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C5 Palsy

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Old 05-17-2017, 02:53 PM   #31
kdohn
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Hi Jack,

My father recently had spinal cord decompression surgery and is experiencing C5 palsy or so John Hopkins Neuro Surgery has stated. If possible, I think it would really help for my Father to speak to someone who has gone thru something similar. You can reach me at 914-826-7793. We would like to find out who you saw at the Cleveland Clinic. Please let me know if you are open to speaking to him. We have had a hard time lifting his spirits and he is very frustrated about the lack of use of his left arm. His surgery was in November and his right arm has improved. Thanks in advance, we just feel helpless.

Best,
Kelly
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Old 05-19-2017, 02:36 PM   #32
Jastek
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Kelly,

I saw Dr. Wilson at the Cleveland Clinic. He is not a neurologist, but works in the Adult Neurology Dept. and is very good. Unfortunately, he is in high demand and it takes months to get an appointment with him.

I am happy to speak to your father.
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Old 06-16-2017, 03:56 PM   #33
maribren
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Default ACDF c-5 Palsy

I am 13 weeks out from 3-level ACDF (3/15/17) with bilateral c-5 palsy. Prior to surgery I was experiencing loss of function in my left arm due to the collapse of my cervical disc but my right arm was mostly functional. After surgery my right arm was also completely dysfunctional and the left arm remained the same. The surgeon said that monitoring during surgery suggested I would get full function back but so far things aren't improving significantly. I can use my hands and arms below the elbows but can't raise either arm more than 20%--so I can't really drive or even wash my own hair! I am so grateful for the information on this thread. I will post my progress.
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Old 06-17-2017, 05:14 PM   #34
maribren
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Quote:
Originally Posted by Jastek View Post
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.
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Old 08-18-2017, 01:59 PM   #35
Jastek
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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?
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Old 08-18-2017, 02:44 PM   #36
Jastek
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Week 94 ( 1 year & 9 months) - I will say that some recovery is possible after 1 year. After more research and talking to rehab doctors, it appears that 90% of recovery happens in the first year and 10% happens in the following 2 years (3 years total).

I have continued to see some progress in muscle strength after 1 year. I have full range of motion in both arms (right side is still tight when raised out to the side). Strength is about 80% in left arm and 50% in right arm. Some of the muscle strength improvement is purely from building up the muscle tissue and has nothing to do with more nerve growth, but it is still improvement. My right posterior deltoid has been very stubborn and not getting much strength back. I was told that not all muscles will recover the same and some muscles may never come back. The nerve branch to the posterior deltoid must have not made it back.

Unfortunately, I still have not seen any real improvement in the pain. I have switched over to Lyrica and taking the max daily dose (200mg three times per day). This just makes the pain tolerable. My doctor still cannot say whether or not this will ever go away. I still don't know which is worse, the pain or the weakness....

I am holding on to the idea that more improvement is possible and the fight is not over just yet...
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Old 09-13-2017, 10:56 AM   #37
maribren
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Default 6 months out and little improvement

I am six months from surgery and despite PT and hard work I have had very little improvement in my bi-lateral palsy. I can only dress by utilizing a lot of strategies involving various props for my terribly weak arms. Things I truly love like gardening and painting are impossible to enjoy. I am happy to hear that improvement can continue for a long time since I worried that anything that doesn't come back soon is gone forever. Thank you for your encouraging posts and information. I'll keep working hard...I am grateful that for me there is very little pain and some hope
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Old 09-13-2017, 01:17 PM   #38
maribren
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Quote:
Originally Posted by Jastek View Post
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?
No one ever suggested I had sustained spinal cord damage, though I struggled with functionality issues for months before I realized PT wasn't going to be the answer. I was told without the fusion surgery spinal cord surgery would likely occur with potentially devastating results.

I am going to physical therapy, and doing it at home religiously, but the professionals I've seen said that there isn't empirical evidence a nerve stimulator will help. I have had some improvement but it is so painfully slow it is hard to track and to date has not been enough to stem my fear of permanent disability. Your posts help me believe that though the process is gradual I can recover most of my functionality.
Thanks again for responding. As you can see I also haven't checked this for awhile.
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Old 10-14-2017, 06:34 PM   #39
Jastek
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Trust me, a nerve stimulator WILL help. I am frankly shocked that your doctor has not prescribed one. It does two things. Keeps your muscles from atrophying and it helps guide the never growth.

I would look on the Pubmed web site and you will see many studies that prove that.

Yes, it is painfully slow. Keep fighting. It will come back , maybe not 100%, but it will come back.
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