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Scheuermann's Disease

I am male/36 and started to experience gradually severe back pain approximately 2 years ago. I have always had a curve and always used some form of pain medication from it under doctor's orders. However, around December 2018 the pain is debilitating. To the point of me requesting FMLA, insurance supported disability, and finally federal disability.  Diagnosed as having Scheuermann's disease in 

Here is the list of what was discovered from an MRI I had in April 2018.

6 discs bulged
5 discs normal
4 discs herniated
4 wedge shaped bones
3 pressing against the cord
2 stenosis areas
1 protruding disc
Tight ligament from T3 to L5

Muscles spasms from right shoulder blade to mid right side. 

I first went to a very well regarded neurosurgeon, who at first did not notice how I was sitting and assumed I was looking for pain medication. After he asked me to stand up and look at me from the side, he apologized repeatedly for being crude. He ordered another MRI, because he did not like the report of the MRI that I had from my primary care doctor. The new test revealed what is listed above. He was honest with me and stated that he does not have the team to complete the surgery that I would need, but knew a surgeon in the state that took on spinal deformities. So he made a call to their offices and set it up for me to visit there. 

I have been ordered 6 weeks of physical therapy and I am halfway through that. My next appointment with the new surgeon is coming up soon and I want to get an idea of what may happen in the future. I know surgery is going to come, but that could be months or years.

Is or has anyone here gone through something like this? 

From what I've read and things I've googlefu'd, I am expecting all of my thoracic spine to be fused. I've never met anyone that has had anything close to this, so ya'll are my next step. I've got an amazing girlfriend that is willing to risk being a care taker. But I have to give up my career I've worked towards for the last 15 years. Anxiety is creeping around the corner and I think I will get some relief if I read someone else's experiences. 

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Comments

  • Waiting on my call for surgery. 


    Surgeon went in detail on what's going to happen and how. He is going to fuse a total of 14 vertebra from T2 - L3. 

  • Hi prugor - sorry to hear you are going thru this but am glad you found this site.  A lot of good information to be found here.  Have you searched the site for info on your condition?  Watched videos?  It can be reassuring to see what things are and how things are done.  I had a 10 level fusion for idiopathic scoliosis in 2016.  It can be a tough surgery and long recovery but I am thankful that there are procedures and options available to correct conditions such as ours.  There are many stories and comments on this forum in the scoliosis section that may be of interest to you.  Be positive and try not to dwell on the negative.  Things are what they are and worrying, fretting, stewing about it won't change anything.  Follow the links about preparing for surgery as they can be very helpful.  If your surgery center offers a class for pre-surgery prep, take it.  Lots of good info to be had that you may not have considered.  Keep us updated.

    10 level fusion T9 - S1 with pelvic fixation. Two titanium rods, 24 screws, 4 cages.

    Firm believer in PMA

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  • Yeah, the pre-surgery stuff will happen two weeks before the actual surgery. They lump that in together with all of the tests they do before hand. 


    How long was recovery for you?

  • prugor - my surgery was done in 2 parts.  They went in from the front and side on Monday to remove ligaments and disk material and place cages.  That was a 6 hour procedure.  Then another 6 hours on Wednesday thru my back to straighten my spine and place 2 titanium rods and 24 screws.  I could have been released as early as Friday but I had trouble maintaining my blood pressure when standing so had to stay until Sunday.  My recovery was excellent, not really too much pain.  Walking 1/4 mile a few times a day by the end of week one, up to 2 miles by 3-4 weeks, functioning independently by 5 weeks, driving alone at 6 weeks.  My biggest issue was just how slow I was at things and how easily I got worn out.  But really, that is not unusual.  There is a lot of healing going on and that takes a lot out of you.  Walking will be your friend.  I felt my best when I was moving.  Any static vertical position (standing, sitting) is tough.  Even now standing in one spot is not comfortable, but pacing works!  I don't think I had much 'damage' prior to surgery other than a fast moving curve.  My biggest complaint was pain in my calf, I couldn't stand more than a couple minutes due to that pain.  I was very active and very flexible prior to surgery so I think that helped with my recovery.  My favorite recommendations for post surgery devices are: a sock aid (still use that today), elastic shoelaces for my tennis shoes (used those until a couple months ago) and my back up camera in my car.  Of course a grabber is helpful but I found a dowel rod with a hook in the end more helpful for things like dressing (didn't want help putting on my underwear any longer than absolutely necessary).  I'm thankful that I live in a time where this type of treatment is available and that advances are being made that will result in more positive outcomes.  Good luck to you.

