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jeneemohler
11-30-2010, 11:00 PM
Ok guys, I need to pick your brain. I just picked up my leave of absence paperwork, and found out my fusion levels. It will be T4 to S1. Any thoughts or information on mobility/flexibility would be appreciated. Ed-are ya out there??

It is getting so close-6 weeks to go!!! I have to admit, I have some days that I'm really looking forward to relieving some of this nerve pain and getting the ribs off my pelvis. Can you say long and lean??? But the closer I get, the more days I have where I think "OMG! What am I doing!?!?!? Maybe I should wait another year or two. I've put up with it this long, what is a couple more years."
Then the AHA moment returns, and I think about how I've shrunk 3" since January and the increasing pain that has come along with it... Yep. Gotta do this. BIG sigh.....

Thanks for letting me vent and whine, my friends!

BadKitty
12-01-2010, 12:59 AM
Jeneé, I had the EXACT same "OMG!" feelings as you! Over and over again, leading almost up to my surgery day. Always followed by the same "oh yeah, now I remember why I'm doing this."
It's like I had to continuously re-establish the rationale of having it done, which I always did. Ultimately, there WAS no other choice for me, at 57, osteopenic, and with increasingly painful symptoms. It was only going to get worse, and my options more limited and difficult - possibly nonexistent - if I waited.

My fusion was only from T11 to the sacrum, though. Did you ever see Ed's bending photos? It's amazing, the bending and twisting he can do. I hope he'll post those again for you! But me, I'm only getting pretty good at picking things up off the floor with my toes. :)

cathydrew
12-01-2010, 07:10 AM
As I continually read this forum SEVERAL times a day I have so many reactions but rarely post.... this one hit home with me. I am looking at T2-S1 in late March. I am the kind of person who is on the floor, retiling the bathroom and foyer, setting up computers, lifting, fixing, finagling, redecorating, doing electric and plumbing (I remodeled the whole bathroom), picking up my long haired cat's puffballs as he sheds, water and snow sking, dancing, teaching 6th grade with no classroom (on a cart) etc.

I get SO upset when I realize 1) There will be months when I can do NONE of this while recovering and B) Some of it will become awkward if not impossible in my future. I have nightmares about being on the floor hooking up something or other and not be able to get up... ending up like a turtle on it's back LOL. HOWEVER I cannot WAIT to get this surgery and get on the road to recovery pain, not progression and debilitation pain. My curve and pain has gotten worse so quickly (maybe slower than I think but it's getting bad) that I am afraid of what the six month x-rays will show.

My Doctor - Baron Lonner - seems to think I can still do EVERYTHING (eventually) just in different ways. No turtle on the back problems - I hope! I guess my main idea for this reply to you is this: GET IT DONE! The anticipation is horrible but the reason is not going away. It sucks that we got stuck with this stupid scoliosis, but it could be worse - it could be 1970 when there was no medical advancement as there is today and we'd all be stuck in body casts for a year OMG.

As scary as it all is I wish it were a year from now in my life so I'd be an "after."

Best,
xoxo

naptown78
12-01-2010, 09:31 AM
I wanted to reply to this post as a person who has had fusion from T4 to sacrum and then revision T11 to pelvis. My belief is that you can do what you push yourself to do...meaning that if you want to tile the floor you will find a way to do it. Noooo you will not be a turtle on your back, LOL! I will not lie, there are things that are a little more difficult to do but you will notice them more infrequently as time goes by. For example, as I was putting up my Christmas decorations (which was much easier this year than last), I had to get down on the floor, reach under a piece of furniture to plug something in and this was difficult and awkward BUT not impossible. I just had to squirm a bit to get in the right position. I do pick up my dog hair puffs, I can bend to the floor, I am just a bit slower than before. Be positive, keep in mind the good things that will come from your upcoming surgery such as the relief of your pain, and better fit of your clothes ;-)))

titaniumed
12-01-2010, 09:49 AM
Jenee

Been pretty busy lately...and guess what? I went skiing on Sunday. No problemo.....I take one of the boys along to help put my boots on, and also to “break them in” He he. (Slightly evil laugh)

T4-S1.. That’s a good one.... Yes it can get kinda freaky coming up on your date, but try to be positive and think about your goals. There will be a few tough chapters in the book, but the ending is fantastic!

