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Scared to death

Midget329MMidget329 Posts: 5
edited 06/11/2012 - 8:55 AM in Back Surgery and Neck Surgery
Hello all! I am new to this site... I am 32 years old, female, and a mother of a 3 year old boy who is my life. I go on Tuesday for a pre-operative CT scan... I have been diagnosed with DDD, a pars defect, spondylolisthesis of L4-L5 and possibly S1... I will be having an PILF in about a month... They will be doing a fusion with bone graft from my hip, a cage put in after discectomy, and a laminectomy... I scared to death of this surgery but I know that it is needed... Anyone out there with thoughts, encouragement, or advice? Please and thank you! <3


  • Midget,

    First off, a hearty Welcome to Spine Health!!! I didn't know about this site for my first 2 fusions (see below), and like you're describing was scared to death as well. I put all kinds of pictures in my head of "Could this go wrong? Am I making the right decision? Do I really, really need surgery? Could this paralyze me?" Etc.

    I then did a lot of digging on the net so I really knew what they were going to do. I was still scared, but a bit more comfortable that I knew at least what they were going to do. I then looked at the success statistics and so forth. I found that I was more anxious about the surgery than how the surgery itself went!

    You are totally normal, but the good thing is on here we get it! It won't be a cake walk, let no one tell you that, but you will make it through and heal the best you can for your love of your life - your little boy! He will be part of your inner strength!!

    I've got a fairly large surgery coming up around the same time as you, maybe a couple of weeks past yours. Not thrilled, but I know the BIG negative risks if I don't have the surgery - high risk or not in my case.

    If you trust your doctors and your surgeon, that is more than half the battle believe it or not. The rest is following post operative instructions, healing, eating right and loving that little one! We are here for you as well. My back surgeries (see sig. below) are on hold thanks to my neck, but I hear where you are. Gentle support *HUGZ*

    Again, Welcome aboard!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • i have been waiting for my ALIF for over a year and i have just got a date {28/9} dec and to be honest with you i now feel relieved and i can plan for it .your operation is very similar to mine {its not as involved but your op is still a big one } i will tell you what my consultant told me .i am in the uk by the way .i will be in hospital for between 5/14 days depending on how i do {i have had 2 previous operations and my spine is a mess} i will wake up in ITU and stay there for 2 days then all being well i should be transferred to a specialist spinal ward until i am fit to go home .recovery will take between 12/36 months and the first 12 months will be hell.you are younger than me and your operation is not as invasive as mine so you may get away with a better recovery .but never mind what operation we are both having we must stick to the no bending /lifting/twisting rule post op.don't worry too much as soon as that cannula is in the back of your hand you will just drift off and not remember anything .just make sure that you have all you nice things in hospital with you like if you have a pillow you can't live without ! take it in with you .stuff lie lip balm/and all your toiletries family pictures and anything that will make your stay in hospital more bearable .also if you don't already have one a recliner will be a must to help you get comfy when you come home .and if you can get an electrical adjustable on so it will stand you up or lay you down so you can have a sleep .you can find almost new recliners in the free ads and eBay if you can run to a new one .{many are bought for granny at the end of her life and the relatives don't normally want them so sell then for a fraction of what they cost new .there was a leather rise and recline chair made by celebrity {same as mine ] on eBay last month and it went for 200 pounds ! mine cost over 1000 pounds .so have a good luck around .good luck with the operation i will be thinking about you
    tony {uk}
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • It's very normal to be scared because it's a big step that you're taking. I'd encourage you to read as much as you can about your procedure and have full confidence in your surgeon.

    If you haven't already, have a look at the Post-Op Must Haves at the top of this section - good preparation will help heaps with your recovery. You won't feel like preparing meals once you get home from the hospital - I prepared and froze meals to last for about 3 months.

    Recovery is hard and at times frustrating with ups and downs. For most of us, it takes 12 months plus to recover and it's so important to observe the bending-lifting-twisting restrictions - your surgeon will guide you on this.

    Fusion has given me back my life and even though I'm not 100%, I can do most things.

    Hope all goes well for you next month and do post again and let us know how you're going.


    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
  • Thank you all for the encouraging words! I have faith in my surgery team... They are #1 in the South East... I will be at Emory Hospital in Atlanta... I will have a 4-5 hour surgery... I will be in the hospital 5 days and a 6 week recovery... I have never been under anesthesia for more than an hour. I think the biggest fear is the unknown...
    I go tomorrow for my pre-op visit and will get a date for surgery.
    Can't wait to keep in touch with you all!

  • Welcome to our spiney clan! :H

    Trish has given you some very good advice. Definately take a look at the list of useful items for after your surgery. If you want more advice, just ask and I'll tell you what I found useful.

    I would also say that you will need some help with your little boy and household duties after your surgery.

    I had a laminectomy and PLIF fusion for spondylolisthesis about 18 months ago, and if I was in the same position again, I would definitely go ahead with it. It has really helped with most of my pain from that level of my spine.

    Unfortunately, I am still having trouble with other levels of my spine, but my lumbar spine is pretty good. I had a lot of bone removed in the decompression/laminectomy/facetectomy, so my surgeon was able to use that for the bone graft. I was glad not to need bone taken from my hip.

    Ask away if we can help any further and please do keep in touch to let us know how things go. :-)

  • My husband also had what you are having, and my surgeon told me that was done in the past, and they dont need to do that anymore. Can they do the surgery from the front? I think that it hurts so much more when they take the bone graft from your hip.. Message me if you want to.
  • The bone graft from your hip I was told that they dont always do it that way anymore from my surgeon. Sorry for the confusion. :SS
  • My husband will be home with me for the entire recovery period... He's a fire fighter and has earned enough time/paid leave to be with me.

