Fusion All The Way To Pelvis??

[Kate]

:confused:Can anyone please share their experiences about being fused all the way to your sacrum? My revision surgery will involve this. I have been educated about limitations on flexibility etc. But would really appreciate some firsthand stories/advice!

[discombobulated]

Hi Kate,

My fusion originally went from just below my neck (T2 or T3, I think) down to my lumbar spine (about L3), but then it was extended right down & anchored into my pelvis. You'll see in my sig that I'm soon to get this part revised, but please be assured this is not common, & is only because of other medical issues that I'm dealing with.

Apparently the hardware for use in the spine and the gear used to anchor into the pelvis has come a very long way in just the last few years, allowing surgeons to get better & more stable correction than ever before. Today's technology is incredible! :)

Yes, such extensive fusion will affect your flexibility - but once you're used to it, it's not really something you'll notice a lot. You might be interested in this (http://www.scoliosis.org/forum/showpost.php?p=67558&postcount=53) post from Mary Ellen, whose son Sidney just had extensive fusion surgery (& is doing AMAZINGLY).

Hope this helps you out a little. There are plenty of members who have had this type of fusion surgery, & who are doing great.

Best wishes to you. Take care.

[CHRIS WBS]

Hi Kate,

I have a fusion to the sacrum and am five months post-op. I have lost a lot of flexibility. I need sock aides to put on my socks. You should have seen me this morning trying to get on opaque tights. What a circus act! I did get them on though. I can’t reach my toenails to cut them so I get pedicures. I can shave my legs though by maneuvering around. Since I’m restricted from bending, I don’t even dare to try and pick up something off the floor. I use my reachers and grabbers. And I use them when I do my laundry to take clothing out of the washer and dryer. When I was told that I required a fusion to the sacrum, I was freaking out about losing all my flexibility, but I have adapted. And I was also told that because of the severe progressive curve I had that I would eventually lose the ability to bend anyway. I’ve had benefits from my surgery that far exceed the loss of flexibility so I’m quite pleased and I think you will be too.

Chris

[LynnMarie74]

Kate, did u get a 2nd or 3rd opinion? I did....and Im glad I did. The 1st surg. said it must go in my sacrum, and I was mortified. He explained how extensive it would be, and told me about the additional risks and limited mobilty as well. I was not happy with this and found the doc I have now....Dr Clifford Tribus. He feels very confident that he can "save" the last vertabre. Explained that yes, eventually I will need that last one fused as well..years down the road due to over use and abuse on the one remianing, I would have a better quality of life now. Made sense to me. Its worht another opinion & it will make you feel better too, as it did me. Do what feels right as you only have one spine, so pick and choose your battles well! :) Good luck!

[Kate]

Hi LynneMarie, Yes I actually sought and received 5 :eek: opinions. 4 in agreement. There is also some additional stuff going on that "upped the ante" and due to my age (37) and medical presentation, left little doubt this is it. Thanks for asking:)

[rainbow2010]

Due to the pain you are having, you probably won't notice much difference. My back fuse itself down to there. I use my legs for bending. It is no different than being 8 -9 months pregnant!

[LynnMarie74]

Well, thats good. You say "due to your age"....37 is not old, Im 34....granted, the ideal age for this surgery is the "teenage years"....but eh, we'll bounce back quickly I'm sure! Doesnt getting old suck?! lol Im dreading my 35th in April...ughhhhh! Take care!:D

[Kate]

You know you are so right LOL. I think I feel so old because of the ****** pain! Hee hee:p

[Kate]

Thanks everyone for your thoughts, it helps so much. My surgery is December 19 at Baylor with Dr. Shelekov's partner Dr. Hostin (I see them both-maybe they switch me around because I am sucha regular customer LOL).

They are really great because they actually fit me in the schedule since I am in so much pain. I actually didn't sleep at all last night - you'd think with all these meds I would be knocked out! My 8mo old puppy sleeps with me and he was not at all appreciative of all my tossing and turning, he will probably chew more carpet today in revenge:D. Actually stupid as it sounds the dog has been a big help getting through this. Think Baylor will let him visit? (lol)

Did anyone have to wear a brace after this surgery? I didn't after my first one.

[Geish]

Hi Kate,
I sent you a PM regarding this thread. Good Luck.
Geish

[trishthedish]

Hi, Kate-I am a Shelokov patient also, and I did have to wear a brace. My problem is sort of opposite of yours. I am fused upwards to C1, so my brace involved the neck collar as well as the TLSO. Wasn't too bad.

[augemac]

Kate 7 Lynnmarie74,

I am 32 but all this pain doesn't make me feel young at all. I understand totally!! LOL I feel older then my mom at times and that ain't good. haha:p Getting older is --------:eek:

[JulieBW]

Someone on this thread said they were getting old at age 34???? Just wait until you reach your 50's! But really, I am very blessed to have had relatively few problems with technology that was very new when it was put into my back. At that time they certainly did not recognize the stress a fusion places at its base. So while you will be somewhat limited in your bending, if you have a fusion to the pelvis now, you will avoid the likely problems as you grow older.

