Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

scared for future of my spine:(

kamgramkkamgram Posts: 483
edited 07/15/2012 - 9:06 AM in Chronic Pain
I am new to forum and am so glad I found. I want to start with my first experience with back pain. In 1994 I had a lamenectomy at L5-6 when I was 29. In the years since I have had numerous surgeries (10) but only 4 on back. I had numerous epidural blocks and steroid injections along with PT and even a chiropractor one time...never again. Then in Oct. 2008 had a repeat on same disk and Dec. 2008 had a reherniation and another surgery. Then about 8 months ago I started having mid back pain and in Feb. I started having chest pain and went through a complete workup: stress test and heart cath which were normal but while lying completely still with head at 30 degree angle after cath. my mid back was hurting so bad I was crying. I continued to worsen so my primary doc(who I also work for) took x-ray and sent me to my neurosurgeon. He ordered an MRI which showed herniation at T7-8 and a CT showed calcification. With that and all the issues from very top to very bottom of spine my surgeon would not touch me and sent me to Duke University spine clinic. After he explained that he was one of the only surgeons in NC who does surgery on thoracic spine and that they only send to him if there is spinal stenosis we set a date for surgery, May 24. I have never had such a hard time recuperating from any surgery as much as this one. The pain is constant in back and wraps around the left side of chest and abdomen but now on top of that pain I have developed all this nerve pain which makes my legs hurt constantly. He said this is normal as they cut through muscle and nerve. They also discovered that a tendon had wrapped itself around my spine and had to be moved in order to even do the surgery. I have recently started Gabapentin in addition to my pain medication and muscle relaxers and nothing stops the pain. I am at my wits end. I am 48 yrs. old and have a 2 yr. old grandson that I cant keep up with or even pick up and hug. It breaks my heart. I am so scared to think if my back is this bad now, what will it be like in 20 yrs:( I have one older brother who is completely disabled with DDD since he was in early 50's and is homebound. My other brother had severe cervical DDD and had a donor bone implantation, so it is hereditary. I just dont know where to turn. I go back to surgeon July 18 for recheck but dont even know if or when I will be able to return to work as a medical assistant. I just wonder if there is anyone else out there who has experienced numerous complications and side effects after thoracic spine surgery. I went for another MRI and bloodwork July 13 and will go over them when I go back to see sugeon.

I am only 48 yrs. old and am scared to see what the future holds for my spine:( Three brothers disabled now and feel like I am well on my way:( it is so disheartening to realize there is just so much you can do and the rest is just process of aging....

Thanks so much for listening or reading...lol

Love and Hugs kelli


  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    There are many of us here with stories similar to yours. So you are not alone out there. It really hurts having grand children that you can't even pick up! My problems have all been lumbar. All the way up to T,12.
    Good luck with your MRI.
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • Thanks so much jhowie for the warm welcome. I think that is why I am so scared is because this thoracic pain is new to me. I have had 3 lumbar surgeries on L4-5. The MRI from Feb. showed moderate to advanced DDD of L4-5 and L5-S1. I also have left foraminal annulat tear and mild narrowing of left neural foramen at L2-3 and another central annular tear indenting the ventral thecal sac in the midline at L3-4 and small disc bulge and moderate bilateral facet hypertrophy at L5=S1. I am so used to pain in lumbar but this thoracic pain added to it has been horrible

    Thanks for the encouragement and I will let you know how my appt. goes on Wed. July 18.

    Love and hugs
  • I went to the NS yesterday and after a 3 and 1/2 hr. wait to see him only spent 10 minutes with him and 25 with the NP. She talked to me when I was frustrated and crying. He said he couldn't be sure that there was not a fracture and thought it was from drilling during surgery and CT would show but would have to heal on its own. He does not want me doing PT because of the issues with my back and he does not want me working so am out til further notice. I had pockets of fluid but sed rate and CRP were really high and WBC was normal so he feels like it is inflammation and not infection. I don't feel like I got anywhere with visit and am still having so much pain which now includes sciatica in right leg. He wrote me an RX for steroid injections for lumbar and thoracic. Last thoracic injection was beginning of May and could not enterwhere needed T7-T8 and had to go one below so did not help and I almost passed out during procedure from pain. I have had numerous injections and never had pain like this time and makes me hesitant to go back for another.

