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titaniumed
04-01-2010, 04:31 PM
Here are some pics that will show how far I can twist with a T2-pelvic fusion.
I also have pics of my rib hump, which is now much less. I still have about 30 degrees rotation in my vert, verified by my cts. My hump was much worse before my surgeries.

Hopes this gives some idea as to limitations after a full fusion.

(Attached re-take photos below from Sept 8, 2018) (Lost originals photos due to software updates)
Ed

Pooka1
04-01-2010, 04:48 PM
Ti Ed,

The sitting photo especially seems to defy physics. Your shoulders are rotated more than 45* w.r.t. your hips. That means you are able to rotate your shoulder girdle significantly around from your hips.

I guess I never realized that was possible with your fusion.

Amazing.

tonibunny
04-01-2010, 04:55 PM
Those are absolutely amazing photos Ed. Seriously, wow. I'm fused T1-L4 and with the amount of physical activities I enjoy, I'm resigned to the fact that I may possibly end up being fused to the sacrum when I'm older. It's never worried me a great deal because I know how active people with sacral/pelvic fusions can be, but these photos make me worry even less :D

jrnyc
04-01-2010, 04:58 PM
wow...that's so amazing, Ed...very unexpected, as Sharon said...

i have a question...before your surgery..did your shoulder blades ever bother you while sleeping...like, feeling really uncomfortable when you were laying on your back or side...kinda' like they were poking up and hurting...this has been happening with me lately..& thoracic was at only 40 degrees october 2009...i will see scoli surgeon april 12...
every surgeon i've seen, including dr anand in january, said fuse T11-S1 and L4-sacrum..now i'm thinkin' thoracic could present problems later on by not being included in fusion.......

anyway..i think your back looks incredible....and how much you are able to twist...well, chubby checker would be soo proud...whoops...bet he was "before your time" :)

jess

RitaR
04-01-2010, 06:11 PM
Absolutely incredible photos - inspiration to everyone here with a full fusion. Me being one of them.

doodie
04-01-2010, 07:10 PM
I think the photos are great Ed and I believe they will be so helpful to so many on here, especially those considering a long fusion.

You seem to have covered the bases here - but I still like the photo you posted (last year maybe?) of you balancing on the front tips of your skis and your poles... :cool:

That one still mystifies me!!!

Pooka1
04-01-2010, 09:48 PM
And another thing...

I note you can bend pretty far forward.

In general it doesn't appear that you are limited in any way from the photos.

You have a very straight back... you might consider dressage... posture is everything. :)

Suzy
04-01-2010, 09:48 PM
Hey Ed!!

GREAT idea to take and post those pics! You really should have included one of your cute little face so everyone can see what the comedic genius on the forum looks like~

Glad all is well in your little corner of the world! Suzy

titaniumed
04-01-2010, 11:13 PM
Sharon,
Actually about 10 degrees is the pelvis twisting on soft tissues.(My ass) The legs adjust accordingly. The rest is in the shoulders, which are not attached by bone, that’s the soft tissues stretching. The ribs are fixed and don’t move.

It is not like wearing a full hard brace. It is much easier to deal with.

Tonibunny
You are welcome to use the write up and pics on SSO if you like. Just say Im a fused bloke from the states! LOL

Jess
No I never had problems with sleeping, or had rib problems. I will be waiting to see how your visit goes on April 12th.

Rita
You are a month out. I cant wait to hear how you are doing in the future. With the pain that both you and I were in, you should be doing fantastic here in the near future.....

Julie
I will do a correct tip stand and post the pic for you this weekend. I wasn’t quite strong enough last year, and those pics were done 10 minutes after I rode the chair up, I was a little wobbly.

Suzy
Yeah, no face. Kinda kinky huh?
LOL
That was done real quick with a phone, down at work.
Lets go skiing, get up here quick, the snows a melting.
Its not like we will be doing any 215 footers...
Ed

tonibunny
04-02-2010, 07:49 AM
Ed, thanks tons! I will post these on SSO, they'll be very reassuring for a lot of people there :)

RitaR
04-02-2010, 09:33 AM
What a picture! I'm impressed.

foofer
04-02-2010, 09:37 AM
Ed

This was really nice of you to do!

titaniumed
04-02-2010, 10:44 AM
Rita

That’s not me, that’s Julian Carr out of Salt lake City. He specializes in insanely high forward flips, and lands them all on his back. He reaches terminal velocity oh, probably at around 70 feet and you cannot land them on your legs. He has a titanium leg, so lands them on his back with a backpack filled with foam.

When Sally started skating, I suggested the foam filled backpack for protection. I knew about this from Julian.

Here is a vid that shows what its like. You don’t see this every day.
Ed

http://live.tetongravity.com/_Julian-Carr-It39s-Called-Fun/video/925369/75233.html?b=

Doodles
04-02-2010, 10:44 AM
Ed--
Thanks for these pictures as a point of comparison for me too.
(The man with no face is shrouded in mystery!) Janet

debbei
04-02-2010, 12:22 PM
What a man Ed. I was going to say, you can sure twist more than me. And then I stood up, kept my feet planted still, and twisted from the hips. Maybe I didn't get quite as far as you, but I did surprise myself.

I was also disappointed that we didn't get to see your smiling face. And that video of 'FUN', OMG I just about got nauseous.

Thanks for showing me that I can do more now than I thought!!

loves to skate
04-02-2010, 03:34 PM
Thanks for the photos Ed. Even with a shorter fusion than you, I can't twist quite that far. Probably a little arthritis in the rest of my spine. That foam pack probably wouldn't help me if I landed on my bum (polite term for ass).

Sally

titaniumed
04-03-2010, 12:53 AM
Debbe

You know when I went through PT on my arm, I realized that all the "arm" exercises and motions helped considerably. They have the "arm bikes" ? I don’t know what you call them, but you know, the ones that you pedal with your arms. It was also great for cardio, without killing the back.

Im sure skiing helped me out. Most would think that skiing would exercise the legs more, but it is also an upper body workout. When the cross country skiers in the Olympics "drop" after crossing the line, that’s tired! I have done an incredible amount of "pole work" in my lifetime.

Maybe that has something to do with it.

Sally,

Looks like you need to switch sports. If you specialized in insanely high jumps like Julian Carr, you could land them on your back. LOL

I am amazed that these guys are going so high lately. I did my share of 50 footers, but these guys are nuts at 200 plus feet. I did trigger my sciatica doing jumps years ago. From that point on, it’s a long long story......This bird has his wings clipped.
Ed

debbei
04-03-2010, 10:11 AM
Ed,

yes I did the Arm Bike at my PT for both my back and my frozen shoulder. It was great. I think what has helped my shoulder/arm mobility even more lately is my zumba classes. I can do things there that I never thought possible. Yes--even me fused from T3 down can do a decent shimmy. :) You're absolutely right when you mention that just because our spines aren't fused we can't have great range of motion with the upper back and shoulders. In the beginning (after surgery but before PT), I thought it was all connected up there and I was pretty much imobilized. Boy did I learn a thing or two. It just goes to show how much our bodies compensate.

I had to LOL at the 'Pole Work' comment. :D Ed--I never would have guessed. ;)

Tall Paul
04-03-2010, 01:12 PM
Amazing how well you can twist. Thanks for sharing.

titaniumed
04-04-2010, 03:46 AM
I went skiing yesterday, and I don’t want to say exactly how hard I've been skiing, but I'm keeping up with the boys....please don’t ask who the boys are.

I just cannot believe how well this has turned out for me.

There is a lot to be thankful for...
Happy Easter.
Ed

rohrer01
04-04-2010, 10:35 AM
Thanks! It takes the SCARE out of surgery for a lot of us, I'm sure.
:)

golfnut
04-13-2010, 09:10 PM
Ed,
Your pictures give me hope that I still might be able to have a decent golf swing following surgery. My surgery is scheduled for Nov. 1. I will be fused from T-4 to the sacrum. Every day I play golf now, I think about how much twisting and stress on the spine there is. Thanks for posting the pictures.
Karen

titaniumed
04-14-2010, 12:04 AM
Hi Karen

Welcome to the forum.

You should be able to play golf. Driving a ball to the moon will not happen. I could play baseball, but I wouldn’t be able to hit one out of the park. I don’t think I would have any other issues with the rest of the game.

Adaptability is key in scoliosis surgery. In the beginning, certain things can be trying, but after some time passes, things get easier. I was hitting my head every single time getting into my car for a month, till I finally perfected the motion. I grew 4 inches, from my waist up, and had to lower the seat in my car a little.

With my skiing, I had to adapt and adjust. That’s expected. You will do the same with your golf game....

How bad are your curves?
Ed

golfnut
04-14-2010, 02:16 AM
Ed,
I'm sure I'll have to make some swing changes. Next summer, I'll only be chipping and putting, so maybe my short game will improve and compensate for less distance off the tee the following season. My scoliosis doesn't cause me much pain or inhibit my golf, aerobic classes, tap dancing, bike riding, etc. now, but Dr. Lenke said my prognosis would not be good if I don't have the surgery. My curve was about 45 degrees in high school but has progressed to 77 degrees. I know surgery is the right choice, but I dread the thought of not being independent during recovery and knowing that some things won't be the same afterwards. I know if I continue to post on the forum, I need to be brief. Sorry this is so long. I enjoy reading about your skiing and everything you CAN do. I know I need to quit worrying over things I can't change and to think positive.
Thanks,
Karen

foofer
04-14-2010, 08:31 AM
Hi Karen,

Glad you joined!

I am also considering surgery, but haven't scheduled a date yet. Saw Dr. Boachie in NYC a couple times and really liked him, but he does not take insurance so I may need to shop around. I'll figure it out over time. From all I have heard, Dr.Lenke is a great doctor, so you are good to go there. I know what you mean about worrying about future sporting capability, but from all I have read, that seems to evolve into a satisfying outcome over time for most of the post-surgical people here. I was just waking up this morning to stressed-out thoughts of what you mentioned- losing the independence post-surgically. Don't know why that bothers me so much but it does. I guess there would be life lessons in that realm as well.

No need to be brief on this forum if you have "stuff" to get out. This is the place to vent and ponder and question. So let it fly when you need to!

Looking forward to hearing from you...
Amy

golfnut
04-14-2010, 08:47 AM
Hi, Amy,
Thank you for the reply. Dr. Lenke's office is about 30 miles from Waterloo so I feel extremely lucky. I have read on this forum about people from other states researching surgeons and choosing Dr. Lenke.
I know this is silly, but I have two miniature schnauzers that I totally take care of with several walks daily, their baths, medicines, vet trips, etc. My sweet husband says not to worry, but I do. Thank goodness we have a fenced in backyard. I will hate not being able to pick them up. I know I will just have to focus on recovering one step at a time and keep in mind that limitations, for the most part, are not permanent. I know one thing, I'm going to enjoy my summer and play golf, tap dancing at the Y, walking my dogs, & riding my bike.
What degree curve do you have? I can't imagine a Dr. not taking insurance. I look forward to hearing from you. Good luck in your search. I think you have to have total confidence in your surgeon because it's a big decision.
Thanks,
Karen

sarah105
04-14-2010, 03:44 PM
Karen,
My dog was my best recovery buddy! She seemed to like having someone home all the time as well since my parents work all day. We took plenty of naps together! Heres a photo from ~3 weeks post op! Having a dog around also motivated me to walk more. She pulls the leash like crazy so I didnt walk her at first but I could at least go out and walk with whoever was walking her.

