Re: I am facing the surgery & I would like to hear

[Guest guest]

Baby, you will get through this, I promise! Scoliosis is hell but we are

stronger than it is. I've had 3 surgeries for it and I'm still here at 52 years

of age. If you need me I'm at dereise1958@... You will learn a new way of

dealing with things but you WILL find the way! Don't you EVER give up!!!

>

>

> about other peoples experiences. My surgeon has told me I will have a ten

inch scar down my back (no biggie, I'm past all my body image stuff), tht I

won't be able to bend at all, except at my hips, he told me about the long

healing time, and, finally, he is very concerned that due to the level of pain

meds I am on that he will not be able to keep my post surgery pain at bay. I am

scared to death to have this done.

> So, if you've had it, please share with me - my private email is

StampinDiva@... - I will reply to all, but it may take a while.

> Thank you so much!

> Christi

>

[Guest guest]

Hi, These are the questions I asked my surgeon before surgery.

 

My experience was excellent.  I'm fused T2 to L5 and have no pain in the fusion

at all.

The key, I think, is to be as physically fit as possible:  I had pool physical

therapy to try to alleviate the pain, but when that wasn't successful, I had the

surgery, but, inadvertantly became physically fit.  I was in the hospital for 9

days, and in rehab for 9 days.  INSIST on rehab.  Some doctors and PT's will

send you home after surgery and it's just inhumane.

 

I don't think you have to worry too much about pain management.  It seems you

have talked to your surgeon about it and that's great. 

 

Print a sign (Yes, I mean it) and tape it over your bed: SCOLI PATIENT.  This

will help make sure that aides and nurses don't move you improperly.  I took

that sign to rehab, too!

 

After your surgery, do absolutely NOTHING for three months!  That means, no

lifting anything weighing more than a quart of milk, no twisting or pivoting,

loading/unloading the dishwasher, doing dishes by hand,

mopping/sweeping/vacuuming, driving... NOTHING!  This will help you fuse

safely--you DON'T want a revision because of a shift in the spine before the

disc spaces heal.  The rods are only helpers. Don't let the nurses/aides make

you twist to get toilet paper in the hospital, either!  That happened to me. 

When I told the surgeon, he was not happy with them.

 

Follow your surgeon's instructions exactly.  For instance, if you have a new

baby/grandbaby, no matter how cute, don't lift her/him.  hahahahaha.  That was

the most difficult temptation for me to overcome!  hahahahahha

 

If you have any more questions, please ask.  Many of us would be happy to help.

Lj  CMT2a2

 

 

To:

Scoliosis Treatment

QUESTIONS TO ASK SCOLI SURGEON

 

How many surgeries for scoliosis have you done before?

Are you a scoliosis specialist?

What do my curve(s) measure?

Would I benefit from a brace? Doctor: No. (Experience: my ‘S’ curve was too

advanced, no braces prescribed helped prior to surgery, including a torso cast I

wore constantly for four

months as a teenager, and a corset as an adult)

What does a fusion entail? Doctor: removing the cushion material between

vertebrae known as disks, making ‘fodder’ using your bone mixed with donor

bone that will be used to take the place of the disks that will harden into

bone, thus ‘fusing’ the vertebrae to each other. (Experience: T2 to L5.)

How many rods will I need? (Experience: I needed 4, two along side the vertebrae

in my thorax

and two along side the vertebrae in lumbar region).

How will you fix the rib hump? Doctor: I’ll remove the 10th rib. (Experience:

10th rib was

removed. NEVER noticed any pain from that, hump is gone)

What do you mean by ‘donor bone?’ Doctor: it comes from a cadaver.

With bone from a donor, will I still have to have the bone graft taken from the

hip? Is there a lot of pain from the graft? How long will it take to heal? Is

the pain bad? Long lasting?

Doctor: yes, a graft will be taken from the ileal crest (top of the hip in the

back) and mixed with donor bone. There may be pain at first, not likely any

long-term pain. Hip graft will take three to six months to heal. (Experience:

bone graft from the crest, my 10th rib which donor bone will be crushed and

mixed together. The hip site never hurt and, according

to the doctor was healed in 6 months. See next question)

Why do I need donor bone? [note: not all people do]. Doctor: you will need a lot

of fodder to

fuse T2 to L5. Not enough can be harvested from the hip and 10th rib.

Can all of my fusion be done from the back, or, is it necessary to do a medial

curve incision to work on the bottom and front of my spine? Doctor: I believe I

can do it all from the back, but, it will be a better fusion if I do the fusion

back and front (Experience: anterior/posterior surgery, that is, back and

front).

I have heard from a gentleman who told me he had six epidurals and none of them

worked. What if mine doesn’t? Doctor: No epidurals, I use general anesthesia

(Experience: general

anesthesia)

How many discs will be removed? Doctor: Can’t tell until I get in there

(Experience: T2-L5,

sparing S1 because it wasn’t ‘too bad,’ and not twisting will make it last

longer)

Will I vomit after surgery, perhaps as a cause of surgical anesthesia? Doctor:

maybe.

