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How do you deal with the fear of Surgery?

XenaPortlandXXenaPortland Posts: 33
edited 06/11/2012 - 9:01 AM in Back Surgery and Neck Surgery
Hi everyone,

I'm pretty new on this site, but I have found it to be wonderfully informative and helpful. I am currently scheduled for Spinal Fusion surgery of L5-S1 next Friday and, honestly, I'm freaking out.

My life right now is not too bad. I have pain in my back, and I am really stiff all the time, but as long as I don't do a whole list of things it is tolerable without pain medication, other than just the OTC stuff. The worst is at night, because laying down is really hard for me, and it can be almost impossible to find a position that doesn't hurt. When I do get into a configuration that is tolerable and I fall asleep, and then often roll into some other position while sleeping and I wake up sometimes screaming in pain. That makes it even harder, because I'm afraid to sleep, and I usually get 2 hour bursts of sleep all night long.

When I went to see the doctor, he discovered that in the last 2 years I have developed nerve damage in my back that effects my right leg and foot. He called it "dropped foot syndrome" and it SCARES ME TO DEATH. I know I've been tripping and falling more lately, and he explained that this can be caused by my right foot/leg being weaker and not doing what I expect it to do. It was this, more than the pain or lack of sleep, that made me decide to want surgery.

Since that decision, I've been researching like mad the surgery and the recovery and I've basically determined the following:

1) This is a MAJOR surgery that will require a long and painful recovery from (months and months).
2) I could come out of it worse off than before, to the point where my life, which is now tolerable, could become a nightmare.
3) I'm risking everything by doing this: my ability to be out of pain at least some of the time, to be able to work, to not need narcotic pain meds all the time, and to be able to go back to graduate school which I am planning for the Fall.

But, and this is the biggest part to me, if I were to lose the ability to walk because of nerve impingement or even become paralyzed if I slipped and hurt my back even more, my life would be totally ruined then too. I know I would still have things to live for, but it would be really hard to give up everything I want to do in the future because I decided not to have the surgery.

I feel trapped and really scared. Some of the posts on here and in other places read like a nightmare to me. Maybe most of the people who do Spinal Fusion have good results and don't go online to write about it, but that can't be the only reason why it seems like the overall belief about Spinal Fusion is so bleak.

I've talked to three surgeons and two non-surgeon MD's, all of them say to one degree or another "once you nerve involvement and damage, it is very serious and should be treated". I believe them, and I believe my surgeon is very good at this operation and that he works in the top hospital in the state I live in.

At the moment I'm just waiting for the surgery and prepping my house the best I can. Maybe I'm freaking out for no reason and it will all be fine. I really am trying to believe in that figure my surgeon said that 90% of Spinal Fusions are successful, but it is very hard to convince myself of this as the surgery date draws closer :(

I'm usually a very upbeat person and I have a positive attitude about most things, but this is pushing me into an area I am struggling to cope with.

Has anyone felt the same way? Does anyone have any advice about how to get over the fear?


  • Yes the thought of surgery can be frightening. I have had 3 fusions, the last one being L5/S1.

    You are smart to get your house ready. Have everything at counter top level so you don't have to bend. I had a safety bar installed in my tub/shower and used a plastic stool to sit on.

    I used a long handled shoe horn but mostly wore clogs. Elastic waistband pants are a must. Also a long handled grabber.

    I sleep with a wedge under my knees and it helps take the pressure off my back.

    It is a major surgery and takes time to recover. Be patient. Even tho I went back to work rather soon after my fusions the total recovery time is long, at least a year. I had good core strength and still do regular core strengthening.

    My fusions were all successful. Good luck and think positive.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • I appreciate the helpful tips. I do feel like my house is close to being ready ... I've grabbers, shower stool, etc.

    It is just the fear of this that is getting to me. So many people seem to have awful results, and I can't really tell why. Is it random? Is it lousy surgeons? Is it backs that don't respond to surgery? Is it patients who are either bad candidates (smokers, don't follow instructions, etc.) or generally negative people? Some combination of all four?

    I feel like I am a positive person, have a good bordering on great surgeon, my back is textbook for this procedure, and I am excellent at following instructions. So maybe I will be fine, but I sure wish I could get rid of the intense fear I'm feeling about this :(
  • Yes people have different results but mine have all been positive and I have been pleased. Everyone is different and their bodies work differently so I can't say why some people have more success than others. Sometimes things are found once the surgeon gets inside.

    I had a great surgeon and that is huge. Have you talked your fears over with your surgeon?? He/she might be able to answer some of your concerns.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • I know what you are going through along with thousands of others. It was very wise on your part to get so many opinions. There are always risks to any surgery. I went through a very large fusion and both si joints fused. Sure mine did not turn out well, but I've also had many shoulder surgeries that turned out great. From what I got is that all the surgeons you talked with advise the surgery and if you don't there's a good chance you will have further problems down the road. This is a decision only you can and should decide to make. There are countless fusions done every day but I feel the chance to get some or a lot of relief from surgery surely out weighs the risk of a failed fusion. I wish i could think of more to say to ease your mind. Please let us know what you decide to do. God and all of us are with you. Kevin
  • I have almost the same level of fusions as you do, L1-S1 (with a 360) and am trying to avoid having both SI joints fused. Could you tell me about your fusions?? I know it is a long recovery. How is your movement, what activities can you do??

