Page 1 of 3 123 LastLast
Results 1 to 15 of 36

Thread: new member/same story

  1. #1
    Join Date
    Apr 2014
    Location
    Cleveland, OH
    Posts
    8

    new member/same story

    I'm new to this forum but my story is pretty much the same, to some degree, as everyone else. For me my high school scoliosis (just watch) has raised it's ugly head in my 40's. I would work with PT for numb and weak legs that would come and go for about the past 8 years. I don't remember a time that I didn't have back pain, so that wasn't a big deal. In December I had a very hard week at work and I was 'broken.' New back pain and more frequent numbness and weakness.

    I finally left the land of denial and started looking for help and answers. Looks like I have a T9 S1/pelvis fusion in my future! At first I wanted this done asap! But since reading stories here I now understand what a huge recovery is required. I'm 46 and in pretty good shape. But from the post here, I think I need to be in better shape! So thank you for sharing your stories and helping me understand how fully I need to prepare.

    What is your hospital stay like? How long? Should someone stay 24/7 at the hospital? This worries me. My husband and son are great at home but both are terrible at the hospital. I got to see this when my dad had cancer. They did everything for him at home but could bearly function when he was in the hospital. LOL, typical men!

    I'm usually better at writing but pain management doctor put me on Lyrica. I'm one step away from zombie! I gave it a try, titrated to the dose he wanted me on. Up my coffee to two pots just to function. Two weeks later and still a zombie! So weaning off now. It was expensive and didn't seem to help much.

    So thanks for sharing your stories of recovery. But can I get some details about the time in the hospital?

    Thanks!
    Dawn

  2. #2
    Join Date
    Mar 2010
    Posts
    2,748
    Dawn,
    I haven't had surgery, but wanted to welcome you to the forum.
    I'm 45. Isn't it amazing how we hit 40 and then feel like we are falling apart?! Grrrr....
    Someone with experience will chime in, I'm sure.
    If your now out of shape, I wouldn't worry about postponing the surgery too much.
    It seems that it's mostly the mental prep that people seem to go through.
    Don't worry if your husband and son are terrible at the hospital. That's why you have nurses there to take care of you.
    If they are great at home, you're good to go on that front.
    I would do the worrying if it were the other way around with them.
    Best of luck.

    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #3
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,267
    Welcome Dawn.
    Melissa

    Fused from C2 - sacrum 7/2011

    April 21, 2020- another broken rod surgery

  4. #4
    Join Date
    Feb 2010
    Location
    Ohio
    Posts
    200

    Welcome

    Welcome, Dawn!

    I have a T9-sacrum fusion that was done when I was 46 years old. I also live in Ohio. I am very pleased with my results. I was in the hospital for 5 days and 4 nights. Since I had traveled to St. Louis for my surgery, I stayed for an additional week at a hotel adjacent to the hospital. My husband did stay in the hospital room with me overnight each night, for which I was extremely grateful. I'm sure that it was not absolutely necessary , but it was a great comfort to me.

    I'm sorry that you are having such pain. Have you consulted with a surgeon?
    Best,
    Kathy
    Kathy
    46 yrs at surgery, now 50
    71 degree thoracolumbar curve corrected to 34 degrees
    8/2/2010 surgery with Dr. Lenke

    posterior T9 to sacrum with pelvic fixation

    4 osteotomies and 1 cage
    http://s1066.photobucket.com/albums/...athK_08022010/

  5. #5
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    567
    Hi Down and welcome. I was in the hospital for 11 days, but it's longer than average. My husband or parents stayed with me almost every night, but it wasn't absolutely necessary. I would suggest having someone with you the first night after the surgery though.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  6. #6
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,607
    Hi Dawn, I was in the hospital for 10 days, then a rehab for a week. I had 2 days of surgery.
    Advice: strengthen your quads! I had someone with me for some of the nights in the hospital. If you can find someone: girlfriends, brothers, sisters that is great.

    Best of luck! I have a lengthy thread on my recovery and surgery. Best thing that I ever did!

