can to get help!!! If there is no help, try to put off what needs to be done, until you get help. If help is not coming...be VERY in tune to your body!!! Your body will let you know your limitations. Don't do anything that may compromise your recovery. And last but not least...SLEEP THROUGH AS MUCH OF YOUR RECOVERY AS YOU CAN. Going through revision surgery alone is the hardest & scariest thing I've ever done. I would do it all again, in a heartbeat!!! I don't have all of my life back yet, but I'm getting there. My final revision surgery was 4 months

ago. I am almost off my pain meds...enrolled in school taking classes online to get my accounting degree...can walk 1 3/4 miles on my treadmill... & I was able to walk my dogs (one at a time) for the first time night before last.

I even had my first little debut outing a couple of weeks back. I attended a motorcycle club BBQ, where people hadn't seen me since before my revision. All I can say is "JAWS DROPPED". I almost felt like I was in the Twilight Zone. Instead of getting pitiful stares, I got compliments...2 phone numbers... & one proposition = ) My story may not be a blueprint on "how to do it"...but I think I'm FINALLY going to get a happy ending. Sincerely.......................................Kathy

From: <elizabethrgonzalez@...> Sent: Monday, May 30, 2011 3:37 AMSubject: SERIES 3, QUESTION #1

Greetings, Feisty Members --The time has come for another Question. This one is specifically for those of us who have already had our big operations. The Feisty Forum has explored this question in various ways in the past, but maybe you have some updates or new ideas -- and no doubt some of the time-honored advice bears repeating. So please respond, if you can, for the benefit of anyone just now on the brink of surgery:What advice do you have for people embarking on major spinal surgery, possibly for the first time in their adulthood? Your answer can relate to any issue, from footwear for PT to handling interpersonal relationships with a range of hospital caregivers to delegating helper-tasks efficiently when lining up your family "support staff."Just a few of the possible issues you might choose to address: What do you wish you had known before your surgery? Did you encounter any

surprises it might be useful to share? What emotions went with you to the hospital? What helped you to deal with any last-minute doubts or anxieties? Were there any personal items you were especially glad to have with you? Were there any items you never needed and could have leftat home? Were you on the general hospital diet, or did you have special dietary requirements (vegetarian, kosher, low-sodium), and in either case,were you satisfied with your hospital meals? If not, were you able to enlist people to bring you frozen yogurt or send out for pizza? How did your PT go? Did the therapist(s) have a good understanding of your specific condition? Did anyone push you to get up or walk too early, andhow did you handle (or how do you wish you had handled) this pressure? Did you have good chemistry with your surgeon? Did he or she keep you informed and remain readily available during the early days? If

your surgeon had to be away at some point, were you satisfied with the post-doc spinal fellows who handled your care in the surgeon's absence? Do you have any hard-won wisdom to share re handling communications breakdowns or misunerstandings at such a vulnerable time? Was the nursing coverage about what you expected, or were there frustrating gapsor delays due to understaffing? Would you advise anyone with discretionary income (possibly a minority of us "early retirees," especially in such uncertain economic times) to hire a private-duty nurse for the first couple days and nights? Who was with you in the hospital--partner/mother/sister -- and how do you feel your chosen companion or "crew" bore up under the pressure? How could things have gone better; what kind of advance planning might have helped?.Well, you get the idea. Thanks in advance for your replies,

fellowfeisties!Best,

May 30, 2011

On Mon, May 30, 2011 at 6:37 AM, <elizabethrgonzalez@...> wrote:

Greetings, Feisty Members --

The time has come for another Question. This one is specifically for

those of us who have already had our big operations. The Feisty Forum

has explored this question in various ways in the past, but maybe you

have some updates or new ideas -- and no doubt some of the time-honored

advice bears repeating. So please respond, if you can, for the benefit

of anyone just now on the brink of surgery:

What advice do you have for people embarking on major spinal surgery,

possibly for the first time in their adulthood? Your answer can relate

to any issue, from footwear for PT to handling interpersonal

relationships with a range of hospital caregivers to delegating

helper-tasks efficiently when lining up your family " support staff. "

