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Thread: Hello, I am new here. I have degenerative scoliosis and am scheduled to have ...

  1. #31
    Join Date
    Dec 2016
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    31

    Hi Irina,

    Quote Originally Posted by Irina View Post
    Hi Sheryl,

    I am fused T6 to sacrum - I am pain free and don't feel any limitations. I cannot bend from the waist, but I can bend from the hips. You will be using your knee and hip joints to compensate for a fused back. I easily pick things up off the floor - just squat and lean forward a little. Part of my workout routine is abdominal exercises on the floor. I am getting on and off the floor without any issues and I don't need to lean on anything to get up. In fact, people who didn't know me before the surgery, don't notice anything unusual in my gate, movements etc. If I tell them my story, they say that they would have never guessed that I had these problems with my back. The only thing they say they notice is that I always have this perfect posture.

    I am wishing you all the best! I know how scary this surgery is, and we are here to help.

    Thank you so much for answering Irina. I am very sorry to answer you later than I had hoped to. My surgery dates of Feb 28 and Mar 2 are rapidly upon me and my jitters are getting much worse. It is getting too real, frankly. I have been in much pain and it seems to get worse each week. It is so nice to hear from folks who have gone through this surgery before. Your fusion is similar to mine, except mine will begin at about the T9 level, at least that is the plan, and then down to Sacrum. I have tried to practice bending at the hips, but I'm not sure that I'm doing it justice. I suppose one can only practice these things to a point. After the surgery it must be obvious what to do. It's good to hear that you can get off the floor, HaHa! I can't even imagine doing that with a brace on. I am planning on not needing to do it, at least while I'm alone. .

    I have also had to come to the point where I realized that many of the projects that I wanted to get done before surgery just aren't going to happen. I had a plan, but the time is getting away from me and frankly, most of the time, I just don't feel like doing the things I had planned.

    Wish me luck as I'm so very nervous about all of this. I'm so happy to hear that you are doing so well. That does encourage me, for sure.

    Sheryl

  2. #32
    Join Date
    Dec 2016
    Posts
    31

    Hi Susan,

    Quote Originally Posted by Chihuahua Mama View Post
    Hi Sheryl, Actually I found my brace to be a huge comfort. Putting it on and off was the part I hated but once on, it became my lil "blankie" I found it kept me from making mistakes and things just hurt less when I wore it. Everyone is different but I wore mine over my clothes and even after I was cleared to drive, I didn't worry about what others thought. Maybe I'm in a backwoods area, but people even made comments, "OMG what happened to you?" "Did you get in a car accident" etc. When I had my surgery in California, no one ever said a word and I notice many others in braces so it probably depends on where you live. I haven't seen anyone in a brace since my surgery so perhaps there are just more scoliosis surgeons in So Cal, therefore more surgeries? Just a guess.

    I hope your brace becomes your BF for a while. What I hated (and still do) is the 'bottom buddy' and the difficulty in bathroom duty. I found wearing mini-pads helped a lot for what that's worth.

    Best of luck!

    Hi Susan,

    Thanks so much for your reply. I understand how you found your brace to be your friend. Hopefully, mine will be as comfortable and wanted. I have gotten a few "bidet" bottles for the bathroom duties. I am not looking forward to dealing with that and I certainly don't want any help with it, except from inanimate objects. HaHa! Does it get better with the bathroom duties after a few months? Will it be that way always after surgery? I bought a little portable bidet bottle top that will attach to a regular water bottle and it has a small jar in which to carry it. I thought maybe that would help when I go out, which probably won't be for a few months. When did you first go out and about? Please tell me anything else that you can think of, because my anxiety about this surgery is getting so bad. I find that I am not able to get the projects done that I had planned to complete before surgery, and that's been depressing too. I guess I'm scared because I feel that I won't be able to do anything for months afterward. What were you able to do when you got home from the hospital and rehab? My hospital stay will be about a week or so and then if I need to, rehab for up to two weeks, but I hope only a week. I am going out of town to Houston for my surgery. My husband will work there while I'm in surgery and beyond. Anyway, that about sums it up for today. I appreciate any and all help that you have for me.

