I'm at the end of my rope

[alan]

What can cause the symptoms of an ascending syrinx (increasing and some ascending neuro pain, function change <in large part due to the worsening pain in my shoulder blade area, along with the sticking and popping shoulder blades, which makes moving my arms ever more difficult>) without being an ascending syrinx? Bad luck, like all the central pain I wound up with? I get an MRI every year, and they show nothing ascending from year to year, as well as compared to older scans. Increasing pains make my concentration worse (on everything except pains), and just make life miserable. It's bad enough I don't know ADLs, but even if I did, I'd be losing the ability to do them.

[dragon fly]

Hey, Alan,
I have no information about ascending syrinx but have had a lot of experience with misery. So, so sorry about your worsening condition. It's really hard to keep on keeping on when new problems crop as we age. I just wanted to give you some moral support for this great battle in which we are all engaged. Hang in there & know I'm thinking of you.

[SCIfor55+yrs.]

Have they checked your rotator cuffs for tears?You have a lot of post injury years on those shoulders.

[DaDutchman]

I too, have no experience with an ascending syrinx. I've had surgery to try and alleviate one problem only to have at least 2 more pop-up. I can only offer moral support at this time. As mentioned above, you have many miles on those shoulders. You should look at some of your muscles as the cause of your pain. The sort of pain that you're experiencing may be related more to your arm muscles than within your neck. Something to consider.

[alan]

My latest pain Dr. did steroid injections into both shoulders this week, but they had no effect. Such is my life.

[Brinda41]

I was diagnosed with an ascending syrinx back in 1994. I had a shunt put in and it is still there. Two years after the surgery however paying began to settle in. Every MRI shows that it is still dreaming but the muscle/nerve area that the shunt goes through is where my pain is and if I over use that muscle (it is either the deltoid muscle or the trapezius muscle... whichever one is located under my right shoulder blade) it hurts terribly. I am on a low dose pain medication and that takes the edge off but, again, if I over use that muscle or if I get hurt in any way in that area... I am in pain for days. I am 37 years post and it is getting old and tiring. That on top of all the other problems I am having.

I have heard that syringomyelia only happens to about 4% of the SCI population and I do not know of that still holds true but those who are lucky enough to acquire the damn condition really suffer.

In any case, I hear you loud and clear but have no advice to offer. :-(

[DaDutchman]

I'm still experiencing my pains along with a new one created by my physical therapists who have limited knowledge in trying to relieve my pain. One thought that I have is, have you tried nerve block shots to try and ease the pain? As for my initial right shoulder blade area pain it took them over 8 years and multiple MRI's to find a herniated disc between C4 and C5. Since I've had the pain there from the very first day I remember after my accident, I believe the herniated disc happened as part of the accident. Try and see if someone can tell you if you have a herniated disc between C4 and C5. Hang in there.

[SCI-Nurse]

All good suggestions. If your MRI is not showing the syrinx ascending, then I would look for other causes. Shoulder injury can cause neck pain. So can disc injury. Have you had these checked out?
ckf

[SCI-Nurse]

Yes, C4-5,C5-6 innervate the shoulders, scapula. Also shoulder problems- rotator cuff, impingement syndrome, overuse/disuse and just using under the arm techniques to pull someone up- shoulder cause issues. NSAIDS helpful with heat and/or cold.
If syrinx, no promises with that treatment/surgery and usually only done with weakness. Did your doctor say syrinx pressing on those specific nerves?

CWO

[alan]

I have a fusion between C-4 and C-6, and that region supposedly looks fine. No shoulder injury found so far. No idea of anything that can stop the blades from sticking on whatever bones they're catching on. The syrinx isn't pressing on anything, the doctor says.

I'm leery about cold and heat because I don't really feel them well when I try ice pack or heating pad under my upper back. NSAIDs haven't provided any relief when I try them. The pains seem neuropathic.

I'll mention nerve blocks again. They'd be in my neck, correct?

Thank you for the ideas.

[DaDutchman]

I I'll mention nerve blocks again. They'd be in my neck, correct?

Thank you for the ideas.

You're welcome. Yes, the nerve block shots are the neck. When I had mine done I was put under, but only so far because they want you to be awake just enough to answer some questions. They also were injecting the shot while I was being x-rayed continuously. They did that so they could make the injections in the right location.

Good luck.

[SCI-Nurse]

If neuropathic pain then you should be on or started on Gabapentin or Lyrica and Duloxetine (.
CWOCymbalta) might help- can take with Gabapentin and sometime Lyrica (pregbalin)

[Jim]

If neuropathic pain then you should be on or started on Gabapentin or Lyrica and Duloxetine (.
CWOCymbalta) might help- can take with Gabapentin and sometime Lyrica (pregbalin)

Is Elavil no longer recommended? It has been very effective for me, 20 mg x 2.

[Sue Pendleton]

Is Elavil no longer recommended? It has been very effective for me, 20 mg x 2.

Jim, If Elavil is working, stick with it. All the others no one really knows why or how they work. I had some serious hallucinations in rehab on my first dose of Elavil that was all of 5mg. So on to everything else ending with Gabapentin. I got up to the max dose and it did nothing. Slowly weaned off it and that was also when I was being weaned off baclofen. After I was off both we tried old school Valium after Datrium and Zanaflex did nothing either other than knock out my spared muscles. So, just take the Valium for spasticity and if the nerve pain gets bad again I'll go hunting for a good acupuncturist again.

You do get your liver levels checked annually, right? Should be a regular blood check with most of the meds we all take.

[Sue Pendleton]

Alan, if you want to try heat but not use a heat pack or pad maybe try a patch? I often use Salon Pas's capsaicin heat patches you can get OTC. They can be left in place for 4 hours and I love them for that area between my shoulder blades when it gets cold and that tightens up. Just have whoever applies one use gloves or wash hands well afterwards so they don'T get the stuff in their eyes, etc. First time have someone pull back a small corner to check for an allergic reaction to the glue but that is rare. The area will be red or pink for awhile after the patch comes off as it opens up the capillaries to bring blood to the area. Most of the drugstores and some grocery stores out there carry them and they are very reasonably priced.