One thing I did before surgery was periodically go through my house and pretend I could not bend over at the waist. I spent a couple of months doing this so that everything I would need would be waist high or above after surgery. I rearranged the kitchen cabinets, bathroom, closet, etc. I even started doing things differently like showering and laundry. I used to bend over in the shower to wash my hair so I had to get used to standing under the shower head to do it. I put bar stools next to the washer and dryer and put my laundry baskets on top of the stools. I just had to transfer from the basket to the washer. I had top load machines. My brother has front load machines and there is no way I would be able to use those after surgery. I used my grabber to get the clothes that I could not reach. It drove my hubby nuts to have things sitting out like that and things on top of the kitchen counters but I just kept reminding him that I could not bend and had to be able to do things for myself when he wasn't there.

Just a few of the possible issues you might choose to address: What do

you wish you had known before your surgery? Did you encounter any

surprises it might be useful to share? What emotions went with you to

the hospital? What helped you to deal with any last-minute doubts or

anxieties? We had a 3-hour drive to the hospital. I used my MP3 player to listen to music that I found comforting and calming. When I was at the hospital my surgeon, his assistant, and my pastor were all there to pray with me. I went into surgery a couple of days after attending a retreat with fellow flatbackers. I knew about the central line and I asked the anesthesiologist to put me to sleep before they put in the central line, arranged me on the table, etc.

Were there any personal items you were especially glad to

have with you? Were there any items you never needed and could have left

at home? I took my laptop with me because I wanted to be able to connect with friends and know what was going on with others. My hubby went out and bought a wireless keyboard so that I didn't have to sit up to type on laptop keyboard. For some reason though my eyes were very fuzzy after surgery and I found it hard to read the screen. I could only read for a few minutes at a time.

Were you on the general hospital diet, or did you have special

dietary requirements (vegetarian, kosher, low-sodium), and in either

case,

were you satisfied with your hospital meals? If not, were you able to

enlist people to bring you frozen yogurt or send out for pizza? I don't remember having any problems with my food.

How did

your PT go? Did the therapist(s) have a good understanding of your

specific condition? Did anyone push you to get up or walk too early, and

how did you handle (or how do you wish you had handled) this pressure? The staff on the hospital floor where I was was used to patients with extensive fusions like me. The first time I got up to walk I was too drunk from the morphine so they put me back in bed and waited til the next day. I did have to walk a certain distance with the walker, be able to go up and down stairs, and be able to get into and out of a car before they would release me.

Did you have good chemistry with your surgeon? Did he or she keep you

informed and remain readily available during the early days? If your

surgeon had to be away at some point, were you satisfied with the

post-doc spinal fellows who handled your care in the surgeon's absence? I still have a great relationship with my surgeon and his staff. However because of my drunk reaction to the morphine, they did not give me the long-acting OxyContin so by the time the morphine wore off and I was home, I did not have enough pain control medicine.

Do you have any hard-won wisdom to share re handling communications

breakdowns or misunerstandings at such a vulnerable time? Was the

nursing coverage about what you expected, or were there frustrating gaps

or delays due to understaffing? Would you advise anyone with

discretionary income (possibly a minority of us " early retirees, "

especially in such uncertain economic times) to hire a private-duty

nurse for the first couple days and nights? Who was with you in the

hospital--partner/mother/sister -- and how do you feel your chosen

companion or " crew " bore up under the pressure? How could things have

gone better; what kind of advance planning might have helped?I only had one bad night nurse one night. She refused to wake me up to give me pain meds and I paid for it when I did wake up. If she had still been on duty when I woke up in the morning my hubby would have made her pay for it as well! The hospital I was in has two beds in each room...one for the patient and one for the spouse who is usually the caregiver. My hubby stayed at the hospital the whole time I was there and slept in the other bed. He even refused to leave ICU my first night. Once we got home he could have used some relief to get some sleep. My pain was so out of control that I spent most of my time walking around the house and he was so afraid I would fall he couldn't rest. I remember him yelling at me one time " Would you sit yourself down somewhere so I can get some sleep! " I spent the first two weeks sleeping sitting up on a wooden bench. I could not lie down at all. I would wrap up in a blanket and put my old neck collar on to keep my head from flopping around. We didn't realize I wasn't getting adequate pain control until we went to my local PCP and he prescribed what I needed. Then I was finally able to lie down and sleep.