(Experience: didn’t)

Will I have to wear a brace? Doctor: a TLSO brace. (Experience: Had a TLSO

brace made out of plastic, a front and back piece held together with velcro,

custom molded and fitted. It was cut down a few days after surgery when my body

swelling went down)

Will I have a breathing tube during surgery? Will it be removed during surgery?

(Experience:

not needed as I was breathing on my own well, and I was physical fit)

Will I have a Foley catheter? For how long? Doctor: yes, during surgery, which

may not be removed for a while after waking up from anesthesia (Experience:

removed following surgery)

What is the difference between Isola instrumentation and synergy

instrumentation?

Do fused spines deteriorate? Doctor: These are mostly for people with older

fusions–20-30 yrs

old.

Blood tests? Doctor: Yes. Blood gasses and pulmonary function tests.

Can blood tests taken recently by my pulmonary specialist suffice? Doctor: yes

(NOTE: It’s VERY important to get a nickel test. One doesn’t want to have

the fusion completed only

to learn a few days later that he/she is allergic to nickel! Procedure: using

surgical tape,

tape an ordinary nickel coin to the inside forearm. If the area turns red and/or

itches, one

may be allergic. A competent surgeon mention and do a test).

Do I need a test for iron in the rods?

How will heat (such as from a heating pad), and cold weather affect the

instrumentation? (Doctor: No heat does not affect surrounding tissue and

instrumentation, and, there is no evidence that cold effects it)

Will ultrasound heat the instrumentation? Doctor: no.

Will I be able to have MRI’s in the future? Doctor: yes.

Is there the option of removing the rods after healing? Doctor: Possible, but

not likely. The option is there. Not encouraged.

What material will be used for rods? How many rods? Doctor: Most doctors use

steel or titanium (Experience: titanium in mine. My doctor said he prefers

titanium because it’s

lighter than steel and less problems from titanium.

I heard that titanium rods are brittle. Are they? Doctor: Well, they are

‘brittle’ in that they

can break sometimes, but they do not break easily.

Tell me about pedicle screws. I’ve heard that they shouldn’t be too long.

Doctor: I use 2 "

pedicle screws. Screws that are shorter than that may not hold the rods to the

vertebrae very well.

Will there be spasms in the muscles after surgery? Doctor: No way to predict

that. Not unusual. (Experience: pain meds took care of all pain for about six

months)

What is phantom itch and how is it treated? Doctor: phantom itch is the healing

of

of muscle and nerve tissue. Cold packs help with that. (Experience: I had

phantom

itch in the shoulder area and cold packs helped a lot. The itch disappeared

after 2 to 3

years. I didn’t have it all the time, or ever day.)

What medicines, if any, will I be asked to discontinue before surgery?

Will I be in a special bed in the hospital? No.

Do I need a special bed at home? No.

Will this surgery decrease kyphosis? (Experience: Rib #10 removed, no kyphosis

now)

Will my abdominal muscles be cut and the belly button pulled to one side? If so,

will it center

itself? (Experience: the belly button was off-center and has not self-corrected)

What is pseudoarthrosis? Can it occur with stainless steel instrumentation?

Doctor: It’s

Non-union, or nonfusion, of the vertebrae by the fusion—this is the main

reason to do anterior/posterior surgery. (Experience: did not have

pseudoarthrosis even after 6 yrs after surgery. I feel this is because I

followed doctor’s orders EXACTLY and avoided it. I was

instructed by my surgeon to do ABSOLUTELY NOTHING for three months after I got

home from rehab, no sweeping, no vacuuming, no loading/unloading the dishwasher,

no making beds, no cleaning bathrooms, picking up nothing that weighed more than

a quart of milk, no driving, iterating DO ABSOLUTELY NOTHING! I watched a lot of

TV, read, talked on the phone, and used the bone strengthening belt that the

surgeon sent to my home prior to surgery 4 hours a day, every day).

What is fusion disease? (Answer: non fusion and fusion problems: See answer

above).

Is pseudoarthrosis and fusion disease the same thing? Doctor: yes

Where will the doctor do his fellow-up if the surgery is not close to home?

If I were to wait about three years before having the surgery, would the

techniques used today be different or better?

What is arthoscopic surgery? Am I candidate?

Will I have hardware screwed into the sacrum/pelvis? (Experience: I have none,

because my

fusion surgery stopped at L5)

What is the expected correction? (Experience: mine was huge, because I was very

flexible and

physically fit from pool therapy and walking)

What is the risk of degeneration to the two lumbar discs below the fusion and

the two thoracic/neck discs above the fusion, if I’m careful. Did you say none

as long as I remain flexible? Doctor: the risk above the fusion is negligible.

