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Just need to vent

It's been 14 months since this started. I've now seen two neurologists and two neurosurgeons, had MRIs on my brain, c-spine, and t-spine, two EMGs, and a VEP test, and am no closer to knowing what's causing my nerve pain, muscle spasms, and numbness. They found a large herniated disc at T6-7, but the latest neurosurgeon (who I like and he apologized for not being able to give me more answers) said my symptoms are in line with a problem at T4. On the MRI, my spinal cord "disappears" in that area, which he said could be a sign of a cyst. So now he wants to do a CT scan with myelogram, which is compliacted by the fact that I have a platelet disorder so would need to consult with my hematologist first. I feel like I'm back at square one.

The good news is, he was open to my suggestion that we try something else first. The pain is manageable most days, and other than not being able to sit for long periods or twist in certain ways, it doesn't seem to affect me too much. So I'm starting neurontin tonight and going back in 8 weeks if it's not "resolved." And while I consider this a small step forward, I'm unclear why 8 weeks of a pain med would ever "resolve" a problem that's been going on for 14 months.

And does every neurologist/neurosurgeon run behind 3 hours or is it only the 4 I've seen?!?!

Ok, thanks for letting me vent. Off to get my prescription.


  • Thanks for sharing Kelley,

    We all have bad and good days in our lives. Venting is important too. But I am glad you also have a good news. Let's focus on that and further build on that.

    Best wishes to you. Let's keep our thoughts peaceful and our lives will be peaceful too.
  • LC84LLC84 Posts: 599
    edited 07/21/2014 - 2:17 PM
    Neurontin is used to treat nerve pain. It won't address the root cause but it can help with the symptoms. I've been on it for a while now. It can make you drowsy in the beginning but that resolves with time. I also had to go through a few dosage adjustments before it made a difference. I hope you get some relief.

    I've never had to wait 3 hours. It's usually an hour wait for my specialists.
    Progressive DDD
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • I find it easy to be frustrated when you are the one that has to go through it, I understand what you mean. I am lucky enough to have a neurosurgeon who wants to do anything and everything to help me. We email every week in order to make sure that nothing new is happening or if I need to go in and see her which helps tremendously for me since every second seems to be different than the last.
    Although my neurosurgeon or any of my specialists make me wait for over 30 minutes except for if I get the last appointment of the day for my pain clinic then they can be up to 2 hours late but my neuro is less than 5 minutes late.
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