Announcement

Collapse
No announcement yet.

question for full fusion people

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • question for full fusion people

    Hi Im three months out and generally speaking doing pretty well but I have a couple of concerns I hope that people with full fusions like me can answer. First of all when do you think in your recoveries that you didnt feel like there was a pole in your back? It is driving me crazy and was hoping that it would be better by now. I feel like there is so much pressure in my back. Secondly did anyone have trouble sleeping and getting comfortable this late in their recoveries? I feel like I've hit a wall with this. I was doing ok and now Im up all night, cant get comfortable and I'm in alot of pain. I have a temperpedic mattress and use all different types of pillows to try and get comfy to no avail. Im going to call and ask for more pain meds today even though they are so hesitant to refill them Im going to insist because I am the only one who can judge my pain and Im feeling it so much lately. Thanks for any advice or comments from the people in this wonderful forum!
    Sarahcant
    Surgery March 15
    Dr. Errico NYU
    Fused T-3 to S-1
    an inch and change taller
    nice and straight
    49 years old (yikes)

  • #2
    Sarah

    I know you probably know this, but you are only 3 months along. It took me 12 months to feel that I was 90% through my recovery. It takes a while to get adjusted to the “alum ladder” feeling, it will come in time as you start moving more and diverting your mind on other things other than thinking about your back. I’m proof of this, I barely have time to read and post anymore as I have been working like I’m 30. Imagine that? I don’t think about my back much anymore.

    The pressure feeling should diminish in time. I took many hot baths in my recovery for pain relief and it did work. As your recovery continues, you really do need to continue being active. It’s a daily test, pushing the limits, and then sleeping to recover. Many cat naps are needed in battling the fatigue.....I kept walking, and increasing my activites as time passed till I went into PT at 8 months for my shoulder. After 6 months of PT, I was in pretty good shape. The arm bike helped considerably with “toughening up” the paraspinal’s in my mid back. Lifting of weights started with 1#. Then a few days later, we upped it to 2#. This will give you an idea of how slow this went....

    I have a medium tempurpedic and it wasn’t soft enough. I added a 2 inch topper and it helped quite a bit. I also cut it off about 2 feet short so my head would hang off the small ledge. Sleeping with the head lifted up too high is a problem and I use extremely soft down pillows. You want to keep your neck in its natural position as much as possible....

    At 3 months, I was just starting to venture out. That’s when I first jumped out of the nest! I walked about 2 hours up at Virginia City and paid quite a price. I had to sleep for about 3 days! LOL. You will get through this...I was pretty determined to make the best of things, after all, I didn’t have much choice in the matter....Many short walks through the day works well, don’t push it too much.

    I was saturated with meds for 6 weeks and after my withdrawl’s, I really don’t have many positive things to say about them....I’m like an ex-smoker who has nothing good to say about drugs and yes, I read the fine print.

    Hang in there ( I would add this to my sig, but there is no room left)
    Ed
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

    Comment


    • #3
      Hi Sarah,

      What he said. I can pretty much echo everything Ed said. I had three surgeries, the first being posterior fusion the end of January, then anterior about a week later, and a revision about the same time as your surgery. I still feel like i have a big aluminum ladder in my back, and a big pillow from the swelling that is still there. I can never get comfortable, so I find myself constantly moving from position to position trying to find relief. I can't sleep all night long yet. I went for a walk the other day of 1.3 miles which took almost two hours! I used to be an extremely fast walker. I was also overwhelmed with fatigue for days afterward. I've never understood how profound fatigue can be until now! And there is no way I could go without pain meds yet. I could never get comfortable enough to sleep if it weren't for pain meds.

      There's still a real disconnect between what I believe I am physically capable of and what I am actually capable of-- for now at least. I still can't drive very far. I can't walk very far. I still can't pick anything up off the ground or put socks on or tie shoes. I can't roll over in bed. I can't so much as lower or lift the tailgate on the pickup, let alone put anything in it (I'm a farm girl). I have to hire help just to clean the house or get the most simple yard work done. It's getting real old. Especially with summertime here and so much I'd like to do.

      It just takes a lot of time. You're not alone. Hang in there!

