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my T10 operation story

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:28 AM in Upper Back Pain, Thoracic
Hi everyone,

I am Helen, in the UK, near Stratford upon Avon. it is 2am, and i cant sleep, so guess what? Yup - I have joined another forum!

I think I only ever come on forums when I cant sleep, I never seem to be on them at a sensible hour ;o)

Anyway - my story:

I have always had prob's with my back, which is why i lost weight on a total food replacement plan last year, but just before xmas i fell down stairs when playing with the dog. (I have a boxer) I didn't really notice anything unusual at the time, aside from some numbness in my left leg. Little pain really, and intermittent double incontinence. I mentioned it to my gp, who wasn't really that worried, so i left it.

I do see a rheumatologist regularly for fibromyalgia and mentioned it to him - and he suggested an MRI thinking i had a slipped disc. The MRI come back showing a critical prolapse in the T10 area of my spine and i was told i'd need a 'routine' op to repair it and was referred to a neurosurgeon that day (privately). this is now 5 weeks after the fall.

My gp rang with results of a blood test for something else and i mentioned about the mri results and the op to him and he said 'its highly unlikely you need an op, prob just physio and antiinflamatory tabs... Final last words!

Well i saw neuro surgeon, this was end of january, and he said my disc was very critical and i was at risk of being paralised from that point down and needed urgent surgery!

Also the ' routine' op had turned into a, i quote, 'big big op' with a small but very real risk of: death, paralasis, pulmonary embolism, infection, and a list of other stuff that sounded scary!

I was admitted 2nd february and had the op the following wednesday (4th feb). I was in intensive care for 5 days, high dependancy for 4 days, in a single room for 7 days and on a ward for 2 days. I was allowed to go home the day after the bed rest ended, mainly cause i kept nagging them to let me out! I had more bed rest and have to take more time off work than someone i met who has had open heart surgery (a triple bypass!) I dont know how successful the op has been yet, although there are improvements already, the idea of spinal surgery is to prevent worsening rather than to repair. I am less numb than i was - But it could take upto 2 years to see the full benefit. I was suffering from incontinence of the bowels, which seems to have improved, but its hard to say as i am still on strict rest for another 4 weeks. moving about seems to get things moving if you catch my drift! I am not incontinent of the bladder anymore :)

To do the op, it is very complicated. If i had a neck or lower back op it would have been easier, less traumatic and require less after care and time off. But because it was in the chest area of the spine, they had to operate quite close to the heart. To do this they removed a rib, deflated my left lung, removed the disc, put a titanium mesh thing in, and put me back together again. I was in theatre 10.5 hrs. Prob 8 hr op taking time off for anesthetic etc...

When i came round i had 3 lines in my left arm, one in my neck, a lung drain, a spinal drain and oxygen. I looked a right mess.

After 14 weeks on a diet to get a bikini body, i now have a 25cm scar from my left side to the middle of my back!

Ever feel like you have wasted your time on something?!

I am now resting at home, i need chair/bed rest for another 4 weeks (6 in total) so have borrowed a wheelchair so i can at least get out a bit. I am off work for at least 3 months, i'm a carer.

I have to wear a corset, its not really anything like a corset at all, i look like something off irobot! it is white, plastic and totally enclosed. very unsexy!

I am going quietly mad sat and lying around all day, although i am trying to crochet myself a jacket at the moment, and have about 100 magazines to read that my mum gave me! so if anyone wants to talk to me i am all ears!

I hope my story hasn't scared anyone off from this type of op, it is quite rare as procedures go (1% per annum of population in the UK)but it is better than the alternative. I am very grateful it was found before it caused any kind of paralysis

My message is this: never ignore numbness or incontinence and dont always trust your general doctor! see a neurosurgeon.

Thanks for reading.

Helen xx


  • Hi Helen sorry to hear about your journey to you your operation. I'm sherry and 2 weeks ago yesterday had my latest back surgery, like you they went thru the side and removed a rib, had to replace a disk woth a part of my rib. This has far been the most dangerours surgery as had pieces from the damaged disk into my spinal cord. I want to say i'd never ever go thru this again, but if it works it will be worth it I know. I spent and extra 3 hours after my surgery in recovery trying to get my blood pressure up hight enough to go to ICU, spent over 3 days in ICU and then 2 days in NSS and 2 days in a regular room. Like I said worse pain i've have had, my heart acted up in ICU had to have a center Line put in, oh boy, after i came home was still so weak and in pain that my 3rd day home I passed out while getting a drink of water. So back in the hospital I went for 2 more days. Now i'm basically dealing with no sleep as i can't get comfortable, seens like i got ran over by a truck in my mid section. but even thats getting a wee better. I now wear my sexy brace that adds 40 pounds by the look, and part of the day i have to also wear a bone growth stimulator to help the bone to fuse faster. Now my regular dr sent me to my neurosurgeon at first signs of back problems and I love him, glad i didn't have to see anyother dr. Well keep me posted on your recovery. Sherry
  • hi sherry,