I wish that everyone that has these surgeries realizes that it is serious, they do hurt like hell, and taking time off to recover properly is extremely important. Work should be determined by your body and not your brain. Having all your “ducks in a row” is important. It takes a long time to heal.

Guess what? Today is Linda Racine’s birthday! and I didn’t forget, I’m such a dork sometimes. Happy birthday Linda.

Cathydrew
Yes, it could be worse.....much worse. Actually, we are very lucky.
Ed

jeneemohler
12-02-2010, 09:23 PM
Thanks, everyone!!

I cannot believe how much I have come to rely on my friends and counselors here on the forum for support. When the site was down, I was going NUTS not being in contact. (Nuts is a relevant term, isn't it?) It is worse-and even more addictive-than FB. Well, actually BETTER, but you know what I mean!

My roller coaster has been on the level track today. My district manager was in town and I had a long discussion with him about my job, and the likelihood of being able to come back to it or not. (Probably not, if I'm honest with myself) It's funny, but a strange sense of calm and acceptance came over me. I am most definitely a perfectionist and control freak, so leaving my department and crew in someone else's hands after over 20 years with the company has been difficult to accept. But today, I just let go and said "so be it". If I can go back-great. If not, I will find something else. I've always dreamed of full-time volunteering, instead of fitting it in whenever I can. So I've decided that I just have to roll with the punches.

Ed- you LUCKY dog, you!!!!

Thanks everyone, and goodnight!

JenniferG
12-02-2010, 10:18 PM
I'm fused T4 to pelvis and at 21 months post op, am finding my flexibility is still improving. Picking something up from the floor is easy, there's no stiffness or pain. But, I scrub the shower floor on my hands and knees and it's awkward, bending over the bath to clean it is awkward, bending into the oven to clean it is awkward. But I can still do all those things. And pre-surgery, those are the jobs that would cause a lot of pain. Doing them now, there's no pain whatsoever, just awkwardness. And I can stand all day without pain. It's wonderful.

jeneemohler
12-02-2010, 10:29 PM
Wow. What a light bulb moment. Jennifer, you really had the perfect way of putting it all in perspective. Who cares if I can bend, if it is always with pain??? To be able to do those things without pain-just awkwardly- is a great trade off. You are brilliant!!! Thank you.

foofer
12-02-2010, 11:10 PM
Hi Jenee',

I was missing the forum big time as well...I had one of those little kid fears: Oh no, where is it? Is it gone.....Forever?! NOOooooooooo...(wanted to put a little screamy face dude here but there's only question marks available.) Never mind, we are back up, Thank God.

I don't know you well, but it feels like I do, and I can see you just flourishing after wandering away from your present job. The world might just be your oyster. I'm glad you feel calm about this. You should.

On Thanksgiving, I tweaked my back mildly- don't know how, so I'm calling it a turkey basting injury. Woke up next day a little stiff but business as usual, and every day since has been a little worse. Getting out of bed is interesting. It made me think all day about: If I get worse with my pain in general this is what it would be like. I feel confident that this particular incident will subside but part of today it felt like I had an arrow going through my right hip. Not fun. And not something to look forward to if this will happen with greater frequency.

I've also been concerned with what would I do without my present job. If I get fused will I be able to drop down to the floor to pin a pair of ski pants- something I do now frequently? I was designing in my mind a fold up podium for customers to stand on so I wouldn't have to lower myself to the floor. I was picturing asking my bosses/company owners if they would pay for it. (They would, I'm sure). But by the end of the day, I had mentally quit my job and was doing all sorts of other wonderful things- so there! Fun to think about. By early evening, I was travelling, raising money for scoli concerns, painting, and writing country music. (smiling face needed).