    We left home at 9am and did not return until 10pm which included 4 hours at the clinic and 3 1/2 hour drive down there and back. I am in so much pain today from all the sitting in a car and hard chairs that I haven't been able to do anything today. I have to talk to my supervisor about being out until further notice. I don't think I will have a job for long:( I am trying to be positive but is really getting hard when I am faced with chronic pain and losing a job that I love. Thanks so much for being here for me to vent. I am so glad I found this forum and all of you. It is nice to know I am not alone.

    Love and hugs

  • Saying a prayer that you get some relief soon. I hate having to wait at Dr or NS office but they are trying to fit in as many patients as possible. I have cervical and lumbar issues, no thoracic, can't imagine that on top of all other. I also come from a family of back issues. My father had a 4 level lumbar fusion over 30 years ago, talk about archaic techniques, his lower back is "wired" together, still has pain issues and has had cervical surgeries. I've had one laminectomy and facing 3 level cervical fusion.
    If you go for your steroid injections make sure they know what happened last time, maybe they can sedate you a bit first. Take it one day at a time and let your body heal.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • After experiencing a nightmare of a procedure while having a lumbar epidural injection, and then reading about the dangers that accompany them, I will never have one again! I feel for you. Research everything you can before agreeing to it. Don't be afraid to ask anything and don't believe any doc who says to you, "Oh I've never had anyone have any complications after an epidural injection."

    God be with you!
  • Thank you davrunner and sugarplums for the encouragement. Sugarplum I know exactly how you feel about the injections. I work in a doctors office and had a friend who crashed during a lumbar injection and had to have CPR to save her life. I was mortified because I never knew that could be the outcome of injection:( I now hear the horror stories as well as the praises for injections and am more confused than ever:( I am going to have to do some soul searching on this before I agree to have another one. I hope you and davrunner are well and can PM me anytime to talk...I am always on here...lol


  • as jim says there are many here with similar stories myself included .i too am in my mid 40s {46} and i have had 3 operations on my spine the last being a major ALIF reconstruction and i am still in a very long recovery .life is very hard work and i also wonder whats in store .all i can say is you are amongst friends here and even though between us all we have thousand of hours of suffering and many of us are very knowledgeable about our conditions... unfortunately many of us are still in pain despite the surgeons best efforts to help us ..i have found this operation very difficult to come to terms with or the results of the operation as i thought that i would be better by now ...but what constitutes better??.i have just had my 6 months assessment and was told that i am doing well !!! much to my astonishment...!!!!!!{ i was told that the pain and other problems are part of the recovery process...} take care
    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
  • haThank you Tony for you encouragement. I have read your posts and I always feel bad because here I am whining and your problems are much worse than mine. I know that feeling of astonishment at what the doctor said. I know they see so backs that are much worse and I guess they have heard it all but please don't tell me that I am doing very good when I know the amount of pain I am in and I don't feel fine. Even worse is when they say they have done everything they can and it will be a wait and see game whether pain will improve:(

    I have struggled with back pain for 28 yrs, since age 20. I know that I should have taken better care of myself after first surgery in 1994. I worked for 10 yrs. as a CNA in a nursing home and would come home crying from the pain. Then went back to school so I could work a job where I would not be lifting. I now work in doctor office where I sit alot for my job...phones, computer work etc. Now I am not able to do that. I can't sit more than 10-15 minutes without pain. I am restricted on what I can do because of pain meds, Not allowed to give vaccinations, assist with minor surgeries. I am 100 pounds overweight due to no exercise, depression and emotional eating. I am just a mess right now:)

    I am considering going on disability at this time. Not sure if I will be able to stay at home all the time though. I keep telling myself that things could be much worse and there are so many in much worse situations than me but some days just feel so defeated and useless.

    Thank you so much for letting me vent. It does make me feel better to get it out especially to someone who understands. I hope you are well and that you continue to heal and that your pain decreases. It was very kind of you to take the time to talk to me:)

    Hugs, kelli
  • I'm going to file for disability, too. At this point, I cannot get a job that could accommodate me having to need to lay down flat at random moments of the day due to the back pain or being unable to sit or stand or walk for more than 10-15 mins at a time... Who would hire me? What kind of job fits that description?? One of my old ortho docs said she wouldn't fill out papers for workers comp that said I couldn't work at all. I've been a nurse for 20 years... She said, "Well, you could put pencil erasers on pencils! That's a job! Find something!" So bizarre and uncaring. Like even at a pencil factory they would let me shut down the factory line so I could lay flat for 15 minutes for my back spasms to die down!?

