Page 2 of 2 FirstFirst 12
Results 16 to 29 of 29

Thread: Joining the broken rod club

  1. #16
    Join Date
    Jun 2013
    Location
    NYC
    Posts
    61

    9 days post-op

    Well, here I'm home from the hospital almost a week now. The hospital was predictably awful, but there were a lot of really nice nurses that did their best to make up for it. This is NYU Hospital for Joint Diseases. Nurses Faye, John, and Rasheeda in particular were awesome. The aids too were awesome, but unfortunately I can only remember Irma's name. Oh wait, as I write this, I'm remembering there was a gentleman named Phil who worked nights who was also a saint. And a clerk named I think Sharmin (sp?) Seriously, these people are unsung heroes. The work 12 hour shifts, on their feet constantly, and still, every moment of their day is focused on caring for us and figuring out how to make us comfortable. Some of the most compassionate people on the planet. Their kindness more than makes up for some of the negative things I experienced. I know it's the drugs talking that heightens the intensity and emotion of it, but there was a nurse manager whose name I will not mention who was not easy to work with. As I think back on it, I realize she was just doing her job, but I felt she was patronizing and wasn't communicating well and did not treat me like an adult. I want to focus on the positive rather than dredge up unpleasant memories, but I have to get this off my chest: Dr. E has a fellow who lied to me and caused me extreme unnecessary stress. I met her the day of my surgery, and at first I was glad to see a female fellow. I've met many of Dr. E's fellows over the last 4 years, and all of them have been male. In fact, on the day of my surgery I met 2 female fellows. The first one seemed perfectly nice. The second one had a gleaming smile, but looks were definitely deceiving. In our first meeting she told me 2 lies: she said the surgery would only be 2 hours (it was not, and several other people involved gave us different estimates, but none were quite so overly optimistic.) She also said, and I quote, "You should be able to go home tomorrow." She said this to me as I was getting ready to go into the OR. I knew right away that was a lie, as Dr. E, and another one of Dr. E's fellows, had both told me I would be in the hospital 3-4 days. So why would she say that? And why would she expect me to believe that? You don't go home the next day from spine surgery, even if it's just a revision. While I was recovering in the hospital, she came to see me each morning at an ungodly hour. Dr. E came to see me as well, and his visit is really just a hazy memory of his silhouette backlit by morning sunlight, which is a crazy memory, believe me! I have the man built up to godlike proportions anyhow, and I can't remember a word of what he said except for him repeating, "You are not fragile. You are not fragile. You are not fragile!" And he called it out again as he receded out the door like an apparition. I'm being overly dramatic. But you know how it is when you're on heavy painkillers and everything seems a fog. Anyhow. So this female fellow came to see me every day, and the issue of my drains was a frequent topic. During my last surgery, I had three drains coming out of me, which were annoying and slightly painful, but they finished up draining by my 3rd or 4th morning in the hospital, and they were removed and I was sent home. This time I had 2 drains, and I was told right away I couldn't be released if they were still draining, and at some point early on, that story changed to, "you will be sent home with the drains if the are still draining." I can't describe to you how much stress this caused me. At that point I was still feeling a lot of pain, and I didn't think I'd be able to make it back into the hospital to have the drains removed. Let alone I wasn't sure how I was going to empty them. I had made a vow to myself that I was going to "go along to get along" during this hospital stay in order to make it more pleasant for both myself and my caretakers. But I was adamantly against going home with the drains. I had to put up a fuss. So much so that I became the topic in a nurses meeting, but they listened to me, and kept me another day so the drains could keep doing their thing. However, a nighttime aide who was a sub from another floor, kept closing them up improperly when she drained them, not creating a suction, which prevented them from draining for about 8 hours, which put me behind schedule in the drainage department. Anyhow, so this female fellow in question kept repeatedly telling me I was going to have to go home with the drains. She was really eager for some reason that I go home ASAP. She told me that my husband would be emptying the drains for me (which at the time seemed to me a horrible idea, but I came around it, and that part did work out fine.) But then she told me that my husband would need to be the person to REMOVE the drains! She said he would need to "clip a few sutures" holding the drains in, and then pull out the tubes. Mind you, one of the drains had literally 12 inches of tubing embedded deep in my body. Even the nurses agreed with me that asking a non-medical-professional to remove the drains was something they'd never heard of, and could lead to infection. Why on earth would this woman say that? It caused me so much anxiety. Granted, I was on drugs, and wasn't in my right head. But I became hysterical, which I had told myself I wouldn't do, and now I'm rather ashamed. It's to the credit of the amazing nurses that they were able to calm me down. But I blame this horrible smiling lying fellow for blithely pushing ideas that were so incredibly overly optimistic that they were basically lies. Anyhow. Eventually they did send me home, with the drains, and my wonderful loving husband was able to empty them for me. I went home on Friday, and those kind wonderful nurses had scheduled me an appointment with the plastic surgeon responsible for my incision and drains for the following Monday morning. And boy, when he pulled that 12 inches of tubing out of my back, I felt it! There's no way a layperson could have done that. Personally, I think this female fellow is dangerous, and shouldn't have patient contact. I'm still so upset about it. I should put it out of my head, but dealing with her was fairly traumatic.