LynetteG
04-14-2010, 04:28 PM
Sarah105 - that is such an adorable cute photo - I LOVE that picture. Dogs are my favorite animals and they are so lovable and compassionate and always happy, and look how comforting your dog was for you :). Us humans could learn a lot from the canine race! :)

golfnut
04-14-2010, 04:51 PM
Sarah,
Thanks for posting the picture of you and your dog. I also viewed your pictures from the hospital. Although I'm not looking forward to surgery and the tough recovery, I am looking forward to having a straight back!
Karen

RitaR
04-14-2010, 06:50 PM
I have a 4-year-old German Shepherd, "Max", at home and I have to tell you once I came home and saw him I was instantly feeling much better. He would lay on the floor right beside me. He would repeatedly come by me when I would sit in my chair and place his head on my arm as if to say, "I know you don't feel good!" How do they understand? But, yes, I, too, just love Dogs!!!!!

debbei
04-14-2010, 07:32 PM
Sarah,
that is the cutest picture. My 5 year old chocolate lab somehow also knew to be careful around me. He was so sweet.

ADMoul
04-14-2010, 07:37 PM
My Westie would follow me on my laps around the house during the winter and my first few weeks of recovery. It was almost like he knew there was something wrong and I needed to be "protected." Our canines are amazing! Now both he and the couch potato Scottie are benefiting from the walks outside. Of course, I usually have to make another trip by myself since I can't handle both of them and the pooper scooper!

golfnut
04-14-2010, 07:50 PM
Rita,
I noticed your surgery was with Dr. Lenke. I am scheduled for Nov. 1 T-4-sacrum. I know my two schnauzers will be great company. The 12 year old can't jump up on the bed, so that bothers me because she just puts her paws on the side and has me lift her up now. This is probably a really stupid question, but I filled in my bio when I registered, but nothing shows up on my posts. I'm really new at this.
Thanks,
Karen

foofer
04-14-2010, 11:20 PM
Karen,

I only started posting a few weeks ago myself, although I had been reading the forum for several months.

I have a double curve, 64T and 65L. I have some slippage in the lumbar area and have been told that would certainly cause me more trouble. Like you I am not in dire pain per se...by that I mean I am not sidelined from being active as well as working full time, but I ache and have stiffness and lots of moving pain that comes and goes. I also am starting to have sciatica. Seems like I am always trying to adjust my body, like trying to balance a corkscrew on a table. Not easy and probably can't be done.

I'm happy to know that now that I am truly "on" here, I can ask any ol' question that I think of in the coming months. It's not likely that I will have surgery before spring of next year unless I suddenly get into the severe pain zone. That's the first time increment that would be logical in my life, but as the saying goes, "If you want to make God laugh, tell Him your plans."

Your signature is different from your bio info. Click on the "UserCP" in the upper left corner after you have logged in your name, password....then
"Edit your signature" is on the left and just follow the prompts. (I'm so proud that I can answer that question)

Finally, talk about silly... when I was mulling over the idea of surgery, one of the reasons I would not want to do it is that when I occasionally cut loose and dance around the house like a moron, by myself or with my kids...that I will lose some of my moves. TRAGEDY.

Amy

doodie
04-15-2010, 08:33 AM
Hi Karen - welcome to the forum! You'll be in good company here. :)

Amy, I had to laugh when you said one reason you didn't want to do the surgery was because you would lose some dance moves....:D I had the same thoughts. I've always been a dancer and I got my husband to start ballroom dance lessons with me a couple years ago and he LOVES it... We would be enrolled once again but I missed the registration for this latest session and classes were closed - boo!

Obviously, there is less hip motion so no sexy Rumba but there is still so much I CAN do and NO PAIN. Our last session ended one week before my surgery, and honestly after 20 minutes, I just couldn't hold posture anymore - my back was screaming.

This thread started out as "Twisting Limitations..." - I can still dance - just a little differently sometimes. It feels great though!

golfnut
04-15-2010, 02:37 PM
Hi, Amy and Julie,
I can't tell you how happy I am to have found this forum with such helpful and supportive people. You can just tell everyone has a great personality and sense of humor, but more important, a positive attitude. I loved the post about things one enjoyed about their recovery. Talk about looking at the positive side of things! I intend to continue to tap dance once I'm completely fused. We have some routines with hip swivels, but I'll just do the best I can & fake some of the moves. My golf is my biggest concern, but, I am looking forward to having a straight back and hopefully not such a rib hump. Amy, I went to "Edit your Signature" so I'll see if it works now.
Thanks,
Karen

hope404
04-16-2010, 12:37 AM
enjoyed the pics.....thanks for posting...very encouraging

jsully
04-16-2010, 08:24 AM
Great pictures!

peachrush7
10-05-2010, 12:49 PM
thanks for posting these. as I ponder whether "to fuse, or not to fuse..." this helps me SEE that I won't necessarily be a robot. It's so hard to visualize what it'll be like, and this is encouraging.

thanks again!

Lorz
10-05-2010, 03:11 PM
As someone probably facing a long fusion, I really appreciate you doing this. A picture is definately worth a thousand words, in this case. You are an inspiration. Thanks so much!

kennedy
10-05-2010, 07:45 PM
wow ed those pic are fancitit

Mojo's Mom
10-06-2010, 01:41 PM
Ed, you made my whole day! Thanks!

mbeckoff
10-06-2010, 02:00 PM
note to Karen
the answer to the problem of lifting dog up in the bedroom is....pet stairs...on the side of the bed (if your doggie isnt too old?)...we have a 3 stair thing that mine runs right up!...my 10 pound maltese cant reach the bed by jumping... ...bad enuf he runs up 10 stairs just to get to get TO the bedroom!
dont know what the answer is for lifting dog elsewhere in house...?

Sparky (AKA Pookie Doodle) lays in bed with me days when the pain is too much for me to get up (main reason i retired before i wanted to)...
one of these days, i will have someone show me how to post a link, &will put up one of his many pix...he is the dog i waited for all my life...couldn't have one working 2 jobs! he was worth the wait! :)
when i was about age 8, & in summer camp, i made tile painting of a little dog chasing a butterfly.. decades later, my sister found that tile in my father's belongings! ..it is now in my kitchen...looks just like my Sparky!!

every time i try to pick him up now (a struggle due to pain & weakness lately) i think of the surgery that i need...& havent scheduled yet...fusion T11-pelvis...and know i wont be doing that kind of lifting any more! :(
i know, i will still be able to snuggle him...but for now, i just enjoy curling up with him a little bit more!

woof



Jess, what is the difference between pelvis and sacrum?

Melissa

Pooka1
10-06-2010, 02:30 PM
Ed, you made my whole day! Thanks!

I think Ti Ed is widely considered to be the unofficial spokesmodel in this sandbox for a full life after long fusion. :)

JenniferG
10-06-2010, 04:38 PM
Hear hear! There ought to be medal for those who go above and beyond.;)

Melissa, fusion is to sacrum, with screws into the pelvis. (Iliac bolts? Someone might correct me?)

jrnyc
10-06-2010, 05:33 PM
hi Melissa
according to Dr Lonner, not much difference...
i think pelvis is lower down...
i do know he said i would have more stability (for my individual case) fused to pelvis...or at least with "pelvic fixation"....

i think of you often and hope things get better for you...
so sorry you are still in pain!

jess

titaniumed
10-07-2010, 12:27 AM
I'm glad that everyone appreciates these pictures. I knew that these pictures would help those who are waiting and nervous about being fused down to the pelvis. I too, was wondering what was going to happen as far as my mobility. Since things were very bad down low, I didn’t even question having to have to do my A/P, I trusted my surgeon. Dr Menmuir really did a fantastic job. I will add my x-rays just in case any of you have missed them. The pelvic anchors (Iliac bolts) are the longest I have seen, and have been glancing at boatloads of x-rays all along of scoli constructs. Its Synthes "Pangea system".

Some links if there are any questions.
http://en.wikipedia.org/wiki/Sacrum
http://en.wikipedia.org/wiki/Pelvis

I do not feel any of my hardware, and I'm pain free.

If your surgeon wants to go down to the pelvis for support, it is probably a good idea to accept this since it will help support your construct and help guarantee fusion. I don’t believe that saving one level, or two is really worth it at age 50. The amount of articulation per level is probably only about 2 degrees. I know I wouldn’t want to have a revision and all that pain repeated to try to save that "limited mobility".

I have adapted, and things are great. I wouldn’t change a thing.
Ed

KathK
10-07-2010, 08:13 AM
OMGoodness, Ed, those ARE long iliac screws! It makes me feel better that your rods are not completely aligned in the saggital plane. They look about like mine. I assume that means we still have rotation in there. is that correct?

My question for you is, do you ever go a day without thinking about your back? And, if so, about at what point in recovery did that occur? :)

Pooka1
10-07-2010, 09:12 AM
OMGoodness, Ed, those ARE long iliac screws!

That's what ALL the women say. :)

Singer
10-07-2010, 09:32 AM
Oh Sharon, you scamp!!:D:D

Pooka1
10-07-2010, 09:56 AM
Oh Sharon, you scamp!!:D:D

Hey! I don't make the news... I just report it. :D

titaniumed
10-07-2010, 10:38 AM
I've heard that term quite a bit...OMGoodness. LOL It should be added to the dictionary.

Kathy, Yes, there still is rotation. I have a thread on the subject with posted cts.

There are days when I don’t thing about my back. I have gotten so used to it now. I think it took about 18 months....

I have to be careful in that respect as I leaned down to look at a piece of machinery last month and my spine reminded me that I'm fused.
Ed

jChris
10-07-2010, 03:58 PM
Thanks so much for sharing this great info Ed. I will be facing a t-2 to pelvis surgery on 10/25 and one of my biggest questions/concerns is regarding flexibility. You really have helped keeping it in perspective.

People are always saying to me "can't you get your surgeon to stop at a higher level?" My doc said that if I didn't go the the pelvis there would be a 40% chance that I would be facing extension surgery within 2 years. I love to gamble with cards and video poker, but not with 40% odds on more surgery. I will learn how to cope with my new normal. Again, thanks for sharing .

jrnyc
10-07-2010, 06:34 PM
hi Chris
haven't booked surgery...yet...
but wanted to tell you that my surgeon said the same thing to me...stability wouldn't be sufficient without fusing all the way to the pelvis...

i wish you a smooth procedure and an uneventful recovery...followed by the pain free life you deserve!

bes regards...
jess

Confusedmom
10-07-2010, 08:46 PM
Ed,

Can you twist and bend like that without any pain?

Totally unfused, I can twist about that far, but it sure isn't comfortable! Doesn't help that ribs are bumping into hips, etc. :)

Evelyn

titaniumed
10-07-2010, 10:14 PM
Yes. I don’t have any pain. If anything, I have what I call the "bear traps". The tight feeling of the muscles in my mid and upper back in the area of the spine. This happens when a "winter" storm moves through. I have always wondered if it was due to a combination of moisture, cold, and low atmospheric pressure. I have a thread on this topic. Last year around November 1st, it really hit me, we will see if that happens this year.

