spinal Fusion

[Guest guest]

-HI I forgot to tell you my dr put in a drain in my back too

afer surgery and took it out the next day. BUT he did it since the

nurses hadn't and if I should have had them do it. He was NOT very

gentle pulling it out and the nurses told me it shouldn't have been

done that way. So make sure the nurses take yours out if you get

one. The first 24 hrs I had so many tubes in me I couldn't get out

of bed till they took several of them out. But that first day on my

feet I was pretty weak, more so than any other surgery I have had.

But it may have been since my surgery was so long and I had my other

things removed that it wore me out so much I don't know. Just be

prepared to take it as easy as possible in the hospital and the

first few weeks when you get home. Cause you won't feel up to doing

much at all for at least a couple of weeks. Sharon Group Owner

-- In neck pain , " wikaway " <wikaway@...>

wrote:

>

> Sharon,

>

> Thanks so much for responding! The fusion will be done from the

front and the back using

> screws and rods. How was yours done? I am a little concerned the

surgeon said the

> surgery time will be 6 hours and I'll spend 5 days in the

hospital. Sounds pretty rough

> from what he was saying. Was this your experience too? I am just

very concerned about

> after the surgery, when I am home. How far you can bend, things

like that. I just don't

> want to go through this again. Has the fusion helped your pain?

This is what I am hoping

> for the most along with increased activity in the long run. I

appreciate any info you care to

> share.

>

> Thanks,

>

>

[Guest guest]

hi julie,

my niece was in surgery for about 4 or 5 hrs.

alana

>

> hiya i have a 8yr old with sma type 1 & 2 she is due to have her spinal

fusion next yr i have read all the emails on sma friends and am gettin

abit worried plz can anyone tell me how long the operation is tx julie

>

[Guest guest]

> >

> > hiya i have a 8yr old with sma type 1 & 2 she is due to have her

spinal

> fusion next yr i have read all the emails on sma friends and am

gettin

> abit worried plz can anyone tell me how long the operation is tx julie

> >

>

thanx alana how is she now as she lost any movement

[Guest guest]

> >

> > hiya i have a 8yr old with sma type 1 & 2 she is due to have her

spinal

> fusion next yr i have read all the emails on sma friends and am

gettin

> abit worried plz can anyone tell me how long the operation is tx julie

> >

>when shannon first had her rods put in she was down there 6 hours it

took them 2 hours to put all the lines in

[Guest guest]

In 1975 - it took 7 and a half hours for my spinal fusion surgery mainly

because they placed a pelvic rod support at the base of my spinal rods. I had

one long one on the curved side of my spine and a shorter one on the

protruding side pushing the curvature to straighten up. Both were growth

rods.

Angie

On Friday 13 October 2006 17:19, Alana wrote:

> hi julie,

>

> my niece was in surgery for about 4 or 5 hrs.

>

> alana

>

>

> > hiya i have a 8yr old with sma type 1 & 2 she is due to have her spinal

>

> fusion next yr i have read all the emails on sma friends and am gettin

> abit worried plz can anyone tell me how long the operation is tx julie

--

Angie

Please visit my favourite websites:

for Ford Model A enthusiast

http://www.recap.on.ca

a memorial website of my father

http://www.roybebee.ca

The Monarchs (50's & 60's band my Uncle plays in)

http://www.the-monarchs.ca

a chapter of Model A Owners of Canada Inc

http://www.trilliumchapter.ca

an electric wheelchair hockey league

http://www.cewha.ca

[Guest guest]

I had rods put in when I was 8. The operation took 8 hours and I ended up with

fluid surrounding my lungs, causing pneumonia. I don't regret it at all though.

I'm 19 now and am very thankful for them.

