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Surgery decision time, advice please

Need: question list at bottom of post for surgery discussion tomorrow, your experience or suggestions appreciated!
This is another epically long post because I cannot seem to shorten. Thank you, I type in tears, thank you for your consideration and bearing its longevity. And unfortunately, Thank you for your years of horrid pain that has made many of you specialists and experts that I need now.

Fyi about me at this point in life:
Tomorrow is the appointment with my neurosurgeon to decide on the surgery I will have. He has explained it would most likely be L5-S1 fusion. This will be my third surgery in 12 years on my spine with 2004 L4-5, hip bone used; 2014 L3-4 with bmp cadaver bone used. Previous surgeries were successful in that I returned to active normal life, managed minor ache and pains. I made lifestyle adjustment after 2nd, will further adjust lifestyle after this one. Have recently gone thru pt and epidural injections. Both pain management dr and therapist recommend fusion after seeing my treatment results. They both said they rarely make that diagnosis, but in my case say there is no question, and even believe I will have excellent outcome. I too mentally think I will as I have before and have confidence in my entire team and myself.

Neuro has said he will obviously know more when he gets in there, it will be first time in my back. I moved away from previous orthopedist. He said he would like to consider removing hardware that is in there. We told him some has been on second surgery and that ortho said the original l4-5 is really imbedded in bone. He said he will consider that, and ordered at ct scan to road map me. He will be listening to me, comparing recent mri and ct scans when deciding approach. In my opinion, I have a small frame so I like the idea of old stuff coming out and getting new/lighter pedicel screws. So we shall see. Also he will discuss what it means that one of my pedicel screws is inseparable from my iliac vein and artery. Lastly, I have genetic partial sacroilization bilaterally of l5-s1, so he will review what that means to this surgery.

I have listed my questions to cover below. Please, your advice and suggestion of what else I should ask would be appreciated. I do have pain journal and husband going with me as well to be sure I can hear and make best decisions.

Presurgery questions
Number 1 can we do this asap please! Quality of life. Not minimizing others needs, but my life is truly on hold. As u said when u saw me three months ago, not to walk. That I will damage nerves. U hoped epidurals would relieve and so did I. If they didn't that we would fusion. I'm emphatically begging mercy: please can we schedule as soon as humanly possible!?!

1. Do you use stitches or staples? My previous with staples good/stitches do not heal on my body.
2. Will you use same incision?
3. Will you remove any hardware?
4. What do you think outcome for back/leg..realize you have to get in there to really answer
5. Blood, do I need to donate. Drains.
6. Cadaver or my own bone, BMP?
7. Pt and pain management, will I need to change to your office ones or keep the one I've been working with?
8. What kind of pt do you think is best while waiting for surgery, or should I discontinue? Currently we do heat/tens/massage and some upper body. We discontinued lower body work for fear of further nerve destruction.
9 what hospital? How long have you used? Are private rooms common
10. What is average night stay in the hospital
11 do you give a brace to me in hospital or do I need to get
12 will I see you in hospital or a pa? Will therapy begin there?
13 how long is typical surgery
14 number of vertebra matter? Sacrilization of l5-s1? What is my numbering so I understand versus a normal spine?
15 my SI joint arthritis, will surgery help or how should I address? Pt?
16 my nephrocalcinosis that popped up on ct scan, I have appt with my general to discuss. Do you have advice or knowledge, is this common of other patients?
17 I see my general tomorrow to get yearly blood work. I'm on high blood pressure med and hypothyroid. She will do full blood work up. May I use that work up for you as well? Can you right same order so when I go for draw I can have result sent to both? Mobility is an issue so I am trying to make my life easier.
18 currently on tramadol extended release with hydrocodine for breakthrough. I don't always take the hydro and pain management dr had to talk me into it when I described pain after second epidural, before third. I'm on Celebrex and muscle relaxers too. Ice heat and tens is my biggest lifesaver. Canes and walker is keeping me from falling. What is your typical medication for post surgery and what can I expect...obviously this is subject to change..what is your usual protocol?
19in your experience: what is outcome for a 42 year old lil lady like myself having third back, (fifth if you count micros)? I'm extremely ocd, positive, hyper happy. I have been homemaker for last three years for various reasons(hubby travels, kids age, income, and pain was last consideration.) kids are older now and I have a plan for my next goal in life, to go back to school and go completely 180 from previous job (elementary librarian/media specialist) to become a certified phlebotomist. I have such a positive nature I would love to be the difference in a hospital. I want to work with children as I'm extremely good with them. I want to wear scrubs, see kids and their families and make one small positive in their hospital experience.i want to still support my family by not bringing work home. Do you think this surgery can help me achieve this next dream?
20 lastly, started therapy so I can get help when depression creeps in and I chat on a spinal forum where I'm surrounded by my kind. I share this with u so that u know I'm a whole body person right now. If I could have a personal trainer, I would! But as you said to absolutely not be physical except Aqua therapy and specialty bike, I'm waiting for surgery to possibly add one. Realistically, what is your experience with age/health of going back ever to the high level or mid level or low level exercise. Remember, I was a marathon runner. It has taken years to overcome the loss of running in my life.