Risk to S1 can be minimized to 10 years or so if you don’t twist.(Experience:

no deterioration at all and still not fused to S1, the upper vertebrae are in

the neck are unaffected)

Aspirin allergy? Did you say it won’t matter, that there are other meds we can

use?

Doctor: yes.

What pain medication would you prescribe for me now? Doctor: take prescription

meds as directed. Two weeks before surgery, stop NSAIDS such as aspirin, Advil,

Tums and Rolaids, and take Tylenol instead. (Experience: Stopped Advil two weeks

before the surgery and took

Tylenol. NOTE: NSAIDS thin the blood making clotting difficult, thus making

surgery dangerous.)

What pain medication can I take for pain pre-surgery? Doctor: Take Tylenol for

the two weeks before surgery.

What will be prescribed for my post-surgical pain? (Experience: After surgery I

was prescribed oxycodone, " which is stable, " with delaudid. My pain was

controlled for about 6 months

with these medications, taking them strictly as prescribed.)

What does the doctor mean by ‘stable?’ (I don’t remember his answer.)

Will the brace I wear after surgery restrict my breathing? Doctor: It

shouldn’t. (Experience: not at all)

Will I go to ICU after surgery? Doctor: Only if there are serious complications.

(Experience: I did not need ICU care)

Will I have physical therapy in the hospital? Yes. (Experience: had PT in the

hospital AND

in rehab)

Will I be on a hospital floor with nurses who are familiar with scoliosis

surgery patients? Doctor: Yes. (Experience: I had a handmade-sign, not fancy,

with SPINAL FUSION PATIENT on it and taped it over my bed at the hospital and at

rehab to make sure! I

didn’t want to be moved or rolled incorrectly)

I understand endoscopy spinal surgery is performed on young people. Why are

older people not eligible for this option? Am I a candidate for that?

(Experience: I had long incisions.)

Will the hardware poke out, " showing? " Not a problem. (Experience: no hardware

showed

after surgery or even now. But, the rod on the upper left poked me. I made an

appointment my surgeon and he told me he could cut it down, it would be easy,

but I didn’t have that

done. I learned that when it hurt, the pain was relieved by holding my shoulders

back, and,

that it poked only when I was tired, resulting in more slumping that usual).

Will the parts of the spine that are not fused begin to curve eventually?

What can you tell me about the morphine patch? Doctor: It’s used in and out of

the hospital.

What equipment in the home would you recommend I get should I go through this

surgery? Doctor: This is usually determined by a physical therapist.

(Experience: walker, tub chair, sock puller, reacher, commode, raised toilet

seat, plastic bag on the car seat to make swiveling easier for getting in and

out of the car)

What is the risk of blood clots? Doctor: NSAIDS should be avoided, take extra

iron with

Senna and there should be no problem. There will be a blood test before surgery.

After

surgery, there will be ‘balloons’ on your legs for a few days to counteract

any that may

form. Risk is very small

Will you collapse a lung? Doctor: We may have to, but we re-inflate it before

you leave the

operating room. (Experience: They didn’t have to.)

What is an incisional hernia and how much of a risk is that? (Don’t remember

the answer)

How long will I be in the hospital approximately? Doctor: maybe a week.

(Experience: 9 days)

How long will I be in a rehab center? Doctor: maybe another week. (Experience: 9

days)

Will I be able to take a plane home or should I be picked up by car to go home

to (your state)?

What doctors (from another state) do you work with in (your state)?

Will I go directly to a rehab facility? (Experience: I did. But, in any case, if

the surgeon has not mentioned it, DEMAND IT! It helped me tremendously and the

rehab setting sped me on my way to recovery. My doctor’s resident overheard my

PT talking to the floor supervisor

nurse the last day of my hospital stay saying that I would be discharged in a

few hours and he intervened on my behalf. The PT’s orders were nullified and I

went to Rehab instead).

Will the rods trigger the sensors at the airport? Doctor: Steel, probably.

Titanium, not likely. I'll give you a note to carry with you when you travel.

(Experience: Titanium rods have never set off airport alarms, are ok in MRI and

CAT scan machines.)

From: WickedOne <StampinDiva@...>

Subject: I am facing the surgery & I would like to hear

Scoliosis Treatment

Date: Monday, March 28, 2011, 11:58 AM

 

about other peoples experiences. My surgeon has told me I will have a ten inch

scar down my back (no biggie, I'm past all my body image stuff), tht I won't be

able to bend at all, except at my hips, he told me about the long healing time,

and, finally, he is very concerned that due to the level of pain meds I am on

that he will not be able to keep my post surgery pain at bay. I am scared to

death to have this done.

So, if you've had it, please share with me - my private email is

StampinDiva@... - I will reply to all, but it may take a while.

Thank you so much!

Christi