Peggy

..

Well, you get the idea. Thanks in advance for your replies, fellow

feisties!

Best,

May 30, 2011

On Monday, May 30, 2011, <elizabethrgonzalez@...> wrote:

>

> Greetings, Feisty Members --

>

> The time has come for another Question. This one is specifically for

> those of us who have already had our big operations. The Feisty Forum

> has explored this question in various ways in the past, but maybe you

> have some updates or new ideas -- and no doubt some of the time-honored

> advice bears repeating. So please respond, if you can, for the benefit

> of anyone just now on the brink of surgery:

>

> What advice do you have for people embarking on major spinal surgery,

> possibly for the first time in their adulthood? Your answer can relate

> to any issue, from footwear for PT to handling interpersonal

> relationships with a range of hospital caregivers to delegating

> helper-tasks efficiently when lining up your family " support staff. "

>

> Just a few of the possible issues you might choose to address: What do

> you wish you had known before your surgery?

***I wish I had known in advance that I would need to go to rehab

after leaving the hospital. I wasn't told until it was almost time to

leave the hospital.***

Did you encounter any

> surprises it might be useful to share? What emotions went with you to

> the hospital? What helped you to deal with any last-minute doubts or

> anxieties?

***I was surprised when I didn't end up being able to handle to

immediate post-op period very well. I ended up with extreme anxiety

post-surgery, which caused me to vomit very, very frequently. I wish I

had found a way to deal with those feelings. The hospital wasn't very

helpful on this matter.***

***I had some last minute anxieties, but it wasn't even close to as

severe as the post-op anxiety. I dealt with the pre-op anxiety by

reminding myself that I had thoroughly researched my options and

selected the best possible surgeon.***

Were there any personal items you were especially glad to

> have with you? Were there any items you never needed and could have left

> at home?

***I loved having my iPhone with me. I used it constantly to keep in

touch with family and friends, read the news, and keep up with several

mailing lists that I'm on. It kept me entertained and connected. The

hospital discouraged bringing such items due to the risk of theft, but

it was worth the risk for me.***

***On the other hand, I brought several items that I never ended up

using in the hospital: books, puzzle books, personal care items,

clothes, and just about everything else I brought.***

Were you on the general hospital diet, or did you have special

> dietary requirements (vegetarian, kosher, low-sodium), and in either

> case,

> were you satisfied with your hospital meals? If not, were you able to

> enlist people to bring you frozen yogurt or send out for pizza?

***Once I was permitted to eat again, I did not have any dietary

restrictions. The food was pretty good, and I loved that I could order

whatever I wanted from the menu, at whatever time during the day that

I wanted.***

How did

> your PT go? Did the therapist(s) have a good understanding of your

> specific condition? Did anyone push you to get up or walk too early, and

> how did you handle (or how do you wish you had handled) this pressure?

***I wasn't pressured to walk too soon, and my physical therapists

seemed to be well versed in people recovering from this type of

surgery.***

> Did you have good chemistry with your surgeon? Did he or she keep you

> informed and remain readily available during the early days? If your

> surgeon had to be away at some point, were you satisfied with the

> post-doc spinal fellows who handled your care in the surgeon's absence?

***My surgeon or his assistant came by each day during rounds. But he

always seemed so rushed, so I didn't have much time to ask questions

on most days. I ended up having to ask my nurses most of my questions,

and they contacted my surgeon for the answers.***

> Do you have any hard-won wisdom to share re handling communications

> breakdowns or misunerstandings at such a vulnerable time? Was the

> nursing coverage about what you expected, or were there frustrating gaps

> or delays due to understaffing? Would you advise anyone with

> discretionary income (possibly a minority of us " early retirees, "

> especially in such uncertain economic times) to hire a private-duty

> nurse for the first couple days and nights?

***There were several times when I wish the nurses could handle things

more quickly, but most of them were very nice; and I could tell they

were doing the best that they could. The nurses did seem overburdened.

I'm not sure how a private duty nurse would have worked or whether it

would be worth the money.***

Who was with you in the

> hospital--partner/mother/sister -- and how do you feel your chosen

> companion or " crew " bore up under the pressure?