My surgeon told me that it’s a common complaint.

I have permission to lift 100#.
Ed

titaniumed
10-07-2010, 10:24 PM
Kathy, Here you go.

http://www.scoliosis.org/forum/showthread.php?t=8622

You can see the rotation in the cts
Ed

jrnyc
10-08-2010, 07:05 PM
Hi TiEd
many with arthritis...also those with migraines...are human barometers...barometer drops when rain/snow is coming....
my weather prediction record is much better than the forecasters on TV!!

100 pounds...wow!
do you ever do weight machines in gym? i miss leg presses & other lower body weight machines...pain has kept me out of gym for 2 years now...:(

glad you can do weights again...
jess

titaniumed
10-09-2010, 10:48 AM
Jess

No, I do not lift weights in a gym anymore. I did buy a ski pass for this season, and skiing can be a workout in itself...It takes me a little while to re-build the "soft tissues" used for skiing, I should be in great shape after about a month of skiing.

Right now, my body is normalized. I'm not improving much anymore, I think that my full heal took 2 years... 90% in the first year, 10% in the second. The battles with fatigue took a long time, but that has ceased.

Things are pretty good. Surgery saved my life, it worked. Whew.....
Ed

leahdragonfly
05-10-2011, 10:11 PM
Ed, I dug up your old thread because I am dying to know how I can reach to trim my toenails or lace up my shoes. I was fused T8-sacrum/pelvis seven months ago, so most activity restrictions are lifted and I am doing quite well overall. But, although I am a very flexible person, I can't quite manage to reach my feet!

Any hints you can share, I would appreciate!

titaniumed
05-10-2011, 11:32 PM
Hi Gayle

I use a stool, or the side of the bathtub. One foot up and reach down.

Be very careful because I triggered a very painful “soft tissue” injury down by my L3 area at 22 months post. Move real slow and don’t dwell down there. Just do some reaches and work (stretch) into it.

They sell long handled toenail clippers...and long shoe horns...Ikea has the long shoe horns. I have a long shoe horn but do not use it anymore.

I can also squat down to the floor to tie my shoes. It’s the maximum extent of my reach.

Glad to hear things are well.

Ed

golfnut
05-11-2011, 06:34 AM
Ed,
I know I won't be trying this until Janurary at the earliest, but . . .
I know you can make a good rotation to the right and the left while in a standing or sitting position. Can you bend slightly forward at your hips (knees flexed) and still twist to the right and the left (like in a golf swing)? Hey, I might make a golfer out of you!

golfnut
05-11-2011, 06:42 AM
Can you do the above physical request while looking at the floor (golfball) at least while rotating to the right and back to center?

Pooka1
05-11-2011, 06:55 AM
Ti Ed, after you do that, can you see if you can strut around the room like a chicken whilst reciting the Bill of Rights?

Then report back. Thanks.

:-)

golfnut
05-11-2011, 07:17 AM
We know he has numerous talents!

leahdragonfly
05-11-2011, 08:13 AM
Thanks Ed! I tried as you said and lo and behold, was able to stretch enough now to cut my toenails last night!!! How proud I am--no sore spots today although I really felt the stretch in my upper thoracic area!

And, can you do the above requests and then send us a photo? You know how we love your various photos, but you haven't posted any in a long time.

Take care, I hope your knee pain settles down.

Doodles
05-11-2011, 12:57 PM
Good one, Pooka! Yeah we want the video of that. Janet

Pooka1
05-11-2011, 01:57 PM
Good one, Pooka! Yeah we want the video of that. Janet

Yep!

Next I'm going to kindly ask him if he can do this without pain while whistling Dixie...

http://i144.photobucket.com/albums/r197/ilbonito/dita-von-teese_22739.jpg

And then report back.

titaniumed
05-12-2011, 01:28 PM
Karen
At some point, I will have to grab a driver and give it a whirl.....Its been awhile.

Sharon
Do this?
http://i144.photobucket.com/albums/r...eese_22739.jpg

Of course!

Sounds like you need to watch. I feel the same way. He he

Ed

Pooka1
05-12-2011, 02:41 PM
Hey Ti Ed, that came up "page not found."

titaniumed
05-12-2011, 11:29 PM
Karen
Good news. I grabbed a driver, and did it. I started with 5 practice swings and popped a ball about 30 yards with not too much effort. The club head speed would take some practice but I know it would come in time.

With some practice, you can do this. Plan on it.

Sharon, it’s the same pic. I just need a girl in a champagne glass, shouldn’t be too hard in Reno...I could find one in 5 minutes.

Ed

golfnut
05-13-2011, 05:49 AM
Thanks, Ed. I'm certainly going to try. I know Rich posted that he hadn't lost any distance at all, but he is not fused as high as I am and can make a shoulder turn. I may have to turn my shoulders and hips together which is not my normal swing. I'll have to develop a new "normal" and hope it works.

JDM555
10-05-2011, 03:57 AM
.................lol

rockycarm
02-13-2012, 12:48 PM
Thank you all for positive comments. With surgery coming up fast I am trying to concentrate on all the positive and look at these message boards probably way too much but it seems to be helping. 53-year-old female with idiopathic scoliosis since 13 and have seen quite a progression in the last 10 years. Can't wait to be out of pain and able to walk long distances, shop, and play with my grandchild. I will be having lots of questions and hope some of you will be able to help me - especially with what I can expect post operatively the firstly two weeks.

titaniumed
02-13-2012, 01:17 PM
Ahhh.....a new poster. And reading my threads. Oh no!

Hey, if you have any questions, let em rip.

The first few weeks after surgery are hard, BUT can be worth it as many will attest.....

Welcome to the forum

Ed

golfnut
02-13-2012, 03:09 PM
Rockycarm,
Welcome to the forum. Don't hesitate to post your questions. This forum was my main support before and after my surgery.

mabeckoff
02-13-2012, 03:25 PM
Rockycarm,

I also welcome you to this forum, which has been and continues to be for me a place of support and information.

Ask away all your questions and concerns

rockycarm
02-13-2012, 05:56 PM
Rockycarm,
Welcome to the forum. Don't hesitate to post your questions. This forum was my main support before and after my surgery.

To any and all who may read: 1. how long were you in the hospital? 2. How long were you on pain meds, reactions? 3. Were you able to be independent in the bathroom? How long before you could shower? Do hair? Could you wear a bra? If not, what did you wear? hahaha for the men that one was not for you :) 5. Did you sleep in your own bed when you came home from the hospital? OK, I won't bombard you all at once, but soooooooooo many thanks.

golfnut
02-13-2012, 06:22 PM
Could you start a new thread to post your questions? I will be happy to share my experiences, although everyone is different and has to go at his/her own pace.
I think you will get a lot more responses if you start a new thread and then can continue to add new questions to it as your surgery nears.

rockycarm
02-13-2012, 07:18 PM
Sorry to ask this but - how do you post a new thread??

golfnut
02-13-2012, 07:57 PM
You have to be logged in. Go the the section on the Forum for "Adult Patients (18+) Surgical (First Time)
At the top on the left in blue is "Start New Thread" Click on it and type your title and questions-scroll down and click "Submit New Thread".

dianadee58
04-20-2012, 08:21 PM
Wow~ you are an encoureagement~~ that looks like what my son will be having june 14th~ how is your pain now? Thank you for sharing this. I can't wait for my son to see this~ god bless you!!!

golfnut
04-20-2012, 09:33 PM
Diana,
I had fears of never being able to play golf close to the level I played before surgery, but thought that surgery was still the best choice for my later years even if it didn't include golf. Ed's photos gave me a lot of hope. Being 60 years old and fused from T-4 to the sacrum, I could not imagine that I could ever again be competitive at golf. Last Mon. night was the first night of our league in Waterloo, and I won first place over 20 golfers. It's hard to imagine, but life is pretty much back to normal and my future is so much brighter because of the surgery. Also, my self confidence in my taller, straighter appearance has increased. I still (after 15 months) receive compliments!

golfnut
04-20-2012, 09:38 PM
Best of luck to your son on June 14th. I think I have improved on flexibility since my husband took the video on vacation. That was the first day of golf after 15 months of not playing golf and having all of my back muscles cut and the rods inserted. I know that I will continue to improve. This surgery recovery just takes lots of patience and a positive attitude.

golfnut
04-20-2012, 09:44 PM
Diana,
I just realized that your comments were probably intended for Ed, instead of me. Yes, Ed is amazing in so many ways. He is invaluable to this forum with his postive support and knowledge. You son might like to see my video in my signature that shows life on the golf course after surgery!

dianadee58
04-22-2012, 11:08 PM
The X-Rays look amazing! You're fusion turned out very nice. I'm so happy for you!

titaniumed
04-23-2012, 08:03 PM
Wow Karen!

1st place over 20 golfers! That’s great! Glad my photos helped out some....You are in inspiration to many here.

Its JonMark’s turn to post, you are ready buddy, start your own thread. You have an incredible story and are a trooper. And Dee, YOU ARE an incredible person.......You deserve some sort of award, I wish I could give it to you......Glad that you guys showed up here for support.

I hope I helped out somewhat on the phone.....

Both of you are going to do just fine.

Ed

Irina
05-01-2012, 12:26 PM
I have a question for people who have a fusion to sacrum and are more than a year post-op - how do you go about cleaning your house? Can you clean a bathroom (shower, bath tub etc) or not? I understand that you can't do it for the first several months or maybe a year, but lets say after a year or two, can you do all the work around the house that requires a lot of bending or you still need somebody else to do it? Thank you!

Irina.

titaniumed
05-01-2012, 01:21 PM
Irina

How did you know that I was cleaning all weekend? lol I’m just a beast of burden....

I have no issues with getting down and scrubbing. It took about 18 months before I could do these things...

Ed

Irina
05-01-2012, 01:47 PM
I read your mind, Ed :-) Do you have any pain after you bend and scrub?

I am a neat freak and some people jokingly ask me if we leave in this house or only use it as a show room, ha-ha. So, knowing myself, question of how to keep your house clean after the surgery (if I have it) is important to me.

Irina.

golfnut
05-01-2012, 06:05 PM
Irina,
I kept my cleaning lady that I had during my first six months after surgery, but now she only comes once a month. I have mopped the kitchen and bathroom floors on my hands and knees and it didn't bother me, but that was a year after my surgery. (They are also not large rooms.)

titaniumed
05-01-2012, 10:25 PM
I read your mind, Ed :-) Do you have any pain after you bend and scrub?

I am a neat freak and some people jokingly ask me if we leave in this house or only use it as a show room, ha-ha. So, knowing myself, question of how to keep your house clean after the surgery (if I have it) is important to me.

Irina.

No.

After surgery, you will feel “discomfort” and “gripping” from the muscles running over the screw heads in the thoracic spine....its either that or a combination of the healing of the paraspinal’s that are located in the center of the back, 4 inches wide. It took me a year to get over this....At 14 months post, I was shoveling large amounts of landscaping rock, really putting things to the test. PT is a good thing, the arm bike was extremely beneficial for me during my shoulder recovery.(8 months post scoli surgeries) I would not have learned this if I hadn’t broken my shoulder.

I used to say I stopped improving at 2 years, but I have improved some from the second year to my fourth year...

