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New here, freaking out.

I've been lurking for awhile, reading many of the threads on here, many of the articles on spine-health (no need for the generic welcome, I've already read every link on it :) and then some), and anything I can get my hands on. I've seen one doctor that has suggested a l4/l5 ALIF for spondylolisthesis. I've done more than 16 weeks of physical therapy, and had no results from that, or 3 epidurals. I feel rotten, the pain is overwhelming, and that is coming from someone with severe joint pain since childhood. This is just too much! I'm working on selecting a doctor for a second opinion. I'm not grossed out, nor do I get the willies very often as someone who works in the medical field, but I've gotten to the point where reading about the surgery makes me sick to my stomach. I'm not usually one that gets nervous about things, I had extensive facial reconstruction after being hit by a drunk driver as a teenager. That was a walk in the park. I'm just a ball of nerves. I'm also so scared of this being the wrong choice, what if I get worse? So, that's kind of why I'm here. Support from those who are going through this, or have gone through this.
Up coming Lumbar Fusion at L4/L5

My blog: livingbendy.com


  • LizLiz Posts: 7,832
    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and continues to grow.
    Here are just some of the highlights:

    - Detailed medical libraries of Articles and Videos that address almost every Spinal Conditions and Treatment

    - The Wellness section contains articles, tips and videos to help patients after surgery and also to help people avoid surgery.

    - Under the Resource tab, there is a section Doctor Advice Health Center which can be invaluable.

    - As a bonus, Spine-Health provides these patient forums. Here is where you can meet thousands of other people who understand and can relate to your situation. You will soon become part of the Spiney family who provide comfort and the advantages of a Support System. You are now part of this family that is approximately 20,600 International members and growing daily.

    - It is very important to understand the Forum Rules to make sure all of your posts do not violate any of the rules.

    - As a new member, it is helpful to understand the 'makeup' of these forums, how to make posts, tips on adding images and much more. You should read Forum FAQ

    Here are some you should take a look at:
    Read before you post
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    All of this will help make your threads better and improve the times and quality of responses you will receive.

    If you have any questions or need assistance, you can use the Private Message facility to contact any one of the Moderators on my team:






    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • jellyhalljjellyhall Posts: 4,373
    edited 06/09/2013 - 10:41 AM
    I am someone who 'has gone through this' :-)

    I had an L4/5 PLIF done 3 years ago for Grade 2 spondylolisthesis.

    I also tried about 14 weeks of physiotherapy and over 50 chiropractic sessions but things still progressed.
    I was very scared about the prospect of having spinal surgery and felt that there was no way that I could possibly face that! I certainly know that fear of doing the wrong thing and making things worse.
    Eventually my life was getting so limited and I felt awful for my family apart from the terrible pain that I was in.
    I finally agreed to go and 'just talk' to a surgeon. He told me that I could not put off surgery any longer or I would be in so much pain that even lying down would not help it. He said I would have to be in a wheelchair and eventually I would become incontinent. That certainly helped me decide that I had to face surgery! I had my fusion about 3 weeks later.

    The relief was wonderful! The bilateral sciatica that would have me in tears was gone and the lower back pain was much improved. I wished I had decided to have the surgery earlier and not suffered so long with the pain. For me, the pain was not as bad as I had feared and the relief of being on this side of surgery felt great. I definately found that the pre-surgery anxiety was worse than the actual surgery. It is not an easy surgery to recover from, but it is doable. If you are in overwhelming pain now, you will probably do well. I was told by the nurses that I probably coped so well after surgery because I had been in such awful pain beforehand.
    I was told, and from reading it seems to be the case, that fusion surgery for spondylolisthesis tends to be very successful in dealing with the pain.

    This is a great site and I think you willl find that being able to talk to others who are going through the same sort of problems will be a great help to you.
    Do ask away if you have any more questions. :-)
    You can always send me a Personal Message if you like (Press the Send PM button).

    I hope that I have reassured you that there is hope that surgery will help. I do think that getting a second opinion is a good idea. I think that having more than one doctor give the same opinion gives confidence that it is the right thing to do.