    Sorry about your pain. It was quite a motivator for me too!

    welcome! Susan
    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
    2015: Rev 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
    2018: Removal L4,5 screw
    2021: Removal T1 screw & rod

  7. #7
    Join Date
    Jun 2013
    Location
    NYC
    Posts
    62
    Hi Dawn - I am also in my 40's and had T10-pelvis, so we are similar. And I had a similar progression of pain and weakness and numbness prior to my decision to have surgery. And I have to say, even though recovery has been a trial, I still feel like I made the right decision. So I hope you are feeling a comfort level with your decision as well. I find it inspiring to think of all that metal in me holding me up - makes me feel tough and strong! Even if I don't actually feel physically strong just yet

    I only stayed in the hospital 4 days. My drains took a long time to drain, or I think they might have even let me out earlier. I was so glad to leave. I hated it there. I don't think having my husband stay overnight with me would have helped matters, and I don't think they would have let him stay anyhow. The NYC hospital rooms are teeny tiny and there is literally no room to move around without knocking your roommate's water pitcher over onto her bed. Having guests during the day was great for me mentally, but there was never any place for them to stand or sit.

    I too tried to get in shape before the surgery. I don't really have any way of knowing if it was effective or not. While I was on pain meds after the surgery, I never really experienced any problems. But after going off the pain meds and starting PT, it's been the toughest physical challenge of my life, and I don't know if any amount of getting in shape could have prepared me for that. I think the best kind of getting in shape I did prior to the surgery was mentally and emotionally. I took a lot of yoga classes and meditated and did tai chi and just generally tried to remain calm and "promote healing energy in my body" (new agey, I know, sorry!) I don't know how well all that worked either but it seemed like a good investment in time. And the physical workouts prior to surgery gave me something tangible to occupy my mind and keep me from stressing out too much.

    Regarding your thoughts about whether you should have someone stay with you in the hospital, thinking back now how it went for me, I think maybe it would be far more helpful to make arrangements to have someone visit or stay once you get home from the hospital. In the hospital there are nurses and aids and call buttons, and pretty much constant attention. Once you get home, your familiar will need to get back to work, and you might end up being alone for whatever amount of time. I arranged to have my cleaning lady's young son come (age 13-ish) over a few days a week for a couple hours a day. It was summer, and his mom wanted him to have a summer job. Ostensibly he was supposed to be helping me with my small business, but it was a relief to have him there to do lifting, and light chores when asked. And your family will become exhausted by waiting on you (I know my poor husband did), and so if you have any extra or spare family members or friends who can stay with you or come over on a regular basis, you might really appreciate having them. I recall seeing a post I think from Linda on how nice it is to have a friend come over and change the cat box or just pick up all the things you dropped on the floor. I know I asked my helper to do both those things! In fact, one of his standing jobs when he arrived each day was to pick up the myriad of pencils and whatnot I had dropped and wasn't able to pick up. I paid him $10 an hour, and it was the best money I spent all summer! Anyhow, if you are marshalling and deploying your resources, consider having someone helping you once you get home rather than when you're in the hospital.

    Best of luck! Keep us posted. Do you have a surgery date scheduled yet?
    Surgery June 18 by Dr. Errico at NYU Hospital for Joint Diseases at age 41.
    Fused T10-Pelvis.
    "Ask me about my brand new lordosis!"

  8. #8
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,712
    Welcome to the forum, Dawn. I was in the hospital for 6 days. I was told in advance that I would be in a room similar to ICU the first night so that it wasn't necessary for my husband to stay with me. He stayed the following two nights and I paid for a private aide for the 4th night. It seemed that I had the best nursing staff during the night that I paid someone and really wouldn't have needed to do so.
    Find the best surgeon possible and get in the best physical shape that you can. This forum can give you so much support. Don't hesitate to voice your concerns as it is a big decision to have this surgery, but one that most of us are happy we made.
    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/

  9. #9
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,267
    I have been in hospital for many surgeries and my husband has stayed with me all of the time. UCI encourages patients to have someone stay with them. All of their rooms are private and at night it was very helpful to have him there.