On the subject of cleaning, I was looking for a pic or movie of Lily Munster “dusting” the house on the Munster’s.... You know, where the dust is just pouring out of the hose? I thought that was hilarious. Yvonne De Carlo and Fred Gwinn did a fantastic job at their roles.....I’m still laughing and its been a half a century...

If things get a little dusty, you need to find the episode I’m talking about because laughing during your recovery is a necessary thing. It clears the lungs and acts as a mental diversion. Its funny how this works so well.....
Ed

Terrik
05-06-2012, 04:51 PM
I am stil on the 70% sure surgery needs to happen - and looking toward Spring 2013 - but boy those fears can make one crazy. I will need to be fused from T-3 to sacrum with pelvic fixation, and like so many of us, am worried about the flexibility and how I will take care of myself (live alone and have no family). I live in NYC and the surgeon will either by Boachie or Lonner, leaning more toward Lonner.

I was wondering if anyone who has had a long fusion has a picture of how they bend over? I love Ed's pictures that show his twisting ability - Ed you are amazing. I am just curious how it looks to bend to pick something up? Is it totally a squat or can you bend over at all? I wish there was a video to see the movements one can make after all is said and done. Ed - I just gave you a project...:) So, if Ed or any one has a picture(s) to share, I sure would love to see it - as I am sure others would too. Maybe it would finally erase my fears that I will be moving like a robot and incapable of having flexibility. I hear you all say, it is different - just so hard with no visual images. And I know this is a concern for so many of us on the pre-surgery side.

Thanks in advance!

golfnut
05-06-2012, 09:08 PM
I was fused from T4 to sacrum in January, 2011. I don't feel that I move robotic at all. In my signature, I have posted a vidoe of my first game of golf after surgery. I know I am swinging with more speed and turning now several months later. I am also tap dancing and performing with my group again. I usually go down on one knee to get something off of the floor, but can also do a one legged stance and reach if I'm holding on to something. I hope my knees hold out for me because I'm doing a lot of squatting with golf . . . putting the ball on the tee, marking and replacing the ball on the green, etc. I'm also doing a lot of squatting pulling weeds in the landscaping. I kept five grabbers in the house during the first 6 months after my surgery.

Terrik
05-08-2012, 06:45 AM
I would never know looking at your form and swing that you had scoliosis surgery and I like that quick deep with the knee to pick up the ball. Thanks for sharing and inspiring.

titaniumed
05-08-2012, 08:55 AM
Its great to see Karen playing golf again.....I knew when I drove a few balls last year that it wouldn’t be a problem for her to get back into the swing of things.

I have a skiing video I keep throwing up here....I’m in the red jacket.
http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=email

Terrik

I can bend over and get my fingertips about 4 inches above the floor. Usually, if I need to pick something up, I squat down.

It would be a good thing to go and visit a local support group in NYC. You can also PM any of us here including me, to call on the phone. Sometimes there is too much to type.
I did my recovery alone.

That would be a great thread to start, titled Solo recovery.

Ed

king14
05-08-2012, 10:26 AM
I wish there was a video to see the movements one can make after all is said and done. Ed - I just gave you a project...:) So, if Ed or any one has a picture(s) to share, I sure would love to see it - as I am sure others would too. Maybe it would finally erase my fears that I will be moving like a robot and incapable of having flexibility. I hear you all say, it is different - just so hard with no visual images. And I know this is a concern for so many of us on the pre-surgery side.

Thanks in advance!

Me too! I have never met someone that had scoliosis surgery. I've watched a zillion of amazing, energetic, teens/young adults surgery videos on youtube, but I wanted to see how life was AFTER that. everyday life.
thank you so much for the videos, both of you!!

It gives so much hope for those who haven't yet taken the plunge!!

mabeckoff
05-08-2012, 10:42 AM
How I envy you Ed

titaniumed
05-09-2012, 12:49 AM
Energetic teens? Ok, is 97 old enough? Check this out.

Banana George is fused and is a barefoot waterskier. He is my inspiration..... He was fused in 1954, and still rocks. I wonder how many crashes he has had in the last 56 years? Hmmm..... This man really proves that there is life after fusion. He doesn’t have rods, they used casts back in those days.

http://en.wikipedia.org/wiki/George_A._%22Banana_George%22_Blair

http://www.youtube.com/watch?v=JankgaPZp9w

King, if you have never met another fused scoli, it would be good to attend a local scoli meeting. Of course, the best meeting is at UCSF, it’s the one that Linda organizes. I truly hope more forum members show up at the next meeting......the surgeons and doctors answer any and all questions....It runs all day long. They are a great group.

Here is a list of support groups off Linda’s site.
http://www.scoliosislinks.com/SupportGroups.htm

Ed

titaniumed
05-09-2012, 01:04 AM
"George is one of the healthiest people I have ever treated," says his physician, Robin Baker of Winter Haven. "Notice I'm not saying the healthiest 88-year-old. He'd be healthy for someone in his 20s or 30s. It's all in the exercise, healthy eating and a positive attitude."

Long before George Blair was known as Banana -- decades ago, when he was in his 20s -- he was not the healthy specimen he is today. He tried to stay active, but he suffered from a bad back. It was a congenital problem, scoliosis, made worse by an unfortunate episode in 1934.

"During a college break, for the fun of it I rode across the country on the rails," he says. "Some hobos tried to steal my beans. I wouldn't give up my beans, and they threw me out of the boxcar. It really hurt."

He tried to stay in shape.

"When my kids were small, I'd jump over them on ice skates. But you know what? I was miserable. Hurt all the time. Felt like an old man."

He submitted to surgery, spinal fusion, when he was 39. His doctor suggested he take up swimming. He couldn't swim and still hates to be in the water without a flotation vest. "I sink like a stone. No buoyancy." He went to Fort Lauderdale for a vacation. Sitting near the Intracoastal Waterway, he watched an armada of skiers fly past. At a ski school, an instructor said, "If you can walk, you can ski."

"You got to be kidding," George said. "I'm in a back brace!"

http://www.sptimes.com/2003/01/20/news_pf/Floridian/Banana_s_appeal.shtml

king14
05-10-2012, 10:44 PM
Here is a list of support groups off Linda’s site.
http://www.scoliosislinks.com/SupportGroups.htm

Ed


fabulous Ed, THANK YOU!. I really have found a wonderful place here on this thread!!!

POLIOSURVIVER
05-16-2012, 10:14 PM
Hello everyone,
I am Connie from Florida and I have a very advanced scoliosis (122 thoracic anspd 100 lumbar), diagnosed in my early youth, when i was about 14 years old, I had a thoracic fusion done many years ago, now my curvatures progress about 4-5 degrees/year. I wad told that my scoliosis is a consequence of polio I contracted when I was almost 2 years old, in the old country.
I had an initial consultation with Dr. Lenke in St. Louis in November 2011 and I am scheduled for fusion from T3 to sacrum in October 1st, 2012.
Is this site where I found, as a guest, a lot of info and I first heard of Dr. Lenke and his magic. By he way, thank you all, for all the blogs and the pictures, they are very helpful for patients like me.
Now, I have a huge dilemma: I do not feel comfortable and go ahead with my surgery, (which, by the way, is very risky, due to the high degree of curvatures) unless I go ahead and see, physically , with my 2 eyes, a person who had the surgery and is willing to share with me some of he experience, live, in person.
So, please, respond to my message and share with me your experience, I am aware that it is very private and not pleasant to remember the pain and frustration, but, try to understand my position. And
where can I find support, other than this forum, where people going through same experience, share with
each other? My email address: tstraw2002@yahoo.com. You can contact me by email, if
you are willing to help? I am not a whiner, but this is really, really major staff. Thank you very much.
Connie
55 years old, thoracic 122, lumbar 100, scheduled for surgery on Oct. 1st, 2012 with Dr. Lenke

JenniferG
05-17-2012, 03:41 AM
Hi Connie and welcome! Considering your large curves, I believe you have found just the right surgeon to help you. From all my years on this forum, Dr. Lenke appears to be the choice of those requiring a big surgery and I think most here would agree, he is your best bet or one of the best.

One thing I would suggest, is starting a new thread of your own, which will attract more attention so that you get more replies. There are plenty of us here with fusions around the same length yours will be, though not many with curves as big. Just ask any questions that enter your head, we're very willing to share and encourage, and many here are very knowledgeable. Best of luck!

golfnut
05-17-2012, 06:44 AM
Connie,
I had my surgery in January of 2011 with Dr. Lenke. I have had a smooth recovery so far and have never regretted having the surgery. I'll send you an email.
Karen

Doodles
05-17-2012, 02:07 PM
Connie--
I agree you have picked the right surgeon. He takes the most difficult cases. My curves were about 96 and 68 with a considerable rib hump. Cosmetically I don't feel as good as some do but my curves were big. Yours are bigger and he would do the best job, I feel. He's a great doctor. If I hadn't had the surgery 3 years ago, I don't know where I would be now. Pain would have been even more significant and the curves would have certainly been more and more pronounced. It was progressing the last couple years before my surgery at an even faster rate as I aged. Mine was done at 57. I think the sooner the better.
Generally, my pain is much much less. Sometimes I do too much and find I have several not so good days. I don't look "robotic" like some worry about. Most people wouldn't notice the remaining rib hump or my lean to left unless I was wearing a bathing suit. I gained an inch and a half which stretched out my very squished torso. It was a long recovery for me and I seemed to be on meds much longer than most. I do lots of exercising nearly every day to keep as much flexibility as possible. Zumba is my favorite but I had to go to just twice a week because it was giving me hip trouble. It's really fun--I would do it every day!
I tried to just give you all angles here and I would definitely do it all over again--don't ask me that the first couple months though!--it was a necessity and I'm glad I did it. Dr. Lenke can help you if anyone can.
Where do you live? I am worthless at posting pictures, etc. Even my kids tried a few years ago and couldn't do it on here for some reason, so I gave up on that. I hope this helps and good luck to you! Janet

titaniumed
05-18-2012, 09:59 AM
Hi Connie

Welcome to the forum!

The huge dilemma, feeling comfortable.......That is one of those things that we need to be, but deep down a very hard thing to stomach.....I don’t think that you should have any worries about your surgeon, it doesn’t get much better. Now, the procedure might have us on edge, that’s for sure.

When I was waiting in the staging area minutes before my anterior, my vascular surgeon came in and asked me if I was nervous. I asked him “who isn’t?'” “I think I should be”....He then said that he had a lot of work to do and inserted the IV into the top of my wrist (in 1.1 seconds) and knocked me out. That installed confidence..... I have a huge scar in the front. (and the back)

I had no choice. There are times that we have no choice. I think that when it gets to this, that worrying doesn’t make sense and we have to be very brave. Maybe the “I think I should be nervous” attitude isn’t the best thing.....switch to the “I think I should be brave” attitude. We are the bravest people on the planet. You know that.

There have been a few here that have had surgeries with really huge curves like you.....and its great to see them posting a great story.

Medical technology has come a LONG, LONG, LONG way since you had your surgery in the early 70’s. I think that the improvements you will have will be substantial, and you should look forward to this.

Always reach for the prize. Never look back.