  • Even if it is," nice job, you got this"! I would appreciate it.
  • Kirstij79KKirstij79 UKPosts: 158
    edited 09/07/2015 - 12:32 PM
    Think you've thought of everything!! Let us know how it goes :)
    Kirsti x
  • I can understand your physical pain and you being nervous over the surgery
    I also understand the mental pain when no one answers you on this site

    I don't know much since after being in pain for almost a year ...
    I was just diagnosed of disc bulges..
    So can't comment..i read many blogs here where almost everyone said surgery was not a success..the fact that yours was a success is a great thing...and the upcoming one should be successful too
  • 2dgs4cmpany22dgs4cmpany Posts: 200
    edited 09/07/2015 - 3:08 PM
    Thanks Gul and Kirstie! I appreciate you responding and your positive encouragement. Thanks for noticing I am nervous. Who wouldn't be!? I do feel I'm as prepared as I can be. Will update post soon with outcome. Hope it helps others!

    And thanks for noticing my fusion success. They were life granters for me both times. I hope this third is my final though. I'm worn out. It is what it is though, iiwii baby!
  • Sheri76Sheri76 Michigan Posts: 483
    edited 09/07/2015 - 8:22 PM
    Sorry I haven't responded sooner, been up and down doing things to keep the blood flowing. I read your post earlier and I didn't think you missed anything, and I haven't done extensive research in any of it to feel adequate in giving you any other medical information. Sounds like you did your homework well.

    What I do feel confident in saying is I think you're someone I would enjoy being around. I love being around people who enjoy making others feel good about themselves, and you do that in spades! I think you can do anything you put your mind to doing, and you're probably someone who can motivate others to do the things they need to do.
  • 2dgs4cmpany22dgs4cmpany Posts: 200
    edited 09/08/2015 - 9:44 AM
    First and foremost, thank you kindly Sheri, u and the others really gave me a lift...loved waking up to your comment especially Sheri, thank you.

    My list was perfect and they, (doctor and pa separately) did not mind in the least. Towards the end I apologized for the length of questions. I want everyone here in spine land to hear the response they gave me: you are why we are here. Your questions are why we may run late a little, but are exactly why we are here. You are about to go under a major surgery and we expect nothing less. In fact it is concerning when people don't ask us things.

    We are going forward with third fusion in October. Only decision remaining will be to keep previous fusion hardware or to pull out. One of my pedical screws is not going in the direction it should - it is not hurting anything on me, but is inseparable from iliac vein and artery. So I have to have yet another ct scan first so neurosurgeon can decide. He would like to remove to ease the weight off my bones so that higher level bulges will not need attention in the future. I appreciate his methodical approach and think the time I have to wait for the ct to be scheduled, then accomplished, then insurance applied for, then wait for approval and then date will serve me well to prepare my body to heal. Do not get me wrong, I'm in pain every second until then, wish this was tomorrow. But, accepting the journey. It is what it is.

