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Thoracic Herniations at Every Level

From: jls826 - on 06/13/2012 9:09am

Hello Forum,

I'm 35, have never had an accident or traumatic injury, and the only bone I've ever broken was my thumb while playing volleyball. As a child I was frequently monitored for scoliosis that was mild and apparently only needed to be monitored.

In 2008 I started having back problems, mainly lower back and leg & foot issues. Had a lumbar MRI revealing herniations, thecal sac compression, mild stenosis, etc. Began PT and improved so quickly I unfortunately stopped PT. Almost exactly 1 year later I had recurring symptoms, saw a specialist, had another lumbar MRI and there were not any changes reported from the previous year. I did an injection, completed 3 1/2 months of PT, and was fine for 18 months. :-)

My back went out again in January 2011, which was accompanied with extreme hip pain (worse at the top in the iliac crest region and radiating down through thigh) when lying down/sleeping. The type of pain that wakes you up every 2-3 hours, regardless of stretches, pain killers, etc. Saw the spine specialist again, another lumbar MRI was done which apparently had somewhat worsened, had a Hip MRI that didn't reveal anything explaining the pain. Moved forward with the microdiscectomy, having been instructed it will likely help the hip pain as well.

I've been through the system of surgeon, physiatrist, 5 + months of PT, injections, etc. Note my lateral hip area is swollen, oddly shaped, asymemtric with my right, and has a hard thick strand like thing in the front of the swollen area. PT expressed concern over that, and thoracic pain I had only since surgery. Neither was ever examined, treated, tested, etc. They did injections for bursitis when the MRI report explicitly says I do not have bursitis.

Went to see another neuro, who did a series of things, including ordering a thoracic MRI. Got the report back and it revealed that there are herniations at EVERY thoracic level. most are mild, with "mild to moderate cord compression." 4 are "moderate to servere" and 1 is "severe". It says in the report that it is likely due to degenerative disc disease and schmorl's nodes. 1 of the disks also has a perineural cyst. Also it mentions some nerve related issues T10-T12 - looking at a nerve diagram those nerves appear to run over...the iliac crest region and lateral thigh. So that may explain the pain there - finally.

After spending time doing some research, it seems very odd to had thoracic pain, and even more odd to have thoracic pain accompanied by symptomatic herniations. The reported ones tend to be lower and upper thoracic - the worse ones for me are: T4-T10, with the worse one being T6T7. I still have several lumbar herniations, as a result of surgery the most severe one was L4-L5 that is now "only" causing moderate compression...it was severe prior to surgery.

While I'll partially dismiss some of the mild thoracic hernition as "incidental findings" but am very concerned with that there doesn't seem to be any other reported cases.

What on earth could cause so many herniations throughout one's lumbar and thoracic spine? They claim that the degenerative disc disease is "mild".

I'm seeing the neuro and a new physiatrist next week but am so bewildered as I've seen nothing else like it in my research. Would appreciate and advice, input, etc.

Thanks!

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on 06/16/2012 5:24am

I have Thoracic DDD besides my other problems. I had T11-T12 fused in Oct '09 from an old injury as the disc was almost gone. They did do a discogram test on it and all I can say is I'm glad that pain didn't last long, 2 hits and the 2nd one I must have come a foot off the table. Since having that fusion/XLIF it has caused the next 5 discs up to thin almost 50% = DDD. Get a few opinions and make as educated decision as you can. I was in terrible pain/spasms before my fusion but sadly I am as bad just 2 1/2 yrs later as I was then. There is a reason most Docs only have back surgery as a last resort for themselves. I thought I was 100% after 9 months of healing only to start the steady decline after only 3-4 good months.

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on 06/16/2012 11:51am

Thanks for sharing your experience, Jerry. After having the lumbar microdiscectomy less than a year ago, with minimal relief, I am very apprehensive about any further spine surgery. I'm glad that lumbar surgery relieved some of the nerve related tingling/numbness in 1 of my feet, but considering all of the other issues I'm having, and now with the Thoracic findings, I'm fairly certain that my spine can not take anymore. I only wish that I did not believe that that would help my hip (the reason why I haven't slept more than 2-3 hours at a time for 18 months) and I would've focused on that. I also wonder if the laminotomy from the lumbar surgery could've caused my spine to shift, affecting the Thoracic area as I never had any midback issues until after surgery.

At this point, I'm somewhat resolved to the fact that I will likely always have back pain - although the pain following surgery for a week was something I never want to experience again. I can't imagine pain that accompanies a fusion or more invasive spine surgery - and so many people still have pain after all of that.

If I can figure out a way to deal with the hip - looks like T11 & T12 nerves serve the areas I'm having pain and sleep like a semi normal person, I will be able to resume some type of normal life, which includes school and volunteer work. Right now I can barely make it through work, even with all of the modifications . Having been unemployed for almost a year, I will crawl to work (especially since I like my job) if I have to rather than go through that again and with no insurance.

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on 06/16/2012 5:50pm

I was told for 2 1/2 yrs I didn't need surgery by a local neurosurgeon when in fact my L5-S1 came out in 3 small pieces and the atrophy of those 2 1/2 yrs (205lbs of muscle down to 165lb bag of bones) accelerated my T11-12 problems. I'm 51 and just flat wore out the L5 disc from physical work. My T11-12 disc was blown from a fall racing MX in my early 20s and I also had 3-4 old compression fractures from the same fall. I saw the former head of UNC Spine Center last month and he said it was trying to fuse itself on those levels now and I had best learn to live with it. He came in the room after studying my before and after MRI and said "you can't stand for 2 hrs in that corner could you? nope maybe 45mins and I'm pain and spasms bad. Docs told me I'd be hating life when I hit 45-50 when they were patching me up back in those days and I made it to 45. They are regrowing disc now in clinical trials from stem cells and hope the FDA will approve as early as 2015 so...........I talked to one of the places doing the clinical trials in Richmaond Va but they are only doing Lumbar now and with no prior surgeries for the tests.
Good luck, shame you are only 35

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on 07/05/2012 8:51am

What an ordeal. After what I have been through, I would avoid surgery at all costs. not sure about the artificial disc reasearch - could be worth a try. Although the logic in me thinks that if there are other issues, it would be a matter of time before they would herniate or there are other complications. Stick with neurosurgeons, and stay far away from orthopaedic spine surgeons.

Recently I underwent another lumbar MRI in June 2012. The endplate degenerative changes have significantly worsened compared to the post surgical MRI done just 10 months ago in August 2011. My neurologist, who I've seen for years, thinks that the surgery caused my spine to shift, these degenerative changes are causing further shifting, possibly causing hte thoracic issues as I never had the midback and shoulder pain until after surgery.

I had my surgery done by an ortho at Hospital for Special Surgery - great hospital, right?!?!?! My neurologist (who ironically is also an attending at HSS) said the she does not refer patients there, and that the doctors there "cover up" for each other. That explains why the chief physiatrist I saw at the recommendation of the surgeon never bothered to examine me or rule out anything back related causing the hip pain. He also refused to examine the shoulder pain I reported and said he would only focus on the hip. Three months later he said hip isn't his thing and to see another physiatrist who does in his own department.

Duke supposedly has a decent program down there. A friend underwent a rather complex spine surgery 2 years ago there. They probably are abreast with research as well.

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