Ed

titaniumed
05-18-2012, 10:22 AM
Me too! I have never met someone that had scoliosis

Well, your just going to have to come up to Lake Tahoe then and meet a scoli. How about mountain biking? The flume trail at Spooner summit is probably the most scenic ride in the world, its about 1500 feet above the lake with outstanding views. 19 miles long. Rent a suspension bike....there is no snow pack right now.

http://www.youtube.com/watch?v=j-aorvWqiq8&feature=fvsr

If you want harder, we can do that. The Downieville downhill is a good one, and longer. Again, extremely scenic.

I know, my scoli meetings are a little different......(smiley face)

Ed

jrnyc
05-18-2012, 11:26 AM
someone suggested a video be made, maybe by a surgeon, to show
a patient moving before and after full fusion to sacrum surgery...
i think it is a fantastic idea...
i have yet to meet a full fused scoli in person....
it would help immensely to see someone close up moving, bending, doing ordinary tasks after surgery.....
all my imagining can't help...and having people tell me it is not as bad as i imagine doesn't help either....
need to see it....

don't know why no surgeon has thought of this....

jess...& Sparky

Confusedmom
05-18-2012, 06:46 PM
Watch the videos of TiEd skiing or Golfnut playing golf. That should help. I found Naptown78 and LisaB and met them in person before my surgery. And guess what? They both look awesome, and you would never know they were fused! (Oh, and I met Golfnut at Dr Lenke's -- another elegant lady!!!)

JenniferG
05-19-2012, 01:53 AM
I "met" a fellow scoli patient on the Australian forum (she's a little younger than me, but same surgeon and similar fusion.) We arranged a meet up and I immediately noticed the familiar way she stood, and sat. I sat opposite her at a table and saw that we sit the same way, straight, and not bothering much with the chair back. We stood up from the table the same way, reaching for our bags the same way. It was so interesting to see someone do things the same way as me!

Jenna.KB
05-20-2012, 09:05 AM
I "met" a fellow scoli patient on the Australian forum (she's a little younger than me, but same surgeon and similar fusion.) We arranged a meet up and I immediately noticed the familiar way she stood, and sat. I sat opposite her at a table and saw that we sit the same way, straight, and not bothering much with the chair back. We stood up from the table the same way, reaching for our bags the same way. It was so interesting to see someone do things the same way as me!

Hi Jennifer,

I'm thinking of asking my surgeon to put me in touch with someone who has had surgery that I am waiting for so I can see how they move and look. I keep thinking of new things that I might find difficult on a day to day basis. How quick were you able to shower yourself, shave yourself and moisturise?

Your surgery results are amazing, I hope I'm as lucky.

jrnyc
05-20-2012, 05:32 PM
yes, i have watched Ed's videos....
but i havent seen him clean the kitchen or bathtub, or do laundry....hah...
it would help to see someone do ordinary things....
i am very surprised that no surgeon has thought to make such a video....
i think it would go a long way to helping future patients and reducing their fears...

jess

Confusedmom
05-20-2012, 09:16 PM
Okay, if no one does it before then, I will make a video of house cleaning next year when I am fused!

Irina
05-20-2012, 09:22 PM
Wohoo! I am looking forward to that house cleaning video!

mabeckoff
05-20-2012, 09:30 PM
yes, i have watched Ed's videos....
but i havent seen him clean the kitchen or bathtub, or do laundry....hah...
it would help to see someone do ordinary things....
i am very surprised that no surgeon has thought to make such a video....
i think it would go a long way to helping future patients and reducing their fears...

jess

The only thing with a surgeon showing their patients a video might make it look like he was guaranteeing that they would be able to do those activities. No surgeon would do that

JenniferG
05-21-2012, 01:05 AM
Hi Jennifer,

I'm thinking of asking my surgeon to put me in touch with someone who has had surgery that I am waiting for so I can see how they move and look. I keep thinking of new things that I might find difficult on a day to day basis. How quick were you able to shower yourself, shave yourself and moisturise?

Your surgery results are amazing, I hope I'm as lucky.

Hi Jenna,

I showered and shampood on the day they removed the various lines. I am not 100% sure, but I think it was the Saturday after my Tuesday surgery. They removed the coverings from my incision really early and left it open, day 3 or 4. Everyone who saw it was amazed. I had no stitches at all, at least on the outside. My surgeon used glue. Shaving was more difficult so I taped a long handled wooden spoon to a razor. I sat on a chair to do it. I don't generally moisturise but if I did, I would probably have found that difficult, if not impossible at least in those early months.

Jenna.KB
05-21-2012, 02:40 AM
Hi Jenna,

I showered and shampood on the day they removed the various lines. I am not 100% sure, but I think it was the Saturday after my Tuesday surgery. They removed the coverings from my incision really early and left it open, day 3 or 4. Everyone who saw it was amazed. I had no stitches at all, at least on the outside. My surgeon used glue. Shaving was more difficult so I taped a long handled wooden spoon to a razor. I sat on a chair to do it. I don't generally moisturise but if I did, I would probably have found that difficult, if not impossible at least in those early months.

Thanks.
I remember from previous surgery that I could shower myself pretty quickly after surgery but I'm thinking with a full fusion it might take me a while and I don't think I'm going to be able to do my own bikini and leg waxing anymore :-) The razor taped to a long handles spoon sounds like a plan for legs though.
I have psoriosis, a skin condition so find I need to moisturise daily. I think my mum or boyfriend may have to assist for a while with that then.
Can you still bend at the knees to sit on the floor? some people on the forum say they don't think they will ever be able to sit on the floor again. I know my spine will move as one full piece but I thought after 3 months or so I'd be ok with this. I also tend to sit on the sofa/couch and bend my knees and put them up so my feet sort of sit to the side of my bottom then lean to the left against the arm rest. Do you have problems sitting like this?
I'm thinking a video showing normal house activity would be a good idea. Hope I can get my surgeon to put me in touch with someone who has had a similar fusion so I can maybe meet with them.

Confusedmom
05-21-2012, 06:38 PM
Everyone has a different amount of flexibility. I am fused T4-sacrum/pelvis, and I sat on the floor at about 8 weeks post-op. So, I know I will be able to. However, I'm not going to do it again for a while, because after I did it, I was sore and thought it was probably unwise (in terms of helping the fusion process). I regularly lay down flat with my knees up, though. I think that's a pretty normal position, which reduces stress on your back. I suspect that as a 27-year-old, you'll be fairly flexible when all is said and done. Best wishes!

JenniferG
05-21-2012, 07:15 PM
[QUOTE=Jenna.KB;139390]
Can you still bend at the knees to sit on the floor? some people on the forum say they don't think they will ever be able to sit on the floor again. I know my spine will move as one full piece but I thought after 3 months or so I'd be ok with this. I also tend to sit on the sofa/couch and bend my knees and put them up so my feet sort of sit to the side of my bottom then lean to the left against the arm rest. Do you have problems sitting like this?
QUOTE]

Yes, I can sit on the floor but it's not comfortable. At first kayaking was uncomfortable for that reason but we were able to purchase a small back rest, just for the lumbar area and it made a world of difference. We used to kayak for 4-5 hours pre-op but these days, my tailbone aches after maybe 1.5-2 hours so it has shortened our kayaking trips somewhat.

I haven't tried sitting the way you describe but I think if you have something to lean on, left, right or back, this is definitely doable.

naptown78
05-21-2012, 07:17 PM
yes, i have watched Ed's videos....
but i havent seen him clean the kitchen or bathtub, or do laundry....hah...
it would help to see someone do ordinary things....
i am very surprised that no surgeon has thought to make such a video....
i think it would go a long way to helping future patients and reducing their fears...

jess

Jess,

Hah!

I did all of these things over the weekend...cleaned the kitchen, got down on my knees and scrubbed the shower pan, and did laundry with my top loading washing machine...plus vaccumed the baseboards, swept the front porch, went bike-riding with my grandson, and also went grocery shopping! All with fusion from T4 to sacrum and pelvic bolts, and 2 revisions tossed in. You can do anything you put your mind to...Really!

mabeckoff
05-21-2012, 07:19 PM
[QUOTE=Jenna.KB;139390]
Can you still bend at the knees to sit on the floor? some people on the forum say they don't think they will ever be able to sit on the floor again. I know my spine will move as one full piece but I thought after 3 months or so I'd be ok with this. I also tend to sit on the sofa/couch and bend my knees and put them up so my feet sort of sit to the side of my bottom then lean to the left against the arm rest. Do you have problems sitting like this?
QUOTE]

Yes, I can sit on the floor but it's not comfortable. At first kayaking was uncomfortable for that reason but we were able to purchase a small back rest, just for the lumbar area and it made a world of difference. We used to kayak for 4-5 hours pre-op but these days, my tailbone aches after maybe 1.5-2 hours so it has shortened our kayaking trips somewhat.

I haven't tried sitting the way you describe but I think if you have something to lean on, left, right or back, this is definitely doable.

I am wondering if I could sit on a kayak , not in one? Any opinions?

Doreen1
05-21-2012, 08:32 PM
Everyone has a different amount of flexibility. I am fused T4-sacrum/pelvis, and I sat on the floor at about 8 weeks post-op. So, I know I will be able to. However, I'm not going to do it again for a while, because after I did it, I was sore and thought it was probably unwise (in terms of helping the fusion process). I regularly lay down flat with my knees up, though. I think that's a pretty normal position, which reduces stress on your back. I suspect that as a 27-year-old, you'll be fairly flexible when all is said and done. Best wishes!

How do u sit on the floor without bending? Did Lenke already release u to bend?

Warmly
Doreen

Jenna.KB
05-22-2012, 03:10 AM
Hi All,

Confusedmom, your curve reduction is amazing. I'm praying mine is as good because as you said at 27 yrs I'm still very flexible even with curves so big. My surgeon says that even when they do an xray that involves pulling on my neck and feet they achieve about 20 degree improvement.
I don't mind not being able to sit on the floor or how I normally done for quite a while its just nice hearing stories from people that say it is achievable after some time. Thanks

Jennifer,
Kayaking wow. Never tried it but impressed you can still do it, as with the gardening you mention on a different post and all the cleaning you can manage. Yes my sofa has arms so I thought I would still be able to manage my normally seating arrangement eventually.

So pleased everyone says they can clean more or less as normal. My family and boyfriend will step in for as long as they need but I must admit even though there is only me and my boyfriend at home I am a bit of a clean freak :-) and I was worried that I wouldn't ever be able to clean the same again. Don't mind if cleaning the floors is difficult or carrying heavy things is, my boyfriend can help with that :-)

Feeling so happy reading your comments. Thank you

JenniferG
05-22-2012, 03:54 AM
[QUOTE=JenniferG;139409]

I am wondering if I could sit on a kayak , not in one? Any opinions?

Our kayaks have slightly raised seats (only a couple of inches) so it's not exactly like sitting on the floor with legs out in front. Almost, but not quite.

I'm not sure what you mean by your question Melissa, i.e. do I think you could use a kayak? I guess if you can sit on the floor, you could, but we are all different and you have a very long fusion. Perhaps with a seat-back like I have, you could but I'm not sure.

JenniferG
05-22-2012, 04:00 AM
Jennifer,
Kayaking wow. Never tried it but impressed you can still do it, as with the gardening you mention on a different post and all the cleaning you can manage. Yes my sofa has arms so I thought I would still be able to manage my normally seating arrangement eventually.