    Hope you are feeling better soon, sounds like you have had a right ordeal there, and like you say, you would love to say never again, but if it works and the alternative is paralysis or reduced mobility, you cant say never again.

    also, i am sure there are a few people who would have loved the opportunity for an op that may have saved their mobility. somedays i feel a little indulgent complaining about the pain, when at least i can still recover and lead a 'normal' life.

    i found out a few days ago that the job i had as a carer, that i thought would still be there in 3 months has now gone, my boss had to shut the company down, so I am now unemployed and off sick - heaven knows how i will present myself as an attractive prospect for a job when i still dont know if i will be crapping myself at a moments notice!

    they say you are sent challenges to test and improve you, i wake up in the morning wondering if i have been turned into a slim goddess over night, but alas not yet!

    I had a folow up xray today, and the dr said it was all ok and that i can mobile more as soon as next week :O)

    that has cheered me up.

    I really do hope you are recovering well sherry and that you are keeping your spirits up. are you on facebook? i'll pm you my email so if you get bored we can have a chat on the messaging.

    take care

    love love love

  • Helen and Sherry,

    Being in pain really, really, really (I can go on but you get the point) sucks. I have not slept well for the past year because of pain. So here is the long version of my story which you can read if you want when you are not sleeping. By the way I read something in a post that seems to help me. The person said that pain medication is better at preventing pain then stopping it once it comes on. So it is better to take your meds before the pain comes on. His advice was to try pacing and waiting for the pain to subside before taking the pills and then they will work better. I have spent many hours pacing around my house in the middle of the night waiting for the pain to go down. Hopefully you will both be pacing before you know it.

    What you both are going through sounds really hard to deal with so try your best to stay strong. I have not had surgery or some of Helen's other wonderful problems but I have been in excrutiating pain for almost a year. April 1, 2008 I got into a car accident that really did not seem too bad. I was rear ended by a small car that was rear ended by an 18 wheeler. My car looked okay, only around $1500 of damage. And I felt fine for about an hour. Then when I sat back in my car my back started to stiffen up and the pain started to come. The pain was bad and continued to get worse. By the end of May my head hurt so much that I could not hold up my head so my ortho gave a neck brace to me to wear. I had to wear it for a month. Not as bad as your surgeries but it was not fun. I worked in April but by the middle of the day my neck, thoracic and lumbar hurt so much that I had to lie under my desk.

    By the way, I was a sales rep for an insurance company. In May my boss said that I could work from home. He said to forget about appointments and just work over the phone. I tried that for a month but the pain was too much. Just about every muscle in my back was spasmed, and the pain radiated down both arms and legs with numbness in my hands and feet. There wasn't anything that I could do to stop the pain. At the end of the month I was around 300 emails and 100 voicmails behind. I was kneeling at my bed like I was praying, trying to get comfortable, while I was on the phone talking about insurance. That was when I realized I had to go on disability.

    I am 40 with a wife, 4 year old daughter, a 2 year old son and a yellow lab. In June, July and August all I could do was manage to go to my appointments (dr, pt and accupuncture). When I was at home all I did was lie in bed in pain. I managed to read a couple of books and I watched a lot of CNN news. At least the presidential campaign was interesting. I know how you both must feel. The pain is unbearable and you don't know when it will end. And when it lets up a little then you realize how bored you are. Unless somebody has experienced it, it is impossible to even imagine what you are going through. And every other problem that you have might seem small if it was all that you had, but when you pile it on top of everything else, it is hard to take.

    My doctors tell me that I don't have anything major that is wrong with me, but I have a lot going on which is resulting in my pain. Initially I had mri's of my neck and lumbar which only showed bulging disks. From the first day I complaigned that the pain in the center of my back was unbearable. After 5 1/2 months they finally did a thoracic mri which showed 2 small and 1 moderate bulging disk. As a result I got 2 epidural injections in my thoracic. They actually helped and in Nobember I was able to sit up for a little bit with my wife and kids.

    In the middle of December I received a letter from my company saying that after 9 months of medical leave my job would be terminated. I had to go back before March. Plus, I like my job and made just enough so my wife could stay at home with the kids so the money was okay. I was desparate to try to get back so I went to a chriopractor, which I was always afraid to do. It took about 4 weeks and then I actually felt good enough that I thought I could make it through a day and therefore work.

