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Multi level spine fusion need Help please!!

Hello everyone! Please read my message and if anyone has input or advice I greatly appreciate it! I will try my best to summarize this quickly without writing a novel. I am 28 years old who was Diagnosed at age 12 with scoli. At age 20 I was diagnosed with lupus anticoagulant and antiphosphidlipid lipid antibody. Age 24 i tore both labrums in hips and had a bilateral labrum repair at 27, doctor said I was to young for total hip replacement. Now I have rehumatoid arthritis and my rehumie is trying to diagnose me with either ehlers danlos, Marfan syndrome due to my hypermobility that most likely caused my torn labrums because I'm not athletic. In June I had a mutli level spine fusion on T12 to L4 with instumentation to fix my scoli as it progressed to a 46 degree curve from 35 in less than 2 years. I'm still really really struggling with sharp constant pain in my my back after fusion at 6 months post op. I haven't had a CT or MRI yet but I don't know what's going on because it hurts badly. I did take Anti inflammatories before my 6 months because with constant horrible pain I didn't have much of an option with a 3 year old. My surgeon is anti pain pills so he dropped me to 5/325 a few months ago which really don't help. I did a year of PT. With little help but not much. Since my hips still hurt after labrum surgery it's hard to walk which I hear is the best thing for a fused spine. Can most of my pain be coming from muscle pain? I know muscle pain is dull achy but this is sharp and constant with little to no relief. I don't know what to do anymore. Anyone with hypermobility syndrome? Lupus or RA that had spine fusion that had good outcome?? I guess I just need to vent to as I'm sick of this pain at only 28 years old. No one understands except the certain few around me that have chronic diseases. It's frustrating that doctors don't understand the pain and want to just ship you off to the next doctor as well.
Any input would be great. 6 months post op? Normal for this much pain or something else?
Thanks all!
28 F. Chicago. Fusion from t-12 l-4 from scoli in June 2013. Torn bilateral hip labrums. Arthroscopy to fix labrums January 2013 and march 2013. SI pain from hip surgery Lupus, RA, antiphosphidlipid antibody- hypermobility syndrome ( Marfan syndrome)


  • LizLiz Posts: 7,832
    Please take the time to read this post and refer to it when you have questions