      Sue

      Comment


      • #4
        Thanks Susan and Ed...I will def get a softer pillow mine is a temperpedic and I think its too hard for me. Will keep you posted....good luck Susan I know what you mean I just want to get going and I cant ...so done with it also! Patience patience Im trying!
        Sarahcant
        Surgery March 15
        Dr. Errico NYU
        Fused T-3 to S-1
        an inch and change taller
        nice and straight
        49 years old (yikes)

        Comment


        • #5
          Hi...

          I can't answer you about the pole thing, as I can't say I've ever felt that. But, I have had real difficulties with getting comfortable in bed on and off since surgery. I'm fine now at 5 months, and hope it stays that way. When I couldn't get comfortable in bed, I simply moved to my recliner, and that seemed to do the trick most night.

          Hang in there. It will almost certainly get a lot better. I plateued from about 6 weeks to 4 months. Then, suddenly, at almost exactly 4 months, I started feeling so much better. We all heal at different rates, but I think we're all the same in terms of wanting recovery to be faster than it is!

          Regards,
          Linda
          Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
          ---------------------------------------------------------------------------------------------------------------------------------------------------
          Surgery 2/10/93 A/P fusion T4-L3
          Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

          Comment


          • #6
            I agree with Ed, it's early days, hang in there. Try to get some walking in every day if you possibly can. Just gentle, you know your limits, but a bit every day. It will help with everything.

            As for a plateau, I've read that many times, so it's not unusual.

            I'm over 2 years post op and I still feel that ladder when I'm out walking, swinging my arms. It's not painful, it's just *there.*

            I just wanted to be another who backs up Ed's words to reassure you that it's still early days and it will get better. The softer pillow might help as Ed says, let us know if it does, it may help others.
            Jen
            Surgery March 3, 2009 at almost 58, now 63.
            Dr. Askin, Brisbane, Australia
            T4-Pelvis, Posterior only
            Osteotomies and Laminectomies
            Was 68 degrees, now 22 and pain free

            Comment


            • #7
              Pillow talk

              When I bought my bed, I ended up with the tempurpedic pillows and didn’t like them at all, and gave them away. You cannot shape them to adjust height.

              When laying on your back, the space between the back of your neck and the mattress is a small amount. To support the cervical lordosis in your neck only takes about 2 inches, you can measure this by inserting your hand there as you lay down. You will see that your hand will fit quite well, and your hand isn’t all that thick. A very soft down pillow, one that you can shape easily is best. A rolled up towel works well also. You only need about 2 inches...

              Sleeping on your side is a different story and the height will be higher. The soft down pillows are still best as they are very easy to squeeze and shape to set the right height. Try to keep that neck in its natural position. All my neck problems have been from incorrect pillow adjustments!

              Laying on your back and propping up your neck to watch tv is looking for trouble....I always watch laying in a side position. Yes, it takes me 3 months to watch a movie, 3 minutes at a time!

              Down pillows when they are new are not soft enough....they are best when they are older. I guess you can remove some of the feathers, run them over with the car, beat them with a baseball bat, whatever it takes, they need to be super soft!
              Ed
              49 yr old male, now 63, the new 64...
              Pre surgery curves T70,L70
              ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
              Dr Brett Menmuir St Marys Hospital Reno,Nevada

              Bending and twisting pics after full fusion
              http://www.scoliosis.org/forum/showt...on.&highlight=

              My x-rays
              http://www.scoliosis.org/forum/attac...2&d=1228779214

              http://www.scoliosis.org/forum/attac...3&d=1228779258

              Comment


              • #8
                Sarah,

                I am eight months out and I still feel the ladder in my back. As time has passed I don't notice it as much. I have trained myself to think about how much the ladder has stabilized my back and reduced the pain tha t I had. I still feel very stiff, but I have a great deal of flexibility. I am picking things up off the floor. Mr driving seems to improve each week as well.

                I use the two inch foam padding that Ed recommends and it helps me sleep well. I put two small pillows on each side of my back and let my arms rest on the pillows. This helps me get comfortable.

                At first I was propping my neck up too much so I try to keep my neck more in line with it's natural position.

                Walking is a great exercise and reduces my pain level. I do still take pain medicine and something to sleep. I have stopped taking the strong pain medicine and hope to reduce what I am taking now over the next few months.

