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naptown78
03-22-2009, 07:00 PM
Hi. I have browsed this forum for months before deciding to speak up. You all have been so helpful to me in my process of deciding to have surgery and the post op period. This is my story. I am 49 yr old nurse and was diagnosed with scoliosis when I was 21. No big deal. I was a little crooked. After having 2 kids and starting nursing jobs, my back became a problem. Had back spasms from time to time. Still, didn't everyone have back problems? Then in my late 40's I learned what sciatica was, and herniated discs. I had a microdiscectomy to fix that. Still , the sciatica never really went away completely and my lower back pain became worse and worse to the extent it was affecting my work and my ability to do things I had always been able to do before. My ortho doc took x rays all along and it appeared my scoliosis was progressing, 10 degrees in one year. Wow! It took my months and months of research on this forum and reading books to make the decision to go ahead with the surgery. I had a long fusion, anterior/posterior T4 to the sacrum done over an 11 hour period. I survived. I barely remember the hospital period. I was in for 5 days. Went home with my husband who was the best best best home care nurse ever. There were some funny moments that he still reminds me of. I really had a hard time walking upright immediately after surgery and still do. That part has gotten better but it still aggravates me so much. I feel stiff in my back, like there is no lumbar curve to help me stand straight. If I am sitting for awhile, boy I have to spend some time stretching before I can get going walking. That is one thing I could not understand, so many of you started right off walking after surgery. I could hardly do it. I could maybe go half a block and then I had to turn around. I could not even hold my head up. My job now requires alot of walking so I think that is what has gotten me better at it. I HAVE to walk. I am still on a Fentanyl patch for pain, and Aleve twice a day. I know people keep saying it takes a year so I am waiting my year (May) but I wonder if I am progressing much slower than most. I feel more disabled after surgery than before. I walk very slow now, can't carry much, and I am soooo tired all the time. Sorry for the long post. I have lots more to say but I am probably boring everyone!!

LindaRacine
03-22-2009, 08:18 PM
Hi and welcome...

I think you have a right to be concerned about not being able to stand up straight. What is your surgeon saying about it?

Regards,
Linda

naptown78
03-22-2009, 09:18 PM
I have been to physical therapy, which did help alot. I did not get to go until 3 months post op but was able to give up my cane during PT and worked on strengthening back and shoulder blade muscles along with legs and butt muscles. So I have to say I can stand up straight for a longer period of time now, but it does take some effort. My surgeon simply says my x-rays look great, and it will take more time. I have always been so impatient , I did not realize it would take soooo long to recover!! I really do feel like I've been run over by a bus. Even at 10 months out. But it does help to look back and realize the progress I have made, its really just baby steps.

titaniumtough
03-22-2009, 09:40 PM
HI! Welcome to the site!!
Some people have more difficulty recovering. I, myself, am 1 year post op with what seems like too much pain. I am going to get a second opinoin this coming April. My surgeon is new, I found out post surgery... my assistant surgeon has a horrific bedside manner!!!! lol We are finding someone new. Hoping that it was done right. Keep walking and keep your spirits up!! Lots of helpful people here!! Will be thinking of you! :)

titaniumed
03-22-2009, 11:39 PM
Hi Naptown,

Welcome.

You learned what sciatica was? You mean you learned what sciatica was 'the hard way" Same story here.

I did notice quite a bit of improvement from 9 months onward. Thing will get better.

When I quit my drugs, the pain level did increase for a few days, then dropped considerably. I was just wondering about where your pain is coming from?

Has your Doc addressed your walking and balance issues? Why cant you hold your head up? Are you leaning forward?
Ed

Susie*Bee
03-23-2009, 06:36 AM
Hi Naptown! Greetings to a fellow Hoosier! It's good to have you posting on the forum. I'll probably just echo some of the others' thoughts. But first, your post was not too long nor was it boring. There is no where else in the world where you will find people who try to understand where you're "coming from" quite so well as with those with similar plights. We each have our unique scoli stories... and if we opt for surgery, that again is unique, but of course we can understand quite a lot of others' experiences because ours are similar, even though different. That didn't come out quite right. :rolleyes:

If you read the "turtle and the hare" post a little while ago, that was started by me. Yes, some of us take longer with our recoveries. My strength was totally zapped by the surgery and it's taken a long time to build it back. I'm not quite "there" yet, but actually am doing great, relatively speaking, at this point. Yay! :)

I wonder about the "no lumbar curve" you mention. Did you ask your doctor about that? I was fused T2-L4, so not as low as you, but I have been able to sit mostly fairly comfortably (in a comfortable type chair or our couch) ever since my surgery. I know I've read of others who can't sit for very long, so you are not alone with that. As far as your walking goes, what exactly happens? Are you weakened? Do you have back/hip problems as you walk? Do you starting bending forward?

