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scared for future of my spine:(



  • Kelli,
    It sure does suck not to be able to find out what is wrong for sure with your spine. It is also disgusting to have to deal with so much pain. Mine started 9 years ago when I was 52. It progressively got worse even after having 5 surgeries and numerous injections. I stopped having injections after swelling up so badly after one, plus they usually didn't help at all or not much for what you have to go through to get one. I will keep you in my prayers too. Keep us posted on what you find out. This is a great group of people to be able to talk, whine, cry to or to help you with any questions.
  • I have received so much encouragement and kind words on this forum. I would be honored to call any of you friends;) John, you are right. I should focus more on taking care of myself now and not worry so much about the future. Unfortunately heredity does play a very large part in my problems. I have 3 brothers disabled ages 61, 57, 44 with severe spine issues and a sister now battling cervical spine issues. But you know you are right, I just have to concentrate on the things I can control now. Even though I can't exercise at this time I could cut back on meals to help lose some weight and have been working on this the past few weeks and have lost 18 lbs:) So thank you for setting me

    Jayciejc thank you for your kind words and most of all for the prayers. My walk with God has had its stumbles lately but mostly due to me feeling worry for myself and not being patient enough to wait on Him even though he has answered prayers directly for me recently. My primary whom I also work for found out that I received termination letter after not returning after 6 wk. leave and went to the powers that be at work and made sure they knew that she had waited in past (4 1/2 mo.) and she would wait again and did not want to start over with new assistant so my job is safe if I can return. She also gifted me with a yr. membership to our local gym so I could use the pool for therapy. I had been praying about this for months and had never mentioned a word to her but she saide God did( Amen). I will also pray for you and hope things work out for you and you are able to find the right combination to control your pain.

    Sugarplums, I hope that you are doing well with your quest for disability. I spoke with my brothers lawyer and wow, the hoops you have to jump through but just keep at it and don't give up. I have seen people who dont need to be on disability who work and are paid under the table all the time. They are the reason we who need help have such a hard time:( Thanks for you kind and encouraging words:)

    Thanks to all here who have supported me and given advice and cared enough to even talk to me. This is an awesome place and I feel safe with yall. I will let you know how my ESI goes which is scheduled for Aug. 9th.

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  • Am truly sorry about your pain and what you and your broyhers are going thru. My problems are lumbar and have had 3 surgeries inckuding pain pump surgery L4-S1. Just blew L3-4 disc and having ESI today. Also have nerve damage & scar tissue growing on nerve root which is inoperable. I have a scar tissue lump on L4-5 area from prior tlif on L4-S1. Anyway I'm scared of passing this down to kids, one has.mild scoliosis & other has high ANA & back pain flares at age 15. Their dad has bad back tho not as severe as mine. I am only 38 and afraid of being in a wheelchair homebound and alone since husband of 20 yrs left me & says I am crippled and burdened him. Anyway my thoughts/prayers are with you. Pm anytime. Hugs Meydey
  • dilauroddilauro ConnecticutPosts: 12,519
    Your post is so similar to hundreds of other member introduction posts. That is you are hurting, in a whirl dealing with doctors, treatments, and pain.

    The members on this site understand your situation and we are here to try to help you through various situations. We can't eliminate any of your pain or offer a magic pill to make things go away. Instead, we are here to listen and have two discussions that hopefully can help.

    Surgery, any spinal surgery is a real tough decision. Not to have it, what are the negatives associated with that? Have the surgery and what are the future impacts? No two people are alike, no two surgeons perform the same, so the answers to those questions may be difficult to obtain.

    I have had a number of lumbar and cervical surgeries, throw in complete shoulder joint and hip replacements. I also deal with a number of herniated thoracic discs. That is always present, but for me, surgery on the thoracic area is out of the question. When I first had the problem, the surgery was pretty barbaric, and that was not that long ago. They have mad
    many strides in improving thoracic surgery.