    Lots of threads on here have been positive about a third fusion, so I will focus on that. I had great outcomes last time too. Has anyone had the screw in the wrong place with veins/arteries.. I'd be curious how doctor proceeded.
  • Sheri76Sheri76 Michigan Posts: 483
    You remind me of author who wrote that book....maybe not exact name of title, gave book to someone else to enjoy.
    Sharing our live stories with others can be like reading a good book,...when an author can share something that inspires others, it's like a friend doing an act of kindness to help others find hope in the midst of suffering....thank you for doing that. I struggle with being overwhelmed at times, tends to draw myself inward, overlooking the needs of others....and like you I find sarcasm towards myself helps get me back on track, but I have to be careful not to let it grow deep roots of resentment, nurturing my self-help sarcasm in to passive aggressiveness towards others.

    So glad you had such a good day!
  • Thanks for the encouragement!

    I wish there was a place on posts to click "like"! There are a few today, yours included, I would like to push, like! Ooooh, I like the idea of a like button and a helpful button!

    I wouldn't want an unlike button, I think that would be negative (Jeeeze Louise I am sunshiny today).

    How are you doing today? 5pm everyday these two past weeks hits me hard! Thank goodness for coffee!
  • Sheri76Sheri76 Michigan Posts: 483
    Too hot for me today....I don't function well all around in hot humid weather, so looking for things to do indoors. Should have worked on a painting I started a couple weeks ago....I've only worked on it twice so far. Sitting still bothers me, and standing at counter last time bothered my neck. Just got some inspiration to fasten some Command Velcro tabs to back of canvas and wall, placing at better body mechanic level, if that's possible.

    I was thinking of the like button the other day too...ha. But overall, I think it's best not to. Sometimes FB seems too competitive in that sense, I think some go out of their way to see how many they can get. Or some use it for their own personal validation, which should be gotten elsewhere, from the One most high ; )
  • What an inspirational,idea to transform your work area! I hope it works out and you are able to create. There really is nothing like being able to make something with your hands, especially when the rest of your body doesn't cooperate.i thank the lord each day I have the free use of my upper body.

    I've just finished a crocheted beautiful blanket that is so full of cheery colors. I never know who I making most of my creations,for until about half way thru. This one will be for a dear friend and I just learned she is going to be a grandmother a second time with the addition of a baby girl. So I will make a kinda matching one for the granddaughter with some of the same yarn and baby yarn too of course. Feels good to have something for the pain I am in.

    I can't seem to settle on reading a good book right now, I'm just not able to focus with the medications. I miss reading and hope to squeeze a book in during surgery recovery. Then back to work, which I am beyond, beyond ready to sink into!

    Happy painting!
  • brandis77bbrandis77 Posts: 195
    edited 09/10/2015 - 12:21 PM
    Thank you so much for sharing this list! I made lists before I saw my surgeon each time, but I always left and was like "OMG why didn't I think to ask XYZ?!" I think I might cut and paste your list and modify it for my future appointments. :) I also loved to hear the response that you got to all of your question-asking! I also worry about asking too many questions sometimes, so it is really nice to know that I shouldn't automatically feel like a bother. Please continue to share you story and experiences, this information can help so many people! :)
    L4/5/S1 scar tissue removal surgery, plus unexpected L4/5 microdiscectomy #2 October 2015
    L4/5 microdiscectomy May 2015
    2-level ADR C4-6 (Mobi-C) February 2015
  • I'm not my happy self today, and I should be. I was able to make a hair appointment..that in itself is enough to make me glow. Making appointments that are not doctor related right now are such a gamble..but anyways, that is not why I'm writing.

