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Transthoracic discectomy post op support....newbie on forum

I had two transthoracic discectomys within 4 days of each other in 2014. It is so hard to find information from others who have suffered this. I am left with what appears to be spinal cord damage and have so many questions about what is normalj after decompression and what i have to live with. There seems to be no one Dr who can explain it all. Any direction as to where would be the best place to post would be appreciated. I just want to know what others have been left with. Thanks to all that take the time to read this.
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Comments

  • itsautonomicitsautonomic LouisianaPosts: 1,952
    edited 01/09/2016 - 6:48 AM
    What levels? How did they access the thoracic disk?
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • SavageSavage United StatesPosts: 5,960
    Welcome to Spine-Health
    Please click on link for helpful information!
    Sue
    Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • Would you mind sharing a little more about your experience of surgery? I am so nervous about this but really need to have it due to the impact it is having on my life.
    I have mylopathy at t10/t11. It is a central herniation and impacts my spinal cord quite a bit. I get a load of symptoms but I have lived with it for quite a long while.
    It would be so helpful to hear other people experiences before I have the surgery

    Warm regards
  • SavageSavage United StatesPosts: 5,960
    Welcome to Spine-Health
    Please click on link for information!
    Sue
    Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • I might have already "survived" a similar experience. In Oct. 2013, I had a discectomy from T-8. The disc had spontaneously shattered, and strayed, thus compressing and damaging my spinal cord. This occurred suddenly one morning. The resulting myelopathy caused me to lose most feeling in both legs, more so in right leg. The only pain I suffered prior to surgery was a sharp nerve and muscle spasm radiating from T-8 around to my rib cage and belly. My back didn't ache, though I do recall minor back pain in previous years below shoulder blades, etc..

    Because of the spread of the disc debris on the interior side of my spine, my neurosurgeon had to perform laminectomies on T-7,8,9,10. To ensure stability of the curve of my thoracic vertebrae, and alleviate stress on remaining upper and lower columns, he performed a long-fusion, and fused T-4 thru T-11. This is very rare, and extreme. Since I was an emergency patient who had no prior back issues, I certainly was ignorant about options. I'm not sure what he or I might have done differently.

    Results? I regained much of the use of my legs, though the four separate senses of touch (crude, light, pain, proximity) are damaged or missing to varying degrees. It took me three months to graduate from walker to cane. I only use cane for balance, since my feet don't feel the ground well. I had to relearn using arms because surgery cuts through important back muscles. (performing surgery transthoracic, by going though front ribs rather than through back might have bypassed this issue.). But within weeks my arms were fine, though lifting continues to cause pain.

    Pain initially was acute, unbearable. I was on four types of pain killers for months, but I pushed myself down as far as I could. I could not roll over in bed, still have trouble with that. Surprising how much a flexible thoracic region keeps one balanced and capable. But mine is a solid mass now, 14 pins, three rods.

    I can honestly say, at four months post-surgery, I had come so far that I believed I would one day be perfectly fine, though pain was still crushing. At one year anniversary, doctor diagnosed myelopathy as permanent, I was still suffering great pain, especially at top and bottom if fusion. My husband could barely touch my back. I believed I'd be thus way forever.

    Now, I still cannot run, play tennis or even swim (tummy down be cause I cannot arch back). But my pain, though chronic, has improved tremendously. My doctor said it can take four years to heal. I didn't believe him at year one, but now I have more hope. I am on a low dose of ER morphine (insurance stopped Oxycontin, but I actually found morphine to work better for me) and Robaxin, and duloxatine. I am feeling better enough that I am trying to drop off night time dose, to see if all those articles are right about long time opiate use making pain worse.

    Anyway, Ladies, I just wanted to give you hope. I had to retire disabled from teaching because I cannot stand or sit for long periods of time, and I cannot move desks or books. (and folks don't like narcotics in classroom, right?). But overall, I see improvement all the time, and I hope to be able to work a light, part-time job to keep busy in a few years.

    Advice? Use a neurosurgeon, not an orthopedic surgeon if spinal cord is compromised. Stay as active as you can. Exercise paradoxically causes more pain in the short term, but less pain the next day. Explore options on entry points for thoracic disc surgery entry points-through ribs, or back.).

