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pilar
01-13-2011, 06:45 PM
Hi guys,
For those of you with t2 s1 fusions and large curves, please tell me... When is this going to get better??? I'm so depress! The pain and discomfort is so great and does not subside!!! I don't want to get out and I can't do anything other than sit around. My poor boyfriend is getting so tired of my complains...
I can feel everything! Even with this brace!! My whole spine, the rods, everything is so tight! Now, I can even touch it because is so sensitive... Even my shirt makes me uncomfortable. Ahh, At bedtime my legs starting to cramp up and hurt.
Please, tell me when is this going to go away!! If ever!!!???
Is my spine going to be like this forever?? My stomach sticks out because of it... I don't have control of my body.
Another question, how do you guys drive?? The position of my spine does not let me sit normally in a chair, because of how my belly sticks out...
I don't understand how I ever gonna feel normal again.
I also have shortness of breath, which I think is due to anemia...
I don't know how to deal with this!
Sorry for the rant!

Susie*Bee
01-13-2011, 07:56 PM
Pilar-- I remember thinking how long my healing took... everyone is different, and you are in the very early stages of recovery. My fusion isn't quite as long as yours T2-L4, and my curve wasn't a big one, but my major curve was 52ļ with two roughly 30ļ curves above and below it. You've been through major reconstruction of your spine and with many people it takes a long time to adjust and recover from it. Try to look at the progress you've made so far and enjoy that... and know that you'll continue to make progress. I have gotten better each year and now feel really really good. I did a post a long time ago about the difference between the turtles and the hares amongst those of us who have our surgeries. Try not to be disheartened.

Singer
01-13-2011, 08:03 PM
It's a b**ch, I know, but it gets better. It really does! But it does take time.

boopy1
01-13-2011, 08:09 PM
HI, please don't be discouraged . I am T1-S1 and pelvic fusion. It takes longer for some. I am 16 weeks post op so I know the feeling. I had quite a terrible post op and did not get to go home for 3 1/2 weeks. I am still on pain meds and donot drive (head rotation problems) . I am having part of my rod removed above T1 that is causing pain. Belly does go down and than breathing is better. If it wasn't for my neck I would be further along . Arms ,legs and balance much improved. Pain that I had pre p is gone. As for the hardware areas ,there is bruising that you can't see after all that movement and that gets better also .
Don't ever worry abot venting I have done it myself and everyone here understands Donna

titaniumed
01-13-2011, 09:49 PM
Hi Pilar

Non-scolis will get tired of hearing about our complaints after awhile. I learned not to say anything and just wait till maybe someone would ask how I was doing.....I guess you cant blame them. Thatís why we are here, we understand exactly what you are going through.

It does get better! The one thing that I had to do was take hot baths all the time for pain. 4-5 hot baths per day for 3 months! And yes, I was STIFF. I wondered how I was going to do this or that, but I eventually figured things out and you will too. Or just ask here.

Recovery after getting hit by a freight train is quite a process. Itís a day by day thing, you take any improvement you can get and you relish it. It seemed to come in steps for me, these little bumps of improvement and you just continue holding your head up and moving forward. We donít have a choice, we only have one shot, and you make the best of it.

The swelling will go down eventually, so you will be able to sit normally. Driving, you shouldnít do if you are on meds, and quitting meds should be one of your goals.... it will also help with your bowels and your breathing.

I was warned about laying around on the couch all day. That is a no-no. You need to keep moving and walking. Its tough, but we have no choice. You should be breathing DEEPLY and often, it will prevent problems. Drink 10 glasses of water every day. Water and walking helps the bowels. Chew gum also.

You will get there. Try not to get depressed, when that happened to me, I immediately did an about face and continued marching to the beat. Know in your own mind that everything always works out....It just does.

Ed

JenniferG
01-14-2011, 03:21 AM
Some great replies here. I can't add anything more except to say, I feel your anguish and hope it's not long before you start feeling much better. You will!

debbei
01-14-2011, 08:13 AM
It takes time Pilar. I don't remember how long it was till I could sit in a normal chair without extra pillows. I used to carry a small pillow around with me in a bag once I started going out--I couldn't be comfortable otherwise! Now I can sit anywhere (usually) although certain types of chairs, with bars horizontal across the back are still terribly uncomfortable.

As far as the tightness, that takes lots of time. I know it feels like you're a robot right now, but over time it will get much much better. The worse of the tightness for me was when I came off the pain meds, because then I felt everything.

What happened with your intestinal complication? I assume since you're home it all worked out ok, right?

((Hugs)) and just know that things will improve bit by bit.....you might not realize it day to day, but it will happen.

pilar
01-14-2011, 06:28 PM
Thank you so much for your advise guys!!! It means the world to me!

karena
01-14-2011, 09:01 PM
Pilar, I am amazed you are on a computer at 5 weeks! I got 'fused' L5-T10. I didn't even get on a computer till after week 8. I had so much pain, then depression kicks in. Now I was back in emergency due to pain 2 days after being home, and then back to ER 6 weeks after surgery due to water on the lungs. After that, the pain of the lungs clearing was so bad, and my nerves got stretched across my abdomen due to the XLIF so talk about whammies! My fusion is not as extensive as yours but I can say by week 9 (and I counted the days) I felt a bit better, and more able. Not completely out of pain, or even to the point of feeling super good, but I knew truly that it will just get better from now on out.I still have a nerve issue in my leg (which was there prior to surgery) but we are working on that. Sooooo, to get thru' the muddle think of every day and pick out one thing, even if it is only one thing that is better than yesterday. And, thank God for that one miracle even insignificant. Finding the good things that are happening each day helps get thru' pain. I also found out that every surgery can have depression as a side effect. My nurse friend got me started on St. John's Wort. But the catch is it takes a few weeks to kick in. Didn't matter I took it anyway and am still. Recognizing that it is there is important. Having a great circle of friends got me thru' the painful times.

jrnyc
01-14-2011, 09:14 PM
there are meds that work faster...for depression!
doctor can tell you which ones, and which are easier to go off later...

please worry about you, Pilar...those around you need to understand....
major major surgery...requires time...T I M E !!
you have been rearranged!
bet you any amount of money that when all is said and done, you will look and feel great...the weight can come back on later...

best regards..
jess

naptown78
01-14-2011, 10:55 PM
Pilar,
I am fused T4-sacrum also. I remember that at first I was very very stiff and in pain for a long time. It was strange to sit in a chair or drive because of the newly created lordosis. I had to use pillows behind my back for a couple of months.
Now I feel great. Remember as others have said, that you are still very very early in your recovery. No, you will not feel like this forever. The stiffness and pain does resolve but it takes time and patience. Improvements come in baby steps. Keep in mind your spine is continually healing for a couple of years at least. Try not to think of this process as a negative but as a positive...you have a new straight spine!