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Wanna talk to those who know

Hello everyone. As some of you know my name is Shawn. And I am having a four level fusion on Oct. 3rd. I just got the phone call two hours ago. I am filled with several different feelings and using this place to vent a little. It feels so weird when I look back on the journey to where I am now. To break it down into sections it would look like this:

Pain: in the beginning it was never constant but in a single movement something felt like it got pinched and I couldn't walk for days. Then the acute part would end and then I would ease back to being completely normal. As time passed it got worse and the recovery time was longer and longer. Then the pain became a constant thing. The constant part was a 3-5 on the pain scale and a solid 10 when I would have an episode.

Doctors visits: I remember after the car accident 7 years ago I started on a journey to getting everything else fixed first. Neck surgery, and then shoulder surgery. When it came to my back next the MRI showed one back disc and the area looked like it was acute. I opted out of having surgery and it was recommended that I enter into PM. I decided to do it on my own for a few years with no pain medicine. Until I had another acute attack is what I will call it here. And decided I would try PM. Did the shots, pt, lots of pain killers and still have gotten worse. Then two months ago out of no where I had another attack except this time instead of it being instantaneous and stuck in my bed not being able to move, it gradually came on. Over the course of two hours of getting ready for work and sitting at my desk the pain increased so much. Then thought I better get to my chiropractor and lay on his rolling bed to loosen it up. He freaked out because I could barely walk then and then back to my truck to drive myself to the hospital. I barely was able to limp into the ER. And when I sat down that was it, I could not walk for three days. Started the whole process over. You know what I'm talking about. Doing the MRI first. In the ER. Was lucky there. They usually don't do that. Was told that I had a total of four bad discs now. First surgeon said he could not help. Went back to the same surgeon who did my neck and he started to say the same thing but then ordered a Diskagram. Along with a bone scan. Holy crap was that Diskagram painful. So there was a discussion of whether or not to do the two that were really bad or all four. And since it was a good possibility that I would be back to have the other two done it was decided to do all four. But not until I saw the neurosurgeon who assisted on my neck as well was consulted. Which to be clear they will both be involved in this surgery. The neurosurgeon confused me a bit by saying, by having pain in all four discs confirmed to him that I needed the surgery. If I would have had pain in only two of them be would have questioned the test.

Mental aspect: It is all very confusing to me. To have been told all this time that I was not a surgery candidate to doing a four level fusion is off the charts messed up. Even with having several opinions I still feel it is a toss up. Half say don't and the other half say this my one chance to get rid of 70% of my pain. At 60% odds I have to take it. As you guys know. Pain changes you. I stay single now because it is not fair to bring someone into my life with all these challenges. Always being in pain has made me miserable. Outside of work where I wear a mask. I stay isolated to hide from people and my family how much pain I am in all the time. I think to myself how sorry I feel for those who have to take care of us day after day because of how dibilitating the pain is. How it must wear on them to have to carry the load all by themselves. Relationships take so much work as it is. You compound situations like this onto it and it's no wonder things fall apart. And I don't wanna be selfish. I want my family and girlfriends to be happy. My hat is off to those who do this with grace. You can't see pain. Only the result from it. Depression, not able to contribute to the chores of a running household. Throwing the ball around with your kidos. Little things like staying the whole time for an event. Movie, dinner party, etc.. I get so sick of it I could just scream. This of course written while I am in a lot of pain. So I feel the person who writes back during one of there good days and says don't give, fight through it. Think of your family. Bla, bla, bull hockey. I want a cure for the pain. I do not want to be in pain any more.

Surgery: You guys have been a great help with what to expect when it comes to after the surgery. The doctors told me I'd be in the hospital for three days and home for two weeks before I could return to work. I found out for you all that was pretty much a lie. Guess the insurance companies have trained our medical professionals into what to say to their patients. Sometimes it's just all about the money. And I have good insurance. My deductible has been met and they will get 80% of their money within 30 days of the surgery. So why I ask are they still like this?

Family: Luckily my sister is going to quarterback this for me. I devised a plan to share the burden between all of them to take shifts so that no one person is being overwhelmed with having to take care of me. We all live (brothers and sisters along with my folks, neighbors and friends) within 15 min of each other and I have been a pretty good person to all of them so I am optimistic.

My gosh! Four levels fused.... Has anyone here had this done and care to share it with me? I would love to here from those who are willing to share.

Appreciate you guys.

Have a good evening.


  • First I see your kind of new around here, so welcome if I haven't said that in the past. You are a 100% correct when you say pain can change you, not intentionally, I call the unintended consequences of it. I think your doctors are trying to stay optimistic about your situation which maybe why they said the fast recovery time. AS you go through this procedure remember no 2 patients are alike everyone heals at their own speed. I like you was in a car accident 7 years ago and had my whole life changed as a result of it. While I have not had my back operated on, and from the neck side, my story with the neck surgery is a little messed up, but at the end of the day it is a 4 level fusion through the course of 6 surgeries spread over a 4 year period. The one thing I know is while the pain changed who I was at sitting very long or going places, it has not changed my core beliefs of who I am, just the physical me. Those are the important things when we talk about changing you.

