Sacrum fusion

[Guest guest]

I am fused to S-1, a total of 15 vertebrae fused one year ago October. My

curvature was measured at 94 degrees. I was in a brace for six months. Having

the sacrum fused isn't so bad. Yes, I have more limited ability to pick things

up off the floor and tie my shoes. But those things can be accomplished in time.

I can unload the dishwasher by doing leg squats. I have some trouble getting all

the clothes out of the dryer, but I use a reacher/grabber for that. I have some

trouble making up the king-sized bed because I cannot get the bottom fitted

sheet over the corners. So I get down on my knees to do the job (or get help

from my husband). That way I am not trying to bend and lift the mattress (when I

shouldn't). I have a raised sink in the bathroom, but still need to do some leg

squats to wash my face and brush my teeth. I no longer wear panty-hose because I

can't get them on. I am extra careful when driving the car, especially when

making a freeway entrance because I can't turn my body to see. I have difficulty

visiting with someone who sits next to me on a sofa or bench because I get a

stiff neck trying to look at them. So I often position myself in a chair across

from them so that I don't have to turn.

You will have to do your physical therapy diligently and get your legs and

thighs very strong. Strengthening the stomach/core is very difficult. But I'm

still working on it.

I have some difficulty tying my shoes now and I often use a long handled shoe

horn to get my shoes on. I still use the " log roll " when I turn over in bed. I

often get down on my hands and knees to get into a low cupboard. Getting back up

means my legs have to be strong. That's where the daily walking comes in. I have

written before that I have hiked in the Mammoth Lakes area 9 months post

surgery. Today I sang in a Christmas Concert at church and was standing for at

least two hours. My back didn't hurt. My feet hurt! But my back did not. So you

can see that leg strength (at least for me) is essential.

Having my sacrum fused has never held me back. The only issue I had in recovery

had to do with blood clots, which I had in my right leg and lungs. It took me

awhile to recover from that. And my vascular surgeon told me to " keep walking " .

He said " I want you to be walking 3 miles the next time I see you. " At first I

never dreamed I would be able to do it. But within 6 months, I was walking 3

miles.

The nicest thing to hear now is when people say, " you have the nicest posture. "

And when people give me a nice little hello hug, I don't worry about them

feeling my " hump " anymore.

Patti

Re: Re:Cranial-Sacral work

Thanks for asking. I really don't know about my mobility yet; I need more time

with my physical therapy. Apparently my MD doesn't usually start PT until 3

months out; I begged to get it early.(It seems like you could get some bad

habits without PT to help oversee you.) I really have issues with my left

piriformis muscle, bascially the same issues I had before surgery; it spasms and

causes the severe sciatica. I can see now that the sciatica didn't come from my

back; so I still have pain. It is , however, decreasing over time and I have

hopes that with good therapy that it will go away. My back was so unstable that

I couldn't even address my piriformis problem. I had become so limited in what I

could do before surgery that I have to think that having L4-5, and S1 fused

won't be that big a deal once I have time to mend. And which came first, my

piriformis responding to my weak back, or my back causing my piriformis

problems? Any way, I have hope. And my

pain level is way

down. I just need to increase my muscle strength in my back. As you can

imagine, the muscles and tendons are all confused because I had a 40 degree

curvature that was corrected.

Debbie

<laurakudzublossom (DOT) com> wrote:

Not me. Glad that you've found something that is working so well for

you. How are you doing with your recovery from surgery? I hope very much

that it has brought you some pain relief.

Do you think you will lose much mobility with the lumbosacral joint fused?

--- " debbie brickley " debbiebrickley wrote:

Do any of you folks out there have any experience with cranio-sacral

therapy? My physical therapist also specializes in cranio-sacral

therapy, and is starting to use this as part of my physical therapy. So

far, I LOVE it. I am beginning to wonder if all my scoliosis problems

and other physical symptoms of pain and tenderness might be a result of

my first cranial vertebrae being out of alignment. I have known this for

a long time and have had other therapies to adjust my neck. But my

physical therapist is talking about energy flow from my cranium to my

sacrum, and I have known for years that that is impaired by my

scoliosis.Now, after my back fusion, L-4, S1, it is impaired even more.

