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.

Week 32 - I have seen some improvement in range of motion and strength. I can now raise my arm straight out in front of me (90 degrees). Biceps are still not coming back, but the nerves there are the furthest distance from the central cord, so it will take longer.

I had an EMG done and the doctor tells me that there is evidence of nerve growth. He also told me that he would have expected more regrowth than I have, but that I am only 7 months out and it could take another 6 - 8 months for me to reach maximum regrowth. He said that he has seen some patients drag along like this and suddenly have very quick growth. He has also seen some patients take a full 2 years to see maximum regrowth. Only time will tell.....I'm not giving up the hope that I will get back at least 80% function. I have no illusion that I will be 100%.

I have started working on a universal machine at home to strengthen the muscles around my deltoids and biceps (triceps, traps, romboids, pecs, etc.) in hopes that this will help regain overall strength. I met with a rehab specialist who said that this approach is much better than focusing only on deltoids and biceps. That should be common sense, but I never thought of it. I am still using the E-Stim 2 times per day (really getting sick of using that).

The pain in my arms is still there. Doctors keep telling me that it should go away at some point. I just with that time would come...

Week 37 - Range of motion in deltoids has improved. I can lift my arm in front of my body about 95 degrees (slightly more than straight out). My bicep has improved a little. I can curl about 1/2 pound once my arm is bent more than 20%. I still have no strength if my arm is straight down (I still don't understand that).

I had my follow up with neuro and he is telling me that the EMG shows injury at C5, C6, C7, and C8. He thinks this is Central Cord Syndrome (CCS), not C5 palsy. With this many levels of injury, he feels that it has to be CCS. My other doctor looked at the EMG and still says this is C5 palsy, not CCS. At this point, I don't care what it is, the treatment and recovery are about the same for me.

The pain is still there and my use of Gabapentin are the same. Neuro says that it may take a long time for it to go away, if at all. Yes, he says that the pain may never go away.

As long as I keep seeing improvement, I am not giving up hope that the pain and weakness will get back to at least 75%.

week 42 - As far as deltoids go, it appears as if I've reached the point where nerve regrowth has maxed out. I can lift my arm straight out in front of me to about 130 degrees (3/4 of the way up). My deltoid strength is only at about 40% of what it was. Hopefully, as I continue to strength train the muscle, it will get stronger (it is a slow haul).

Re-innervation of the biceps has started to increase. I still can't quite bend my arm from a straight position, but I am close. Strength is still almost non-existent. Curling a 1 pound weight is about all I can do (after it is bent about 30 degrees), but at least I can move it against gravity now. I still cannot supinate my hand (turn it palm-up), which makes eating with that hand difficult.

Pain still has not gotten any better. Doctor is puzzled by this, since the pain is usually the first thing to get better. Seems to think I have some amount of central cord damage that is causing radiculopathy or myelopathy. If that is the case, I may have to deal with the pain indefinitely........

Well, today is the 1 year anniversary of my surgery. The surgery that changed my life completely (for the worse). All along I have been told that recovery will take 1 year and after that, I will have very little (if any) improvement. It looks like that is going to be true (maybe not, but probably so).

At this point, my left arm is at about 90% of what it was before surgery and I have full range of motion. Strength is not 100% but for the most part I can't tell any difference unless I am lifting weights.

My right arm, however, is a different story. I almost have full range of motion, but strength is almost non-existent. I can only curl about 3 pounds and I can only lift about 2 pounds straight out in front of my chest.

The muscles in my shoulder have bulked up to the point where the bones are no longer visible, but my right bicep muscle is still so small that you cannot see any bulk at all.

From a pain standpoint, there has been no change at all. I still have the same pain levels now that I had right after surgery. I am taking Gabapentin 3 times a day just to make the pain bearable. My doctors say that this is not usual. Usually the pain stops as the nerves grow back.

My doctors are still saying that, in addition to the C5 palsy, I also have a spinal cord injury (central cord syndrome). During the surgery, the nerve roots got stretched, but the spinal cord also got injured. The central cord syndrome is probably why the pain has not gone away and why my right arm has not recovered as well as the left. One of the doctors told me that if I didn't have the cord injury, I would have had complete recovery in both arms by now.

So, as for my C5 Palsy, it looks like this is the end of my story. It looks like my recovery may have maxed out. For my spinal cord injury, I am told that small improvements can happen as far out as 10 years. Let's hope that is the case and I still get some strength back, or at least see less pain.

For those of you reading this because you have C5 Palsy, I can tell you that full recovery IS possible if you work at it. Do not expect full recovery if you just sit around. Your occupational/physical therapist will give you exercises to do. DO THEM 3 TIMES A DAY EVERY DAY!!!!! You will get out of it what you put into it. Also, ask your doctor to give you a prescription for an FES or electronic nerve stimulator. Do this right away. The sooner you start using it, the better. Use it 3 times a day and preferably while you are doing your exercises. This stimulator not only helps the nerves grow back, but it also helps to prevent the muscles from atrophying (withering away).

This is YOUR recovery, so you need to make it all happen. Your doctor and therapist probably have very little experience , if any, with C5 Palsy, so do your homework and don't let anyone tell you that recovery is not possible. It takes time (1 year or more in some cases). Don't get discouraged and keep fighting it. If you have questions, I am happy to help if I can (just PM me).