    10 level fusion T9 - S1 with pelvic fixation. Two titanium rods, 24 screws, 4 cages.

    Firm believer in PMA

  • Thanks! It's relieving to read someone else's story and not on Youtube. 

    Pretty sure mine will be only one surgery, no cages. All affected ligaments will be removed. There is a chance one or two of the wedged shaped bones will cause trouble when putting in screws. A very small chance. 

    The surgeon I'm going to is a no BS, no pillow talk, no bed side manner kind of guy. He is straight to the point and was very upfront about the risks. He said and I agree 100%, that this is not something I need to put off any longer and my ability to walk will probably be the next thing to go.

    Backstory below.

    I get no relief from gabapentin, lyrica, various normal amounts of opiates, and I have to take two sleeping meds to get any sleep. I generally manage 4 hours of sleep in 8 hours of laying down. I've never slept on my back, it's always been my side. If I need to do anything beyond walking a short distance around home or to the closest corner store, I have to take more meds to get through walking for more than 15 minutes.

    Last year me and my wife went our separate ways. We haven't divorced yet and it's certainly all my fault (No sarcasm, I was a pretty terrible husband). But we have struck up agreements that I pay for our house and she keeps me on her insurance. We're better as friends. I live with my girlfriend and she helps take care of me and the house. I can't do many things, but she handles the rest without complaints. 

    It's been a brutal 2 years, but sometimes it has it's moments. 

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  • Hi prugor, 21 year old male here, I had a 8 level thoracic spinal fusion 2 years ago, due to scheurmanns disease and herniated and wedging disks from t5-t11. If you want to know my journey, it's on this forum, below yours. The hardware helped me fused, and recently, I got my hardware removed. The only pain I have now 4 days post op is nerve pain on my rib. I will warn you, the surgery is incredibly difficult for the first month. After that, you will be better. For me, the hardware was causing me pain so it had to be removed. I am feeling good now, and will update on my thread once my nerve pain from surgery goes away. I fused on the left side, and partly on the right side. They considered me fully fused, and surgery was done in an outpatient facility to remove the hardware that was causing me unnecessary pain. In your situation it does sound warranted. I would plan for removal ASAP because having all that hardware inside me was painful. Let me know if you have any questions. 


    PS: Valium literally saved me from the after-care surgery pain my first surgery. If I didn't have that, it would be so much worse.


    Good luck and I'll say a prayer for you. 

  • If you do commit to this, I would go the minimally invasive route if you can, (I didn't, therefore longer recovery), and make sure you are prescribed something to help you fuse. There are devices now that insurance covers that you wear after surgery that go on you like a brace and send rays to the area to help you fuse. My recovery was about 6 months, and it doesn't totally relieve your pain. Especially for the thoracic area, its unlikely you will be pain free. However, if you commit and go the minimally invasive route and get the hardware removed (im 4 days post op and feel pretty good) and fuse, like me, I think that will be the best outcome for you personally.

  • I was able to go without my mom after 1.5 months, and since we are having a similar fusion, I would expect that. After 1.5 months, while taking valium, I was able to walk 1 mile. Then my pain got less and less. I could barely move though, I will be honest, and it was 20 days in the hospital. (not to scare you, if you know what its going to feel like, you will be better off) And that brings me to my other point I mentioned earlier about the minimally invasive aspect. I wish I had done that. So if you can, I would. 


    All the best

  • Also I just want to say I had pain for about 5 years before this, it does get better. But right now I'm really sorry for what you're going through. I debated ending it, but for how I feel right now, 2 years post op from the fusion, 4 days post op removal, it wouldn't have been worth it. If you have any questions, you can pm me.

  • Update 9/7/18

    Surgery date is October 9th. 

    @blakebowr1 Glad to hear you are doing better. I'm expecting the best, but prepared for whatever happens. I've dealt with this since I was a teenager, with it progressing so far. Nothing really helps, so this is the only step I have. 

    I get nothing but good vibes from my surgeon. He has no bedside manner, which I love. I want someone that is no bullshit, no sugar coating, just straight to the point. 

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