-Tonya

[Guest guest]

she was about 9 years old when she had the surgery...she will be 13

this month. she has lost some mobility but, honestly, it's hard to

tell what is just the normal progression of SMA. within hours after

her surgery (at stanford) they sat her up for a few minutes and she

went home after 2 or 3 days. very fast recovery. her head teeters,

but it did before, so she depends on a head rest. she has very

limited arm mobility...i noticed in the last 2 years that mom and dad

always feed her, when before it was sometimes. i don't think this is

a change that was caused by the spinal surgery. she types on her

computer using a regular mouse and an on-screen keyboard. her

breathing capacity and vocal volume definitely increased after

surgery. now, about the same age it happened for me, she is showing

signs of needing ventilation, so after the new year she will begin

trying different nighttime ventilation options before there is a

crisis.

it's definitely scary to lose strength as the result of a surgery. i

was afraid of this before i had my supra pubic catheter placed. i

was only in bed one day, though, so no problem. my 2nd surgery,

having kidney stones removed, kept me in bed for 4 days, but i still

made a full recovery. for me, things that seem to reduce my mobility

are more often either the fatigue from a bacterial infection or the

side effects from certain medications. for example, bronchial

dialators such as albuterol wiped me out. fortunately, after a long

period of illness, i regained my strength when i switched to

acupuncture and chinese herbs for my respiratory problems.

it's different for everyone, but for me the most important things

have been to be as active as possible (use it or lose it faster) and

to acknowledge that it is normal for me to grow weaker over time.

instead of worrying about my ongoing and inevitable loss of strength,

i try to honor my saddness about it without dwelling on it, and spend

more energy on figuring out how to do things in another way. for

example, in high school i used to touch type with 2 hands at 55 WPM.

in my twenties i learned to touch type with one hand and 2 fingers at

35-50 WPM. at age 34 and 35 i experimented with voice recognition

software and hated it so kept gimping along hand typing while i

continued to research computer input options. at 37 i fully

transitioned to using a mouse (or a trackball when i'm in bed) and an

on-screen keyboard with word prediction capability. at age 40 i'm

typing at 35 WPM using these tools, expending less energy than

before, and i'm making a living doing it.

i guess my point is, losing strength hasn't been horrible. i suspect

that overall the surgery will help your daughter's lungs stay

stronger, and that her and her loved ones' creativity will be the

most important factor in enabling her to do what she wants to in

life. honor the fear and saddness about loss, but keep moving

forward.

warmly,

alana

> thanx alana how is she now as she lost any movement

>

[Guest guest]

>

> > thanx alana how is she now as she lost any movement

> >

>i would just like to say thank you for all your pespones

[Guest guest]

Great recovery she had, I will make my Spinal fussion next 10th

november and I hope I goin home fater than she does...

Felipe

Ps.: I'm gettin' great informations here

Quoting Alana <alrt@...>:

> she was about 9 years old when she had the surgery...she will be 13

> this month. she has lost some mobility but, honestly, it's hard to

> tell what is just the normal progression of SMA. within hours after

> her surgery (at stanford) they sat her up for a few minutes and she

> went home after 2 or 3 days. very fast recovery. her head teeters,

> but it did before, so she depends on a head rest. she has very

> limited arm mobility...i noticed in the last 2 years that mom and dad

> always feed her, when before it was sometimes. i don't think this is

> a change that was caused by the spinal surgery. she types on her

> computer using a regular mouse and an on-screen keyboard. her

> breathing capacity and vocal volume definitely increased after

> surgery. now, about the same age it happened for me, she is showing

> signs of needing ventilation, so after the new year she will begin

> trying different nighttime ventilation options before there is a

> crisis.

>

> it's definitely scary to lose strength as the result of a surgery. i

> was afraid of this before i had my supra pubic catheter placed. i

> was only in bed one day, though, so no problem. my 2nd surgery,

> having kidney stones removed, kept me in bed for 4 days, but i still

> made a full recovery. for me, things that seem to reduce my mobility

> are more often either the fatigue from a bacterial infection or the

> side effects from certain medications. for example, bronchial

> dialators such as albuterol wiped me out. fortunately, after a long

> period of illness, i regained my strength when i switched to

> acupuncture and chinese herbs for my respiratory problems.

>

> it's different for everyone, but for me the most important things

> have been to be as active as possible (use it or lose it faster) and

> to acknowledge that it is normal for me to grow weaker over time.