Hang in there, J! Happy holidays and good thoughts coming your way!
Amy

jeneemohler
12-02-2010, 11:45 PM
Oh boy, you understand my panic when I couldn't get in to the forum!! Gut reaction was exactly the same!

Arrow through your right hip??? Sounds exactly like my pinched nerves. I had one, but with the increasing curves, I now have three of those buggers. That is one of the main reasons I am going ahead with the surgery. It can be so aggravating....
If what you are experiencing is also a pinched nerve, it is a good idea to let the inflammation calm down, so as to not put so much pressure on the nerve. Are you on any anti-inflammatory meds? It will feel better when that inflammation subsides. Take it easy for a few days if you can! Of course, I'm no Doctor, but that is what my experience has been for nearly 15 years now... And yes, getting out of bed is the worst! I am usually a little better after I get moving around, but always wonder if today is the day I won't be able to do my job....

I hope you can make adjustments for your job. It seems like you could... Or we could start a support group and travel and help others!!! Gotta dream big, right???

I sure wish we lived closer....... I think we would have fun. I'm sure glad Kathy/Cathy brought us together!!!!! Funny how life works, sometimes, isn't it?

Take care, my friend, and get some rest!

ADMoul
12-03-2010, 05:28 PM
Wow - logged on here and didn't even recognize it! Jenee, I am fused T 4 to sacrum, am about 10 months post-op and doing great. I teach elem. and middle school strings, have been back at work since Sept. and can do just about anything I could before. Yes, bending is a little awkward and I don't set up and tear down concert set-ups the way I used to, but teaching without pain rocks! In fact life in general without pain and tingly nerve things going on rocks! Those early weeks are not fun, but when you look back on it, it's a relatively short amount of time that's hellish. I had lots of time to heal and recover and didn't stress out about missing work. (Actually it was kind of nice being away from the drama.) Anyway, I totally agree with the statement about it being better to do things a little differently than to have pain prevent you from doing them at all! Good luck to you!

golfnut
12-03-2010, 07:56 PM
Jenee',
I like your post because I can identify with it totally. As you know, my surgery is 5 days before yours and I think about it every day. There are days that I think I'm dwelling on the negative aspects, such as, not being able to be in my aerobic classes at the Y. I peek in at the water aerobic classes, which I will probably be allowed to eventually do, and the women look heavy and old! A year is a long time, but we will have a better future because of having the guts to go through with this surgery.
Also, thank goodness for this forum. When it was down, I kept thinking about those with Dec. surgeries and how much they will need it with questions during their recoveries. I certainly appreciate those of you who are 1-2 years post op and still take the time to reply to the many questions on this forum. It would be so easy to just say, "Well, I don't need it any more" and move on. Thanks, for all of your time and encouragement.

naptown78
12-03-2010, 08:25 PM
I just had one more thing to add to this thread...Before my surgeries happened, the list of things I could NOT do was getting longer than the things I COULD do. My world was shrinking. Keep in mind when this surgical journey started, I was only 48 but I was living as if I was 30 years older. Standing, and walking was so painful for me. Forget shopping at the mall...even grocery shopping was very difficult. I had to hire a housekeeper to keep my house clean. Now after 2 surgeries, my pain level is minimal. I can shop to my heart's content at any mall (even if I don't buy anything at all!). The ability to walk and stand w/o pain is the biggest reward I've gotten from this. It took a long, long time for me to get where I am today. For those facing surgery, and particulary long fusions, take one day at a time...life can be good after fusion!

Lorraine 1966
12-09-2010, 12:57 AM
As you guys can see I have been fused since the 1966. Truly and honestly it has never, ever been a problem for me. I have moved house 22 times, given birth with hardly any pain killers twice and lived a normal life. Being fused has had no effect on me truly. One thing I wish that they had fused me down to S1, then I would still be OK.

All the best
Lorraine.