    I'm hoping that once I get disability I will feel better about being able to contribute at least something financially to the family. I'm also looking Ti find something legit I can do online from home on my "good" days.

    I try to find hope in knowing they are doing great research every day for spine injuries and one day will have a cure for us!!! :)

    ((((HUGS TO YOU))))
  • JohnJJohn Posts: 964
    edited 07/25/2012 - 3:48 AM
    As Tony, said many here are willing and able to help, the key perhaps is not to look into the future too much that is easier said than done and anything other that a hereditary condition is only supposition that you yourself will be the same.

    You may never be as you were or wished to be in the future and that in itself is not easy living day to day is not something that most individuals have consideration of or the need to think in this perspective and it is unfortunate for anyone living this constant life experience.

    We all differ and my experience will not be that same as yours and I would not use that as a template for anyone, we are all individuals and go into these situation with separate conditions.

    Good luck and live for the now try not to make everything a drama where possible and do everything to manage and learn about your condition.

    Good luck and take care. John UK

  • 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 straight...lol

    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.

  • 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
  • dilaurodilauro ConnecticutPosts: 9,865
    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
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • 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 sched
  • 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: 77
    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?
  • kamgramkkamgram Posts: 483
    edited 08/02/2012 - 4:29 PM
    First skc2432, I would like to welcome you to the forum. There are so many people here who encourage me daily. There is always someone on here to talk to so welcome. Next, have you started a new to forum post. It would be really helpful, so people can go back for info. I can not believe all the problems you have had with your surgeries. Mine pale in comparison. I am truly sorry you are going through all this pain due to a botched surgery:( There are others who may have experienced some of what you are dealing with. I will pray for strength and for you not to let this get you down. I find that the mental part is so much more difficult for me to deal with and then add pain on top is torture. I hope you find answers and if you would like to just talk please don't hesitate to PM me...

  • kamgramkkamgram Posts: 483
    edited 08/02/2012 - 4:38 PM
    I posted or thought I did...a response to your post. I am sorry and did not mean to leave you out. How did the ESI work for you? Did you get some relief? I hope so!! I am truly sorry about your marriage. I have been married 28 yrs. and can truly say this has been a very hard time for us as a couple. I took care of him when he had his heart surgery last yr. and would gladly do again if needed. I know it is harder on men to be the caregivers but I truly believe in marriage vow about taking care of each other in sickness and health. Unfortunately I guess there are people out there who are not strong enough or are just plain selfish. I beleive what goes around comes around. He may wind up alone and not have someone to take care of him;( I am sorry for all the pain you have been having and can totally understand worrying about your kids My 21 yr. old son has severe sciatica at times and takes anti inflammatory daily:( I try to tell him to start now taking care of his back because he sees the result of not doing that. I hope you are doing better and please let me know how the ESI worked for you

  • I posted or thought I did...a response to your post. I am sorry and did not mean to leave you out. How did the ESI work for you? Did you get some relief? I hope so!! I am truly sorry about your marriage. I have been married 28 yrs. and can truly say this has been a very hard time for us as a couple. I took care of him when he had his heart surgery last yr. and would gladly do again if needed. I know it is harder on men to be the caregivers but I truly believe in marriage vow about taking care of each other in sickness and health. Unfortunately I guess there are people out there who are not strong enough or are just plain selfish. I beleive what goes around comes around. He may wind up alone and not have someone to take care of him;( I am sorry for all the pain you have been having and can totally understand worrying about your kids My 21 yr. old son has severe sciatica at times and takes anti inflammatory daily:( I try to tell him to start now taking care of his back because he sees the result of not doing that. I hope you are doing better and please let me know how the ESI worked for you

  • Hi sugarplums, my issues have also been sporadic and I went to see my NS and he did seem to be concerned with all the issues I have been having: the numbess in hands when trying to sleep, the bowel and bladder issues and also the worsening pain in thoracic spine since surgery. He is sending me for MRIs on all 3 sections of back. My insurance will not allow all at once plus he said that is a long time to be in machine with back problems and he didn't recommend that anyway. I will let you know when I get results and go over them with him. I hope your symptoms don't worsen. Talk to you later:)

This discussion has been closed.
Sign In or Register to comment.