If I see any further improvements, or if I run across any info that is relevant, I will still keep this thread going. If you have C5 Palsy, post your experience on this thread. Make this a place where others can benefit from our experiences. C5 Palsy is a horrible thing to go through and information is hard to find.

How are you now? Have you continued to improve? I'm 13 weeks out from 3-level ACDF with bi-lateral C-5 palsy (right arm is the worst one) and little to no improvement despite my best efforts...my surgeon is saying that if there is no significant progress at my 6 month check-up he will link me with a nerve grafting surgeon at Mayo Clinic to get on the specialist's schedule for surgery. Luckily I can work from home and my husband has been willing to take on all I can't do-which includes driving and anything requiring lifting even the lightest weight. This is getting old fast and I'm actually getting a little scared it will never improve.

maribren - Sorry its taken me so long to reply, but I have not been checking this too often lately. I have improved some since last post. My left arm has full range of motion and about 80% strength back. My right arm has full range of motion (lifting out to the side is still hard though) and strength is about 50%. I would say that my shoulder muscles have recovered the least of all. My posterior deltoids are still the weakest of all.

Don't get too discouraged. You are still early in the process. At this stage, your existing (undamaged) nerves are starting to sprout new smaller nerves to help out where the larger nerves no longer exist. This takes time. The nerve roots are also growing back and this takes a long time.

The rule of thumb on nerve transfers is that they need to be done at about 6 months for the best chance of success. Some doctors will wait longer if they see any recovery happening.

A couple questions:

1. Did you have any spinal cord damage prior to the surgery?

2. Are you using a nerve stimulator?

3. Are you going to physical therapy?

What an awesome gentleman! I had surgery 11-15-17 and 7 days after surgery the C5 palsy began. I loved your layman's version definition of C5 palsy. I have many years of medical background and though I understand, your version was excellent! I had posterior cervical fusion and laminectomy/mass fusion. I felt it very strange I was a star patient until 6 days into my hospital stay I was transported by a maniac for a final CT scan before being discharged on the 7th day. The woman who transported me was out to get me(We shall call her "Hellga" to give you a visual)! She purposely went over a huge dent/floor damage that I pointed out to here getting into the elevator and I howled in pain. I have never howled a day in my life! I was balling my eyes out. She denied she did any wrongdoing and made it I think in one piece to the CT scan. Would you believe me if I told you she took me over the same exact spot on the way back to my room and this time the pain was so intense that I cried out and began sobbing. I stood up and she told me to sit down. I told her that I would not allow her to hurt me a 3rd time, (I shouldn't have let it happen a second time but I gave Hellga the benefit of the doubt). Of course, I made sure that the hospital was aware of what had been done to me and told the doctor the next day as well. Before being discharged about 12 hours after my trauma, all the usual neurological testing was done as it had been several times a day since surgery. I got home and noticed that whenever I used my left arm I was lifting my shoulder but it wasn't until the following day, 8 days out from surgery, when being handed a cup that I was reaching for it but my arm was not cooperating. My son asked what I was doing and I said I was waiting for him to hand me the cup. He said he was and at that moment I told him my arm is out as far as it would go. He got a little upset and panicky wondering whats wrong with mom. I told him my arm was probably tired and I didn't think about again until I tried to pull my pants up and thought this is not normal. For the sake of saving time, I will say that I ended up going to the ER for an MRI. The Neurosurgeon on call thought I might have a blood clot pressing on a nerve or something. MRI normal but was told I got C5 palsy and the rest is history. My pain is more discomfort than pain at this point. I've started PT and am religious about my exercises. I want to improve as soon as I can, I will be a first-time grandma in April and am planning to help care for my new grandson, I will need two good arms. Your progress is inspiring and your attitude is awesome. Your wife must be very proud of you, you're such a hard worker! I will keep reading here about your progress and if I have any significant changes I might even post them. Thank you very much!

Hey TheGirlGeek. Sorry to hear about your experience. As many of you know, the medical industry (who is supposed to put patients first) is broken. Care givers and doctors have gotten so jaded that they have forgotten the human side of the process.

As for your C5 Palsy, since it started 7 days after the surgery, you might take a little longer to recover. The general thought is that the longer it takes to start, the longer it takes to resolve. Since you only have it on one side, it would seem to me that you are only dealing with a nerve root problem (nerves that run down your arm) and not a spinal cord issue. That's a good thing. I would ask your therapist to start doing nerve stimulation therapy. As I have said throughout this post, nerve stimulation is one of the key therapies that you can do. One home exercise you can try is to get a paint roller and attach it to a pole. Stand facing a wall and use your bad arm to roll the paint roller up the wall. Use your good arm to help. I came up with this exercise because I needed a better way to isolate the deltoid. It worked pretty good for me.

Keep up the fight and it will get better. Don't let a few set backs discourage you.

Thanks for the post and keep us updated.

Buzzing sound or feeling?
I have the pins and needle feeling in my left arm...the entire arm, was worse when I laid down, it would wake me up...was suppose to get back sugery, but I knew I would not be able to get that enourmous back brace on by myself daily for 3mo....and I am afraid to go under the knife again....something is making have this feeling of not trusting the same surgeon again....