    As far as your surgery itself, it sounds as though you have your basis covered, maybe when your healed, you can have a dinner party for all those whom helped you, or a BBQ. Just something small to say "hey thanks". But for now you will need their help and don't be afraid to ask for it. You don't want to do anything your not supposed to do, and mess it up, to have a repeat surgery. Also during your recovery if you feel something isn't right don't hesitate to call the surgeons. They are not only there to do the surgery, but for the post op care. I usually tell members to be sure they have this covered as to what the proper protocol is, so you know. Be sure you have enough pain medications when you leave the hospital to cover you till the post-op appointment. Typically the surgeon will say see me in two weeks, and I would have that appointment set, so you know exactly how long you have to go with the medications.

    Once they tell you to begin walking, be sure to do so. Remember the walking is above what you do in the house to get around. Some folks get a pedometer, to ensure. There are some great walking programs on the net, such as 10,000 steps, to help guide you through a program that is measurable. Walking will be your single exercise program, and you will have to build your core body back up. Don't be surprised if your very tired, as your body has just gone through a major surgery.

    One thing I do suggest is figure out where your going to camp out when you first come home, be it a bed, couch or whatever. Put a cooler there along with other things you will need such as pens, paper, books, phone, computer, cords and so on. The cooler is just so you have some ice easy available but also a something to drink as you need it, or something to snack on, when you take your medications. You can also prepare some meals up front and break them into smaller proportions ahead of time and freeze them. So as you begin to move about, your not soley depending on them, but can do little things on your own. Remember part of your restrictions may have you not going up and down steps, so if you have them in your house and need to plan around them to do so. As a single person and coming home by myself following my surgeries a lot of planning went into surgery, so I could be the most comfortable. You might also invest in a cleaning service to have your house cleaned prior to surgery, so when you come home it is all cleaned up and makes it just nicer to come home. Don'r worry about over planning your giving yourseff the best possible chance at a smooth recovery. Another thing I suggest is paying your bills up front, so you don't have that burden hanging over you either.

    One of the most important things you can do is keep up on your pain meds. Remember your body can't heal if your in pain. So sense your live alone, you might invest in a pill box that is split in several places. I only suggest this, as sometimes when we are in pain it is easy to forget if we took something or not. But also let someone in your family fill it for you and be responsible for your medications. You can also just write it down in some place what you took at what time. But do devise a plan, so everyone knows. Typically the meds are pretty strong at first and so you want everyone on the same page.

    Given your geologic location you might be contending with changing weather, so plan clothing wise and blanket wise if you need to do so. Remember elastic style clothes will be your best friend, given the incision location. There are plenty useful tips in the surgery must have's thread in the surgery forum at the top of the page. Your biggest restriction will be no BLT(bending lifting and twisting). So as you go through a day, look at the things you do and how those restrictions would effect the BLT, and you can plan for it. A grabber will be your best friend. You might be using a walker at first, as is typical, so if you have any tight places that you can't get through with one, decide how your going to get past it.

    There is obviously so much more, and as you begin to think about your date and plan, you will come up with more. Your planing will go a long way in your recovery. Hopefully you will soon be on the other side and feeling so much better. I always like to say the surgeons can only take us so far then it is up to us the patients to do the rest. Recovery is without a doubt a hard job, but it is for your benefit to have a successful surgery. Hopefully you know what type of bone filler they are using and have discussed that at length to insure a good fusion? Just remember a positive attitude goes a long way in the recovery. In the grand scheme of things your recovery is going to take about 2 years, but not 2 years of feeling like you do when you wake up from surgery, just in getting your body stronger and the fusion to fuse. Sometimes the pain is gone immediately and sometimes it takes sometime for the nerves to heal, hopefully you are lucky and notice it when you first awake, as many have.