    Any and all advice is welcomed! Whatever you think I should pack, please, let me know!!

    They will be doing the graft from my hip... And not AILF... I will definitely know more tomorrow!!
  • Hi Midget!

    I wanted to wish you the very best with your upcoming surgery.

    Something in your post caught my eye...... when you stated ....."6 week recovery".

    I had an anterior and posterior L4-5 fusion with my hip as the bone graph.

    Before my surgery, my surgeon told me it would take anywhere from 6-12 months for recovery. After surgery, I was told 12-18 months. in reality for me, it really did take 12+ months.

    I was in a hard custom made "turtle shell" brace for 3 months with no bending, twisting, or lifting. I was also told to limit sitting to very minimal ie 30 minutes at a time around 3 times a day.

    I started physical therapy around day 10 and went 3 times a week for several months.

    I am a rehabilitation therapist and I work with babies ages birth to 3. I went back to work after 14 weeks, not because I was ready, but because I was out of FMLA.

    It is fabulous that your hubby can be home with you for the first 6 weeks (please thank him, from all of us spineys, for what he does to keep others safe). You may want to have a back up plan if you you should need it when he returns to work.

    I had a terrible time standing unless I was walking for about 4 months, so cooking anything more involved than using a microwave was not possible. Laundry, vaccuming, pushing a grocery cart, getting down on the floor to "play" or getting back up was difficult.

    I hope this helps. Recovery is long and at times frustrating, with lots of ups and downs, but you can do this! This is the road to getting your life back and enjoying your little one!

    Wishing you the very best and keep us posted!
  • =;
    I too will be having my pre-op tomorrow. I will be having ADR surgery as a alternative to fusion and like you Im really scared! Last night I cried for awhile but after I came to my senses I know this is something I have to do. My discogenic pain has left me unable to stand or walk for more than 10 minutes. I was a gymnast as a child and teen and have worked out my entire life. This new life doesn't work for me at al!! Living with severe back pain is no life and we must do what ever we can to help our selves! Please stay strong,I will too!!! Please keep me posted!!
    11years chronic pain
    1year ago left leg went completely numb w/drop foot
    Endoscopic lumbar surgery to repair nerve
    Collapsed L-5s1
    Confirmed discogenic pain
    Do not take any drugs other than advil
    Artificial disc replacement Sep 1st
  • one person has already mentioned this ..this is a little optimistic ..you may be feeling better in6 weeks but we are looking at at least 12 months /36 months to fully heal ./.info from one of the uk's finest fusion /ADR consultants .no way will you be done in 6 weeks .{good lcuk with you op}
    tony {UK}
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Hi Midget,

    Here is a link to the list of useful items;


    Some of the items are meant for cervical fusions, so you don't need to worry about those.

    I would say that you will need
    plenty of pillows/cushions to help you get comfortable,
    a grabber so you can pick things up without bending down,
    I also found a satin sheet helped me to turn over in bed,
    A shower chair was great to sit down while showering as I felt exhausted,
    Slip on shoes that you can put on without bending,
    loose joggers that don't irritate the incision

    You will need to organise your house so that items you need to access (kitchen stuff and clothes etc.) are at roughly waist height. You won't be able to bend down or stretch up.

    You will learn a lot more tomorrow at your appointment. Do keep us up to date on how you are getting on.

    Take care :-)
  • Hi Midget,

    Everyone is different in their recovery times, and different surgeons give different times to expect. Sometimes they are correct, but quite often the patient will say that they underestimated how long the recovery would take.

    My surgeon told me 3 months, but a different spinal specialist warned me that the surgeon would underestimate recovery time, and she thought it would be more like 6 months.

    Now, I had various problems and complications after my surgery. At 6 weeks I was only just able to take the dressing off, due to a wound infection. I was able to start driving then.

    By 3 months I did feel much better, but definately not back to normal.

    At 5 months I started back at my job as a Teaching Assistant (hard on the back - lots of bending) and in a few days, I was signed off again. A week later, I tried again, this time with a phased return to ease my back into it slowly.

    I would say that at the 12 month mark, I was aware that I had improved quite a bit more than at the 6 month mark. The recovery is long and slow, with ups and downs along the way, but if the end result is a much reduced pain level, I believe it must be worth it.

    A word of caution, especially as you have a little boy. Don't be tempted on a good day, to overdo it. There are many here (me included) who have made that mistake and regretted it with a flare of their pain for a few days. There are even some who have damaged their fusion or the adjoining levels.

    You want this surgery to be the only one that you need. ;o)

  • Midget,

    Basically it will all come down to you and your surgeon as to whether you "should have it." None of us can make that decision for you, only add what we've gone through and too what helped us decide if and when surgery was needed.

    It will all roll down to, do you trust your surgeon, do you believe your diagnosis, is this affecting you daily to the point it disrupts your daily life??? Only internally *you* will know whether you should have it if that makes sense? Sorry, but almost none of this is "black and white" .....

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Midget329 said:
    So, should I have it?
    Sorry, but I thought I answered you? It will come down to you, your surgeons, and your internal feelings of what is going on.... NONE of us can tell you "YUP or NOPE" on surgery. That is YOUR call....

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hi Midget

    As Brenda said, none of us can advise you whether to go ahead with surgery. What we've tried to do is let you know that recovery will take a LONG time. Some surgeons seem to be overly optimistic with the time it takes to heal, and one has to be ever so careful during that time not to overdo activities. Having bone taken from the hip is another area that will take time to heal. I didn't have a bone graft - can't think of the correct name, but it was a substance which encourages bone growth.

    Having your husband on leave and looking after you during the early days will be great and I'm sure he'll cheer you up when you're needing it.


    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
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