In my own case I was able to walk ok, but I know I was a little bent over, my stride was short, etc. I walked like a little old lady on ice. ;) I had some basic PT shortly after my release from the hospital. Then at 6 months post-op I had 8 weeks of PT and that is when we worked on my stride and how I carried myself, along with strengthening my legs and arms. That helped sooooo much. At 11 months post-op I had another 8 weeks of PT for core strengthening-- and overall strengthening. It was that series of PT that I felt really set me back in the realm of looking and feeling much more normal. I am leaps and bounds better after another year's passing than I was then. So for some of us, passage of time along with working on getting stronger is what it takes. I've been flabbergasted :eek: with the speed that some have recovered, but that's just not the way it has been for me. Again, slow and steady wins (as in "finishes") the race. It may be that way for you too. Keep us posted. :) Susie

(Now that's a long post-- and probably boring too.) ;)

Singer
03-23-2009, 08:25 AM
Hi, Naptown. I had trouble walking after my A/P surgery, but that was due to leg weakness. However, I walked and walked -- first with a walker, then with a cane. I also had 3 separate rounds of PT -- two on land and one in the water, along with intensive gait training to correct a gimpy stride. Now my walking is just about perfect but it took a lot of work.

I know that my lower back felt a bit "tippy" until it fused. I didn't feel totally secure standing straight at first, but then again I spent so much time leaning on a walker or cane it was a good while before I really stood up straight. Again, for me, it took a lot of training in PT. I also had pain for about a year and a half, though it gradually decreased in intensity. I still take a fair amount of Advil and/or Tylenol.

It will be interesting to see if you continue to improve with increased walking. If you don't, I would definitely keep after your surgeon.

LynnMarie74
03-23-2009, 09:43 AM
Greetings Naptown & welcome to the forum! I think..or so it seems...that most of us go thru up's and down's as far as pain levels go. And like Susiebee said...some heal & feel better much faster that other & to compare yourself to everyone else, sometimes can cause some heartache. (I did the same this, by the way)

My surgery was this past Jan...the 14th & I feel pretty good Id have to day. I had posterior only, so Im sure thats part of it & I have a decent sized fusion....L4 to L5....one shy & a sacrum away from yours! I know that being fused that low can also make some differences in the way you feel, etc. Ive been "walking" since I left the hospital....and let me tell you I use the word "walking" very loosely as it was w/a walker, moving vverryyyyy sllloowww. I graduated a few weeks later to just walking my halls at home w.o the walkers and boy did that feel weird...I was still very slow and unsure. AT about 5 weeks I started walking at a very slow speed on my treadmill & my side hurt when I walked for more than 10 mins. I did this everyday, pain aside and am now up to 60+ mins a day, not including the walking in my home to do basic housework & also taking care of my 4 yr old. My surgical pain is gone now, and the pain I had pre surgery is also gone, except now...Im having horrible pains in my lower left side...the side that never bothered me..and its only at night...about 4 hrs into my sleep. I need to call my doc about this as its really taking its toll on my sanity & Ive also been quite moody as of late. Either way, Im sure its normal to have a slue of different aches & pains w/in the 1st year, so I guess honestly, Im not too worried. I have a post op check on APril 20th so we'll see then.

Well, I hope you continue to post...this site is a great place for support & a nice place to vent or ask other people's opnion on things....take care & have a great MOnday!

CHRIS WBS
03-23-2009, 01:27 PM
Hi Kristy,

I agree with Linda Racine about being concerned about not being able to stand up straight. Iím nine months post-op from a T4 to pelvis posterior fusion and Iíve never had difficulty standing up straight or holding my head up. In fact, surgery has improved my ability to stand up straight. And if youíre still feeling disabled at 10 months, I would definitely address these concerns with your surgeon. Good luck.

asccbodypro
03-23-2009, 03:27 PM
I am just throwing this out there as a personal trainer/bodybuilder....and because someone mentioned the tortoise and the hare......

SLOW AND STEADY WINS THE RACE!!!! I use to tell my clients this all the time. It always kept them on track and not expecting to much to soon and also applies to bodybuilding and competition preparation! Listen to your body and take care of it and it will respond when it is ready!

I often have to remind myself of this.....and as most of you know there is no more bodybuilding for me right now! My long term goal though is this: if people can get out there and ski and ride horses than by god someday I will compete again. It will be a little different and maybe harder but why not try! It will give me something to work towards....maybe 2 years from now. Then again, been there done that so who knows lol! Glad my husband doesn't read this board, he would flip. Not sure he could take the competing again....it can drive a husband nuts. As is scoliosis doesn't lol! Take care everyone:)

asccbodypro
03-23-2009, 03:32 PM
[QUOTE=, and the pain I had pre surgery is also gone, except now...Im having horrible pains in my lower left side...the side that never bothered me..and its only at night...about 4 hrs into my sleep. I need to call my doc about this as its really taking its toll on my sanity & Ive also been quite moody as of late.

Lynn, I hope you get this problem resolved soon! Hang in there, I know it must be frustrating. As far as your moods, who wouldn't be cranky when you aren't sleeping well. Let us know what he says about it!