[titaniumed]

Kate

You should have seen me trying to get my opaque tights on! LOL (that's a joke guys)

Actually, for getting socks on what I do is use a stool that is 24 inches above the floor, set my foot on the stool and lean into it.
If you cross your leg as if you were starting a yoga sitting position, you should be able to push your foot up into your groin area which will give plenty of access to the foot. I clip my toenails this way also. I have thrown my sock installer in the trash. A short length sock with a high amount of (stretchy) latex is preferable. I put 2 socks on in 5 seconds now.

The way women remove their bras with a shirt on is a little too complicated for men to figure out. I've been thinking about that for years, and basically I have given up. As far as the tights goes, I don't know, cut the crotch out and go over the head? Start inside out, and jump up and down.? When one of you figures it out, don't tell me, I don't care! LOL

Before my surgery, I was able to bend over and press my palms flat on the floor. Now with a little knee bend I can touch the floor with my fingertips. Once I get my legs stretched out again, I will be able to touch the floor with my fingertips.

I had absolutely no choice in my decision to have surgery due to my extreme pain and sciatica. I was corked hard down low,and I expected to be fused all the way to the pelvis. Change is always difficult, and adaptability is something that we learn no matter what happens. After one adapts, you always look back and think, 'wow that wasn't all that big a deal'.

A long time ago down in San Diego, I was sitting by a pool and there was this guy with no arms. He had a pack of cigs in his shirt pocket and I was wondering how he smoked them. All of a sudden, he pulled the pack from his shirt pocket with his toes, inserted a cig into his mouth, took a book of matches out and lit the match with his toes, and lit his cigarette. Now this is an example of adaptability.

He wasn't wearing tights.

Good luck
Ed

[JoAnn5]

ROFL, Ed!!!!!!

Thanks for the laugh.... Now i'll think of this the next time i'm wrestling with panty hose!

[JenniferG]

This is the kind of thing those of us on *this* side of surgery need to know to help prepare for. I'm starting to try getting through my day with a straight back, without bending. I can't do squats very well because of sore knees, but this morning I fed the cat, squatting with my knees wide apart for balance and a straight back. Hopefully, I'll get better at it. :D At least the cat didn't laugh.

[augemac]

Ed,
Thanks for the laugh.

JenniferG,
I am proud of you. Getting your mind and body ready is an awesome thing to do. That is good advice for me to think about.

[Diane BCSW]

Why are you guys even messing with panty hose? Is it a work thing? Since January's surgery, I've worn them one time and it took about 10 or 15 minutes to wiggle into them. The only way I would ever wear them again is because I have "tummy control" ones and my tummy is most definitely out of control.

[augemac]

The only way I would ever wear them again is because I have "tummy control" ones and my tummy is most definitely out of control.

Diane,

That is just to funny. I definitely hear that one! My tummy has never gotten back to normal after my kids!! ;):D

[dmlee55]

Hi kate

you will do great. I am fused t2-s1 & i did well. However, my surgery was actually life or death. My age was also against me. One of my curves was 90* heading towards my lung. Soon my major organs would have been involved.
Good luck to you. Bending can be tricky !! :)

[Sharshe]

Hi Kate,
I am fused from T-3 all the way to sacrum and out to the iliac. I had the surgeries back in May 2008. I have found that its really important to be able to squat (and get back up;)). So work on that before surgery. You also will have to find new ways of doing some things, for me I was already making those changes for years because of back problems. All in all its not bad being fused that far, just different.
If you look at some of my past posts(actually DH and Susi*bee posted a lot for me) I ran into some problems. I'm still fighting infection, which causes some pain and still general recovery type aches and pains (hey does the damp and cold bother anyone?)but I can mostly deal with that with OT pain relievers. Even with the negatives I'd do it all over.
Good luck, if you want you can pm me.
Sharon

[Kate]

Thank you everyone-I can't believe time seems to be going so fast. I received all my preop instructions and appts yesterday and I started to cry! I am not the indestructible teenager that I was for the first surgery (seriously, my parents were freaking out and I couldn't understand "mom and dad it's just back surgery"). I am making a list of stuff to bring with me to the hospital and rehab besides the normal stuff like loose fitting warmups, etc.
any suggestions for comfort items?

[augemac]

Kate,

I can't remeber my last big surgery what I wore or did but in today's world everyone has a ipod or mp3 player. I would suggest your favorite music and lay there and relax. Take care.:)

[trishthedish]

Kate-I didn't need much in the hospital in the way of clothes because of all the tubes, you just wear gowns. But I had to have my chapstick, hand lotion, and saline nose spray. Glasses if you wear them. And slip-on shoes. The physical therapists don't like you to wear bed slippers because they don't grip your feet well and you can fall. I brought a pair of Ryka slip on tennis shoes and they were perfect. Oh, you can bring socks, but the hospital supplied me with the sleep socks with the grippers on the bottoms. As a matter of fact they gave me bright red ones because they said I was a fall risk. Ya think? Ha!

Also, I got a manicure and pedicure the day before I left for the hospital so I didn't mess with my nails at all. As a matter of fact the hospital staff kept walking by and picking up my hands to look at my nails, even when I was semi out-of-it! The nail tech did really good work apparently, and I should have brought her business cards to give out!