C5 Palsy
 

I had posterior decompression surgery at C4 - C6. After surgery, I developed C5 Palsy in both arms. Both arms are basically paralyzed.

Doctors say that in 70 % of cases, the function is regained, but I am afraid that mine is more severe than most cases and I will not get it back. All the doctors say that mine is the worst they have seen (both arms and complete inability to use arms).

One arm has started to regain movement, but the other arm is still completely paralyzed and has not improved ay all.

Has anyone else had this condition and can you share your experience (how long it took to get use back and how gradual was the recovery)?

Thanks.

After unsuccessfully trying to find information about C5 Palsy written in terms a normal person could understand, I decided to log my experience, so others can benefit. I also have read quite a few articles published by the NIH and posted on PubMed, so I have become quite knowledgeable on the topic. I have discussed my condition with 5 different neurologists, including one at the Cleveland Clinic. The doctors all said that I had a very severe case of C5 Palsy and they have never seen one this bad. This is long winded, but I hope this helps anyone looking for info.

On October 28th, 2015, I had posterior decompression surgery at C4-C6. After surgery I woke up with the normal discomfort that you would have from this surgery. Later that night in the hospital, my arms started to hurt. I had pain shooting down from my deltoids (shoulders) to my wrists. They said it was normal and they gave me some pain medication and I went to sleep. I woke up a couple hours later and my arms were very weak and over the next few hours they became completely paralyzed. I could move my hands and fingers, but from my shoulders to my wrists, I could not move at all.

I was in the hospital for three weeks in in-patient therapy. I did therapy and electronic muscle stimulation 3 time a day. My doctor seemed to think it was very temporary and said therapy would help. After three weeks I was discharged with no improvement. At home I had to have help eating, showering and using the restroom (my wife is a saint !!!).

Over the next 4 weeks, I began to see some improvement in my left arm and within 8 weeks, I had full range of motion in my left arm. It was very weak, but I could at least move it. My right arm was still paralyzed (I am right handed, so that sucked). The pain that runs down my arms was still very bad and I have to take 900 MG of Gabapentin (Neurotin) three times a day to keep it at least bearable. That is the max you can take in a day. After a while, my doctor also prescribed Nortryptaline to take with the Neurotin. That helped a lot to relive the pain.

I have done therapy every day, including the use of a home E-Stim unit. It is very important to do therapy every day (three times if you can). The E-Stim (electronic muscle simulator) is also very beneficial. Your muscles will atrophy, but the e-stim helps keep some contraction of the muscles to help limit the atrophy. Most insurance companies will cover this unit, but you can also buy them for a couple hundred bucks (it is worth the cost).

At 10 weeks, my rehab doctor started me on acupuncture using electronic currents on the needles. This is supposed to help keep the muscles stimulated, kind of like the E-Stim, but better.

Within three months (as I write this), I am still very weak in my left arm, but it is getting stronger each week. My right arm is still showing very little improvement and can only lift it about 10 degrees up from my side. I can now lift a gallon of milk with my left arm and put it on the top shelf of the refrigerator, but that was about as much weight as I can lift. At this point, I can at least drive using my left arm. I still don't drive much because I am afraid that I would not be able to make any fast maneuvers to avoid an accident.

My doctor said that at 3 months, the undamaged nerves will start to sprout new nerve branches to help move the muscles that are no longer getting a nerve signal. At about 6 months, the nerves that were killed and are regrowing, will start to reach the muscles again and I should then start to see more improvement. My doctors say that this should continue to get better, but there still is a chance that it may be permanent.

I will post weekly updates.

I hope you have had some independent second opinions , and a second look at surgical records. Just in case a mistake was made somewhere along the line.
Good to read you are improving.

Therapeutic /E stim info -
IFc stim ,TENS or EMS can be found on Amazon and other sites for under 100.00
Same for home Ultrasound around 70.00 on avg.

Hi Jastek,

Do keep Posting updates, it is very altruistic of you to share your story for those who come after.