    Thanks so much!
    Sheryl in TX

  3. #33
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    Dec 2016
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    31

    Hi Linda!

    Quote Originally Posted by LindaRacine View Post
    Hi Sheryl...

    Unlike Ed, I found my grabbers to be of great importance. I'm 6 years post-op, and still use them all of the time.

    It's very difficult to tell you what to expect post-operatively. There's a huge range in recovery. We occasionally hear from someone who is off all narcotic medications within a week, and others who take narcotics for many years afterward. Hopefully, medication will keep you relatively comfortable for that early postop period. You'll probably find that sleep becomes an issue at some point. You'll also have to deal with a bowel regimen to counteract the effect of narcotics. When you think you're losing your mind, and wonder how you could possibly have volunteered for this, remember there are a whole bunch of us who have been there before you. With any luck, you'll get through it without too many issues. The good news is that, somewhere between 6 weeks and 3 months, you'll almost certainly feel a lot better. Hang in there.

    Best of luck!



    Regards,
    Linda
    Hi Linda,

    I am getting close to surgery in about two and half weeks and the nervousness is pretty bad. May I ask how long you were in the hospital and rehab? What were you able to do when you came home? Were you in a lot of pain when you were released and went home? Anything that you can think of that I need to know is much appreciated.

    I ordered the book Scoliosis Surgery by David Wolpert. He described the first three weeks as "hell". That's not much to look forward to, is it? I see that you were a help in him writing it. That was nice of you to share your experiences. It was nice to see your name there, since I see you here. I skimmed part of the book that is no longer relative to my situation since I'm scheduled for surgery already. I concentrated on the hospital stay and the aftermath. UGH! I guess it's just a necessary evil in order to feel better and hopefully not be in any more or at least, not much, pain. I know that I can't stand this for much longer. The pain shadows everything that one tries to do.

    Anyway, let me know if you think of anything else that would be pertinent. I really do appreciate it so much.

    Sincerely,

    Sheryl in TX

  4. #34
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,675
    Sheryl,
    I have vivid memories of the terror I was feeling the last few weeks before my surgery. It was far worse than the actual surgery and recovery. I think it's the fear of the unknown. When the surgery is over, you can focus on healing and getting your strength back. It takes a lot of patience and understanding of what your body went through and knowing that each month will be just a little better than the month before. I will definitely be thinking of you on the 28 and the 2nd and wishing you the best!
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  5. #35
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,785
    Quote Originally Posted by TXMom View Post
    Hi Linda,

    I am getting close to surgery in about two and half weeks and the nervousness is pretty bad. May I ask how long you were in the hospital and rehab? What were you able to do when you came home? Were you in a lot of pain when you were released and went home? Anything that you can think of that I need to know is much appreciated.

    I ordered the book Scoliosis Surgery by David Wolpert. He described the first three weeks as "hell". That's not much to look forward to, is it? I see that you were a help in him writing it. That was nice of you to share your experiences. It was nice to see your name there, since I see you here. I skimmed part of the book that is no longer relative to my situation since I'm scheduled for surgery already. I concentrated on the hospital stay and the aftermath. UGH! I guess it's just a necessary evil in order to feel better and hopefully not be in any more or at least, not much, pain. I know that I can't stand this for much longer. The pain shadows everything that one tries to do.

    Anyway, let me know if you think of anything else that would be pertinent. I really do appreciate it so much.

    Sincerely,

    Sheryl in TX
    Hi Sheryl...

    For my most recent surgery, I was in the hospital 5 days, and was discharged straight to home. After my initial surgery, I was in the hospital 12 days, and was discharged home. While it definitely wasn't much fun, I would not say it was horrible. I think techniques have improved, making early rehab easier than it used to be. I've known patients who were off pain medications in a week or two. When you're suffering, it will seem like time just drags, but when you look back, I think you'll find it went pretty quickly.