We used to do a lot of kayaking, right up to my surgery. If you can sit with your legs straight out the front, you can kayak. It's very easy, you don't have to be very strong, it's very peaceful and you get to follow beautiful scenery along the riverbanks. It's a whole different world on the water of a winding river. Cleaning, well, that's a whole other story!

Jenna.KB
05-22-2012, 06:02 AM
We used to do a lot of kayaking, right up to my surgery. If you can sit with your legs straight out the front, you can kayak. It's very easy, you don't have to be very strong, it's very peaceful and you get to follow beautiful scenery along the riverbanks. It's a whole different world on the water of a winding river. Cleaning, well, that's a whole other story!

Hiya,

So glad you can still do something you enjoy even if the length of time has had to be shortened a bit. Sounds lovely but I get sea sickness and have a fear of water sports, inparticular tipping up into the water so think I'll take your word for it :-)
I'm hoping I can enjoy going for a walk though without feeling like my lungs are squashed or I have a small child sat on my shoulders. I'd say I can't wait for my surgery but obviously I'm scared and not luckily forward to the recovery but at least I have some idea of what is to come from previous surgery and everyones experiences definately help.
Enjoy your day

Confusedmom
05-22-2012, 12:57 PM
Hi Doreen,

Well, Dr. Lenke did say at my 5-week appoinment that I could gradually start to lift the restrictions, as long as I felt like my motion was controlled and I wasn't causing myself extra pain. That said, sitting on the floor wasn't really in my plans. I just squatted down with my knees one day to look for a video for my kids. When I realized it was going to take me a while to find, I decided to try sitting on the floor. Like I said, I don't really recommend it this early, but I know I can do it. I bent my knees and hips, but not more than 90 degrees.

The more I think about it, I am a little confused about this "no bending" thing, because you CAN'T bend your back! (At least I can't--and I assume most people with long fusions can't.) I thought it was okay to bend at the hips up to 90 degrees (to sit, at least). I wonder if this restriction is really meant more for people with partial fusions? Hmm. What did Dr. Lenke tell you, Doreen?

Doreen1
05-22-2012, 06:25 PM
Hi Doreen,

Well, Dr. Lenke did say at my 5-week appoinment that I could gradually start to lift the restrictions, as long as I felt like my motion was controlled and I wasn't causing myself extra pain. That said, sitting on the floor wasn't really in my plans. I just squatted down with my knees one day to look for a video for my kids. When I realized it was going to take me a while to find, I decided to try sitting on the floor. Like I said, I don't really recommend it this early, but I know I can do it. I bent my knees and hips, but not more than 90 degrees.

The more I think about it, I am a little confused about this "no bending" thing, because you CAN'T bend your back! (At least I can't--and I assume most people with long fusions can't.) I thought it was okay to bend at the hips up to 90 degrees (to sit, at least). I wonder if this restriction is really meant more for people with partial fusions? Hmm. What did Dr. Lenke tell you, Doreen?

Now that I think about it, since I missed my 3 month follow up appointment, Dr. Lenke may have told me back then that I could maybe start slowly bending. Not sure. Since seeing Dr. Lenke last week, I've tried bending a bit to load the bottom of the dishwasher, bend at the sink when brushing my teeth, just doing baby steps. I definitely feel a tightness in my lumbar area since starting these new movements. When I was outside this evening with my daughter, I tried squatting to one knee to pull a weed, yeah right... good in theory but not so much on execution. Some day I'll be able to do a Karen move like she did in her golf video. ;-)

I notice in the mornings before I get out of bed, I'm able to bring one knee at a time toward my chest to stretch my hamstrings and my knees come within 5 inches of my chest. Our neighborhood pool opens this weekend so I'm looking forward to starting to swim. Dr. Lenke said this will be great exercise.

Right now, the thought of bending or twisting is just so strange to me.

Warmly,
Doreen

titaniumed
05-22-2012, 11:15 PM
Doreen

Congratulations on pulling your first weed!
I guess that’s kind of a drag for a surgeon to read that all we really want to do is pull weeds with our expensive spines! LOL Don’t worry, you will get there in time.....(smiley face)


Jenna

Welcome to the forum! I will always remember where you are from because the Who did an album “Live at Leeds” a few years ago.....

Try not to get too jumpy....soon you will be all fixed up.
Deep breaths!

Ed

Doreen1
05-23-2012, 05:16 AM
Doreen

Congratulations on pulling your first weed!
I guess that’s kind of a drag for a surgeon to read that all we really want to do is pull weeds with our expensive spines! LOL Don’t worry, you will get there in time.....(smiley face)


Ed

Unfortunately I wasn't able to grab it, but came within a few inches. :-/

tampamom
02-24-2013, 11:57 AM
Hi Ed,

I couldn't do any better twists and I think I have a "normal" spine :) Thank you for posting the pictures, I will show them to my son as he contemplates "when" for surgery: T5 - L4 fusion. Newly diagnosed with T55, L42

As we are wondering how long he can wait for surgery, is that what you did?

Thanks,

-C

titaniumed
02-24-2013, 02:29 PM
Even though this is a great thread...(Pat on the back) I will answer but its best to keep your discussion on your other thread. Its much easier that way....Keep it all on one thread for now.

I was a Luque wire candidate in 1975. Of course back in those days scoliosis and surgeries in general had a different mindset, most elder’s frowned, and I made a decision to wait since I was competing in skiing back then. I had twin 50’s at age 16, jumped 100,000 HIGH jumps and abused my spine more than anyone can ever care to think about. So, if you are concerned that your son is “delicate”, well I don’t think you have to worry about that.

Welcome to the forum
Ed

hasteffen
02-24-2013, 02:49 PM
I am about 4 1/2 months post op. Fused t4- sacrum. I can walk four miles in one hour. I can load the dishwasher ( I do so mostly by squatting)I can carefully do a load of laundry... I am just extremely alert as to how I move my body.
I have been riding the stationary bike at the gym. I take water aerobics class as well.
Next month I am planning on a trip to FL (10 hour drive). I do not anticipate any problems but if we need to stop along the way...we will!
My older girls were in a Peter Pan play that was over 2 hours long and I watched it 3 times without any bad pains. I can bend from my hips some (like to wash my face or brush my teeth) but I have not pushed it. I can dress and tie my shoes without any dressing aids. Of course, I can't lift my son or heavy objects, I do not twist yet... so sitting in church I have to turn my whole body to talk to the person behind me.
BUT I do expect that I will be able to do everything I did before surgery...just a little different and without pain.
For me, the worst part now is the nerve zingers and minor muscle aches which isn't that bad since I rarely even take Tylenol. I am worn out by 8pm so usually just relax and watch TV, read or play on the computer in the evening.
I have not tried vacuuming, or mopping the floors. I have pulled weeds (although not for as long as I would have liked), and picked up dog poo out of the yard. I can sit on the floor but it is still a little difficult getting up so I do not make it a habit. I have no problems cooking or cleaning. All in all, I am doing a lot more then I ever thought I would be able to do at this stage and without pain. I think the important thing is to know and listen to your body. If I have doubts, I don't attempt it. If I feel like I need to rest, I do. I believe being in shape prior to surgery was key (and my faith and belief in God). Prior to my surgery I worked out 5 times a week!
I am looking forward to regaining my strength and lifting weights again.
Oh, it still hurts to sneeze and cough but it is getting better!
Blessed,
Heidi

titaniumed
02-24-2013, 04:16 PM
Heidi

This is fantastic news!

Its funny how all the full fusion patients seem to report that they are pulling weeds with their expensive spines....

I think now that this question needs to be added in the Oswestry questionaire. “Can you pull weeds” Yes or No?

Can you imagine at the next SOSORT scoliosis meeting, they establish that this is the “acid test” of recovery?

“She is pulling weeds at 5 months! She is completely recovered”. (150 surgeons nodding in agreement) LOL

On a serious note, please be careful with the bending and tying of shoes....I have had major soft tissue pain events out at 22 months due to this....boy, that hurt like the dickens!

Ed

Irina
02-24-2013, 05:09 PM
Heidi, glad to hear that you're doing so well! I am impressed. When you say you don't have problems cooking - can you use an oven? It involves leaning forward when you put something in and out, so I am curious about that.

JenniferG
02-24-2013, 05:10 PM
Wonderful news! You must be over the moon. Thanks for updating us.

hasteffen
02-24-2013, 07:08 PM
Irena-
My oven is waist high and wall mounted...
If I had a regular oven, I might could but it would be more difficult to squat while taking something hot out of the oven and I am not sure if I could bend that far...yet!
Best,
Heidi

Confusedmom
02-25-2013, 08:04 AM
Heidi,

Amazing, amazing, amazing!!! If I didn't know you, I wouldn't believe all of that. But, that's awesome, and I'm sure very inspiring to all the pre-ops!!! Tying shoes, walking fast and pulling weeds, in particular. I think strong quads and very flexible hips and thigh muscles are key.

Irina, I have a regular floor oven, and I didn't do much cooking at first, but I now can get pretty much everything in and out with squatting. I might ask my husband to do the whole turkey just because of weight, but probably could do it if needed. I cannot sit for any length of time on the floor though! I would tip backwards. I have no idea why.

:-),
Evelyn

hasteffen
02-25-2013, 11:28 AM
Evelyn,
Sometimes I hate posting because I don't want others to be discouraged...
I just tried sitting on the floor. I can sit criss cross applesauce with no problems but sitting with legs extended out in front of me is impossible without leaning back and supporting myself with my arms.
I am also still having recall and memory issues... Does anyone else have that issue?
Best,
Heidi

golfnut
02-25-2013, 07:36 PM
Heidi,
I'm so happy for you! You should be proud of your accomplishments.
I remember an old post about people fused to the sacrum having trouble sitting with their legs straight out without tipping over like you mentioned. Someone warned that we shouldn't even attempt that position until 6 months or more post-op if I remember correctly. I can do it now at two years, but my hamstrings are still a little tight when I keep them perfectly straight. The first time I tried to take a bath, I had to lean back against the tub or support myself with my arms. So many things got easier for me, even after a year.

hardtofollow
07-09-2013, 01:00 PM
Here are some pics that will show how far I can twist with a T2-pelvic fusion.
I also have pics of my rib hump, which is now much less. I still have about 30 degrees rotation in my vert, verified by my cts. My hump was much worse before my surgeries.

Hopes this gives some idea as to limitations after a full fusion.
Ed

Ed, your scar and the bending and standing are almost identical to mine. I had surgery in 2009 at Springfield, Missouri. Dr Wade Ceola is my surgeon. I hadn't been on this site in years but today is my birthday and I received a birthday greeting. Very happy that you are doing as well as I am. I returned to work within 3 months of my surgery. Still have down days; but, who's to say everyone doesn't. I'm 61 today and very proud I had the procedure. My life would not have been as full without the surgery because I was becoming very limited in my activites and breathing. Today is great!!

Bill

titaniumed
07-09-2013, 09:37 PM
Well Bill, Happy birthday! and welcome to the forum.

I have been sitting at the table here for years chatting with all the NSF ladies and to tell the truth, I’m running out of material! LOL I need to switch to more comedy to try to liven things up.