Just wondering what someone might have to say about this.

Thanks

Debbie

[Guest guest]

I am also fused to S-1, however I have had no problems with this area

of my back when it comes to my daily activities. I was always very

flexible (surprisingly so) with strong legs. So for example, if I was

laying on my stomach on the floor, I couldn't put the bottom of my

feet on the top of my head. This might sound odd but this was a very

comfortable position for me before my fusion. My body doesn't bed

backwards THAT way any more, but that doesn't affect my day to day.

After surgery, I remained flexible with strong legs so maybe that

helps to compensate for the most part. Sometimes I overextend and I

have a " popping " in all of my joints, but also where I was fused which

I found a little strange. When the " pop " comes where I was fused it

can be extremely painful. Other than that, all of my pain is from my

the edge rib cage and up (which coincidentally is where I am not fused

and have not been treated). In short, I don't have problems bending

forward really, but I can't bend backward.

Also, the cold can be brutal on the area as a whole. I don't know if

this is specific to that region or all fusions. Keeping the area warm

is very important, otherwise I get a dull ache that's a real pain in

the.... oh wait (pun intended!)

[Guest guest]

Patti,

You went into such detail with your range of motion &

how you deal with it. I just had to smile because I

incorporated everything you described into my life so

long ago that it's second nature now & I don't even

give it a thought.

I had my surgery at age 11 (30 yrs ago) & wore a brace

23 hours a day for 4 yrs prior, so my actual age of

limited mobility began at age 7. It's no wonder that

all of the modifications you listed are natural

motions for me by now, huh? lol

The log roll, hands & knees for low cabinets, unable

to turn when driving so I use mirrors, uncomfortable

& /or difficult to talk to person on the side so I

position across, etc.

My legs are lethal weapons, in my opinion. They do all

the work my back cannot do. The squats are lifesavers

in compensating for daily activities that require

bending & twisting. I began bicycling in elementary

school & have kept it up, so that's a great leg

builder. I added walking in my 20s. In my 30s I did

step aerobics, water aerobics, & nautilus. Of course,

now that's been reduced to only walking due to the

pain, but at least I CAN walk & there was a time when

that wasn't possible. Honestly, every step I take I am

thankful for.

Ppl have always commented on my perfect posture. I

always thank them, but laugh because it's hard not to

have perfect posture when you've got a rod running the

length of your back. lol In my younger years ppl

thought the manner in which I picked up things

(squat/bend knees to get down to object instead of

bending over to pick it up) was odd. Now, everyone

envies me because these days they now know that

knealing down is the correct way to pick something up

& to lift with your legs. They will still bend over

out of habit while I am using my legs out of habit.

The coolest thing that just made me smile so huge &

want to give you a hug was the disappearance of your

hump! That's the only thing that gives me pause:

someone reaching out to pat me on the back & being on

the side that they pat the hump, or someone hugging me

& feeling the hump. This is only with ppl who are mere

acquaintances that is bothers me because all my

friends know I've got a hump. You'd never notice it

with my style of dress, so a lot of ppl don't know.

Also, I don't complain or draw attn to it, so why

would they know?

Congratulations of getting over that hump!!!!!

~Moonbeam

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[Guest guest]

Thanks to those who commented on this. Though I do not feel it is time

for a 2nd surgery yet, it does seem an inevitability with my lateral

listhesis slowly increasing & the stenosis getting worse. Right now I

am dealing quite well... IF I could just remember not to bend over!

Good heavens that is a hard habit to break. It will come in time.

The thing is that right now I know I shouldn't bend. It either sends

shooting pains down my leg or all the bending builds up & attacks me

later in the day. Yet if I can only accomplish something by bending

then I can still choose to do it. That might go away with a fusion. So

when surgery comes I would be facing the do I or don't I let them fuse

L5-S1.