    The one thing that happens to most adults is that we have a period of time when sleep is very elusive. After my last surgery, I barely slept at all for several weeks. When that occurred, I sort of lost my coping ability. Everything seemed so much worse than it actually was. My advice would be to try not to stress out about it. If you go more than a few days without sleep, ask for an RX for sleeping pills.

    Also, you'll read about this a lot, but it can't be stressed enough. You will almost certainly be constipated while you're taking narcotics. I'm guessing that about 99% of us have at least some difficulty with this. Try to stay ahead of it by taking senna and docusate every day. If you get behind, you'll need to take more urgent measures (like Polyethylene glycol).

    Most of all, try to relax. You'll get through it all, just as the rest of us did.

    Best of luck!

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  6. #36
    Join Date
    Jan 2016
    Location
    Sioux City, Iowa
    Posts
    79
    Quote Originally Posted by TXMom View Post
    Hi Susan,

    Thanks so much for your reply. I understand how you found your brace to be your friend. Hopefully, mine will be as comfortable and wanted. I have gotten a few "bidet" bottles for the bathroom duties. I am not looking forward to dealing with that and I certainly don't want any help with it, except from inanimate objects. HaHa! Does it get better with the bathroom duties after a few months? Will it be that way always after surgery? I bought a little portable bidet bottle top that will attach to a regular water bottle and it has a small jar in which to carry it. I thought maybe that would help when I go out, which probably won't be for a few months. When did you first go out and about? Please tell me anything else that you can think of, because my anxiety about this surgery is getting so bad. I find that I am not able to get the projects done that I had planned to complete before surgery, and that's been depressing too. I guess I'm scared because I feel that I won't be able to do anything for months afterward. What were you able to do when you got home from the hospital and rehab? My hospital stay will be about a week or so and then if I need to, rehab for up to two weeks, but I hope only a week. I am going out of town to Houston for my surgery. My husband will work there while I'm in surgery and beyond. Anyway, that about sums it up for today. I appreciate any and all help that you have for me.

    Thanks so much!
    Sheryl in TX
    Hi Sheryl.

    This post is directed to Susan, but figured I would chime in. Your fusion will be similar to mine, I am T11 - sacrum. Our ages are similar, and mine is degenerative as well. I didn't have any issues with "bathroom duties" right after my surgery and I still don't. I could "reach around" just fine. I think some of that depends on body type though.

    I also traveled to a different city for my surgery, 5 hours away. I spent my first 6-weeks in Minneapolis. I was lucky in that my son lives there so I stayed with him. I had my husband or another family member that I recruited with me 24/7 for 4 weeks. My husband was with me for the first 2.5 weeks which, in my opinion, were the most critical. I know I was in a lot of pain (because he tells me stories) but I honestly don't even remember. I was on so much pain medication and relaxers that something gave me amnesia. So, yes, maybe the first 2 or 3 weeks are "hell," but you might not even remember it. Once I "came around" I remember the pain, but it wasn't as bad as I had anticipated. So, that was good news!

    I had anterior/posterior (I think you said you are too). Mine was all in the same surgery. I fully expected my stomach to be killing me, but I can honestly say my abdominal incision and all of that gave me no trouble and very little pain (again, the drugs were managing my pain). My bone & nerve pain were gone after the surgery, the back pain was mainly muscle & soft tissue pain from being pulled back to the correct place. The drugs helped with that, but I did use ice & heat A LOT to help manage that pain.

    Looking back, I think the actual pain was not my biggest problem. I was used to being in high level, chronic back pain. I DID NOT like being on narcotic drugs. They made me feel "weird" in a way that I couldn't tolerate. I was emotional, had chronic insomnia, creepy dreams, etc. I knew I needed them so I kept with it, but I worked hard to wean myself off them after 6 weeks.

    Going out and about: I barely left my son's apartment in those 6 weeks other than to walk outside. After about 4 weeks I did go to lunch once but stayed out about an hour and then needed to nap. One thing I was not prepared for (mentally) was how tired I was. Taking a shower was totally exhausting. So, I really just walked short walks several times a day and layed down a lot. I wasn't comfortable sitting, only laying flat on my back. So, I listened to music & audio books to pass the time. I had my lap top and worked a little bit but just in 30 or 45 minute increments.