LoveArt
03-23-2009, 04:18 PM
I have been to physical therapy, which did help alot. I did not get to go until 3 months post op but was able to give up my cane during PT and worked on strengthening back and shoulder blade muscles along with legs and butt muscles. So I have to say I can stand up straight for a longer period of time now, but it does take some effort. My surgeon simply says my x-rays look great, and it will take more time. I have always been so impatient , I did not realize it would take soooo long to recover!! I really do feel like I've been run over by a bus. Even at 10 months out. But it does help to look back and realize the progress I have made, its really just baby steps.

Hi Naptown78,

I'm new to the website (will eventually post a little background). I saw that you live in Indiana. May I ask where you got your surgery? I'm looking for a doctor in Ohio or states nearby. Any suggestions anyone?

Carmen

Doodles
03-23-2009, 05:51 PM
Welcome to Kristy and Carmen! Hope you get some good answers here as I have as I prepare for next Monday's surgery. Oooh--that's scary to even write. Glad you joined us. Janet

LynnMarie74
03-23-2009, 09:18 PM
[QUOTE=, and the pain I had pre surgery is also gone, except now...Im having horrible pains in my lower left side...the side that never bothered me..and its only at night...about 4 hrs into my sleep. I need to call my doc about this as its really taking its toll on my sanity & Ive also been quite moody as of late.

Lynn, I hope you get this problem resolved soon! Hang in there, I know it must be frustrating. As far as your moods, who wouldn't be cranky when you aren't sleeping well. Let us know what he says about it!


My docs PA called me back and said it may be Siatica or just my body still shifting, etc. I explaned during the day Im feeling fabulous, its just at night. She is having me take Ambien for a few days, to see if Im able to sleep thru it & also ice my back 20 mins before bedtime and also when I wake up if it still hurts. If its still hurting this badly by Thursday I have to call back & Dr. Tribus may want to take a look....ughh...just when I thought all wass going so well. I guess maybe I jinxed myself!! :(~

LisaB
03-25-2009, 11:23 AM
I'm a new Hoosier to this site as well. Diagnosed with scoliosis as a Freshman in HS. Was in a body cast then wore a Milwaukee brace throughout HS. Did not have surgery. My back held pretty well until about 15 years ago. I had more pain and the rotation was getting worse. I also had spondylolisthesis which had turned into a very high grade and I was having numbness in my legs and butt. My doctor told me the spondy needed to be fixed (since it was such a high grade) before the scoliosis so the base of my spine could be stabilized. I had a fusion in January from my S1 - L4. (6 hours of surgery to untangle the nerves and do the fusion) In a brace around my midsection for 3 months. Only 3 weeks to go. Feel great. No more numbness. Ready to escape the brace! Want to get the scoliosis surgery over with but he ususally waits 6 months to a year from the spondy fusion before doing the next one. Has anyone else had both surgeries?

Doodles
03-25-2009, 07:28 PM
Hi, Lisa B! Just wanted to welcome another new member tonight. I really am not familiar with those as 2 separate surgeries. I am sure someone on here will be able to help you out. Good luck. Janet

emwonderfull
03-28-2009, 06:04 AM
I'm so glad I found this site last week. I only wish I had years ago! I'm a jumble of mixed emotions about my surgery: excited to finally have it scheduled, scared it won't go well, worried about my kids and bills and what if I get laid off since I'm taking time off work...all those feelings. But mostly excited to finally have a chance to be better. Reading and feeling the support everyone here gives eachother is very inspiring! :)

naptown78
03-28-2009, 11:12 PM
When I quit my drugs, the pain level did increase for a few days, then dropped considerably. I was just wondering about where your pain is coming from?

Has your Doc addressed your walking and balance issues? Why cant you hold your head up? Are you leaning forward?


Hi Ed,
My pain is mostly in my spine (go figure!), and my hips. My pre-op pain is gone. I am tired of all the pills I am currently taking and wonder if that might be part of my problem with being so tired. So I am going to try to wean off the Fentanyl patch and just use ALeve for now.
Yes, I my doc sent me to physical therapy when I was 3 mo post op and that did help me alot with strengthening. I can hold my head up until I get tired, then I tend to lean forward and my head goes down. Or if I carry something too heavy.
It's just that I can't stand up straight and be comfortable. My lumbar area is very stiff and has no curve.

LisaB
03-30-2009, 10:35 AM
Hi - My doctor is Rick Sasso also. I had a fusion for high grade spondylolisthesis January 13. I was fused from my S1 - L4. I also have scoliosis and will have that surgery in 6 months to a year, whenever he feels I am ready. (I'm 54 and wore a Milwaukee brace from '69-'72 after being in a body cast for 3 months.Never had surgery because the procedure just wasn't very good back then. Also my back was pretty good for quite awile, but now worse.) My spondy was so bad that he wanted to stabilize my lower spine before correcting the scoliosis. I was having numbness in my legs and butt. I'm still in my brace for 2 more weeks but feeling great. No more numbness. I would recommend Sasso. He does have an excellent reputation. I'd like to get the scoliosis surgery over with so I can put all of this behind me; hopefully late fall or winter. I hope to be playing golf soon. My doc said that I would be able to.