    Welcome aboard, I hope you find some comfort in talking with the members here
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  • Many would give up and on you and get a replacement as soon as they could. There are some great aquatic exercises that can be done that ease the strain on the back, hope you can do them, what a gift from your boss. Congrats on the weight loss, praying you have continued success and that the drop in weight will ease your pain.
    I have friends who are on disability and it took them 3 years, with legal help. It's not an easy process.
    I am continuing to work as long as I can. Will have a revision surgery on my knee replacement in Oct/Nov and then when I recover from that go for the 3 level fusion (cervical). Hoping to be able to work when all is said and done.
    Let us know how you are doing, remeber we are never alone in this journey called life.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014, pseudo arthrosis suspected 2017, diagnosed  2019.  Revision C6/C7 pending. Multiple ruptured discs lumbar, l2-s1.
  • Thank you Dilauro for your kind welcome. I have kept up with your posts and would love to have a poster made of "The letter to Normals". It was awesome and so true. It made me cry with both frustration at the words I have heard so many times and cry with joy that someone actually understands and gets it!!!! I have received so much encouragement from everyone and hope I may encourage someone along our journey. Davrunner, yes my boss is an angel. I spent 45 minutes on the phone with her this evening just talking:) I have gone back and forth with whether to apply for disability or not but have to be able to bring income in to help my family and if I can't work then need to start process as soon as possible.

    Okay now to the new symptoms, and I hope this is not TMI and if so I am truly sorry but scared and need feedback. I have noticed that in the past few weeks that I would go to the bathroom and not feel the need to have bowel movement and not feel any urgency but would have one. I also have had the same issues with bladder. Today I had an accident with my bowels and didn't even know until too late. I called my surgeon and spoke with the NP and she said that this could turn into something serious very easily and I needed to be seen asap. She suggested that I call my local NS and make an appt. They told me that his protocol is whoever did surgery must see me for complications but NS who did surgery doesnt think this is related to thoracic but the lumbar as I have been having severe sciatica in right leg. So now they are both saying that the other needs to see me. The scheduler with the local NS said she would talk to him on Monday after he gets back from vacation and see if he will see me and possibly order MRI. I was so upset, crying on phone that I just needed to make sure I was okay. They never said what they thought it might be but said if symptoms worsen or start having numbness in legs go straight to the ER. I finally called my primary and she mentioned cauda equina syndrome and then I did get upset.

    So this is the new chapter in my journey of chronic pain and I am not happy about it but realize I can't control it and just roll with it (per my phychologist). I would like to hear from anyone who has experienced these symptoms.

  • Kelli,
    That weight loss is fantastic, build on that success, as Ron said we are here to help and pass on that knowledge and understanding that you too will pass to others and help them. Our future is in front of us and we need as best we can embrace change and adapt to our new normal, never ever stop trying and be kind to yourself.

    Take care. John
  • SugarplumsSSugarplums Posts: 75
    edited 08/02/2012 - 5:50 AM

    Sometimes I have those bowel and bladder issues also! I tol my doc that it is sporadic, and he wasn't worried. I thought it was weird he wasn't worried because of what I have read about the cauda equina syndrome, but he said it would be constant numbness from one inner thigh up and down to the opposite thigh and it wouldn't be sporadic.

    I'm not sure what to think about that, because so much with spine issues is sporadic, such as sciatica, so why wouldn't this be sporadic also?? Is your sporadic or constant?
  • I feel for you. I'm also scared of what has happen to me. I don't have any quick answer but here is my story:

    Has anyone heard of getting scoliosis after spinal fusion T-11 to S-1? I DID! I have had 7 back surgeries 5 in a 10 month spand. I had a dr. fuse me from L- 2 to s-1. He took out my curve of the lumbar which I developed flat back. I went to a spinal specilistes who told me that I had flat back. He advised for me to have another surgery to put the curve back in my lumbar. He then fused me from T-11 to s-1. 3 weeks later I went to get my staples out the dr told me I had developed scoliosis. He said my spine had shifted from T-3 to T-12. I then had to go back into surgery to be fused from T-3 to S-1. I have 28 screws, rods and a cage. When he opened me up he found out that I had developed a stap infection in my T-11 T-12. This had happen from my December surgery 2010. I'm still on antibocs and was told that I will be on them for the rest of my life. I'm on doxycyline and rifampin which is a very strong medication. I have a chance to develope livrer problems. This all started out with my first surgery of 2 slipped disc of L-4 L-5 in 1997. I never ever thought that having a fusion would cause all of this. I blame the first surgen who performed my first 4 surgeries.

    Would someone tell me what they think about all this?
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