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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
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13

Comments

  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,742
    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.
    Jim
    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
    kelli
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  • 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

    kelli
  • 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, pseudo arthrosis suspected 2017, diagnosed  2019.  Revision C6/C7 pending. Multiple ruptured discs lumbar, l2-s1.
  • 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!
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  • 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


    Hugs

    Kelli
  • The user and all related content has been deleted.
    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: 963
    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


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