> instead of worrying about my ongoing and inevitable loss of strength,

> i try to honor my saddness about it without dwelling on it, and spend

> more energy on figuring out how to do things in another way. for

> example, in high school i used to touch type with 2 hands at 55 WPM.

> in my twenties i learned to touch type with one hand and 2 fingers at

> 35-50 WPM. at age 34 and 35 i experimented with voice recognition

> software and hated it so kept gimping along hand typing while i

> continued to research computer input options. at 37 i fully

> transitioned to using a mouse (or a trackball when i'm in bed) and an

> on-screen keyboard with word prediction capability. at age 40 i'm

> typing at 35 WPM using these tools, expending less energy than

> before, and i'm making a living doing it.

>

> i guess my point is, losing strength hasn't been horrible. i suspect

> that overall the surgery will help your daughter's lungs stay

> stronger, and that her and her loved ones' creativity will be the

> most important factor in enabling her to do what she wants to in

> life. honor the fear and saddness about loss, but keep moving

> forward.

>

> warmly,

> alana

>

>

>

>> thanx alana how is she now as she lost any movement

>>

>

>

>

>

[Guest guest]

shriners hospitals do these surgeries on a daily basis, so find a state with a

shriners

From: Marina <mpaskina@...>

Subject: Spinal Fusion

Date: Thursday, April 1, 2010, 10:49 AM

 

Hello everybody!

My friend, who also has SMA 2, needs to have spinal fusion. She lives in Russia.

Russian doctors don't make such surgeries for people with SMA. So she is in

search of foreign clinics, where doctors will manage to help her. Please, advise

us and give contacts of clinics in the USA, where she could have spinal fusion.

[Guest guest]

Of course there are also clinics here in Europe (and Finland) who do

that. No idea how much it would cost.

- Venla

2.4.2010 18:13, Kim Winward kirjoitti:

>

>

> shriners hospitals do these surgeries on a daily basis, so find a state

> with a shriners

>

>

>

> From: Marina <mpaskina@... <mailto:mpaskina%40mail.ru>>

> Subject: Spinal Fusion

> <mailto:%40>

> Date: Thursday, April 1, 2010, 10:49 AM

>

>

>

> Hello everybody!

> My friend, who also has SMA 2, needs to have spinal fusion. She lives in

> Russia. Russian doctors don't make such surgeries for people with SMA.

> So she is in search of foreign clinics, where doctors will manage to

> help her. Please, advise us and give contacts of clinics in the USA,

> where she could have spinal fusion.

>

>

[Guest guest]

this is wonderful news. I also had wonderful results for my first three

surgeries. I was up and about in hours also. I did very well and went back to

surgery in a very short time also. But after the 4th. surgery I did not get

better I got worse they took the metal out in 5 years and I went downhill after

that until I ws diagnosed with Arachnoiditis. I am now seeing a pain doctor and

taking methadone daily but my problems started in 1970 when I was only 20 I am

now 60 so through the years maybe if I had taken better care of myself the

outcome may have been a lot different.

What I am trying to say is although you feel good now please take care of

yourself. Go to therapy id your doctor suggests it and be very careful about

lifting and bending so when your my age you will be a lot better off than me.

Janice

Spinal fusion

I was up walking down my hospital corridor a few hrs, after surgery....Of

course I was very drugged on pain medication..lol..It took me a year to get my

strength back, Now I do my normal things I did before...(housework,etc...I still

take hydrocodone ,10/325, 3xday for soft tissue pain and arthritis pain in my

hips and knees...what takes getting use to is not being able to bend certain

parts of my back or to twist around the way I did before>>lol..but; it was worth

it if I had to do it over ,I would!..I never wore the back brace that one

usually wears, after Spinal Fusion....over-all, I'm doing really well...

