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Surgery in 8 days-Please help

Hi everyone,
I am having my second spinal fusion in 3 years next week, and I guess just have some questions and concerns. I don't remember much from my last surgery because I was 12 at the time, on heavy pain meds, and kinda traumatized to the point where I'm apparently blocking a lot of it out. I'm very scared, because from what I do remember, there was excruciating pain all the time in early recovery. Is there anything that people do to cope with it? What is it like? I'm only 15 and scared as hell, so any kind of comments regarding the subject would be amazing.

Thank you,
Gabriella
Gabrielle Catania
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1

Comments

  • PennyPPenny Posts: 162
    edited 02/03/2013 - 1:50 PM
    Welcome. I am sorry you have to have another surgery. I won't lie, it does hurt but if it hurts too much they will give you pain medication. It may be a bit better this time because you are not a kid anymore and can understand what is going on. Practice now telling people your thoughts. Let your parents and doctor know about your fears. When the time comes you will be able to ask for what you need. Lots and lots of people have this surgery every day and do just fine. Talk to us when you need to and until your surgery stay busy. It also helps to be prepared. There is a sticky that has a list of things you might need after surgery. Go over it with your parents to figure out exactly what you need.

    Penny
    4 level ACDF completed on January 3rd.
    I developed an infection which required reopening the wound on January17th
    Looking forward to life without as much pain!
  • FrancineSFFFrancineSF Posts: 318
    edited 02/03/2013 - 1:55 PM
    Hi there, Gabriella:

    First, welcome! You will find that there are a lot of really nice and really helpful people here. Of course, everyone will offer their own experience.

    Second - you didn't mention what kind/area the spinal fusion will be at. Was this from an accident? Sports injury? If you can let us know what type of surgery you will be having - and what vertebrae are involved, others will chime in, too.

    Third, please allow me to make a recommendation. This sounds really "woo woo", but it might help. It helped me a lot before my cervical/neck fusion just three months ago.

    Pain is not only from any potential pain in the area of the surgery, but also can be worsened because of how we handle the anxiety we are feeling - before and after surgery. Studies seem to show that the more anxious and the less calm we are inside can impact how well we heal. the mind is so unbelievably powerful.

    Just a few days before my surgery, I decided to go to Amazon.com and I downloaded right onto my cell phone (which I also brought to the hospital with me with my ear buds) a "guided imagery" audio recording. It was only $9 and it was the best $9 I ever spent because I never felt any pain after surgery at all - and I wasn't on pain meds - even when I got home - no pain meds. Now, I realize that this is unusual and extreme, but I bring this up because there is a HUGE connection between mind and body and healing. It's not meditation, but rather 'guided imagery'. I started listening to it a few days before surgery and continued listening while in the hospital and once I got home, and it really helped me sleep and anytime I had moments of "what the hell did I do?" anxiety - it really helped.

    The nice part of listening to this is that is not about religion (if religion is not your thing), it isn't about asking for anything, it's about really centering qand calming your thoughts and your body in that moment as you listen to this audio.

    I am not allowed to state here which one I downloaded, but if you are interested, please feel free to PM me and I will let you know. No, I don't get a commission from it. :)

    What I know is this - the minute I was wheeled into the hospital room after surgery, I immediately asked the nurse for my cell phone. I plugged in my ear buds and began listening to the "Healing Well After Surgery" segment of the audio recording. I listened to this over and over again until I didn't feel the need to listen any longer. Most times, it would put me to sleep, even when I thought I wasn't going to fall asleep

    Anyway, I am not a salesperson for these things, but I just figured that I had nothing to lose trying it out and while I cannot prove that this is what made the difference because I never had surgery before - so many who have had similar or the same surgery as mine were and may still be on pain meds. So, between having a great surgeon and my own attitude about all of this, I think it helped.

    There may be pain and thankfully there are pain meds that can help. If you add something like this to your arsenal, you might have even better results.