    Good luck -LK



    "Depression is living in the past; anxiety is living in the future. . .live today, one day at a time."
  • SavageSavage United StatesPosts: 5,960
    Welcome to Spine-Health
    Please click on link for helpful information!
    Sue
    Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • 10 weeks ago I had anACDF on c6/c7 , severe spinal cord compression. I also have a large central herniation at t12/l1. I am having pins and needles and burning on back around to my ribs. Also my legs have prickly feelings also that come and go. We're these some of your symptoms also? I was hoping he ACDF was going to stop my symptoms as the surgeon said we can't fix you but we can stop the progression. Does all this numbness/tingling/prickliness mean things are getting better after my surgery As its not constant or does it mean things are getting worse or this is what iam lifer with and live with it nothing will get worse? I know no one can give medical advise but what are your thoughts. I last saw surgeon December 18 he said we need to give it 3 months to settle down. It was gon fro the first weeks after surgery coming back, but also I am doing more physically like work and social engagements. Any thought or experiences?
  • I am so sorry that I have been away from the forum.  Since I posted I have switched all my doctors to Wake Forest Baptist ;.  I have been to every kind of specialist  since January so I will say what I have learned since then.  The physiatrist (dr that helps after the surgery and takes on all your care and determines what you may need in order to get the most out of life) I'm sure that is not the correct definition but I have found most people have not heard of them.  Anyway he checked my reflexes, walking, etc. and I do have myelopathy, I have spasms in my abdomen, and legs and I have incontinence.  This Friday I will have my 3rd eurodynamics test with my urologist.  Let me first say that what started changing everything was going off Vicodin.  The new pain institute I started going to changed all my pain meds and I would never have believed it but stopping my long term use of Vicodin and Soma, a lot of my issues got better and some just changed into something different, but it helped tremendously.  I know I am jumping around but so much has happened.  I have an appointment to see a neuropsychiatrist ? to talk about my "feelings" of guilt for having to do a medical retirement.  It is very hard knowing my husband has to go to work but I am home waiting on my social security hearing which so far has taken 2 years and 3 months. But he supports me and does not feel I could work at any type of job.  I finally read the surgery notes and kindof know what happened to me during and between the thoracic surgeries and I know I will not have the terminology correct but I do want to answer your questions.  First I will say that it has been 4 years since I got my C5-6, 6-7 ? fixed.  Before surgery I had the pins and needles in my left arm and numbness in a couple of fingers.  During my recovery period,, I do not remember having the pins and needles after the surgery.  Mostly it was trouble turning my head and getting my voice back to normal.  I did find out that my c spine had also compressed my spinal cord.  Sorry if I'm not much help with this area.  It fixed my problem at the time but now I am having problems with the pain and pinky numbness.  Ok for the thoracic question.  I didn't get an option to not have the surgery.  I had let the pain, which consisted of going to bed and waking up to a horrible pain to where I couldn't get up out of the bed.  I thought maybe I was laying wrong.  When the neuro saw the xray he said that my bone was pushing on the spinal cord and it had to be fixed or it would be similar to having an explosion back there and I would be paralyzed.  I saw the MRI and the horrible pain I would feel every night, I knew he was right.  :And yes I would do it again because playing with my spinal cord and hoping a bone isn't going to bust thru it is not for me. After reading the dr's notes from the surgery he feels that the two thoroocatomies (probably spelled wrong but mean they opened up my ribs twice and took some bone of the one twice) is what has caused me the most problems. Yes the surgery was the most painful thing I have ever been thru.  That time spent in the hospital is a blur of pain, asking for meds, and hurting.  There was no comfortable place to lay, sit, etc.  The neuro warned me it would be bad and it was.  But now I know that the bone is off my spine and I am trying to figure out the rest.  I am left with incontinence of the bladder (even after having a Medtronic stimulator put in and it now does not help), some incontinence with the bowels, an abdomen that looks like I am about 7 months pregnant (I have always been small before this) that has spasms that feel like I am continually doing crunches while I am laying down.  Right now my pain will go from the neck, thoracic, and left hip.  Oh and by the way, the pain is so bad and be sure they are willing to medicate you.  During the first few days at the hospital they went from Percocet to delauded ? and finally a fentanal ? pump, and I was still in pain.  So I think I have covered it all.  My new pain med plan is they increased Neurontin to 9 pills a day, I take 100 m g  of Lyrica 3 times a day and ER norflex.  For the most part it is controlling it but we are still working on the amounts.  I just have to do each day at a time.  Some days I can go and do things with my family and feel somewhat normal.  Other days it is the heating pads all day.  I do have more hope now than I did.  Going off the Vicodin was a big game changer.  It changed the type of pain I was having and lessened it in some places but everything was out of balance when I went off it so it is taking some time to get my amounts fixed.  I'm sorry this was so long and with a lot of grammatical errors.  I hope this helps and please feel free to ask me anything.  I could always read about getting the actual surgery but since it is so rare there has been no support or understanding from anyone.  But that's what I would like to do on this website.  I'm still new to webforums so if I have broken any rules, offended anyone, etc. please let me know. 
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