    I need to vent this to help me resolve, bear with me:

    The surgeons office called today. I was shocked when I saw their name on my screen. I had seen them Tuesday and during that visit we had decided on fusion bearing the outcome of a secondary ct scan I'm to have Monday. The nurse told me then not to expect a surgery date til October and to hear from her next week.

    So when I took the call, I was absolutely unbelievably thrilled to hear they set my date. You guys and gals who are in the pain, in the wait for the surgery..you know what that call means. It's like getting asked to the prom! I was over the moon. To boot they had lined up all the dates until then for blood donation, pre-op and even an optional spinal class offered at the hospital. This will be my fifth back surgery, third fusion..all my fusions are at adjacent levels of original and I've always had excellent outcomes. So even though third I was like, cool, a class. Doing it.

    So I hang up and start marking the calendars (large family so we keep ourselves coordinated online). I then text my two most important cheerleaders, my hubby and mom to tell them I got the date, call me when they could talk..they are both super busy working so I always text and let them call me.

    Hubby called first. He was devastated. He was so sad to hear the date and that it wasn't sooner.
    Mom called next, same exact response.

    Mom lives away and hubby is away on trip. So I sat for a bit with this. I understand they are disappointed because they absolutely find watching my pain unbearable.

    When I talked to hubby tonight I told him how depressed I felt after speaking to him and mom. I don't normally be so honest on the phone while he is away working for our family. I'm glad I did. He said exactly what I thought, he just was so incredibly sad for the wait, but that I should return to jubilation and he would be happy to. He also said he was going to call the dr office to beg to put me on a cancellation list.

    Normally, when I get big news from a doctor office I text about 8 near and dear friends. Tonight I know they would be on the phone or by my side helping me prep meal plan for family or sending texts of encouragement. I didn't call or text anyone because I just am a mess. I think the real thing that is bothering me is that if my two biggest cheerleaders are this upset and then I'm upset about that..how am I gonna deal and feel when I share with my friends? I don't think I can take much more.

    I was thrilled to get the call at all, so I just didn't process that it is five weeks from now, 10-21. I still feel lucky at all to have the opportunity to be seen by such a great doctor and to have the chance to walk again. I did remind hubby that it was five weeks out on the second one too. That helped him and he is doing Better..that or faking it because he can't stand to upset me.

    Sometimes I feel I am losing it. It's like if one tiny little thing occurs on top of what I'm balancing now..it just makes me a crying emotional wreck. I pride myself in strength and positive character. I feel a little empty reaching for the positive when my closest people are sad. I never even told my teenage sons. They would have wanted to know. I will wait to tell them when hubby comes back. And I will sleep tonight and I bet tomorrow will be brighter.

    Tonight I was alone, except,for my dearest boys. I was even able to cook for them, something I had not done in a while. Okay, so it was boiling noodles and jarred sauce, home made garlic bread and that really means old sandwich bread broiled with butter and garlic, and some microwaved peas. But I did it! And a hair appointment (had to get rid of highlights for fall..sadly look a tiny bit like morticia Adams). And the call. I got asked to the prom. The end of the bigger need is near. Thanks for listening
  • Sheri76Sheri76 Michigan Posts: 483
    I was going to make my phone go to bed, but gave in when it begged for one more story in Spineyland. And then I read your last post here. I'm sorry to hear you have to wait longer than you'd like, but life has a way of working all things to the greater good, even if we don't see that good in our lifetime... assuredly, I believe all our lives are connected, we may not always feel or even see the rippling effect, but it's there just the same....so hold fast to your faith, hold on to the hope and peace you know you can trust.

    And I'm so happy you were able to cook that blessed feast, sounded great to me....your sarcasm was a decadent dessert. Thanks for making me laugh.....

  • Sheri, looking at your time stamps from two threads, awwwww I worry about you! Sure hope your new mask is feeling better and you were able to get some REM sleep!