    One last thing. I don't know why, but I had really terrible thigh pain. I don't know if it was because of the anterior approach or what, but my thighs & hip flexor area were very painful for almost 4 months. I am now almost 8 months post op and that pain is mostly gone. But, I was unprepared to deal with that and if I was every laying crying about pain, it was my legs, not my back! That also made it harder for me to ever be real comfortable.

    We created a calendar board with a medium sized white board. We drew a square for each hour of the day. We put my various meds on the appropriate square. We set alarms on phones for all those times. Whoever was in charge of me made sure I took my meds at the appropriate time for me. That helped a lot with managing the pain meds. Then, as I started weaning off the meds, we could easily just move the actual pill to a different square and change the alarm setting on the phone.

    Try to stay calm these last few weeks. I kept telling myself "I trust my surgeon. I don't have a choice, I couldn't live with the pain I was in." I just had to do it. I wanted it to be over. When the day came, I just said "Let's do it!"

    I will be thinking of you.

    Kathy
    Last edited by KathyInIowa; 02-09-2017 at 08:41 PM.
    Decompression surgery L4/L5
    April 3, 2015
    Twin Cities Spine Center - Dr. Joseph Perra
    Fused from T11 - Sacrum anterior/posterior
    June 24, 2016 - 55 years old at surgery
    Twin Cities Spine Center - Dr. Joseph Perra
    Before Surgery: 42 degrees lumbar, 28 degrees thoracic
    After Surgery: 10 degrees lumbar, ?? Thoracic
    2 inches taller

  7. #37
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,502
    Hi Sheryl, I did some speed reading of the 3 pages of entries.
    I had adult degenerative scoliosis and have had a convoluted journey in recovery.
    My thoughts:
    - the surgery can be positively life changing, esp if you are in a lot of pain preop.
    - plan on lots of pain postop and have someone help you advocate for you if the doctors are not managing your pain well. Pain management is a fine tuning for each person. I have been both under and over medicated.
    - the brace was my friend. T shirts as recommended by Irina. I did not worry about a bra.
    - tell your supports to: plan on a postop problem. Almost everyone had one that I know about. I have won the lottery on postop problems. Having said that, my option was to be permanently in a wheelchair on opioids within 5 years if I did not have surgery. Someone else mentioned that scenario also.
    - TRUST your surgeon
    - go to "intensive rehab"
    - reachers are great!
    - have your support persons keep a notebook of everything that happens: what the surgeons says, timing of everything.

    Sending you relaxing thoughts, a trusting perspective, and few bumps along the surgical way,
    Another Susan
    Last edited by susancook; 02-11-2017 at 06:54 PM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  8. #38
    Join Date
    Dec 2016
    Posts
    31

    Red face Hi Karen!

    Quote Originally Posted by golfnut View Post
    Sheryl,
    I have vivid memories of the terror I was feeling the last few weeks before my surgery. It was far worse than the actual surgery and recovery. I think it's the fear of the unknown. When the surgery is over, you can focus on healing and getting your strength back. It takes a lot of patience and understanding of what your body went through and knowing that each month will be just a little better than the month before. I will definitely be thinking of you on the 28 and the 2nd and wishing you the best!


    Thanks so much for posting to me, Karen. I truly appreciated your help and well wishes. Well, here is the latest -- I have put off my surgery until March 21 and 23. I was so dang nervous that I wasn't doing too well. I still have much to do in one area of our home that we moved into a few months ago and it was driving me nuts that I would have to come home and look at that mess! Ha! So, I thought to myself -- why am I making myself crazy over this, when I can just delay a few weeks and get most of it done. I'm just that way - a type A! I have been super relieved to put it off for just a bit. It has made a big difference in my attitude. I've got over a month and I've been doing things as much as I can stand it and making a dent already. It's like I needed permission from myself to postpone and then I felt better immediately. The doctor agreed and now all involved are much happier! HaHa! I will go into surgery now more mentally prepared. And, when I come home, I won't have that crap to look at upstairs! HaHa! I know that I won't get it all done, as one never does, but it helps to have some extra time. I've been a happy woman since last Friday! I will get nervous again I'm sure, but at least I'll be more prepared this time.