    So, anyhow. Now my big job is weaning off the painkillers. I'm due to start working from home in about 4 days, but I'm wondering if I'm going to need an extra day or two. At first I thought my only hurdle for getting off the oxy would be the withdrawal. I have a bad track record in that department, so I'm trying to take it slow. But I'm now at the day where my plan is to be at only 15 mg total for the day, and I'm suddenly realizing that there's actually some pain going on underneath all that drug induced numbness! Uh oh. The incision all along has been rather painful, especially at the top, and as the drugs leave my body I'm feeling it more. And the drain sites are especially sensitive. But I'm also feeling this incredibly strong pressure in my back, like an elephant's sitting on me. And I'm especially feeling sharp strong pain in my left shoulder. After my walk yesterday I spent the entire day laying in bed because I was sick to my stomach (I think from my body adjusting to lower doses of painkiller.) So I'm wondering if the shoulder pain is related to spending way too much time yesterday flat on my back. So today I'm going to try to spend more time sitting up. The walking is going fine. I'm very weak and I get tired easily, but it's a great relief to feel that the "broken rod feeling" is now gone. The shoulder pain seems weird since my revision is way down in the lumbar area.

    Anyhow, so, I'm starting to go a little crazy here at home, and I think non-stop about my painkiller decrease schedule. I'm like ultra-focused on it. Writing this has been very therapeutic. I'm sure if I read it later I will cringe, but for now, thanks for letting me vent.
    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!"

  2. #17
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,535
    Funny how we talk about drains, drugs, and the spider web of hoses only to be caught like an insect. (smiley face) I couldn't even roll without pulling on something.

    Sounds like you are determined to wean at 11 days....It never an easy thing, reducing meds and balancing pains.....

    The nutrition part of all of this should be up at the top of the list as we do need our nutrition while healing. I felt so much better with my whey protein smoothies...sip and go, re-blend.

    Try to take it easy......we like to think we control our recoveries only to realize that our recoveries control us...

    Patience...

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  3. #18
    Join Date
    Nov 2012
    Posts
    88
    I'm thinking of you and praying for you. Titanium-Ed is right, give yourself lots of time to recover. We like to think we're indestructible but we're not. And I'm not sure Drs are always right when they way we're not fragile. I think after surgery, there IS a time when the bone repair is fragile. It takes time to knit strong.

    I remember going off oxy less than two months post op. I did it cold-turkey and the withdrawal was hell for two weeks. The surgeon had prescribed hydrocodone to help but I ended up allergic to it and didn't want to bother him over the long Thanksgiving break. So, oh my goodness, I do NOT recommend that! A good surgeon will have a good pain medication exit.

    Ed is right, lots of protein. Also calcium. And potassium for leg cramps. I ate tons of bananas to help with the arm and leg pain from withdrawal. Massage helped, along with yogurt. Bones and muscles need the protein and calcium boost after surgery to repair tissue even without any med withdrawal. It was critical to get all that extra stuff.

    Can your surgeon prescribe a lower tier pain medication? I think that is extremely beneficial to slowly come off stronger meds.
    1973 Age 15 diagnosed with scoliosis but told too old for surgery.
    2001 age 43 told too old for surgery, did physical therapy & traction.
    2001 to 2008 Intermittent use of home traction machine and TENS unit.
    2009 traction no longer effective - physical therapy.
    2011 More physical therapy. 2012 Collapsing scoliosis - MRI before surgery
    At age 53, surgery on October 2nd, 2012 with Dr Hey
    Fusion with titanium rods and bolts from T1 to pelvis.
    Post op x-ray

  4. #19
    Join Date
    Jun 2013
    Location
    NYC
    Posts
    61

    You guys are awesome

    Thanks so much for the support! And for all the reminders about nutrition and taking care of myself. I don't know what I would do without my team. Thanks for keeping me sane
    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!"

  5. #20
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Best of luck with your recovery.
    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/

  6. #21
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Baroness,

    How are you doing? Recovery coming along? How's the weaning? Shoulder pain? Other pain?

