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Newly Diagnosed - Can you help?

AnonymousUserAAnonymousUser Posts: 49,321
edited 06/11/2012 - 8:25 AM in Spinal Stenosis
Hello -
I've been diagnosed with Schuermann's disease since I was a pre-teen, and having been living with back pain for over 10 years now. I recently had a Intrathecal Pain Pump implant a few months ago, which is doing a way better job of controlling my pain without the legions of narcotics that I was on previously.
Here's my problem...
Last week I had a follow up with my PM doctor. At the appointment I brought up a strange symptom I've been having, that I thought might be related to my pump. For the past few months I've been waking up in the night (or when I first wake up in the morning) and my fingers are numb. It's always my pinkie and ring finger, or my thumb and pointer. At first I thought I might just be sleeping on them wrong and my hand was falling asleep, but I realized that I'd wake up with my hand straight out in front of me (not bent in any way to cause it to fall asleep) and it would still happen. Plus it doesn't have a tingling sensation, it honestly has no sensation at all. At best it just seems kind of like they're cramped, and at worst my fingers will be curled or bent and I can't physically move them without using my other hand to hold them straight (they absolutely lose all feeling). This only usually goes on for a few minutes and then fades once I start moving around.
Well, when I told the doctor this, he said that he thinks it's cervical stenosis. Because my disease is degenerative, he thinks that it may have just progressed to this point.
My PM suggested a cervical MRI to get a better idea of what we're working with, but I'm feeling unsure. I don't want to just get an MRI to know that I have progression of my disease - I had to do that when I was younger to track the progression of the Scheurmann's, but it always just depressed me because there is nothing they can do but treat the symptoms.
Any suggestions on what I should do? My PM wants to do the MRI so we have a baseline to watch it from, and if it shows it's bad enough, then possibly look at a surgical intervention. What are the surgical options for this? Any advice?


  • Hi!

    I have never been diagnosed with your condition but Im 22 and have been living with DDD and lumbar stenosis for about 5/6 years now. I am so happy to hear that you are finally getting some relief with your pain pump. :)

    About the MRI, I know what you mean. I have been wanting a new one for my back to see the progression..but I also don't want to know. I know if its surgical...I will be to afraid to have surgery etc etc. Plus..I just dont want to see how bad my back is already at 22 :SS .

    Since you are having numbness in your hands though with no obvious cause I would do the MRI. Its generally always better to be safe than sorry, especially where your nerves are concerned.

    Hope you get some relief/answers.

  • I just found this on the forum. I, too, have Scheurmann's kyphosis and developed spinal instability that required fusion of T10-L2 because of anterior cord syndrome. My bones slipped back so far when I bent forward that it injured my spinal cord. I had bladder issues and my right foot became spastic. All this got better after surgery.

    Years later, I developed more trouble walking and numbness in my arms and shoulders. I had cervical stenosis with a herniated disc. I had developed "clumsy hand syndrome" from the stenosis and herniation, but am happy to report that this has resolved after a simple C3/C4 fusion. Please get the MRI. There might be a simple fix to your problem. I know it is easy to get discouraged, but hang in there! We're here to help and support you.
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