Do you think there would be enough range of motion to turn & look at

things if I am only fused from T10-S1? Right now I am congenitally

fused at L4-L5 & autofused T10-L3. That leaves L3-L4 unfused where the

listhesis is & L5-S1 which is the only normal part of my lower spine.

For me reducing the curves is impossible since it is already fused in

place.

[Guest guest]

Patti,

You did a good job in your prior post of explaining things. I think

for me it is a psychological thing. How much am I going to have to

give up at age 44 in a family where women routinely live into their

90's. (Likely not really that much. There's always work arounds.) What

impact will it all have on my upper spine & neck, not to mention

family & friends? (Now that latter is a real concern.) Not that there

is any point in worrying & actually I very rarely do. I know how lucky

I am. It is just that once one starts pondering this stuff it is a bit

daunting.

Pain isn't the real reason I would have surgery, at least not the

level of pain I have now. Mine is so minor compared to other people on

the list. It is the serious threat of permanent nerve damage that is

likely to make me finally have that 2nd fusion. We'll just take it as

it comes & deal with whatever has to be dealt with.

--- " Patti " <pattijohnson@...> wrote:

> I have tried in a recent post to indicate how I get " things "

accomplished now that I have a fusion to S-1. I was glad to see that

" Moonbeam " supported my views that strong legs are the answer to our

mobility problems. Bending at the sacrum is hard on everyone, even

those who are not fused. That is why we are told to bend and lift with

our knees. There is a price to pay when we don't.

[Guest guest]

A lot of people don't realize that with a high degree

of curvature that your rib cage is basically sitting

on your hip bones. I'm glad you mentioned it.

One of my favorite massage therapists has me lie on my

side and massages me by basically squeezing my waist.

OOOHHH, it is heaven! I was greatly surprised by this

because no one had ever done that before. After he had

worked on that area for nearly an hour he was able to

touch me on my right hip area - an area that no one

has been able to touch because the nerves never healed

correctly from where the bone was harvested for the

graft. Unfortunately, I can't convince my regular

therapist to do this...and my regular is a female &

just doesn't have the strength in her hands.

I guess the muscles in that area are just continually

stressed from the way my back is situated. Since they

are constantly pulled & /or in spasm, it affects the

whole right hip so that you can't even touch it.

Does anyone else have a problem in the bone harvest

area?

Does anyone else's hump hurt? By the way, this same

guy massaged my hump (like kneading bread) while I was

lying on my side & that helped a lot, too.

Most of my pain is in the lower part of my spine, like

a lot of ppl who post here. It's due to taking all the

stress from the fusion & hardware up above. Mention

sacrum here & everyone knows! Talk about it to the

general population & you get 'huh?'

I've discovered of all the girls I went to school with

who had scoliosis, they were corrected to a degree

that they didn't have humps. Perhaps their curves

didn't have the rotation mine does? I've lost touch

with all of them. They had their surgeries in the last

part of jr high school while I had mine in 5th grade.

My curve was diagnosed when I was 7 & I had surgery by

age 11 to stop the progression. It was going like

wildfire in spite of the Milwaukee Brace. ~Moonbeam

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[Guest guest]

I thought this was funny when I heard it, and since

we've been talking about the importance of leg

strength: from the mid 90s movie " To Wong Fu:

Thanks... " - " I've got more legs than a bucket of

chicken! " Not medically related, but good for a laugh

which always helps the endorphins.... ~Moonbeam

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[Guest guest]

Dear Randie,

Many hospitals have chair/beds in the room for overnight arrangements during

scoliosis surgery stays. Ask your surgeon. It's not the most comfortable

bed but it will do. My husband stayed with me that week and took showers in

the adjoining bathroom. He also got the staff from flipping on the lights at

2:00 a.m. to change the garbage can liner. Worked for me!

Jolene

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