If you select “forum” and select Surgical (first time) you will see Linda Racine’s “I’m Happy I had surgery” thread. It would be good to simply copy and paste your post right in there. That thread installs hope for newbies.

We would love to hear your story, maybe I can talk you into that, and start your own “Introductory” thread. There are not too many elder males here, and your story would be of great value to all that read here.

Fantastic to hear that everything is doing fine with your spine....

Ed

susancook
07-09-2013, 11:25 PM
Evelyn,
Sometimes I hate posting because I don't want others to be discouraged...
I just tried sitting on the floor. I can sit criss cross applesauce with no problems but sitting with legs extended out in front of me is impossible without leaning back and supporting myself with my arms.
I am also still having recall and memory issues... Does anyone else have that issue?
Best,
Heidi

Heidi, glad that you mentioned the recall and memory problem. I write things down in a little notebook, because my short term memory is......short. I can describe what I want to say or what the person looks like, but not the name. Sometimes I can think of the name much later. I thought that maybe it was the narcotics, but it has not improved since going off them.
.....now what was my name...Susan

Chihuahua Mama
10-23-2014, 09:05 PM
I will pretty much have the same fusion as you (not sure if it will be to T3 or T2) but you look GREAT.

hdsluckygirl13
11-02-2014, 11:14 AM
I have read through all the replies on this thread (I think), I am new (obviosly) and just want to thank each and everyone of you for taking the time to share all your thoughts/experiences/xrays/pictures/blogs/etc as it has been so very helpful to me. I have had scoliosis since 1985, and have finally come to a point that I am a candidate for a spinal fusion. I am concerned as to how much I will or won't be able to bend at my waste being fused from T4-S1. I realize that you can most likely still bend from your knees, but can anyone be more accurate on how it is "different"? I would love some pictures of normal everyday activities (brushing teeth, putting on shoes/socks), bending to pick up an item off of the floor). If you aren't comfortable posting the pics on there, just pm me and I will give you my direct email address. Currently I already feel like my bending is limited as my curve doesn't allow me to bend anywhere except at my waist, so I am really curious how the surgery will affect me. I look forward to responses. I will update or start a new thread with my journey to this point in the near future. Hugs to you all, gentle to those still healing. For those that pray, please pray for me that I have made the right decision and strength for my husband and I to make it through this with love and dignity.

Crystal

jrnyc
11-02-2014, 12:29 PM
just a note about short term memory, etc...

in learning disabilities and speech therapy, the things
you describe as having trouble naming is referred to as
"dysnomia"

jess

LindaRacine
11-02-2014, 12:44 PM
I have read through all the replies on this thread (I think), I am new (obviosly) and just want to thank each and everyone of you for taking the time to share all your thoughts/experiences/xrays/pictures/blogs/etc as it has been so very helpful to me. I have had scoliosis since 1985, and have finally come to a point that I am a candidate for a spinal fusion. I am concerned as to how much I will or won't be able to bend at my waste being fused from T4-S1. I realize that you can most likely still bend from your knees, but can anyone be more accurate on how it is "different"? I would love some pictures of normal everyday activities (brushing teeth, putting on shoes/socks), bending to pick up an item off of the floor). If you aren't comfortable posting the pics on there, just pm me and I will give you my direct email address. Currently I already feel like my bending is limited as my curve doesn't allow me to bend anywhere except at my waist, so I am really curious how the surgery will affect me. I look forward to responses. I will update or start a new thread with my journey to this point in the near future. Hugs to you all, gentle to those still healing. For those that pray, please pray for me that I have made the right decision and strength for my husband and I to make it through this with love and dignity.

Crystal

Hi Crystal...

I'm fused T4 to the sacrum. I feel like I'm very limited, but I know others who have even longer fusions who don't feel as limited. I suspect it has to do with how limber one is in the hips and legs, and how thin one is (I'm not). I cannot sit on the floor unless I'm against a wall. And, I never allow anyone to see me trying to get up from the floor. It's quite awkward. I have to wear compression socks, and the only way to get them on is to use a frame.

With all that said, I still think I made a good decision to have the surgery. I don't think I could have lived with the pain I had for much longer. And, with the exception of finding it difficult to get up and down from the floor and picking things up from the floor, the lack of flexibility isn't horrible.

golfnut
11-02-2014, 03:04 PM
Crystal,
I am fused T4 to the sacrum and seldom think about any limitations now at almost 4 years post op. I was extremely careful with the no bend, no twist, no lift restrictions during the first six months or more. While things were difficult for the first year or two, I noticed gradual improvements with flexibility. I can put on socks and tennis shoes without using the sock aide. I either put a foot up on a cedar chest or sit and cross one leg over the opposite knee. My bows of my tennis shoes used to be on the sides, but now are on top. I used a disposable razor with a long handle for probably a year, but can now shave my legs with regular razor. I can sit on the floor to play with my puppy, but it is more comfortable to lean slightly back if my legs are out straight or squat on my knees. I can cross my legs and sit up straight and also get on and off of a floor mat in exercise class. I basically do a log roll but it's so fast that I don't think it looks weird. I cannot bend at my waist but bend from my hips almost parallel to the floor. My signature has a video of my first round of golf a year after my surgery. For me, life has been good following my surgery and my limitations are minimal. I feel like my future to include an active life is more promising since I had surgery, although I know there are some who haven't had as much success as I have and I truly feel bad about that.

hdsluckygirl13
11-02-2014, 07:41 PM
Hi Crystal...

I'm fused T4 to the sacrum. I feel like I'm very limited, but I know others who have even longer fusions who don't feel as limited. I suspect it has to do with how limber one is in the hips and legs, and how thin one is (I'm not). I cannot sit on the floor unless I'm against a wall. And, I never allow anyone to see me trying to get up from the floor. It's quite awkward. I have to wear compression socks, and the only way to get them on is to use a frame.

With all that said, I still think I made a good decision to have the surgery. I don't think I could have lived with the pain I had for much longer. And, with the exception of finding it difficult to get up and down from the floor and picking things up from the floor, the lack of flexibility isn't horrible.
Linda,
Thank you so much for your honesty. I am beginning to believe that flexibility both before and after the surgery and your size/weight determine allot of the after surgery possibilities too. Seems like how far one is fused doesn't always make them completely unable to bend. Just wish I knew for certain. LOL So are you able to kinda bend over say when you are brushing your teeth? Does that make sense? I have trouble getting up off of the floor now! LOL Hugs,
Crystal

hdsluckygirl13
11-02-2014, 07:47 PM
Crystal,
I am fused T4 to the sacrum and seldom think about any limitations now at almost 4 years post op. I was extremely careful with the no bend, no twist, no lift restrictions during the first six months or more. While things were difficult for the first year or two, I noticed gradual improvements with flexibility. I can put on socks and tennis shoes without using the sock aide. I either put a foot up on a cedar chest or sit and cross one leg over the opposite knee. My bows of my tennis shoes used to be on the sides, but now are on top. I used a disposable razor with a long handle for probably a year, but can now shave my legs with regular razor. I can sit on the floor to play with my puppy, but it is more comfortable to lean slightly back if my legs are out straight or squat on my knees. I can cross my legs and sit up straight and also get on and off of a floor mat in exercise class. I basically do a log roll but it's so fast that I don't think it looks weird. I cannot bend at my waist but bend from my hips almost parallel to the floor. My signature has a video of my first round of golf a year after my surgery. For me, life has been good following my surgery and my limitations are minimal. I feel like my future to include an active life is more promising since I had surgery, although I know there are some who haven't had as much success as I have and I truly feel bad about that.
Karen,
Thank you so much for your reply, it really helps to know that there is hope after surgery to possibly be somewhat the new normal again. I really appreciate how you describe how you put your shoes/socks on, as I have been wondering details about all kinds of that stuff. I am one that if I know what to expect both good/bad I am at ease. The not knowing anything drives me bonkers. I love your "bows on tennis shoes", I can completely relate to what you mean. When you mention that you cannot bend at your waist, but bend from your hips almost parallel to the floor is that what you do when you are picking up the tee in the golf video you posted? Just trying to get an idea of how you do it. My legs are pretty weak, also wondering what sort of exercises I could do beforehand to maybe strengthen them, as I realize that you use your arms/legs WAY more after. I too feel bad for all that are worse off or in more pain following surgery than before. I pray everyday that I am making the right decision for me, and feel confident that if I am not, that I will know before the surgery. Hugs,
Crystal

jackieg412
11-02-2014, 08:40 PM
Hi Crystal, as far as the weakness in your legs----- You really need strong legs going into this surgery. Since you cannot bend or twist at first, your legs do all the work. I walked a lot as my surgery was delayed. You can ask for physical therapy to help. It is very important to have strong core and legs.after surgery you will have to maintain this. I was fused to the pelvis in my first surgery and then extended to t-2. I still tie my shoes with bows on the side. But I get them tied. Reaching the floor is hard. My arms aren't long enough but I can get all the way down, get what I need and then stand up. Getting up can be less then perfect but I still do it. The unknown can be scary. As the years pass it does get easier. As Scoli people cope!

Irina
11-02-2014, 10:47 PM
Hi Crystal,

I am fused T6 to sacrum and don't think that I am limited much. To brush my teeth, I just bend from my hips over the sink, but you can't do it right after the surgery. In the beginning, you would have to stay straight and have two glasses in front of you. Fill one with water and use another one to spit it out. Or, just brush your teeth in the shower - open your mouth to get water and spit it out anywhere you want. I did it for half a year after the surgery and then started brushing my teeth like normal people do - over the sink.

golfnut
11-03-2014, 01:11 AM
Crystal,
I will send you a PM so we can exchange email addresses if you would like me to email some pictures. Seeing is believing. I remember before surgery thinking that it would be impossible to swing a golf club with long rods down my back and asked Ed to try it to see if it would be possible. It was reassuring to me to hear from others on the forum that I would not be "The Tinman" for the rest of my life.

Joyce B.
10-02-2016, 05:08 PM
Here are some pics that will show how far I can twist with a T2-pelvic fusion.
I also have pics of my rib hump, which is now much less. I still have about 30 degrees rotation in my vert, verified by my cts. My hump was much worse before my surgeries.

Hopes this gives some idea as to limitations after a full fusion.
Ed

Ed, I just looked at your X-ray now (as I have had some difficulties with the site, could only access the first link). You are fused like I am. I am uncomfortable 24/7, even when trying to sleep. What about you? How do you manage now, post-surgery? I don't clean, (have a cleaning lady and my husband helps), I cook (with difficulty), if I drop something on the floor, picking it up is a problem (don't always have a grabber near-by), even showering and washing my hair is an ordeal. I can't lift either. Everything takes so much time! I had a very active life with work, entertaining, some traveling. Now, I mostly sit and think back to how good things used to be.

Joyce B.
10-02-2016, 05:14 PM
Crystal,
I will send you a PM so we can exchange email addresses if you would like me to email some pictures. Seeing is believing. I remember before surgery thinking that it would be impossible to swing a golf club with long rods down my back and asked Ed to try it to see if it would be possible. It was reassuring to me to hear from others on the forum that I would not be "The Tinman" for the rest of my life.