    Brandi, thank you so much for your thoughtful reply. So many people helped me so it made my day that I could pay it forward to you. Truly, thanks for the positive comment and hope you are recovering from you February surgery I see in your signature stamp? How is that going?

    Sheri, after you wake from a beautiful slumber and are enjoying coffee while reading this: thank you. Waking this morning to your wisdom really sheds a new light for me. I always say every storm has a rainbow if you can see it...okay I don't actually say that...but it's how I usually see things in hindsight. Thanks for bringing that message to me now. I needed the reminder. I'm gonna share the good news with my friends because it is good news! I will most likely walk again normally after this surgery and I need to remember that. So if the delay causes others to be sad, I will be there to remind them I'm glad. This is an excellent opportunity and I'm not going to waste it.

    Thanks for replying. It is not of my nature to feel so torn up and what a balm to be at a place that I could write about it, reflect and receive support as well. I thank my lucky stars for spineyland and you
  • I had one surgery at the S1-L5 and because I was a smoker the fusion was unsuccessful and now two screws have broken off from the play in my back. I was told with a second surgery I have an 80% chance of ending up in a wheelchair because I have a lot of scar tissue in the surgical area of my lower back.
    Until a breakthrough in Spinal fusions comes out, I am staying away from a 2nd surgery so I would not even consider a 3rd surgery as the complications are great. Unless it is absolutely neccessary for a last resort, I would recommend to you to try swimming and stretching. I can't do any exercising since my failed fusion so if I could rewrite history, I would have never let the WCB push me into the spinal fusion in the first place. They say unless your spine discs are shattered from an accident, don't let them touch your spine for any type of fusion. Shaving down a bulging disc is very easy to do when you have s minor surgery like that, but the moment they break your back to put a fake disc I , your back will never be the same again.
  • brandis77bbrandis77 Posts: 195
    edited 09/11/2015 - 5:37 PM
    Congrats on the surgery date!! It's such a relief to finally have that scheduled, I understand completely. I feel like I'm in a similar situation, where I have good news but my husband does not think it's good. :/

    Recovery from my cervical surgery on February has been amazing. My neck/arms are back to 100%! But recovering from my lumbar surgery in May has been pretty rough. I finally broke down and had a lumbar epidural yesterday. It ended up being a great experience! I had been dreading it since my cervical injections were so unpleasant, but for this one I was completely asleep and have had hardly any pain from the injection. The steroids make me a terrible jittery and emotional mess (with a bad headache too), but otherwise, my back feels AMAZING!!!!! I seriously haven't felt this good in at least a year. I have been so happy!!

    My husband, however, is very skeptical. We both know that the effects of the injection could just be temporary, and he says he won't feel better about things until I have my follow up appointment in a few weeks. I am trying very hard to be positive and enjoy the relief I am feeling, even if it only lasts a few days. But it is hard when my husband does not share in my happiness.

    I understand he is being practical, as is your family when reacting to your October date. Through all of my treatments and surgeries, I truly feel that even our closest loved ones can never understand exactly what we are going through. My feelings have been hurt so many times when my husband doesn't get it, so I'm thankful to have this message board for support.

    When telling your friends about your date, could you start with "Hey, I have great news, I'm so excited I feel like I won the lottery!" and then tell them the date? Maybe that would help them react positively and supportively?
    L4/5/S1 scar tissue removal surgery, plus unexpected L4/5 microdiscectomy #2 October 2015
    L4/5 microdiscectomy May 2015
    2-level ADR C4-6 (Mobi-C) February 2015
  • Lol, sounds like a rock band name! Okay okay, I will stop trying to be funny..it may creep in again, just saying. Anyways, important stuff:

    Brentaw, I'm so sorry your fusion didn't take. I can't imagine what that is like! And then to have screws come loose? Oh my! So forgive me for asking, but like..where are the screws? Are they in there still? I'm worried for you and hope that you are not in pain, but I imagine you are in a great deal.