    Hope everything is going well. Give us an update.

    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  7. #22
    Join Date
    Jun 2013
    Location
    NYC
    Posts
    61
    Hi friends, sorry for the delay with the update. I hate sitting up at my desk, so I have finally dragged the laptop to the bed. I went back to work at the office yesterday. I'm putting on a brave face, but I must say it's rather uncomfortable. My muscles are so tight and sore that it's hard to breath. But my desk at work is much more comfortable than my desk at home, and mentally it feels so great to be out and about again, and interacting with co-workers and working on meaningful things. I have three cats which I love, but I am glad to have other people besides them to talk to again! I'm totally off the painkillers, and my stomach and digestive system have mostly returned to normal. I haven't had an oxy "jones" for almost a week now. So I feel like I'm well out of it. The incision and holes from the drains are all pretty well healed up now. Just waiting for 1 more steri strip to fall off! Now I guess I'm just in the long agonizing period where I wait for the pain to stop. Stupid tylenols have no effect. The only thing that removes the pain is laying flat in bed. (Which is actually the same as last time around.) The good news is laying flat in bed gives me total relief. It's weird that the pain is in the same spot as last time too, in my bottom ribs, parallel to where my fusion ends. No pain at all where the broken rod was, or anywhere else in the fused area. Just the stupid ribs like always. Once I'm allowed to do PT and stretch, I will probably be able to get the pain to stop. I'm thinking I might start doing some light stretching starting now. What do you all think? Hope everybody is well, and thanks for all the well-wishes.
    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. #23
    Join Date
    Jun 2013
    Location
    NYC
    Posts
    61
    Quote Originally Posted by JuliaAnn View Post
    I'm thinking of you and praying for you. Titanium-Ed is right, give yourself lots of time to recover. We like to think we're indestructible but we're not. And I'm not sure Drs are always right when they way we're not fragile. I think after surgery, there IS a time when the bone repair is fragile. It takes time to knit strong.

    I remember going off oxy less than two months post op. I did it cold-turkey and the withdrawal was hell for two weeks. The surgeon had prescribed hydrocodone to help but I ended up allergic to it and didn't want to bother him over the long Thanksgiving break. So, oh my goodness, I do NOT recommend that! A good surgeon will have a good pain medication exit.

    Ed is right, lots of protein. Also calcium. And potassium for leg cramps. I ate tons of bananas to help with the arm and leg pain from withdrawal. Massage helped, along with yogurt. Bones and muscles need the protein and calcium boost after surgery to repair tissue even without any med withdrawal. It was critical to get all that extra stuff.

    Can your surgeon prescribe a lower tier pain medication? I think that is extremely beneficial to slowly come off stronger meds.
    Thank you, JuliaAnn! Much appreciated. Withdrawal is a horrible experience that I wouldn't wish on my worst enemy. I'm glad to be through it. And I am really taking everyone's nutrition advice to heart. Normally I try to diet a lot and not eat carbs, but right now I'm allowing myself to eat anything that seems nutritious. I sure didn't manage to lose any weight after this surgery like the last one, but I feel like to need the calories for healing.
    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!"

  9. #24
    Join Date
    Jun 2013
    Location
    NYC
    Posts
    61
    Quote Originally Posted by Confusedmom View Post
    Baroness,

    How are you doing? Recovery coming along? How's the weaning? Shoulder pain? Other pain?

    Hope everything is going well. Give us an update.

    Evelyn
    Evelyn, I realized I didn't answer your questions directly. Shoulder pain seems to have been from laying in bed too long, and faded with some good walks. And, fully weaned! And the ribs. Thank you so much for asking and thinking of me! You all are very kind.
    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!"

  10. #25
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Quote Originally Posted by the_baroness View Post
    Hi friends, sorry for the delay with the update. I hate sitting up at my desk, so I have finally dragged the laptop to the bed. I went back to work at the office yesterday. I'm putting on a brave face, but I must say it's rather uncomfortable. My muscles are so tight and sore that it's hard to breath. But my desk at work is much more comfortable than my desk at home, and mentally it feels so great to be out and about again, and interacting with co-workers and working on meaningful things. I have three cats which I love, but I am glad to have other people besides them to talk to again! I'm totally off the painkillers, and my stomach and digestive system have mostly returned to normal. I haven't had an oxy "jones" for almost a week now. So I feel like I'm well out of it. The incision and holes from the drains are all pretty well healed up now. Just waiting for 1 more steri strip to fall off! Now I guess I'm just in the long agonizing period where I wait for the pain to stop. Stupid tylenols have no effect. The only thing that removes the pain is laying flat in bed. (Which is actually the same as last time around.) The good news is laying flat in bed gives me total relief. It's weird that the pain is in the same spot as last time too, in my bottom ribs, parallel to where my fusion ends. No pain at all where the broken rod was, or anywhere else in the fused area. Just the stupid ribs like always. Once I'm allowed to do PT and stretch, I will probably be able to get the pain to stop. I'm thinking I might start doing some light stretching starting now. What do you all think? Hope everybody is well, and thanks for all the well-wishes.
    I would definitely not do any stretches until you're cleared to do them by the surgeon.

