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Please Help!!! Spondylolisthesis Fourth Spinal Surgery L4-S1

BabyredBBabyred Posts: 3
edited 06/07/2013 - 10:19 AM in Back Surgery and Neck Surgery
Hello everyone! I have never before joined a forum or did anything like this but I am unsure on what decision I need to make concerning my spine health, so any help will be greatly appreciated. A little back story. I was diagnosed with grade 3 Spondylolisthesis when I was younger. I always had chronic low pain and was never able to stand up straight. The doctors believe I developed this condition because of my abnormal anatomy of my lumbar spine which is C-shaped. At the age of 15, I underwent my first fusion. Where they took bone graft from my hip and molded it around my L5-S1 like Play-Dough. Apparently it did not fuse at all and was still spongy with bits of it roaming around. So at the age of 17 they decided to try it again. I had less pain but still could not stand up straight. Gradually through out the years the pain increased as well as my disks completely disappearing until they were gone. So around 22 I decided to try alternative methods to treat and help with the pain to try to avoid surgery. Finally after many failed attempts at nerve block shots and many other crazy things, the physician treating me told me I needed to see a surgeon. I got many different opinions and decided that the neurosurgeon that specializes in my condition as well as teaches it would be my best choice. My main goal for this in the end was to not have to take any medication and be able to carry a baby. I can live with moderate pain, I'm a tough cookie, lol. So at age 27 I underwent my 3rd surgery on Dec. 7, 2012. This surgery would require hardware pulling my L5 back into place and caging in the disk space between L5 and S1 with bone graft. The hardware would also be extended to L4 to insure stableness. Surgery of course sucked but I was doing well. But unfortunately, I live in the wonderful Cleveland weather and on January 3rd, I slipped in the snow and fell on my tail bone. I got up right away and thought I was ok, unless it was the pain meds tricking me. But the next couple days were horrific. The caging slipped out from the fall. I could not even stand or put any pressure on my right leg without it feeling like there was a burning rod in the middle of my leg. The sciatic pain went from my right butt cheek all the way thru my foot causing all my leg muscles to spasm uncontrollably. Pretty much a full leg charlie horse. So I called the doctor and they told me to go to the emergency room right away and he did another emergency surgery. He tried to put a bigger cage in to ensure it wouldn't fall out, but the caging was too big and he just used the same one. Waking up and recovering this time was worse. I still woke up with the pain in my leg because my nerve was so inflamed. So now heres where I need help. That last surgery was Jan 4th and its now June. I have been doing physical therapy this whole time but I still get that inflamed pain in my right butt cheek. Luckily it doesn't go pass the middle of my thigh now. I just had one of my follow ups. I get a follow up every 6 weeks since the surgery. They do a couple x-rays and upon my first follow up after the surgery they noticed the caging slipped slightly but has stayed in the same spot since. My surgeon says this could be because of my abnormal anatomy that is not allowing my vertebra to compress the caging properly. So anyway, yesterday was a follow up with him and we discussed that I feel like my spine locks, I feel like sometimes my pelvis feels like its pushed out (like I'm walking like Steve Erkel, like everyone meets my pelvis first, lol) thats what it feels like but when I look in the mirror, I'm standing straight. We also discussed the sciatic pain. I guess the amount of slippage of the cage is still irritating my nerve. I never had sciatic pain before the surgery before Dec. 7th. The dilemma is the doctor wants to try again with the caging. My options at this point are instead of laproscopic, he would open me up from my childhood incision (12 in scar down the lower center part of my spine, kinda mid-back down to my butt crack) and attempt to push the caging back in that way. Or go thru the front, which would be difficult for him because of my anatomy. Or do nothing and stay the way that I am. The difficulty is that if I do nothing my nerve can be permanently damaged and I would have to take meds the rest of my life, don't want to do. And if the fusion hardens and I get worse, it would be hard to get the caging out of the fusion. I am just so incredibly torn. I just got engaged and all I want is to get married and have tons of kids and I cant have kids on pain meds or any meds, I won't do that. But this is a 3rd surgery in 6 months, isn't this extremely dangerous? I asked my doctor if this was his wife or daughter, what would he do? I may have insulted him asking that but I needed to know. He told me that he couldn't live with not trying every option and wondering if he would have done the surgery would it have helped. After that he did tell me that they expected some slippage and when they finished the surgery and they turned me over they did an MRI and it already slipped just then. So if my anatomy is not susceptible to this caging then why wasn't this addressed before Dec. 7th? I just don't know what to do. I am in worse condition now then before the surgery on Dec. 7th. I just want my life back. I wish I never had this surgery now and just dealt with the pain. This surgeon insured me that I would be in less pain and everything is worse now. Please help me I don't know what to do and its tearing me apart. Thanks so much!!


  • 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
    Tips for Newcomers
    Understanding the rules

    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
  • Please someone!! I know I wrote a lot but this is very important to me as your situation is to you. Please any feed back that will help with my decision is greatly appreciated. After all, isn't that what these forums are here for? Please I'm desperate!!
  • I'm so sorry you're going through this :( I have no idea what you should do though. If it were me, I think I would look at who the top drs and spine clinics in the country are and see them for advice. I know you got numerous opinions before surgery, but what about after? Sometimes someone else will have a different idea or approach.
    L5-S1 fused in 1984 no hardware for a 1.4 cm grade 2 slip - fusion FAILED
    6-20-13 fused L4-L5-S1 with hardware
  • BabyredBBabyred Posts: 3
    edited 06/08/2013 - 4:40 AM
    Thank you for responding. I am in the process of getting a second and a couple other opinions. I guess I used this forum wrong. Maybe I should have asked if anyone else has had trouble with the caging slipping. I'm not sure like I said I never did this before but thanks for your feedback it's greatly appreciated.
  • AllMetalAAllMetal Posts: 1,189
    edited 06/08/2013 - 8:11 AM
    Sounds like you too have some complex spinal issues... I had a childhood fusion with a wound from about an inch below my neck down to my crack... as you can see from my picture I have lots of issues as well. I have had 5 surgeries (4 of which were spinal) within 8 months... I don't think that is "extremely dangerous"... What makes you concerned about that? The anesthesia? If so, you need to request that you meet with the anesthesia doctor before surgery and discus these concerns. I had babies before my major revisions, and it was very difficult... Even with all the hardware issues I haven now, its possible for me to have another child if I choose too, though it would require additional (minor) spine surgeries. Please feel free to PM me any specific questions/concerns you have. Sorry you are having to go through this.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • jellyhalljjellyhall Posts: 4,373
    edited 06/08/2013 - 12:18 PM

    I am so sorry that you are in this situation.
    It sounds like your spine problems are quite complicated.
    I definately think it is a good idea to get more opinions.
    I suggest you go with a list of questions to ask as it is very easy to forget all the things you want to find out about.

    Please don't give up hope of finding a solution. Hopefully there will be a surgeon who will be able to stabilise your spine and enable you to get on with your life.
    Do ask any other questions that you may have. Remember that we are all only patients like you we can only share our experiences with you and support you through this.
    Good luck and please do come back and let us know how you get on. :-)

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