    Couple things I want to ask you and share with you straight up in hopes it helps: I'm a smoke too. Have been off and on for 20 years. Not a full twenty years, during that time quit for 8, just not consecutively. I quit when trying for first child and staid quit for 2 years. Same with second. Same with first fusion and same with second. I quit for fusions the minute I knew my surgery date. So as you can see from this thread...I am quitting again. I'm doing it to give me the best possible chance to fuse, and it worked last two times. My disc is gone at l5-s1 and arthritis and bone spur are in that area compressing nerve root, which is why I cannot walk, which is why I have to have fusion.

    And you are correct. When I choose the path (or to be honest, I had no choice, none..had to have it to walk) at 32 for fusion, I was lucky to have a straight up honest dr tell me I was looking at the next one in ten years, because the other disc next door was slightly bulging at the time. He also said to do what my body let me. My body let me run marathons and roller blade. In hind site, this was a terrible choice. Oh well. I did make it eleven years till second fusion.

    So I know fusion gets a bad wrap, and yes, I know if I had not run, maybe I would have gotten 15 years, I don't know. I do know I'm of the mindset that I made the correct choices when faced with pain and immobility. I'm very aware the outcome of this third level is good, indifferent, wheelchair, death. It is the right choice for me.

    I think you have made good choices for you, but understand that fusion to me was a gift, not a curse. And it was because I quit smoking that I was able to grow bone and fuse. So if you do ever consider a fusion, there is help to quit smoking and it is worth it to let that go, even if it is only during the time frame of the surgery and recovery.

    Brandis, so so happy to hear shot was good outcome! Hope you are still relieved?! I laughed out loud at lottery suggestion, I am so gonna use that! I will let you know how it went.
  • And to Sheri: I absolutely love your picture! Beautiful and uplifting, just like you!
  • Sheri76Sheri76 Michigan Posts: 483
    Brentaw, sorry you are going through this. I was wondering also about how they can just leave broken ones in there. Sounds like more of a risk to just leave them in.

    2dgs, thanks about the angel....was paint project just before Christmas two years ago. The inspiration came from paint magazine, showed step by step instructions, like where to start, what colors, and paintbrushes to use. Not as beautiful as the original artists, but i enjoy the process of painting it. Took picture of my artwork, had Christmas cards printed from it....even printed off tiny pics of it to mod podge on soaps for gifts. I don't make the soap though. I give most of them to my son's girlfriends daughter for her to give as gifts....she enjoys playing "Santa". I actually should get started on that.
  • Sheri, have you ever thought of painting that angel on your own? Because it is beautiful and I would love to see it from your hands, free hand. I hope I'm remembering incorrectly, but you are doing okay with arms, correct? Are you able to pain now? If not, I truly apologize if it's not possible now. But if it is, you should paint. Wow.
  • I think you have covered about everything. Your attitude is great and positive. That's the whole key to recovery. I am hoping and praying for a speedy recovery and surgery as soon as possible. Please keep me posted and know that you will be in my prayers.
  • Sheri76Sheri76 Michigan Posts: 483
    Just having a line or circle in place is usually all I need to get started. Usually I draw, or vaguely sketch. Depends on what I'm trying to paint. I've done a couple paintings by watching a purchased video where I did no sketching. I have to get as close to same size canvas as the one shown to keep the same proportional values. One of them turned out really well, my son snagged that one up right away...had some ships in it. Would like to do another one for myself, but that was done in oils, still leary using flammable toxic chemicals, so mostly use acrylics.
  • Sheri76Sheri76 Michigan Posts: 483
    edited 09/12/2015 - 7:18 PM
    Above post meant to add since my fusion I have back discomfort sitting still, and neck issues if I try to keeping looking down. An easel would requiree to bend and lean over more...not able to do that yet either....someday.
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