    I wish you well. The biggest thing is to feel confident about your surgeon and a support system around you - your friends and family. Also, if you need things at home when you get home, do as much as you can now to prepare. The more you are prepared, that will help reduce anxiety, too.

    Please keep us posted!
    Francine
    10/26/2012 ACDF C3/4 C4/5 surgery
    No pain; no pain meds - thank goodness!
    04/01/2013 - 5 months + 1 week - FUSED
    Doing some physical therapy for even better range of motion
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  • Hi there, Gabriella:

    One more thing came to mind - someone from the hospital gave me this tip and I followed it before surgery.
    With surgery, as you already know, you cannot have food or beverages after a certain time - 11pm, midnight - whatever.

    The person from the hospital told me this:

    If you want to help yourself towards a better outcome, a) drink as much water as you can up until the deadline. All day long and that evening - - that it is important to be really hydrated before going into surgery. It helps with healing and if you go in dehydrated you're starving your cells and

    b) be well rested before surgery. People think that they will get rest during surgery, but surgery is traumatic to the body, so if you go into surgery without sleep and being well-rested, not only are you exhausted before surgery, but you have to make up for being exhausted before AND the exhaustion that surgery itself causes.

    So, drink and sleep as much as possible before surgery.

    OK - I don't mean to sound preachy and I hope these ideas are helpful. :)
    10/26/2012 ACDF C3/4 C4/5 surgery
    No pain; no pain meds - thank goodness!
    04/01/2013 - 5 months + 1 week - FUSED
    Doing some physical therapy for even better range of motion
  • Hi Gabriella. Yep - straight up , the surgery is tough. But for me one of the things that helped me come to grips with it is that not having the surgery just isn't an option if you want to reduce permanent pain and immobility. The other thing I would suggest when looking through the sticky about what do you need post surgery at the hospital and at home is what makes you most comfortable, distracts you from pain and boredom , and helps keeps your spirits up. Generally the medical staff will prioritise keeping your pain under control. I know my teenage daughter who for her neurological issues has to spend time in hospital finds having an IPad for access to facebook, to download sites and videos etc really important. She also makes sure she gets some new music she's not already sick of on her IPod. Some of the other teenagers in the neurology unit she has to go to have their own blogs they run so their closest friends can stay up to date about how they are going without broadcasting it to everyone on her facebook friends. Are you having the surgery in a mainstream hospital or a children's hospital? Most big hospitals with a reasonable number of teenage patients have good occupational therapists or education support people who will also help you get through your stay - might be worthwhile asking about that before you are admitted. The other thing to remember when you read most posts on this site is that people generally come here when they are first facing surgery, or when things are rough. When things get better they don't post as frequently as they are back to living their lives. So don't think everyone who has this surgery has uncontrolled pain - many many people do have good medical support to help with their pain after surgery, and go on to after a couple of months t have no significant pain. Your youth will help you with this, so I think you can be positive that you have every chance that this won't be some brick wall you are hitting, but a challenge that you will beat and then just be able to get on with your life. Stay in touch.
  • jellyhalljjellyhall Posts: 4,345
    edited 02/04/2013 - 3:44 AM
    Welcome to Spine Health! This is a great place to talk to others who have gone through similar experiences, and lived to tell the tale! There is also a lot of information about conditions and the treatments including surgery. On this forum, we are a friendly bunch who are willing to share their stories.

    There is a thread for February surgeries, and joining that will mean that you can talk to others who are facing spinal surgery too. This can be especially helpful after surgery while you are in recovery. Being able to talk to others in a similar position can be reassuring that what you are feeling is normal and it is helpful to pass the time each day. (I was on the November surgery list and we were a very active thread.)

    I had a lumbar fusion in March 2010 and an ACDF (neck fusion) in November 2012. Both times the pain was not as bad as I had feared. I was very scared, especially before my lumbar fusion and I read a lot to learn about the surgery and people's experiences afterwards. I was ready for a very painful recovery period, especially in the early days. I did very well and surprised myself, my family and even the medical staff at how well I coped.