    --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.

  11. #26
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,535
    Quote Originally Posted by the_baroness View Post
    I'm putting on a brave face, but I must say it's rather uncomfortable.
    Its good to get out of the nest and flap the wings.....for our sanity.

    We use the brave face but there will be times when things can be trying and we just have to forget the brave face..... A few weeks out, its hard to explain to strangers that we just got hit by a surgical train, and there isn't anything that they can do. I had this happen in public and just wanted to be left alone. Helen Keller said "Avoiding danger is no safer in the long run than outright exposure. The fearful are caught as often as the bold." We think we are safe staying at home, but the see-saw recovery pains will come and go regardless of where we are....

    5 weeks for stretches is way too early for doing too much.....I believe I was released at 8 months, and then started stretching on a really slow schedule....foot on stool, hanging arms to reach shoelaces kind of takes a priority with full fusion....shoes come first, Iron man comes later. Much later....

    Accept that your body has to heal at its own pace. These challenges take an incredible amount of patience, and the rewards will come in time.

    It helps to look and think about people like Hellen Keller, and others with disabilities and think about their parallel issues and how they overcome. Its inspiring to see how they cope and maintain their optimistic attitudes.

    I have attached a link of 45 popular quotes by Hellen Keller. Read and think.....re-read when things get tough.
    http://www.quotesigma.com/45-famous-...-helen-keller/

    Hang in there

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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. #27
    Join Date
    Jun 2013
    Location
    NYC
    Posts
    61

    Can't catch my breath

    Ok no stretches. Got it. In my defense all I was doing was holding my arms over my head for ten seconds. But I will yield to wiser, more experienced heads I just was thinking that some stretching will help ease some of the pain in my ribs.

    Truly the thing that has been so plaguing me is it's hard to take a deep breath. I feel like something is sitting on my diaphragm or squeezing me. It's very unpleasant. Is this normal? I thought I remembered reading on the forum that someone else had this and overcame it eventually by singing a lot to strength her muscles. I have my first post op doc visit on thurs. I intend to ask him about this breathing problem as my very first question.

    I'm in the weeds here. I know this too shall pass but I feel every day like I've been hit by a truck.
    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!"

  13. #28
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,535
    Quote Originally Posted by the_baroness View Post
    I feel every day like I've been hit by a truck.
    Baroness, if you are having problems breathing, I would go to emergency and tell them about your surgeries. They will shoot x-rays.

    If I had to guess, sounds like it could be fluid.....its happened to a few members here, (weeks after scoliosis surgery) but then self diagnosis is fruitless and I'm not a medical doctor. X-Rays will show quite a bit.
    https://en.wikipedia.org/wiki/Pleural_effusion

    You are going to be fine, you will get through this...

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  14. #29
    Join Date
    Jul 2010
    Location
    Long Island, New York
    Posts
    87

    Singing

    Quote Originally Posted by the_baroness View Post
    I thought I remembered reading on the forum that someone else had this and overcame it eventually by singing a lot to strength her muscles.
    That was me..... singing loud and strong definitely helped with my breathing, but be aware of any sharp pain.

    Best of luck hope you are recovering well, I have a broken rod almost exactly in the same place... but I'm having NO pain in that spot, my pain is on the other side and more near my pelvic anchor... which may be unrelated. Ugh.... Doc said fusion looks ok but not great on right side, but good on the left (the other side) of the disc at the break.

    When was your surgery and how are you feeling now?

    Cathy
    Cathy
    2 sons, one Syracuse University graduate (working for the Mets now), one college sophomore, one great husband and two fabulous cats
    54 years old March 5
    AIS 45 degrees Thoracic at 14, Milwaukee brace for one year in 1977 then in 2012 I found Dr. Baron Lonner ❤️
    Surgery April 8 2015
    Presurgical curves T77 L66
    Post surgical T27 L22
    Fused T3-S1 pelvic fixation, osteotomies and all the other stuff but you know what? It's done...

Tags for this Thread

Posting Permissions

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