God bless you! You are doing so well! My story is very different! Where did you have your surgery and who performed it! I think you are fantastic! Good luck always! Joyce B.

golfnut
10-02-2016, 05:38 PM
Joyce,
To answer your questions . . . I had my surgery at Barnes Hospital in St. Louis with Dr. Lenke on January 5, 2011. I know that I am more fortunate than many on this forum, but I think that many success stories like mine are not posted, as people tend to drop the forum after their recovery. I truly feel bad for anyone who has continued pain and regrets having had the surgery. I was in the best physical shape of my life before surgery, but still attribute the success to Dr. Lenke. How long ago was your surgery?

LindaRacine
10-02-2016, 07:58 PM
Ed, I just looked at your X-ray now (as I have had some difficulties with the site, could only access the first link). You are fused like I am. I am uncomfortable 24/7, even when trying to sleep. What about you? How do you manage now, post-surgery? I don't clean, (have a cleaning lady and my husband helps), I cook (with difficulty), if I drop something on the floor, picking it up is a problem (don't always have a grabber near-by), even showering and washing my hair is an ordeal. I can't lift either. Everything takes so much time! I had a very active life with work, entertaining, some traveling. Now, I mostly sit and think back to how good things used to be.

Hi Joyce...

How long ago was your surgery? And, can you describe why everything is so difficult? Is it painful? If so, where?

--Linda

Joyce B.
10-08-2016, 07:23 PM
Linda, I didn't see your post until today...sorry. My first surgery was in 1969 by Anthony DePalma. He was head of ortho at Jefferson U in Phila until he retired the following year. Richard Rothman took over then with The Rothman Institute. I had my revision surgery there by Dr. Alexander Vaccarro in 2006. I had many complications (almost was one of the 25% mortality risk I was warned about). I was in a coma on a ventilator in the NICU for 17 days. I finally regained consciousness and went to a rehab facility. Total hospitalization and rehab facility was about 2 months. After I went home, I continued with outpatient therapy for 4 months. Then I joined a gym/indoor pool and continued my Aqua-therapy on my own. I was a
successful realtor in Mercer Cty NJ for. 23 years. Because of my fusion T-2 to the sacrum, and my diminished general stamina, I was forced to retire. I continued Aqua-therapy until we moved to Fl in 2012.

Sometime after my surgery and rehab, I actually was able to walk unassisted by a cane, etc. however, that did not seem to last very long. As time went on, I have become less active. Everything I do seems a chore.
I had been on narcotic pain meds for many years, and at my own doing, I have been weaning, and am now down to 2.5 mgs of something I don't want to mention. Hopefully, I will be finished soon.

I previously joined the forum back in 07 and had communicated at that time with Karen O., who was very helpful. Since I re-joined recently, I have investigated many things I have learned on the forum. One is that I may never be finished with my scoliosis problems until the end. Also, I read an on-line article by Dr. Matthew Cunningham at HHS in NYC. In the article, he discussed problems after surgery related to balance problems and limitations with walking which could be caused by scar tissue. I'm sorry if I am repeating, but there is a lot of background information.

Best way to describe is that I am uncomfortable sitting (unless I am in my recliner), I have a Temperpedic mattress, but still have difficulty getting comfortable and falling asleep. I wake up often and fatigued. I can stand for about 1-1/2 hr. then I need to sit and take a break. My limitations with walking are mechanical, my legs don't want to move well or quickly. I have a very "heavy" feeling at my lower back. I am no longer in pain. I have very little stamina. My condition was worsened over the last 4 years or so. And last year, I fell backwards on a ceramic tile floor and fractured T-5. Another 7-month ordeal. Oh, I have poor balance also, which I now realize may have caused the fall.

I also have osteoarthritis in both knees, one is getting very bad. Don't know where to turn. I feel that I have a poor quality of life, despite the fact that I thank God everyday that I am alive. If you have any information, ideas, suggestions, etc., I am open to any. Thank you Linda. Joyce

LindaRacine
10-09-2016, 01:45 PM
=My limitations with walking are mechanical, my legs don't want to move well or quickly. I have a very "heavy" feeling at my lower back. I am no longer in pain. I have very little stamina. My condition was worsened over the last 4 years or so.

Hi Joyce....

Unfortunately, I don't have any answers for you.

I could, however, have written those sentences above. I have almost the exact same issue. The heavy feeling I have is more in my butt however. I've been relatively certain that it's not a spine issue. It definitely doesn't feel like radiculopathy. Strangely, I have an occasional day where the symptoms disappear and I can walk normally, which makes me think it's somehow neurologic. When it's bad, walking down the hall is a problem. Usually, I can walk for about a minute without too much difficulty. I found that walking with a cane helps a little. I can, however, ride my stationary bike for half an hour, so the problem seems to be weight bearing.

Is it possible that you have both a problem with your spine, and something else?

--Linda

Joyce B.
10-09-2016, 05:36 PM
Linda, thank you very much for responding. I'm sorry to hear that you have some of the same issues that I have. I had been on Lyrica for sciatica in my right leg, but I weaned-off a couple of years ago. I still have numbness in my right thigh to my calf then extending to the outside of my foot. But when I touch my toes with anything, I do have feeling everywhere. It's very strange. I can't walk without support - in the house I use a cane or hold on to things. At night, I use my walker if I go into the bathroom where I fell. Also, any time I leave the house, I use my walker - there's much more stability. I try to do my PT exercises, but find that nothing helps. I also feel wobbly and unbalanced when I walk, which I think attributed to my fall last year. I do have mitral valve prolapse and see a cardiologist regularly, in addition to my internist. I had pharmacological stress tests, regular echo-cardiograms, etc. Things seem stable there. But who knows? I have been thinking of seeing someone at HSS in New York. I read some on-line articles by Dr. Matthew Cunningham where he speaks about scar-tissue possibly causing poor balance and limitations with walking.
Maybe that could be a cause. Do you know anything about this Doc? Even if I thought some more surgery
would help, I not sure what

jackieg412
10-09-2016, 06:00 PM
Joyce, in the article that you talk about the scar tissue did it mention anything about it causing sciatica? It would seem that if it is possible to create an imbalance issue it may be a cause of radiculopathy.
Are you sure from your last surgery that your spine is indeed balanced?
I know I am off some but can correct by putting my arm behind me .

LindaRacine
10-09-2016, 10:16 PM
Linda, thank you very much for responding. I'm sorry to hear that you have some of the same issues that I have. I had been on Lyrica for sciatica in my right leg, but I weaned-off a couple of years ago. I still have numbness in my right thigh to my calf then extending to the outside of my foot. But when I touch my toes with anything, I do have feeling everywhere. It's very strange. I can't walk without support - in the house I use a cane or hold on to things. At night, I use my walker if I go into the bathroom where I fell. Also, any time I leave the house, I use my walker - there's much more stability. I try to do my PT exercises, but find that nothing helps. I also feel wobbly and unbalanced when I walk, which I think attributed to my fall last year. I do have mitral valve prolapse and see a cardiologist regularly, in addition to my internist. I had pharmacological stress tests, regular echo-cardiograms, etc. Things seem stable there. But who knows? I have been thinking of seeing someone at HSS in New York. I read some on-line articles by Dr. Matthew Cunningham where he speaks about scar-tissue possibly causing poor balance and limitations with walking.
Maybe that could be a cause. Do you know anything about this Doc? Even if I thought some more surgery
would help, I not sure what
Sorry, I don't know anything about Dr. Cunningham.

Have you worked on your balance issues with your physical therapist? I had balance problems after my original scoliosis surgery, and finally worked with a PT on it, about 4 years ago. It helped considerably.

--Linda

Joyce B.
10-10-2016, 10:29 AM
Yes, Linda, I have sent myself this past Spring for PT & Aqua Therapy specifically geared toward improving balance. After about seven weeks of visits 3x per week, my re-evaluation showed no improvement. Does anyone have any adult scoliosis revision revision surgeons they might recommend? Preferably where I have family. Thank you. Joyce

Joyce B.
10-10-2016, 10:46 AM
Joyce, in the article that you talk about the scar tissue did it mention anything about it causing sciatica? It would seem that if it is possible to create an imbalance issue it may be a cause of radiculopathy.
Are you sure from your last surgery that your spine is indeed balanced?
I know I am off some but can correct by putting my arm behind me .

Jackie, no, I'm not 100% sure, but I am confident that the surgeon addressed correcting flat-back syndrome as well as correcting the curves as much as possible. When I run my hand down my spine, it is as straight as it should be. My hips are now balanced over shoulders and head (not like before) My sciatica began after three months of very aggressive physical therapy by a very big man who was about 6'5". His hands were huge. And when he completed lumbar deep-tissue massage, I could not walk when I got off the table. This forced me to take Lyrica, which helped the leg pain, but gave me vision problems. I self-weaned off that drug, and now the sciatica is manageable. (Vision problem resolved).

Funny, but I do the same thing with my arm. My therapist suggested swinging my right arm naturally, but I feel more stable when I place it behind my waist walking with a cane in my left hand. Never thought about that before. Thank you.

Joyce B.
10-10-2016, 10:53 AM
Joyce, in the article that you talk about the scar tissue did it mention anything about it causing sciatica? It would seem that if it is possible to create an imbalance issue it may be a cause of radiculopathy.
Are you sure from your last surgery that your spine is indeed balanced?
I know I am off some but can correct by putting my arm behind me .

Jackie, you have been through so much more than me. Yes, the article spoke of many complications caused by scar-tissue because it can further compress the nerves.

After all you have been through, what s your life like? Are you a younger person? Joyce

Joyce B.
10-10-2016, 11:17 AM
Joyce,
To answer your questions . . . I had my surgery at Barnes Hospital in St. Louis with Dr. Lenke on January 5, 2011. I know that I am more fortunate than many on this forum, but I think that many success stories like mine are not posted, as people tend to drop the forum after their recovery. I truly feel bad for anyone who has continued pain and regrets having had the surgery. I was in the best physical shape of my life before surgery, but still attribute the success to Dr. Lenke. How long ago was your surgery?

Karen, first thoracic surgery in 1969 when I was 19, revision surgery t-2 to the sacrum in 2006. I was not in the best shape despite working very hard as a realtor. I had many complications, almost didn't make it. Trauma team at Jeff U brought me back. You're right - when folks have a great result, they no longer continue on the forum because they don't need the support. I was in better shape when we moved from NJ to Fl in 2012. Cannot understand what is causing a general decline, but I have to look into this because I cannot go on like this. Joyce
P.S. - I never regretted having either surgery as I fully understand what could have happened.

jborden
07-27-2017, 01:35 PM
My name is Jenson and I am getting things (insurance) squared away so I can undergo this scary, necessary surgery. I am 56 and married to a wonderful man that encourages me daily to do the best I can. I have a double curve T4-11= 50 degrees, T11-L3 =78 degrees, L4-5 laterolisthesis = 8mm, trunk buckling to the right by 2.4 cm. Also Kyphosis measuring 67 degrees and Lordosis measuring 45 degrees. I have pain almost constantly and I've met with a scoliosis surgeon but would like to know if anyone has seen any surgeons in North Carolina??
As afraid of the surgery as I am, I am equally afraid of what is happening in the last 2 years to me and what will happen if I don't. My spine has twisted as it curves and I have declined greatly due to degenerative disc and facet arthritis making things much worse.
I have loved reading about the successes of many of you and hope for better days for those still suffering setbacks.

Have the best day possible!

Jenson