    I think fear can make the pain worse afterwards. I agree that having music to listen to is very helpful. I am a Christian and prepared a CD of calming Christian music that made me feel safe. I used that in the lead up to surgery, during my time in hospital and afterwards at home. It really helped me to focus on something other than the pain.

    I agree to read about useful items to have after surgery and prepare your home. If you let us know what levels you are having fused, we can suggest some items for you. There is a thead at the top of the back and neck surgery thread, if you can't find it let us know and we can post a link to help you. Don't be alarmed by how many items are on that list. They are just ideas, and cover all types of spinal surgery.

    Shell has given some great ideas of ways to stay in touch with friends and amuse yourself while in your recovery. Do think about how else you can fill your time. Any books you would like to read, films to watch, crafts to try? This recovery is long and days can be very boring.

    You are young and that should be in your favour for a smooth and quicker recovery. If you follow the restrictions that your surgeon gives you, you should make a good recovery.

    Do hang around and ask any other questions you may think of. We will all be more than pleased to try to answer them and support you through this anxious time leading up to spinal surgery. Many of us say that the anxiety leading up to surgery is worse than the actual surgery. I hope that you will be able to say the same thing. Looking forward to getting to know you better :-)
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  • Thank you all for the comments, they are more helpful than anything else so far. And my injury was from a long time ago, kinda a long story too haha. I was a gymnast from when I was 2 and a half up until I was 11. I had a stress fracture in my vertebrae that I didn't notice until a year later when the vertebrae broke and fell on my spinal cord. I think it's called like spondelolythesis(?) and there was another one too that had a really long name. Anyway, I had surgery about 3 years ago but it wasn't successful because it didn't ever fuse completely and last year one of the screws broke. Thank you for all the ideas. I definetly agree with the guided imagery and planning ahead. I have another question I'm a little ashamed of, but I've had a drug problem over the years, and I heard smoking cigarettes is super bad and I'm wondering about other drugs? I havn't done any hard drugs for a while, but I relapsed on marijuana fairly recently. Does anyone know how those two affect the back?
    Gabrielle Catania
  • Hi there, Gabriella:

    Thanks for being honest about your cigarette and drug use. While there will be people on here who will tell you that they fused while smoking cigarettes/tobacco, the overwhelming information is that it seriously puts fusion at risk.

    If you can stay away from tobacco, before and after fusion, the chances are much much better that you can fuse. BUT, that doesn't mean to stop smoking tobacco the day before surgery! It really needs to be out of your system - so if you are taking in tobacco products - STOP NOW!

    By the way, were you smoking tobacco products during your last surgery/fusion - and even up to a year after your surgery? If so, that is REALLY telling about the failed fusion you experienced and hopefully if you are truly scared about this surgery, that will be motivation enough to stop smoking. YOU CAN DO IT! The fear of failed fusions and more surgeries can be great motivation right now. :)

    Now, the question is - does the marijuana you smoke contain tobacco? I am not here to tell you you should stop smoking pot, too - but if the pot you do smoke is mixed with tobacco, you really have to stop! If giving up pot altogether is just not possible in your mind, then find some that is not mixed with tobacco. You're already bad experience with the failed fusion has to become the motivation to stop, if you really want this surgery to be successful. It's really that simple. And, it's your decision. No one can do this part for you.

    You will have plenty of people on here telling you to stop both - and of course, because of your age, it would certainly be a lot better if you did - but if, at minimum, you can stop taking in tobacco products, you'll have a much better chance at fusing given your previous experience.

    Perhaps the guided imagery will help you with that, too. :)

    Thank you for your honesty and candor. It makes a world of difference with everyone trying to help. :)



    10/26/2012 ACDF C3/4 C4/5 surgery
    No pain; no pain meds - thank goodness!
    04/01/2013 - 5 months + 1 week - FUSED
    Doing some physical therapy for even better range of motion
  • hello gabriella,

    so sorry to read your post - feel for you massively. my son is 15 years old and is now 8 weeks post op from a microdiscectomy (md) in his lower back. an md is a lot more minor than a fusion though.

    a few thoughts come to mind....