    Good luck :-) Please do let us know how you get on.
  • Having surgery is scary. The thought of having surgery is scary. I had L4-S1 ALIF with posterior fusion and laminectomy 6 weeks ago. I have bee suffering in pain for over 3 years because of an on the job injury. Gone through therapy, injections, medications, yadda yadda. The pain was ruining my life. I too am in the medical field. A nurse.
    The surgery was almost 6 hours long. I have a 6" incision on my lower abdomen and a 6" incision in the middle of my lower back. The first two weeks post op are the worst. I am slowly improving daily. It is a long and painful recovery but I think it's all going to be worth it in the end.
    The pre op anxiety was horrible. The 4 days in the hospital was not fun. Right now I see a light at the end of my dark tunnel of pain.
    Good luck and you may PM me if you have any questions or just need to vent. This site has been wonderful and the members are so supportive. It has helped me a lot and I don't feel alone in the problems I have. :)
    injury 12/29/09. L2 henamgioma L3-S1 desiccation protrusion narrowing, L5-S1 nerve rood displaces, L4-5 annular tear DDD L5-S1. surgery 4/24/12
  • littlebluebirdllittlebluebird Posts: 29
    edited 06/09/2013 - 5:59 PM
    Thanks guys! Y'all are so sweet to respond. The first surgeon basically said and I'm not quoting him totally - that since PT hadn't worked so far, it probably wouldn't, and since the epidurals didn't work doing more wouldn't help, but they could do surgery, and it might help....but it might now. He said he would do an ALIF in my case. It didn't leave me super confident. When I asked him what he would suggest if I was family, he said - I can't tell you what to do. You can either live with the pain you have now, or have surgery, and hope that it helps. I was sort of dumb founded. I wasn't expecting such a ho-hum consult with a doctor. While I wouldn't want someone who was gun-ho "Surgery Now! There is nothing but surgery, surgery here, surgery now!" But, this guy didn't really have much of an answer. The other thing that worries me is that I don't metabolize pain medications like most people. I have had the test, I forget if it was CYP2C6 or CYP2C19. At any rate, I require a higher dose than most people to have effect. Many doctors have a problem with understanding this, as a result I've had things like having a shoulder reset with basically no pain medication. I may, or may not have yelled some brightly, colored language. So I worry about pain management post procedure. I'm kind of at my wits end with the pain I have now, it's constant. Nerve pain in the buttock, hips, and thighs. Severe pain in my lower back (kind of like what it feels like if you get a side stitch when running, x20), and a deep ache in my back, and hips. I'm pretty much done with it.

    The other thing I was wondering about, I keep having these "twitches" (for lack of a better word) in my legs. Like a quick, jerk. It doesn't happen all the time, but several times a day. All of the doctors have ignored my questions about it. I never had it before, so could it be related?

    Another, silly question...what the hec did y'all do to entertain yourselves after surgery?? I was on bed rest for about a month at one point, and came undone with boredom.

    And lastly for now... What was recovery like? I know this will vary from person to person, but what type of pain did you have (nerve, muscle, ect)? How long before you were able to drive? And when were you allowed to do things outside of walking, like swimming? Again, I know this may vary some...but, some answers will at least give me a ballpark.

    Again, thank you guys so much.

    Ah....One last small grouping of things...Swear! I read the list of helpful things to have, which was great! I live alone, how long should I expect to need someone here with me 24 hours a day? How long will I need help to the bathroom? Or someone to let the dogs out, I have three...they *will* be here with me...I couldn't imagine trying to recover without them and stay sane. Lastly, any helpful tips? I know...I'm asking a great deal huh? If this was a face to face group, I'd bring cupcakes. ugh...how long will it be before I can bake again. *sniff*
    Up coming Lumbar Fusion at L4/L5

    My blog: livingbendy.com
  • jellyhalljjellyhall Posts: 4,373
    edited 06/10/2013 - 2:39 AM
    The 'twitches' that you talk of could be nerve related.

    As for entertainment while recovering from spinal surgery, frequent short walks and just resting and doing personal care seems to fill the day at first! Then watching DVDs, reading and I wrote a short story for my granddaughter. You can't sit and do anything for very long. I was lucky to have lots of visitors come to see me, and that helped a lot. I found that the time seemed to go quickly. I was off work for 5 months but it didn't seem that long. It was a good summer and I know that helped.

    For me recovery was much easier than I had expected. I had been in severe pain before my fusion and I managed without heavy duty pain meds. I had an IV of morphine for about 6 hours, but they then took it away because I had pinpoint pupils and my speech was slurred. After that I just had paracetamol and diclophenac. The medical staff and I were amazed that I coped with that! I would get all sorts of pains in various places. I seemed to have a weak left leg for a while and really would struggle to lift it up and would use my hands to help.

    I went swimming at 4 months because we were on holiday so that was not a time that my surgeon had given me.

    My husband had two weeks off work to stay home with me. That was great! :-) I probably could have managed without him earlier as he was coming home in the evening. I managed in the bathroom showering etc without help after about a week. Having someone there for 24 hours a day will be great for the first week and then just having someone pop in a couple of times a day would probably be fine, although with the dogs you may need it more often. Be very careful that you don't fall over your dogs!

    I enjoyed the imaginary cupcakes - thanks! :-)
    The worst thing about baking will probably be the bending down to put them in and out of the oven.

    I drove at 6 weeks. I got an infection where my incision opened up so the dressing wasn't taken off until 6 weeks.

    I think getting another opinion, if that is possible, would be a good idea and will probably put your mind at rest and you will hopefully get some more answers.
  • I was very nervous about mine. I had L5-S1 spondi with nerve compromise. The choice seemed so scary as I went through two separate physio sessions last around 2 months each, Chiropractics for 6 weeks and an epidural and was beginning to fear I would have to gamble with the surgery. Due to me being 23 years old as well, it was labelled as a last resort. But I just couldn't take it anymore and wanted to get back to my heaving lifting job after suffering for 2 years and off work for 1 full year.