    Thanks for any info you can give me.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • My fusion L2-S1 was also a 360 with hardware all at one time. It's been 2 and a half years since that fusion. I have good range of motion except for twisting or arching my back. I had ongoing pain in my buttocks, legs, and feet and they said it was because both of my si joints were causing the problem. I had left done first and then had the right done about 6 months after. Those surgeries went well with no noticable loss in movement. However, it did not help the leg and foot pain. It was after that when they realized my l5-s1 didn't fuse properly. I hate to sound negative, but the si joint fusions were not bad at all. 2-3 days in the hospital, but the worst is that you are on crutches and non weight bearing on that side for 8-12 weeks. That's why I had them done one at a time. I don't notice any change or decrease in my range of motion at all. hope that helps you. Kevin
  • I really appreciate the support. I feel pretty confident that the surgery is necessary, and I do think it has a good chance of working.

    I think it is that trapped feeling which is making me most uncomfortable. If I don't have the surgery, then I am risking a lot. If I do have the surgery, I am also risking a lot, but it has the upside of potentially fixing my back so that it won't get worse.

    Whew. I think having back surgery is one of the most difficult decisions I have ever had to make.
  • Thanks for the info. I knew there was a long non weight bearing period involved. I am really nervous about losing more movement.

    My problem is definitely SI joint as I have had 2 diagnostic cortisone injections into them and it fixed the pain temporarily.

    I live alone and the thought of being non weight bearing for that long is kind of daunting.

    Do you ride a bike and if so is that something you are still able to do??

    Thanks again for all your info. It really helps.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • I should try riding a bike again. Just from how I feel, I think it would be fine. My legs are my biggest problem, but I walk as much as I can and I take the steps to our 2nd floor apt. every time even though we have elevators. I was told there is hardly any movement in the si joints. Can't remember the % but it's like 3%. I noticed no change in movement and feel I could ride a bike with no problem. I would say sitting upright and not bending forward as if riding a racing bike with low hanlebars.
  • Thanks for the feedback. Makes me more encouraged to have the SI's fused as they are certainly causing me a lot of pain.
    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Please keep us informed as to how it goes for you with the surgery. I pray the best for you and a fast recovery. Kevin
  • I was terrified before both my C5-6-7 my L5-S1 fusion surgeries for both physical and emotional reasons. But there was also a very clear bottom line in my head - I couldn't live in the pain I was living in and I couldn't live by the grace of daily narcotics, heavy antiinflammatories, and shots of steriods in the spine. There was only one way that I had a chance to get back to something close to the quality of life that I had before I was injured, and that was to have the surgeries. Once I realized that there wasn't really any choice in the matter, the stress that I was feeling lessened.

    And, I can tell you that it was all worth it for me. I'm not 100%, but I am able to live each day without daily painkillers, and most of the time, I don't even think about the surgical sites. They don't feel "normal." I am aware of the implants, that my neck doesn't move the way it used to, that my lumbar is weaker than it used to be, etc. But at about the 2 year mark after the second surgery, I realized that what I wasn't feeling was daily pain.

    So, try to keep your eye on the prize. If you have confidence in your doctor and have prepared your home (as it sounds like you have), you've done what you can. Look forward to working towards a better quality of life.
  • I certainly know where you are coming from re fear of surgery. Like you Zena my pain at the moment isn't unbearable, but I have had this problem for 13 years and it is progressively getting worse so that now in addition to nerve pressure from a pars defect slip of L4 L5, i have virtually no disc left, and I am getting spinal stenosis and loss of leg sensation & weakness - so in other words I need to have it now before permanent damage is done that cant be surgically corrected. But the idea of 'willingly' going into weeks if not months of pain and restricted mobility is scary, even if its for a longer goal. So yes, I would also appreciate any suggestions to get my head around this thing. Its a L4/L5 posterior full instrumentation fusion & laminectomy with interbody grafts .
  • By now you should've had your surgery and I hope all went well!
    I am due to have a fusion at L5-S1 in about 4-6 weeks and I too am scared. I've had 2 surgeries for this level in the last 6 months and it is very scary. Especially bc after these surgeries they've told me that I would need another surgery. I am an active 27 yo who isn't able to work and it's frustrating to not be able to do the things that I love to do! This is why my surgeon has told me that a fusion is my best option in order to get back to things I love to do. Please let me know how your surgery went so I know what to expect after mine!
    Keep your chin up! Things will get better!! ;)
  • It definitely feels easier to take on when you know there are others out there experiencing the same level of fear. Thank you for that.

    My surgery is this Friday. As I posted elsewhere, it has gone from being a single level fusion to a 3 level (L3-L4-L5-S1) after MRI review. Shelly, I know exactly what you mean by the "willingly" part.

    Lese, I also was told that at my age, 44, fusion is a good option because I have years of activity in front of me. Without it, I will never be able to do the things I want to do.

    I really am keeping in my heart all good things for everyone on here, both those facing future surgery and those who surgery is coming up :)
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