    1. it's natural to feel scared before something so daunting, so don't feel worried on that front.
    2. there is a big difference between a 12 year old and a 15 year old. at 12 you probably didn't really understand what was going on and it is not surprising that your mind has blocked out a lot of the details. the good news is that at 15 you are a lot more mature and able to understand better. and you are being incredibly sensible in reaching out for support - well done.
    3. be prepared to tell people how you are feeling - both emotionally and physically. all around you will be longing to help, trust me on that, but you do need to talk to them and let them know what you are feeling. at times my son hesitated to say he was in pain or feeling low for fear of bothering others or being a nuisance. without even knowing your family and friends i can confidently say that they really will not mind you telling them what you are feeling, even if it is the tenth time that day!

    i have been keeping a blog of my son's progress if you want to read through, https://www.nickmicrodiscectomy.blogspot.co.uk. i will be updating today/tomorrow for his 8 weeks post op status.

    also, i would be very happy to chat to you and/or your parents if you would like. send me a pm to make contact.

    hope this helps - feel free to contact me if you wish,

    rosey
  • jellyhalljjellyhall Posts: 4,345
    edited 02/05/2013 - 6:50 AM
    I agree with Francine and Rosey has given some great advice too.

    If you are smoking cigarettes, then I really advise you to stop. Smoking is known to really increase the risk of non fusion. Many surgeons will not do surgery on patient until they have been smoke free for some time before surgery. This time probably differs from surgeon to surgeon. They even test the blood for nicotine. If you were smoking before your fusion, that could be why you didn't fuse. (Unless there is another reason) Nicotine also causes the spine and discs to degenerate quicker. I don't know about any other drugs and how they would affect your fusion. I suspect that they are not going to help with your body recovering from the anaesthetic and other drugs you will have for pain after the surgery.

    Gabriella, can you get off all drugs and cigarettes to give your body the best possible chance of having a successful surgery this time? It really could make the difference between a successful surgery or being left with needing more surgery to try to get you out of pain. I know that it can be very difficult, and if you don't think you can do it, you really need to talk to someone and let them know that you need help to do this.

    My lumbar fusion for was a grade 2 spondylolisthesis, caused by a pars defect that had a stress fracture. I was told that this would have happened when I was a child or young teenager. I used to dance in my teens. My fusion with decompression (laminectomy and facetectomy) gave me great relief of the sciatica and lower back pain. Looking back, I did have back pain when I was young, but it was only in my 50s that I really thought I had something wrong with my back. By then I could only stand for about 5 minutes before I was in pain and walking for more than about 10 minutes would have me looking for somewhere to sit down. I was told that it was amazing that I had carried 3 pregnancies because they were known to pull the slip further forward causing bad pain. I did have pain and sciatica when I was pregnant, but I thought it was normal! I was also told that young girls with my problem were offered a spinal fusion so that they would be able to have children without this awful pain. I have spoken (a long time ago) with patients on this site who were in their early 20s are having a fusion for this condition. They had the fusion and are gone now, back to their lives again. :-)

    Do ask any other questions you may have. I will be happy to do my best to answer them. :-)
    Coming here to talk to fellow spine pain sufferers is a big step to helping yourself.
    Take care, Jelly xx

  • Thank you again for all the support. I can stop both immediately knowing that they make that much of a difference! I was smoking at the time of my last surgery so I guess that could be proof that it really does affect bone fusion. Kinda scary to think about! I messed up and smoked a cigarette yesterday, and my surgery is now in 6 days. Could this be possibly dangerous, even with stopping now? And at the time they think one of the screws in my back broke, I had become addicted to heroin and meth...could that possibly have something to do with it all? Oh, but I have almost 5 months off all drugs, except for that one relapse a few weeks ago.
    Thank you
    Gabrielle Catania
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