    Who is your surgeon and what hospital will you be in?
    Melissa

    Fused from C2 - sacrum 7/2011

    April 21, 2020- another broken rod surgery

  10. #10
    Join Date
    Apr 2014
    Location
    Cleveland, OH
    Posts
    8

    appreciate

    Thank you all for your input. Fear of the unknown is getting better with the insight all of you are sharing. And it's so nice not to be alone, I don't know anyone else that needs multilevel fusions. My irony, I work as an RN on a Neuro unit! I'm at a smaller hospital and any backs we have are one or two levels. But mostly we deal with brain problems, strokes, seizures, tumors, trauma.

    I will have surgery at the Main Campus of Cleveland Clinic and will have both a Neuro and ortho surgeon. At this point it looks like an A/P approach. I'm still in the early stages of this journey and I do not have a surgery date. Just did facet injections yesterday. I appreciate the pain relief but don't understand why it's needed for diagnostic. All the other images don't tell enough? My symptoms aren't enough? But I'll do what's needed and take this time to get stronger.

    I'm in pretty good shape but this long winter took it out of all of us up north. Even with my crazy back, I can do anything I want. I just have to be willing to pay the price (pain). I love to golf and work in the yard. I use to run, even did a half marathon 2 years ago. I stopped running because of depression after my dad died just before the half marathon. I think running (I run like a penguin) and my core work out helped my back. Yes, after 40 things do seem to start falling apart! Especially if we don't listen to our bodies. I think with my back I didn't listen soon enough but I really didn't know how bad it was. If you look at me you might notice a slight shoulder dip and you'd think I have VERY straight posture. I wasn't that worried about my hump getting bigger, I was getting older. The first time I looked at my xray (not the report) I almost hit the floor. Not as bad as most of you here but nowhere near normal. I have a 50* lumbar curve and a 45* rotation. Once I get my son's attention, I'll have him help me post my xray.

    My husband and son are my only family in the area. I have a great group of friends and will take all of the offers of help but once I get home. I love the story of $10/hour to pick things up! I've been focusing on core but will add quads. Keep the tips coming! With the decrease in activity right after surgery, how much weight do you usually gain? How horrible that NYC hospitals still have roommates. Most hospitals in this area are private rooms only. I stayed with my friend after her surgery. Beautiful room with view of the woods, sitting area (pull out couch), shower in the bathroom. Main Campus doesn't have the views but staff was always great with my dad. But the extra TLC came from me. Nursing ratios can be rough some days.

    Keep the tips coming!

  11. #11
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,444
    I must say “Gotta love a nurse”.....It was my nursing staff that brought me back after such a fun time....I even learned how to install an NG tube since I was a hose puller! I was an injured bull in a china closet....NPO is an interesting state, no food by mouth, no bathroom, not getting hungry.....I finally ate after 9 days. The resulting ileus came and went like a bad chapter in a book.

    Funny how we go through life and learn to ignore our severe situations to a degree, and then the downhill slide begins in our 40’s. Our methods of maintaining our pain and sanity become more of a problem, and then we finally decide that its just not worth continuing like this. At age 48, I was struggling with sciatica which was around a 6 year battle. Hard to believe I did that but I did. There are a ton of decision making threads here with many thoughts on the matter. “Am I ready for this?” Hmmm......We read and we think....”Am I committed?” hmmm.....Commitment and desire needs to be 100% Yes, means yes.

    I had a massive A/P, had all lumbar discs removed from the front (ALIF) and replaced with peek spacers along with BMP (Infuse kits) Of course, anterior means front or side, and after having other laproscopic surgeries, it would have been a whole lot easier “If” this could have been done. I wasn’t arguing with my surgeon and I knew my lower levels were diseased beyond belief. I had no guarantees, and didn’t expect my lower area to come out as well as it did. I went from 10 level pain down low, to a 0 level. It took me a few years to believe that it worked so well.

    I did 10 days, then ran home avoiding a scheduled 30 day rehab. I wouldn’t recommend doing this, and I wouldn’t leave till you are weaned to orals. I did that home alone, and couldn’t sleep.....lost 40#. The benefits of running home are the fact that I save the insurance company a fortune, and had all the nurses and PT people coming out to my home every day. “Ed, are you awake?” Uhhh....”I never went to bed”. I basically did a lot of pacing and took a lot of hot soaks for pain.

