Haley - Yours seems to be the same as mine was (bilateral palsy). Its pretty scary not being able to use your arms. I stayed in the hospital for 3 weeks for therapy, but it did not help much. I was discharged with very little assistance or guidance on how to do the basic things like take a shower. My left arm came back after about 2 months, but the right arm is still useless (some minor improvements). Hopefully, you get one arm back quickly also. I did go through OT, but I found it to be pretty useless. I had better luck finding ways to do things on my own. Your mind gets very creative when faced with challenges like this. You will get very frustrated, but keep up the fight. Keep telling yourself that it will get better (it will). Good luck. Keep us posted.

End of week 18. A little improvement in shoulder (deltoid) strength. I can now reach the center of the steering wheel on my car. About 2 inches higher than I could reach 3 weeks ago. No improvement in bicep strength, but I can feel some movement of the muscle when I try to flex it (its alive at least). The nerve pain in my arms is still pretty bad, mostly later in the day. I'm being told that this pain will likely persist until the nerves have regenerated. Gabapentin relieves it most of the time, but there are days that I have to take oxycodone to get any relief.

I have also been dealing with this new problem that causes buzzing in my arms, legs and shoulders when I tilt my head forward. The surgeon says its called L`Hermittes sign. It is usually seen in MS patients when the disease attacks the myelin that surrounds the spinal cord. This causes mixed signals to the brain. In my case, the surgeon says that it is caused by my spinal cord touching (rubbing against) one of the remaining rear spinal bones (a result of the posterior decompression surgery). Apparently, this is something that I either have to live with, or have another surgery to remove more spinal bone. I think I'll live with it. There is also a chance that it will go away on its own after my nervous system settles down.

Its been said on this thread, but I want those who follow to understand how important it is to stay on top of your exercises. Keeping the muscles moving plays a role in the reinervation of those muscles. Using an E-Stim unit also increases the effectiveness of those exercises.

That being said, I also want to stress the importance of stretching. Keeping the muscles and joints stretched is just as important as exercise. I know this first hand because I did get away from stretching and the result was stiffness, cracking and pain when I did the exercises. It also significantly reduced my range of motion. With this condition, the muscles and joints are no longer moving (or moving much less) and this can lead to contracture, which is when the joints basically freeze up (you do not want this).

I found a good stretching regimen on the website of a doctor, who's name is at the bottom of the attached PDF. This PDF shows each stretch and explains how it is done. These are the stretches I use and have had good luck.

Attached Files

exercisesfordeltoidpalsy.pdf (101.5 KB, 6322 views)

week 20 - More improvement in my range of movement. I can now almost reach the top of my steering wheel while driving. I can also touch my forehead with my finger. One month ago, I could only reach my nose. My bicep strength has increased a little, but my arm has to be flexed about 10 degrees (using my other arm) before I can curl it. I still cannot turn my palm up unless my arm is resting on a surface. Your bicep muscle (surprisingly) is mostly responsible for your ability to turn your wrist (like turning a key in a lock) and since my bicep is almost non-existent, I cannot turn my wrist and curl my arm at the same time.

At this point, these improvements are due to the nerve sprouts I wrote about in an earlier post. The nerve roots have not regrown yet. It may take another 6 months for that happen (if it happens). Since my recovery has been so slow, my doctor is not optimistic that I will see complete regrowth of the nerve roots. How much regrowth I will see is just a guess at this point, but 50% is what the doctor has predicted.

As far as the pain goes, there has been no improvement. Pain in the forearm and deltoid areas are pretty intense without 1200 mg of Gabapentin, 3 times a day. Doctor says the pain will not likely go away until the main nerve root has started to regrow. I don't know which is worse, the inability to move my arm, or the constant pain.

The buzzing and tingling that happens when I tilt my head down has gotten much better. It is still there, but not nearly as bad. Maybe I have just gotten used to it.

I will keep updating this thread, but only when there are significant improvements, or if there is anything relevant to add. I don't want to bore everyone with such a long drawn out timeline.

What kind of surgery did you have?

My first surgery was ACDF (anterior cervical decompression & fusion). That was not enough to relieve the compression of my spinal cord, so they went back in through the rear and did a posterior decompression. The posterior decompression involves cutting out the lamina, which are the rear sections of the spine (the bones you can see bulging out on your neck). When this is done, it leaves much more room for the spinal cord. Unfortunately, when the space got bigger, the spinal cord shifted backwards into the center of the newly opened space and caused the nerve roots to get stretched.

Update for week 25 - biceps are still very weak. I cannot bend my arm unless it is first bent to a 15-20 degree angle using my other arm. Once the arm is bent, I can actually lift a drink to my mouth, but I think that is mainly my brachialis muscle doing the work, not the bicep. The brachialis is the muscle that sits below the bicep and also helps curl the arm.

My deltoids have gotten a little better. I can rotate my arm to the side a couple more degrees and rotate forward a slight bit more (not much).

Therapist says that there is also weakness in the infraspinatus and supraspinatus (muscles in the shoulder over the scapula). There is muscle activity, but they are weak.

Pain is still intense. I've tried going a day without the Gabapentin, but that only lasted about 4 hours.......

Doctor has scheduled an EMG to see if there is any nerve recovery. If the nerves are coming back, the EMG will give him an idea of how much. The fact that the uninjured nerves have created new sprouts will confuse the results of this test, so it is not an absolute test.

Week 27 - not much improvement. Biceps are still very weak and getting no better. Deltoids seem too be a slight bit better. I can reach the sun visor on my car. The pain seems to be getting worse for some reason and my doctor doesn't have any answers for me. She simply says that the pain may or may not go away.......

EMG has still not been done. I guess I'll have to put some pressure them to get it scheduled.

I have a spinal cord stimulator that runs from C6 to top of C8. When I tip my head forward, it buzzes my foot. Just wanted you to know that you're not crazy.

Thanks for the reassurance that I'm not going bonkers. The buzzing has stopped, thankfully. Doctor thinks it was just caused by the nerve roots getting used to their new position after the decompression surgery.