    I went back to work on Feb 16th. I felt okay until Thursday night. I was up in pain all night. I wanted to go back on disability on Friday but my wife convinced me to try to hang in until the weekend. It was hard but I did. I felt okay Monday morning and went on a couple of appointments. But around 3 in the afternoon the pain started. On Tuesday the pain started earlier and lasted longer. By 11:00 on Wednesday I started looking at the clock counting the minutes until I could take my meds. All afternoon I continued to watch the clock, waiting for the day to end. One of my co-workers said to pretend to have an appointment and to just go home. I did not want to that because I did was afraid that if I gave in to the pain then it would become too easy to give in all the time. Somehow I managed to fall asleep Wednesday night but tossed and turned all night. Around 4:00 I gave up and watched tv until everyone got up. Again I told my wife I wanted to give up and she said to try and push myself. A side note just so you know, she was being very supportive and trying to help me to stay strong. So I decided to get to see if I could get ready. But when I stood up not only did my back hurt but my legs hurt so much that I was limping around the house.

    If you have not figured it out yet I went back on disability. After only 8 days I went back to felling worse then before I went to the chiropractor. The next day I received a letter from my company congratulating me on 5 years of service and letting me know that I would receive a debit card for $100. I was not expecting anything for completing 5 years so I thought $100 was nice. Then on March 4th I received the termination letter, which was not as much fun to get as the other letter. I knew it was coming so I was not upset. All that I wanted to know was if I was still going to get the $100. I received the debit card a few days later and I am still trying to figure out what to buy with it. Since I am on disability and not taking home as much I think my big purchase will be food for the kids.

    The next Tuesday I saw my pain management doctor who recommended thoracic surgery to help with the pain in my back and legs. I met with my ortho yesterday and he once again said that thoracic surgery was not right for me. He said that it would not help my pain and had too high a risk of paralysis. I know why Helen had it but Sherry why did you have it? Instead my doctor recommended that I have a neurostimulator implanted which I am considering. My wife is scared that doing anything near the spine is risky but just like both of you, I just want the pain to stop.

    And that is where I am now. I know it is hard but I always try to find something positive in every situation. Sometimes you can not see what it is but when you look back you can figure it out. Of course I wish this never happened because it has drastically changed my life. But this situation reinforced for me what a great woman I married. It has been hard on her to take care of our kids and home by herself. As well, it has not been easy putting up with me and my wonderful pain induced moods. I also got to see my son take his first steps, which I would have otherwise missed.

    If you managed to read all of this you are probably so tired that you probably can actually fall asleep. Hope this helped distract you for a few minutes. Feel better and keep me posted on the progress of your recoveries.


  • Wow Ken all reminds me of the pain I suffered, from my sides down, waking up and have to stumble to the bathroom. Well It is a serious surgery and I am 3 weeks post surgery but most all the pain is from the surgery now, gets a little better each day. I still get the nerve pain in my feet but nothing like before the surgery. I am down to only 1-2 oxycodone a day and sometimes a moltrin. The surgery was rough and hurt alot from all the work they had to do. I know where they removed the rib aches sometimes but thats improving too. So good luck to you and your family and hope all works out for you. Sherry
  • Hi Sherri and Helen,I am most likely going to have the dreaded thoracic surgery. My doctor told me I could go paralyzed too if I don't. I have a disc herniation that has ruptured into the spinal canal and is contacting the spinal cord at T8-9 and is causing lots of pain around my ribs and getting weak in my legs.I have been to lot's of surgeons in the past 2 years and it is probably inevitable. I was scheduled for surgery back in the fall but the doctor had only done 2 of them so I decided to wait for a good surgeon and am going to see him next week. Hopefully he has another option, but I'm afraid I'm out of options since nerve blocks and steroid shots don't seem to work.Please keep me posted on your recovery, since I have very little time before I too will be going through the same thing. Thanks,Robin Renee
  • Thank you all for sharing your stories. Reading through all of them, has helped me a great deal.

    Prior to my fall in November, I never had back problems... so I am in the process of educating myself these days. I thank God I am able to sit and type... as after my surgery, I was in so much pain... I could not comprehend being able to sit long enough to type.

    Helen... I sure hope you are doing better each day. (I also hope the others who posted are feeling better, too.)

    After starting my aquatic therapy three weeks ago, my pain level increased. At first I thought I was going downhill, but now realize it is going to take a long time to "wake up" my muscles.

    Like you, I was working full-time in finance and human resources. I absolutely love my job. I am on Long Term Disability through the end of the year and I was just notified that I qualify for Social Security Benefits. Being a mother of 3 and a newlywed as of October 2008... hearing the word "disabled" was overwhelming to me. I have always been a very active person... love being a mommy, love working full-time, love being outdoors and doing activities.

    As much as I have tried to think positive, I have found myself crying a lot. I miss the old "me". I have scheduled an appointment with a therapist and will start taking anti-depressants to help me through this. I need to be strong for my family... this is really hitting them hard, too.

    Again, best wishes to each of you.

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