    Thanks for telling me about your surgery. You have three more fusions than I'm expecting. I received my surgery plan in the mail and I'm OKed by insurance for a 7 - 12 level fusion. I get maybe that's just a description they use, as I'm scheduled to have nine levels. You say that you bend at the hips? For some stupid reason, I'm unable to imagine this. I'll check YouTube for visuals, maybe then I'll "get it".

    Thanks again, and have a great rest of your week.

    Sheryl

  9. #39
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,675
    Sheryl,
    That's great that you were able to delay your surgery for a few weeks and gain peace of mind with all that you need to do before your surgery. I have a Type A personality as well, so I totally get it. I just did a search "bending at the hips" and there are several images that will give you an idea. You will have more flexibility since you aren't going to be fused as many levels as I am. I didn't attempt to bend at all for at least 6 months. I used grabbers or went down on one knee. Good luck withnyour house.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  10. #40
    Join Date
    Dec 2016
    Posts
    31

    Hi Karen,

    Quote Originally Posted by golfnut View Post
    Sheryl,
    That's great that you were able to delay your surgery for a few weeks and gain peace of mind with all that you need to do before your surgery. I have a Type A personality as well, so I totally get it. I just did a search "bending at the hips" and there are several images that will give you an idea. You will have more flexibility since you aren't going to be fused as many levels as I am. I didn't attempt to bend at all for at least 6 months. I used grabbers or went down on one knee. Good luck withnyour house.

    Thanks so much for answering my post, Karen. You totally understand being a Type A! I wish I could be a Type B like my husband, but it just doesn't work and won't happen. HaHa!

    Last Saturday and Sunday, I over did it, unfortunately. Then yesterday, Wednesday, I went out for a mere four hours to go shop and run errands. Geez.....I am in bad pain today because of that. I'm glad that I postponed it a bit, because I need some days just to sit and read, so on the "good" days, I will get things done.

    OK, so I just now looked up "bending at the hips". That's not too hard! Ha! I was thinking that with my fusion, I wouldn't even be able to do that. Well, geez, that is helpful. HaHa! I will be looking up more of this. I found a Yoga video of making a hip hinge, whatever that is. I have yet to watch it, but I will. Thanks so much for your encouragement. Did you have degenerative scoliosis, or scoliosis as a child?

    I also am ordering a third grabber. Did you get any sock aids? How about that Bottom Buddy thingie? I have some bidet bottles, but nothing else yet. I'm not overweight, (well maybe ten pounds, Ha!) so I don't know if that is helpful or not with the reaching thingie. Geez....So much to prepare for and think about?

    I would say the only negative thing about waiting, is obviously pain control. Today seems to be a bad pain day. I have a very high threshold for pain, so that's a help. Have a great weekend, Karen! It's a pleasure to talk with you.

  11. #41
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,675
    Sheryl,
    I was diagnosed with scoliosis in high school, but the curve wasn't bad enough for surgery at that time. I was never in a lot of pain before my surgery except when standing.
    I used a sock aide for a long time, since my surgery was during the winter. I bought tennis shoes which didn't need to be tied. In order to shave my legs, I had a throwable razor taped to a long plastic handle. I don't remember what it was-possibly a back scratcher. The portable toilet with arm handles was a must. I was able to purchase a "spine kit" from Dr. Lenke's office that had a grabber, sock aide, and tongs that I used with flushable wipes (thought for sure it wouldn't be necessary, but it was since I couldn't twist and reach far enough). I also had extra cushions on the kitchen chair seat and behind my.back as well as on the family room chair where I sat. I had my favorite music downloaded and earphones for tons of walking during my recovery. I hope you have more good days! Don't overdo it.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

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