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23:34:00

[Guest guest]

I am 68,yrs. old..I was 67 when I had the surgery.....the only back surgery I've

ever had.... The spinal fusion , has made a " newer " person of me..lol..I still

have arthritis in my hips and spurs in my knees..........As long as pain meds.

help, there will be no surgery..but; if it comes down to surgery to keep me

" going " , lol.....I would have it...

flwrchld68@...

julie mishak <flwrchld68@...>

[Guest guest]

Unfortunately, I probably don't have any immediately relevant advice. My spinal

surgery was performed a little more than 38 years ago. I'm sure that procedures

have changed a great deal since then. On the bright side, 38 years is a long

time, so I feel confident in saying it was a success. I hope I didn't jinx

myself in declaring it worked.

Best of luck to you and Brett,

T.K. Small

>

> Looking for advice on kiddos getting spinal fusion too early. When Brett

started his surgeries, I had a whole notebook full of advice that I cannot seem

to find now that I need it. I want to say that I remember lots of people that

had issues with rotating of the spine or crank shafting as they got older. If

this is the case for anyone, would you mind responding.

>

> Our situation: Brett had growing rods put in his back in 2007. He had 4

lengthening and has not had one since 2009. Now they want to just leave his rods

in and be done with it. Apparently, the new thing to do is to not do a fusion on

immobile patients. I am not sure what to think of this. Brett would like 1 more

surgery because he wants to be as tall as he can be. I thought crank shafting

was an issue when fused too early and if that is the case, than I think one more

surgery needs to be done too. I don't think they will do one just because Brett

wants to, so I want to go in to our appointment in April armed with lots of

information. Thanks!

> Kristal- Mom to Brett- SMA II- 12 years old

> Visit Brett @ www.our-sma-angels.com/brett

> OR www.caringbridge.org/visit/brettwilson

>

>

[Guest guest]

That is a great reply. At 47 with SMA II-III, I went through same things as

you did with my appendix and anesthesia and also post surgical infections. I

wish I had the options of growing rods as I also came from a tall family at

age 12, I was 5 ft and 4 inches and dropped to 5 ft. 2 inches.

From: [mailto: ] On

Behalf Of ellynpeace@...

Sent: February-03-12 5:38 PM

Subject: Re: Spinal Fusion

Like so many here, my rods are " old school " , having been put in 40 years ago

at the age of 7. I come from a tall family

(mom = 5'7 " / dad = 6'2 " / sister = 5'8 " / brother = 6'4 " ), but I turned out a

respectable 5'2 " . While I can definitely understand your son wanting to

reach his full height, I would really weigh the possible inches vs. the

possible complications of surgery and anesthesia. One complication for me

was a ruptured appendix that almost killed me. That came from my body trying

to cope with post-surgical infection. Each surgery for me has come at a

price, so now I weigh every procedure carefully and if it isn't necessary, I

don't do it.

Just another perspective to consider. Hope you get the info you need!

>

> From: Kristal <kkoehler47@...>

> Subject: Spinal Fusion

> " SMA Friends " <

<mailto:%40> >

> Date: Thursday, February 2, 2012, 7:53 PM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Â

>

>

>

>

>

>

>

>

>

> Looking for advice on kiddos getting spinal fusion too early. When Brett

started his surgeries, I had a whole notebook full of advice that I cannot

seem to find now that I need it. I want to say that I remember lots of

people that had issues with rotating of the spine or crank shafting as they

got older. If this is the case for anyone, would you mind responding.

>

>

>

> Our situation: Brett had growing rods put in his back in 2007. He had 4

lengthening and has not had one since 2009. Now they want to just leave his

rods in and be done with it. Apparently, the new thing to do is to not do a

fusion on immobile patients. I am not sure what to think of this. Brett

would like 1 more surgery because he wants to be as tall as he can be. I

thought crank shafting was an issue when fused too early and if that is the

case, than I think one more surgery needs to be done too. I don't think they

will do one just because Brett wants to, so I want to go in to our

appointment in April armed with lots of information. Thanks!

>

> Kristal- Mom to Brett- SMA II- 12 years old

>

> Visit Brett @ www.our-sma-angels.com/brett

>

> OR www.caringbridge.org/visit/brettwilson

>

>

>

>