    It all came around in the end...as it always does. We have revision patients here that do revisions for particular reasons, but most come through. I lost my gall bladder which is one of the rare scoliosis surgery complications. That was really a minor thing other than the attacks, but in the end it was all worth it. We need to know about complications because they happen. We cant possibly know them all....its impossible, but at least be aware that things do happen that need to be dealt with. I would ask your surgeon about proximal junctional kyphosis (PJK)

    It was a 2 year recovery.

    Welcome to the forum

    Ed
    49 yr old male, now 62, the new 63...
    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

  12. #12
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,712
    Dawn,
    You asked about weight gain and I think that most people experience weight loss after the surgery. Apparently, your body burns a lot of calories healing from this major surgery. I walked as much as possible and lost 9 pounds and kept at least 5 pounds off long term. I am not sure what the hardware weighs so it might even be more if I subtracted that. I know I look like I weigh less because I am taller and straighter.
    I noticed that you mentioned that you love to play golf. I played a lot of golf prior to surgery and was not allowed to play for over a year. You can click on the link in my "signature" to see my first round back to golfing after surgery. Now, at 3 years post op, my swing is much better than it was at the video. I couldn't imagine that it would be possible to play decent golf with long rods in my back, but it's better than I hoped.
    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/

  13. #13
    Join Date
    Apr 2014
    Location
    Cleveland, OH
    Posts
    8

    rollercoaster

    I feel like I'm going thru the stages of grief. I was in anger for the past week or so. Was at bargain for awhile too. I think I'm heading to acceptance now, not there yet but almost. Two thoughts stick with me; I read here that if you have little pain before surgery you have a low satisfaction with surgery (something to that effect). And commitment, yes is yes. My pain stays low as long as I watch what I do and how I do it. So if I have surgery now, will I be mad at myself for doing it and having to deal with recovery. Like Ed said, our method of maintaining becomes more of a problem. I guess my method hasn't become too big of a problem yet. So because of that, my commitment isn't 100% yet.

    Ed, guess I don't have to worry about gallbladder, mines been gone for years! But I will ask about PJK. I have appointment next Thursday. I've been collecting up my questions and concerns. I've been doing my research about the surgery, recovery and my surgeons. Since I work at a Clinic hospital, word of mouth has been helpful too. There's only one doc who is recommended more but it takes months to get into see him. And I already have trust with my doc and am very comfortable with her and her nurse.

    Ed, you would have been my favorite patient. I love the trouble makers! Give me the bad boys who pull things out, try to climb out of bed, etc. I love the challenge of getting you better especially when you're working against me. Nurses are a strange group!

    The Baroness, your personality reminds me of my best friend (Since we were 3). She has me doing some yoga CD' s but mostly for the breathing and relaxing. She has me eating whole foods and trying to get me off red meat. I have the science, she has the rest, the "new age" stuff.

    Karen, I golf, in the sense that I hit a ball with a club. I suck! But it's something my husband and I do together. Mostly we play small public courses. I enjoy being outside and laugh at myself when my game goes to carp. But I get a little better every year. So it's nice to know I'll be able to play after fusion.

    I'm glad to hear most people don't gain weight. I lost a bunch of weight in the past and I don't want to have to do that again.

    And once again, I'm so thankful for all of the insight found here. I'm working on finding my 100% commitment. Maybe my next appointment will bring some additional information that will help.

  14. #14
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Dawn--
    Welcome to the forum! What a great attitude you have--you'll do just fine. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  15. #15
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275

    Rollercoaster

    Dawn, you've expressed what I've been feeling. My pain is manageable. I'm not 'wishing' for pain, but it sure seems like it would make the decision easier! If I knew my curve wouldn't progress, I'd opt out of surgery. (I had a 10* increase in the past year). But, like you & Ed, I wonder how much the maintenance I'm doing really affects my life.
    I live in Columbus, OH - grew up west of Cleveland, in Avon. I'm really interested in knowing who your surgeon will be and also who other one is, that you considered. Please send me a pm if you don't want to give that info. on the forum. I'll probably go to St. Louis for my surgery, but I haven't given up the search for a closer option.

    Welcome to the forum. I really appreciate reading about your insight into making your decision & then accepting it. It helps to hear from all of you 'experienced folks', too! Thanks, everyone!
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •