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Dead scared

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:24 AM in Back Surgery and Neck Surgery
Sorry - posted this in the wrong bit (new!)

I have spinal stenosis and spondylolisthesis L4/L5 L5/S1. Have had each of facet joint injections, rhizolysis and lumbar epidural - limited benefit, now awaiting surgery. Dead scared of that - decompression and stabilzation. Don't really want anyone playing around with my back and some of the posts about complications scare me also.
Constant pain, numbness, tingling - you know it. Who can reassure?
I was in shock when i spoke to dr, so can't remember how long I'll be in hosp and how long till I'm walking, driving etc. (BTW - excuse my ignorance, but what's blt??)
Jay
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Comments

  • Welcome to spine health. We are here to give you all of our personal experiences but not medical advice.

    BLT stands for NO BENDING, LEANING , TWISTING. That is usually the standard for back surgery until your dr releases you to do so.

    What surgery are you having??? A fusion?? I am just guessing because of the spondy.

    Do you have numbness/tingling now??

    My fusion surgery went very well. My pain went away. Yeah I had a back ache here and there. I oly had to have mine redone due to non fusion.
    Now we found the reason I did not fuse is lack of blood flow to that area, which is getting fixed for a totally different issue.

    Spine surgery is scary for anyone. But once you have tried all alternative treatments and your dr suggest surgery which is the last option. Most of the time they are right.
    If you are unsure and are able to get a second opinion do that also. That way you have 2 DX's to go with.

    My ortho told me the only way to fix the spondy is by stablizing the spine. All that pain went awayyyyyyyyyy.

    If anymore questions please go ahead and ask away. We are here to support you through your journey.

    Take care
    Terri O:) O:) O:)
  • No worries about posting wrong the first time. Actually there's no real right or wrong to it, so don't sweat it.

    BLT is "no bending, lifting or twisting"

    Welcome to Spine Health. Remember that many people come here looking for answers and information. After surgery, those with positive outcomes tend to move on because they don't feel they need the support. So the majority of people here have had a bad outcome or two. So there are many many people with positive outcomes, they are out living their lives again!

    It's understandable that you were so shocked by what you were told that you forgot a lot. No worries the NS and his staff are used to it and I'm sure if you give them a call they will help you out. Of course you may find the answer here too.

    Welcome,

    "C"
  • I had fusion surgery the end of June and am doing great! Thought I'd never get to this point, but I did. I followed my dr.'s instructions to the "T" and everything went well. I had the spondy-thing, too, along with 2 cysts, herniated discs, etc.
  • Me bold. Sorry the L can stand for both I guess. My mistake So yeah both lifting and leaning lol :D
    Thanks 'C' for the reminder ;) ;)

    I forgot to mention. You will be walking right after surgery as soon as they get you out of bed.
    Last yr I did not get out of bed till the 3rd day because I was on such high doses of pain medication.

    This yr my surgery was in the afternoon.
    I got out to walk the next morning. Walking will be your only exercise for awhile till your dr releases you to do stretches and start physical therapy.
    Driving depends on the dr.
    Alot of things also depend on if your going to be in a back brace or not to.

    Hospital stay depends on what happens, type of surgery, the dr and how your recovering. They usually want you to be able to walk, climb a few steps, sit up in a chair and keep down solid food.
    1st surgery Mon-Thurs
    Revision surgery Wed-Fri ;)
  • Everybody's bodies react differently to surgery, so it's hard to predict an outcome. I have had two fusions already, each with different outcomes. My first one didn't relieve any of my pain, in fact it made it worse. My 2nd one though (2 months ago) worked amazingly. In fact I can now take less meds than I have in almost 5 years. I am also wearing a Bone Growth Stimulator, which helps alot.

    I know it's a scary thing, but the dr's know what they are doing. Once you have the surgery, the best thing to do is to get up and moving as soon as possible. Not gonna lie, it's going to hurt like heck. But the sooner you get moving the better off you will be. My hospital stays were 4 days and 3 (including surgery day). Once you are able to care for your own personal needs, you will be released usually. Somewhere on this site there is a "to do" list of things that you can prepare before you go in, to make things alot easier for when you get home....it's very helpful.

    This is an amazing site for help and support. When you think that you are alone in your struggle...remember you aren't. Many of us have been right where you are, and we are more than thankful for being able to help someone like we were helped :).
  • at the Good News section of this forum. The things needed post op(the to do list brucie speaks of) is listed under this section at the top. There are lots of people with good outcomes from surgery. Try and keep yourself surrounded by positive thoughts. If you are very confident in your doc, you will do just fine. Good luck and please keep us posted.
  • Wow - such support! Thanks all. My op will be decompression and fusion - grinding off the knobbly bits, then plates and pins. Have seen ref to bone grafts. Don't recall my dr mentioning that. I'm amassing a list of questions for my pre-op assessment in a couple of weeks.

    Brucie - were your 2 fusions different sites, or a 2nd attempt at something that didn't work so well?

    TerriJV - yes, numbness and tingling now, and always! Can't remember what it was like without. Numbness back of right thigh, both lower legs, feet and toes. Tingling mainly ankles downwards - bit like that awful pins and needles when you've been sitting on your legs for a while. In fact numbness & tingling bothering me more at present than the acute sciatic pain. The latter comes and goes. Hey ho!

    Great to know there's so many people out there to share with. Brill site.
    Jay
  • My first fusion was L5-S1....that fused just fine but I was still in too much pain. My 2nd fusion was L4-L5...where after complaining for years of the pain my dr finally found I had severe stenosis at that level. They removed the screws at L5-S1 and replaced them with new ones while fusing L4 to them. I also had alot of numbness and tingling, quite a bit of which has gone away since my 2nd surgery....thankfully. I used to not even be able to walk a short distance without my right leg going completely numb....and now I can walk to and from my post office and not be in pain at all. I think I got real lucky this time around...and they were able to fix my problem.
  • Jay I was so scared I almost cancelled my surgery. I said a prayer and went through with it. It was not easy but it was not nearly as bad as I expected. The hardest part for me has been the long, slow recovery. Ask your doctor all your questions, read here be positive and you will do great.
  • }:) I think we were all scared before surgery. I have had 2 fusion, only 6 months apart and it was harder going into the 2nd one after such a short time. But both were successful and my pain is greatly reduced. There is a lot of planning to do to set things up at home so your recovery goes well. Be patient, it takes awhile to heal.
    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.
  • Hi Kelly Jo - think that's where I am now. Wouldn't take much for me to back out, but I know I'll go through with it. No option really - it's been over 4 years without let up, and 3 non-invasives that haven't worked long term. But when I have a good day, I think do I really want the agro..... then I'm back to the bad times, and I can't wait!

    You say long hard recovery. What have you managed at, say 2, 3 and 6 months? I know it depends on the individual, but it helps to know.

    The only exercise I do is swimming - back locks up when I walk, and I have RA so that limits other stuff. Though I'm longing to get back into my gardening. I guess the swimming will have to wait till the wound is fully healed.

    Thanks.
    Jay
  • Hi Kelly Jo - think that's where I am now. Wouldn't take much for me to back out, but I know I'll go through with it. No option really - it's been over 4 years without let up, and 3 non-invasives that haven't worked long term. But when I have a good day, I think do I really want the agro..... then I'm back to the bad times, and I can't wait!

    You say long hard recovery. What have you managed at, say 2, 3 and 6 months? I know it depends on the individual, but it helps to know.

    The only exercise I do is swimming - back locks up when I walk, and I have RA so that limits other stuff. Though I'm longing to get back into my gardening. I guess the swimming will have to wait till the wound is fully healed.

    Thanks.
    Jay
  • Welcome Jay.

    There are a good bank o ppl here and between us we can offer a vast selection of experinces!!

    Spondy cases are usually very successful (although all the surgeries, like ANY surgery) has it's risks, which you need to be fully aware of but in perspective.

    If you are at the end of your rope, pain 24/7 and have little / no quality of life you really have nothing to fear. The surgery hopefully will resolve most of your current aches/ pains but the recovery is SLOW no really SLOOWWW as fusion is major trauma.
    Sure, post op you'll be weak, may feel sick, bed bound, catherised but the pressure off your spine and left with surgery pain...god willing!

    Where in the world are you? Do you have a date yet?

    Take good care!
  • Jay,

    I had double fusion L4-5/S1 on October 7th, I went back and forth for several months. I had put up with pain for 10 years. Getting progressively worse for the last 6 months to a year.

    In August I was resigned myself to fusion of L5-S1, I went to the doctor to discuss this and surprise I needed a two level fusion. I left with a surgery date and the matter was taken out of my hands.

    For 6 weeks I went back and forth no i don't need surgery.. as soon as I said that... knife stab, tingle, etc started so I figured... here's my sign.

    When I checked into the hospital on Oct. 7th I was fine until this nurse came in and started scrubbing my forehead, legs and ankles and applying electrodes, I was informed these were to monitor reflexes, blood flow, ect. THAT IS WHEN I GOT SCARED. Luckily my doctor was there and so as the good drug doctor. The drug doc gave me some feel good stuff and the next thing I knew I was being wheeled into my room. Everything worked, there was no pain (other than the incision area).

    I was in the hospital for 4 days. The day after my surgery I was gotten out of bed. and walked to the door. EAch day it became a little easier.

    Here I am 3 (4?) weeks post op and am glad I went thru the surgery. I can now sit for extended periods of sitting, walking and standing.

    As long as I don't do anything stupid for the next 3 months I'll be ok. At 3 months I start PT.

    The one thing I don't like is having to depend on someone for my personal care (even if it is my husband).

    1. When I got my turtle shell, I put it on as tight as I could and played Goldilocks to see which chair fit me the best, could I get in and out of bed, etc.... I found that I could not get in & out of the bed so I had my doctor write a prescription for a hospital bed.I made sure to request remote control.
    I can now sleep in my bed but am more comfortable in the hospital bed.

    2. My doctor has e-mail. If I have any questions or concerns I send him an e-mail. I have confidence in this method of communication as nothing gets lost in the translation.

    Jay you are the only one that can decide if surgery is right. Do you have confidence in your doctors and you are comfortable with them For myself I tried EVERYTHING and surgery was the last resort.

    My surgery may just have given me my life back.

    Lili


  • I was dead scared, too. somewhere I heard that when the fear of staying the same or getting worse outweighs the fear of surgery, it's time to have the surgery. that couldn't be truer for me. when I decided it was a MUST, I read all I could about it. I decided people go through this every day. 100's of people. long ago I had decided 1000s of people run marathons every weekend. if they did, I could,too, and I did. :) for this, I decided if 100's could do this and survive and be success stories, I could, too. I was one of those few with complications (I got a lovely MRSA-HA staph infection & therefore 2 emergency surgeries after the fusion)... but that is very rare. in my case, I was #3 in a specialty spine hospital that has been open 6 years. and even so... after 7 weeks of hell, here I am so thankful I am fusing and have my stability back. I still have pain, still on meds, but at least the fusion that was needed is taken care of. you can do this. I had serious anxiety for a couple of weeks and I finally gave in to the decision and then somehow I found peace & then I actually looked forward to getting the help I needed. I hope you will soon, also.
  • My three level fusion is in 6 days. I'm REALLY nervous but it has really helped to read the posts. I think I am all prepared for hospital and home. I have every confidence in my surgeon. I hate the anticipation. Just want toget it overwith and start the recovery. We all need cheerleaders. This site helps a lot. So glad i found it.
  • You didn't say what type of surgery you are having. I know I wanted to back out a hundred times before the "S" day. It's 4 months behind me now, and I'm so glad I went ahead with it! If you have a good surgeon and follow what he tells you to do and not do, you will do fine! Keep us posted, ok?
  • I'm having a Lumbar fusion of 3 thru S1. I had a two level cervical fusion in 2005, and a total hip replacement in 1996. I have osteoarthritis and DDD. I'm hoping that this will be the last surgery for me for a while, unfortunatly my hip replacement is 13 years old and they don't last forever. Keeping my fingers crossed.
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