***My husband stayed with me during most of the first three days, and

then visited 1-2 times per day after that. It would have been nice to

have him there more of the time, but we had a three year old that he

also needed to care for. He did fairly well handling the pressure, but

it did seem to be a bit overwhelming for him. He wished he could do

more to help me, and didn't like seeing me so miserable and not being

able to do anything about it.***

How could things have

> gone better; what kind of advance planning might have helped?

***I wish I had spent more time planning for my post-surgical recovery

at home, such as setting up the house, and planning for more help with

household tasks during the recovery period. I was lucky enough,

however, to have several friends and neighbors who brought us home

cooked meals for 2-3 weeks after I got home from rehab.***

> Well, you get the idea. Thanks in advance for your replies, fellow

> feisties!

>

> Best,

>

*** (almost three months post-op)

June 3, 2011

I felt that quite a few things were invaluable to learn before my big revision.

1. Knowing that my surgeon was very experienced with flatback revisions was

HUGE. I'm happy that I was able to find info leading me to choose Northwestern

Hospital by reading these lists. Otherwise, perhaps I would have either not

found anyone to help me, or (worse yet) I may have found someone who wanted to

use me to practice their revision skills on.

2. Knowing that I had a good support group of fellow flatbackers (and MSers for

me) was huge too. I had over 140 email greeting cards during my 2 weeks in the

hospital. That was a huge emotional booster for me to know that so many people

were taking time to think of me.

3. Knowing to advocate for myself, including the right to refuse to do

something was another biggie. So many people agree to things because " that's

what the doctor/nurse/physical therapist said, and they know more than me. "

That is not always true! I was loopy on tons of pain meds at rehab, but I still

had enough presence of mind to refuse to do something unsafe a physical

therapist (not my regular, but a weekend gal) was trying to make me to. She got

all snippy with me for not cooperating, but my regular PT sided with me when she

returned the next day. After the 2nd or 3rd day in the hospital, I also started

refusing med students to draw my blood. I had stabs from multiple IVs, arterial

lines, and blood draws, that I didn't have a lot of good veins let. I'm all for

letting students get some practice in, but I didn't have a lot of good veins

left after a few of them really botched things up. Sometimes they would get

angry when I refused them, but most of the time it was okay. I also felt

comfortable refusing to take Lyrica after it gave me the worst case of brain fog

I've ever experienced (and MS gives me a lot of brain fog!!).

4. Knowing to take a pillow (or in my case, one of my kids cuddly stuffed

animals) to press against my abdominal incision while coughing, sneezing,

rolling, etc., was a good tip. The pressure really helped cut down on the pain!

5. Knowing to get all my tools before coming home was great advice. I had a

couple of reachers, extra TED hose, a sock aide, potty chair, etc. either

already or lined up to be ready when I got home.

6. Having a few meals lined up would have been really nice. I had a couple of

them brought by friends, but more would have made things easier on us.

7. My hospital diet had no special restrictions. The food at the regular

hospital wasn't bad, but the food at the rehab hospital was awful. I had

visitors bring me in " real " food whenever possible. I also found out after a

week that there was a " special " menu that they don't tell people about, but it

includes more decent selections when the " regular " menu choices were awful.

8. Elastic laces in my gym shoes made it easier to get on & off.

9. I was able to be signed out of rehab and taken out to dinner occasionally by

my husband pushing my wheelchair. I then discovered that Chicago has truly

horrible sidewalks and curb cut-outs!

10. I learned that night staff is often horrible to deal with, and that if you

complain nicely (and have had a good attitude leading up to the complaint), the

staff will take your concerns seriously and work with you to resolve the issue.

The docs will also be more explicit in their orders so that the nurses can't

interpret things the way they decide to see fit.

11. Oh, and I thought of another one, which should be more at the top of the

list! I had a spiral notebook with a pen attached to it (so I could retrieve it

if it dropped) so that I could write questions down as I thought of them. When

the surgeon came by in the morning to do his rounds, I wouldn't forget to ask

him anything. Otherwise, I'd be thinking of something to ask him in the middle

of the night, then forget about it until right after he left my room!

>