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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • and WOW you do have a list of very unpleasant conditions .some I know well and some I have no idea of ..I close friend has RA and I have seen her go through hell with it {she has had 3 strokes with it too] I know about lupus only through reading about it and marfans runs in my family .the worry with that particular health issue is cardiovascular .many end up with heart problems .you back problems would seem to be the least of your conditions I supposed you are under a multi disciplinary team at the hospital ? if not ..why not ?? .as for pain that needs to be kept in check as it can drive people to do very dark things ..if your consultant is not giving you sufficient pain relief ...then I suggest that you find a compassionate doctor that will .you have a complex medical history probable one of the most complex on this site .all I can advise you on is back pain and my advise would be to see another doctor ..as for your other conditions there are sites on the web that specials in them .maybe you would be better served looking elsewhere for answers/advise in relation to your other health issues ..but I am sure if there are any members on here with medical issues similar to yours then they will contact you .wish you the best from the good old
    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
  • Tony, thank you for your reply! This is my first time on here and I appreciate your kin words and well wishes! It looks like you too have been through the ringer and I hope and pray for you too. My doctor is really a wonderful man and I think as far as pain pills go he feels like they are a black hole. Which from my experice with them, they are. It's just when you deal with pain and if something like a pain pill can help you get through your day it's worth it. I do need to find a new reuhmatoid doctor because after 12 years he is just now having a light bulb go off. I'm able to bend my fingers in all weird ways. I don't have some of the things that Marfan syndrome would intale like flat feet or a messed up palate. Ehlers danlos syndrome is pretty much the same as marfan with some differences from what I read. When things would pop on me I just thought it was normal. Like my hips or shoulders. I could dislocate my fingers and pop them right back in. So anyways though I was just wondering after spine fusion at 6 months is pain still really a big problem? I know everyone is different. I'm also now on an anti depressant because the pain was just maki me so depressed. But that's only helping me mentally get through the day. The pain is still there and very real. Unlike what some people think, like it can be controlled. And if you think u don't have pain u won't. Well I've tried that too ! Haha.
    Take care tony!
    Prayers and best wishes for you.
    Thanks for listening.
    28 F. Chicago. Fusion from t-12 l-4 from scoli in June 2013. Torn bilateral hip labrums. Arthroscopy to fix labrums January 2013 and march 2013. SI pain from hip surgery Lupus, RA, antiphosphidlipid antibody- hypermobility syndrome ( Marfan syndrome)
  • I wish I could offer more help. But I will keep you in my thoughts and prayers. It seems that 6 months post op you should not be having so much pain. I know my surgeon told me that back surgery is only 50% effective for pain. They mostly do it to prevent more damage and to relieve leg pain and numbness. Have you talked to your surgeon about your pain being completely honest on how it affects your life. Even if he's not a big fan of pain medicine there are a lot of options other than narcotics. I know being in pain at such a young age can be very frustrating and isolating. I hope you find some much needed relief. The great thing about being a part of the spiney family is that you are not alone. So if you need to vent there is always someone here that can relate.
    Best Wishes, Summi
    Acdf C5 C6 12/13/12
    Laminectomy and Discectomy L5 S1 12/12/13
  • I know exactly what you mean about finding people who understand. I too have tried the" if you think you feel good you will" approach and it worked for a couple of days but I think I over did it and am suffering now.
    I don't nealy have the history you do so I can only imagine what you are going through. Especially with having a young child. My kids are 16 and 15 (in January ) and I'm losing out on so much of their lives because of my inability to do things with them.
    I wish you luck finding another Dr. It gets so frustrating telling different professionals the same thing over and over again. I wish they all had the same questioner's so you could photo copy it instead of writing your history over and over again.
    Please keep us posted. It's nice to have this page and have people who "do" understand.
    Herniation of l5 S1 l4 , DDD , microdisectomy in June 2013 and re herniation in September
    Cervical herniation at C5-7 Jan 2014 with impingement of spinal cord. 2 level cervical fusion Feb. 2014 and 2 level lumbar fusion in April 2014
  • Hi Dani...I deal with constant pain 24-7. It affects my life in the things I can and can't do and most importantly it affects who I am as a human. My neurosurgeon sent me over to his recommended pain management doc who is heaven sent. He told me pain was physical, emotional and spiritual. Boy was he correct. He put me on a low dose OxyContin and dilaudid. Those two together work perfect for me. I am easily able to function as a dad around the house now, as before I was in too much pain to be able to get it off my mind. Now I can think clear and be the guy I was before all this. Good luck ands the right pain management doc makes it night and day...
    -Ti man

    C5-C6 Fused, Syrinx from C4-C7, Bilateral SI joints are fused from car accident using iFuse by SI Bone
  • SpineAZSpineAZ WiscPosts: 1,084
    My multiple spine (cervical & lumbar) as well as hand and knee surgeries (including TKR at 45 in 2011) are all due to Hypermobility problems. My ligaments and tendons are so lax that they just have way. I've been told I could have a minor version of EDS but no one knows for sure. On 11/21 I had the base of my right thumb fused and then 12/12 I had C4 fused via ACDF to my existing C5-C7 fusion. Pain management has been kept for me, a mix of opioid meds (long acting & break thru) along with a strong muscle relaxant when I'm able (can't take while neck & thumb fusion recoveries are ongoing)
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • @spineAZ. Thanks for that input as well. Interesting enough I saw my spine doctor today and told him what's going on and he said I probably have a mild form of EDS. He said mild because people who have it bad have it bad. So, I go next Friday for a CT scan to see if very thing is fused and if my only 2 levels left on the bottom in his words are my friends or my enemies. He said basically since I have a plethara of other issues I have to just chip away one thing at a time. I never thought that hypermobiity could be an issue until recently. I always thought I was just weird and flexible. And when things poped out of place I thought that was normal and everyone has that problem. Shows how ignorant I am.
    28 F. Chicago. Fusion from t-12 l-4 from scoli in June 2013. Torn bilateral hip labrums. Arthroscopy to fix labrums January 2013 and march 2013. SI pain from hip surgery Lupus, RA, antiphosphidlipid antibody- hypermobility syndrome ( Marfan syndrome)
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