    But good luck on your surgery and remember we are all here to support you as you move through this. Also be sure when your a success to come back and write about it. You don't see as many successful stories, while I know they exist, but members get busy with everyday life and tend to forget about posting it here. Anyway good luck on your surgery, sounds like you have a good team in place.
  • Shawn
    its understandable to be 54i77ing yourself about now !! i was when i was called up to have my fusion ..yes is a big operation and you will need lots of help afterwards .and recovery is no picnic ,there not much more to say that when we last conversed all i can say is i wish you a successful operation and a speedy recovery i know its a but of a cop out but .you know the odds you know what to expect .its wont be easy the first week will be bloody awful and you will thing WHY did i do this ??? i questioned my mental capacity on several occasions .post op ..in fact it took me a year to make the decision to have the operation then a year to go on the list..i pulled out of the waiting list once as i was terrified .but after i realised that ..this was my only choice and i was going to get to the point where an operation WOULD HAVE NOT BEEN AN OPTION .i changed my mind and reluctantly opted back in to the system ..its been 9 months now and i am not where near right but what would i have been like if i would not have had the operation ...my medically trained wife thinks i would have been a lot worse than i am now ..{she is a health visitor was a midwife and nurse}so qualified to comment through professional observation ...good luck my friend try not too worry too much
    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
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  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 377
    Good string of conversation here. Very close to my 9 year anniversary, I was diagnosed with colorectal cancer, just over 1 month after we had settled on the house we had built. After surgery, 6 months of chemotherapy, returned to work for 1 year and then on long-term disability and SSA disability from February 2002 until mid June 2005. My divorce finalized in November 2004 as the cancer, gastroparesis, and disability destroyed my relationship with the woman that meant everything to me. When I returned to work in June 2005 I was weak but excited to be back in the saddle (so to speak). Then my back pain started again - I had issues with it off and on all through the 1990s and had PT and arthoscopic surgery for the L5/S1. But, the pain in the fall of 2005 was debilitating and I could no walk more than about 10 feet before I had to sit down. My NS fused L5/S1 in December 2005 and I felt pretty good for a couple of months but then the pain started coming back sometime around April-May 2006. From then until early 2010 I managed to deal with the pain by taking my meds but my situation became steadily worse andwas having all sorts of procedures for my back: epidural, RFL, and any and every other injection or procedure short of surgery, Then in December 2010, I fell and ruptured my eurethra. I had a suprapubic cather for 6 weeks while I healed. After removing the epidural I went back into the hospital in February 2011 to have my urethra reconstructed then another 6 weeks of catheters to heal. Once back at work, I had to deal with my back pain and the docs determined that my L5/S1 fusion had failed and I had a couple of loose screws (who would have thought that about me? :) ). In May 2011, I had an ALIF L5/S1 fusion with a cage of stem cells that I had to wear a zapper for 3 hours a day for a couple of months. Unfortunately, the surgery did nothing for my back pain. Since then, I've done two SCS trials, had the permanent SCS implanted followed by two more surgeries to repair SCS movement issues that increased my pain. In September 2012, I had 3 days of Kettamine infusion but that did not help either.I had the second SCS repair procedure on Tuesday of last week so I'm in pain from that surgery. After the Kettamine infusion did not help, I finally gave in to the docs and went on disability - I was exhausted.

    From 2010 to the present, although I am remarried, I have had to mainly rely on friends to help me out including dropping me off and picking me up at the hospital for my surgery and procedures and being at home alone while she was out doing volunteer work or visiting with girl friends. When I was at home recuperating from the urethra injury and subsequent reconstruction, as well as the May 2011 ALIF, I got almost no help from her. One weekend, she went with some of my extended family to the beach for the weekend and did not call to check on me even once. Even now as I sit here recuperating from my second SCS repair surgery, I fend for myself most of the time which includes taking care of our dog too. She says she cannot handle the medical issues and cannot empathize with me. She obviously pretends that I am well as she gets angry when I do not want to go to the movies, dinner, parties, etc. Before she and I got to involved I told her all about my medical issues and my back as I wanted her to know what she was getting into with me.

    If I had known my health was going to deteriorate this quickly there is no way I would have got seriously involved with her or anyone else as I would not want to knowingly put that burden on anyone because I knew from experience what it could be like from the negative perspective.

    My apologies, I am probably rambling. I am not writing this looking for sympathy or pity but to make the point that this pain forum and its many topics and participants or commenters does me a world of good. It helps me to know that there are others that are dealing with similar issues or, many times, much worse issues than I. Just remember: Every day is a holiday and every meal a feast!

    Semper fi, Jerome
  • lstellerllsteller Posts: 1,428
    edited 09/24/2012 - 8:18 PM
    Hi Shawn - I had a three-level 360° fusion, L3 - S1 in November 2008. It was hell. The surgery was awful, the recovery was long and hard, but I made it through. It's almost four years ago now, and I'm still pretty stiff. Riding in the car is not good for long trips, but I manage to function fairly normally now. Yes, when they first realized how much damage there was to my back, they said they couldn't help me. I wanted to die. The pain was so horrible, I could barely walk, and they expected me to live like that? I had to go to the state research hospital to find a surgeon who could help me, but I'm so glad I did it.

    We have another member here, Bob in the Forest, who has had a massive fusion done. From his S1, including bolts going out into his hips and all the way up to the bottom few vertebra in his thoracic spine. I am amazed at all he manages to accomplish. He lives out in the forest and takes care of a lot of animals while doing lots of yard work.

    So, basically what I'm saying is, it's not going to be fun, but I think you can manage to get through it and you'll probably be better off than you are now. Just don't expect immediate relief, because it's going to take a long, long time to recover.

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
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