    I had a L5-S1 TLIF 14 weeks ago and I already know I made the right choice, I feel so much better and for the first time in years I feel optimistic that it has finally come near to the end. While I wasn't an athlete per say, I loved my sports and liked to be relatively in shape. I smoked and drank a lot, but balanced it out with sports and exercise , but all in all I was very social and enjoying my life. Even though it was only a few months ago I feel I am almost ready to start light jogging. While the recovery is slow, sometimes stressful and hard to predict sometimes, with a level head around you to tell you everything they see improve then you do realise how quick it actually is considering the damage done to your body.

    A second opinion is always helpful, I consulted my surgeon, my GP, a neighbour who had had a similar fusion and my friends and family, most were worried considering my age and it made me really think about what I had to do, I was scared, but I couldn't let that get in the way of how I wanted to live my life.

    I wish you all the best, and hope you make the decision that best suits you.
  • I had PLIF L4-S1 2 1/2 yrs ago and it has been the single best thing I've ever done for my back. After 34 years of back pain and numbness in one leg for most of those years, I had complete pain relief and have been able to get a good night's sleep for the first time in all those years--well, I've got other problems now, but they don't detract from the huge benefit I got from that surgery and I would do it again in a heartbeat. The post-op pain and recovery were nowhere near as bad as I had anticipated. The worst pain I had in the hospital was from a muscle in my thigh where there must have been something lumpy under that leg during surgery.

    The "spineys" here on the forum are great and are happy to share. What you need to keep in mind, though, is that the majority of people who are on the forum after surgery are here because they are still having pain or something didn't go as planned, etc, and they are looking for support and advice. The people like me who had a great result and easy recovery don't tend to stick around the forum very long---I'm a good example of that---went on about my life feeling so much better. Now that I'm facing surgery for new problems I'm back here looking for a little support, shared experiences and information, and to give support to others like yourself. So..........you may read a bunch of scary things here on the forum but if you can keep in mind that you may be hearing more of the negative outcomes than the positive, you can hopefully minimize your fear and make an objective decision on surgery. Not everyone does as well as I did but your description of your pain is of a magnitude that you obviously need help and you need it before you become depressed and discouraged.

    As for your problem with metabolizing pain medication, if it were me, I would take a get-in-their-face approach with the doctors you speak to about this. Don't let them brush you off or ignore you, especially if you're planning for surgery. Research your situation and ask questions, expecting answers. I have migraine and have a history of waking up from major surgery with a horrible migraine headache. Because of that I make SURE that everyone knows I may need a migraine abortive upon awakening. I may be a pain in the neck to the medical professionals, but they are not the ones experiencing the pain/nausea, I am, and I will do whatever is needed to ensure I don't have to experience a migraine along with the post-op pain.

    Whew, sorry for being long-winded but you touched a cord in me, I guess. :D

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • HaliaeNLaney714HHaliaeNLaney714 Posts: 1
    edited 07/26/2015 - 8:55 AM
    Hi all. I started reading some of the posts before surgery and I am now post op a little over 2 months. I had received 3 herniated discs in a car accident, 1 cervical, 1 thoracic, and 1 lumbar with the lumbar one hurting the most. I had tried everything from PT, chiropractic, to pain shots and the doctor said only relief would come from surgery. I asked others if they knew of anyone who had the surgery and if it worked or not and there was a 50/50 shot there. I read posts like on here and while people generally will see more of what they think they should see I did see and equal number of success and not successful one 1st try stories.

    My pain would come from standing too long, sitting too long and walking to long (about 2 blocks or so......I was an avid walker to). I would get the pain sweats out of nowhere and anyone who suffers from a great deal of pain knows these well. TG I have a job where I can sit or stand when needed and the work is NOT at all strenuous. So, after yrs of suffering and trying all else I finally decided to have surgery.
    Surgery was a little over 2 months ago and doc said he had to do 2 extra discs because top 2 were becoming like the bottom 2 were (more wiggly). Operation total of 5 hrs and 2 6 inch scars of each side of spine and each had 8 staples in it. The original pain is better and they feel more stable. I do have a lot of spasms that can entail the whole body starting in lower back and shooting down leg and back again. It is like my whole body is in a spasm. Also, if I move in certain ways like drop my one foot faster or one leg I get a pain similar to biting on a piece of foil with a filling. Dr says this is the nerves and muscles healing while they are diminishing they are still there. I did have though one whole day without anything which was nice.
    I also stopped smoking and am now 50 plus days no smoking, eat foods high in protein, calcium, and Vit D. How long at the least and the longest should I look at starting the fusion itself and most of the residual pain to disappear and be able to be doing normal things I like such as walking more than 2 blocks, shopping, going to the beach......and play with my girls who are patiently waiting for y boo boo to go away so we can have fun like we used to. I saw one post who said his whole fusion was complete at 3 months and one who said even after a yr it has not begun yet. Doc said it was best to use own bone so he did and after the 1st post op visit he said that all looked well and everything was still in place and where it was supposed to be. I did try every thing people said to do such as smoking, eating certain things so as to get premium results.
    What does e1 think? I am hoping to go back to work next week or week after.

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