                I hope you find relief soon. It is just a long healing process.


                Chris
                Chris, Austin, TX
                age:58
                80 degree thoracic/36 degree lumbar curves
                Surgery 8/2/10, Anterior Cervical Decompression/Fusion
                C4/5, C5/6, C6/7
                New Surgery date 10/25/2010, T-2 to Pelvis, posterior
                Dr. Matthew Geck, Seton Spine and Scoliosis Center

                Comment


                • #9
                  It took me well over a year to get rid of that feeling. I always called it the 'stick up the butt' feeling. LOL Usually now, almost 3 years post op, I never notice it.
                  __________________________________________
                  Debbe - 50 yrs old

                  Milwalkee Brace 1976 - 79
                  Told by Dr. my curve would never progress

                  Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
                  Pre-Surgury Thorasic: 66 degrees
                  Pre-Surgery Lumbar: 66 degrees

                  Post-Surgery Thorasic: 34 degrees
                  Post-Surgery Lumbar: 22 degrees

                  Comment


                  • #10
                    I also had trouble sleeping for quite some time. Finally, last month, at 4 1/2 months out, I slept through. Now I only have occasional nights where I can't sleep. (Partly because my brain never shuts up!) But I think a lot of it really has to do with just not being able to turn and roll over effortlessly like the old days. I have pillows propped on both sides, too, so I have to move them to change my position. It really helped when sleeping on my side became fairly comfortable, as that was my normal sleeping position before surgery.

                    I also felt like I reached a plateau at around 2 months. For a long time, I felt like I just wasn't doing much better. I had to constantly force myself to remember where I was 2 weeks ago, and pay attention to little milestones, such as "I finally could sit long enough to watch a movie" or "I can actually prepare and cook an entire meal!". Keep acknowledging your accomplishments. It may seem minor, but it is a big deal if you couldn't do it the week before! I also felt a huge turnaround physically at 4 1/2 months. I finally felt more like a normal human and not an invalid. (Ironic that it was the same time as when I started sleeping through the night...)

                    Now, at almost 6 months, I am feeling great. I still have that ladder feeling, but it doesn't hurt anymore. It is just there, and I am aware of it less and less.

                    I know physical therapy is a subject of differing opinions with doctors, but I feel SO much better since I started. I started at 4 months with just simple stretches, massaging and releasing tight muscles, pool therapy, and some ab/core work. No lifting weights or anything strenuous. Now they have me doing light weights and using resistance bands that don't put any stress on my spine. I feel so much stronger and have so much more energy! I was so sick of feeling weak and exhausted all the time... I really believe that it was instrumental in my ability to finally sleep, and to be able to do so much more so suddenly. It is too soon for you, but when (if?) you get to start, I bet you will feel better, too. Something to look forward to!

                    So to sum it up, it sounds like you are pretty much on schedule for a NORMAL, boring recovery!! It IS a long one-patience will be your best friend. Take care and hang in there!
                    Jenee'-52
                    Bend, Oregon

                    Braced 3 years in high school
                    Lumbar 70'+ Thoracic 70'+
                    I had 3" shrinkage in 6 months...

                    Surgery Jan 10, 2011
                    9 hours
                    T3 to S1 with pelvic fixation
                    Both curves now 35'

                    Possible revison for Flatback Syndrome
                    Non-fusion
                    Loose/broken hardware-awaiting CT results

                    Here is the link to my before and after pics..
                    http://www.scoliosis.org/forum/showt......&highlight=

                    Comment


                    • #11
                      Thanks Jenee I have started physical therapy and it does make me feel better...at least I feel like I can move a little more freely. Its very gentle right now but it helps. Thanks for your words of wisdom and help! And thanks Ed for the pillow advice it really helped! Thanks everyone for all of your kind words and advice I really appreciate all of you and this forum!
                      Last edited by sarahcant; 06-25-2011, 08:14 AM.
                      Sarahcant
                      Surgery March 15
                      Dr. Errico NYU
                      Fused T-3 to S-1
                      an inch and change taller
                      nice and straight
                      49 years old (yikes)

                      Comment

                      Working...
                      X