Personally, I have 3 cervical spinal cord compressions, referred pain originally in right upper arm, now spreading to forearm and to left arm. Right forearm, hand and first 2 fingers are pins-and-needles numb due to C6 nerve root compression. I have just been referred to a Neurosurgeon by my Neuro, but surgery is really off the table due to my heart.

I look forward to reading more of your recovery.

Dave.

Yes, I have had several second and third opinions. All confirm that I have C5 Palsy. It is a known complication of cervical decompression surgery.

Basically, spinal decompression surgery removes bone or discs in order to make the spinal canal larger. C5 Palsy is caused mainly as a result of the spinal cord drifting backwards into the newly expanded spinal canal. When it shifts backwards, the nerves running down to the arms get stretched and become injured. Nerves do not like to be stretched !! Some nerves just get injured and heal, but others get injured and die. Those that die have to regrow back down to the muscles and that takes a long time (about 1 inch per month or longer). It can also be caused by a pre-existing injury to the spinal cord (myelomalatia or myelopothy). This pre-existing injury, combined with the shifting of the spinal cord, causes the nerves in the arms to get injured. It can also be caused by foraminal narrowing. The opening where the nerve roots come off the spinal cord and go down to the arms gets narrow from degeneration or osteophites (bone growths). When this opening gets narrow, it compresses the nerves going to the arms and they can't move when the spinal cord shifts backwards. This causes them to get stretched and injured.

Doctors are supposed to assess patients and determine if there is a risk of C5 Palsy and advise patients about the risk. There are also some precautions that can be taken to minimize the risk, but my doctor did neither. I had Myelomalatia, foraminal narrowing and my spinal canal was expanded significantly, so the shifting was substantial. I was doomed before surgery even started.

As I said, there is not much info out there on this, so I thought I would at least give future C5 Palsy sufferers a place to see how it plays out. I know how frustrating it is to have this condition and no place to get good info. Most doctors are aware of the condition, but have limited info.

Most C5 Palsy Patients see improvement within 2 - 3 months and are at full recovery by 6 months. Unfortunately, there are some who get more severe cases (like me) and it takes much longer. Some never get better (only about 30%).

End of week 13 - No real change on the movement or strength of my right arm, but I now have a new symptom. When I bend my head forward, my left arm buzzes (like an electrical shock) and my right big toe buzzes also. My doctor says it might just be some swelling that puts pressure on my spinal cord or the nerve root. Wants to watch it for a week and see if it resolves. If not, will order an MRI of the neck. Hopefully, this goes away..... I can't take another complication.

C5 palsy
 

J developed C5 P palsy as a result of spinal surgery at C4,5 and 6. My experiences were very similar to Jeff’s, but. only my right arm was affected -- that was bad enough. The palsy began after the second of 4 surgeries i underwent in 2013. -14. Woke up after the surgery unable to move my arm. The surgeons had few answers except that this was a rare side effect of surgery on the C5 vertebrate and it could take 6 months- a year to regain usage. They also admitted that some patients recover less than 100 per cent, They couldn’t predict how well i would do and referred me for occupational and physical therapy --- and that was what saved me. Also told me i had to be patient.

So i started to feel some improvement after about 3 months, but it took over a year for my arm to really be functional. i did my exercises religiously. Right now, i think its about 80 % recovered and i think that's as good as it will get, i can use it but itt's weaker than my left arm.

I also couldn’t find much info on C5 palsy. i found it interesting that there are screening procedures. i was never told about this by the docs, and they never told me about the possibility of this side effect occurring. Given the lack of info on C5 palsy, I think its important for patients to share their experiences, to hopefully move the research forward.

thank yo u for your explanation of C5 Palsy. it's the most understandable of anything i've read. I also found that many healtnh care professionals knew nothing about this conidition. The only group that did were the physical and occupational therapists I have worked with. They gave me my life back

Thank you Linda for sharing your experience. I agree that physical therapy is an absolute must for recovery. I have been told that the amount of recovery is dependent on the effort you put into therapy.

Week 15 - I saw some more improvement (not much, but I will take what I can get). While laying on my back (gravity removed), I can rotate my arm from down at my side to over my head without assistance. I can also make a snow angel movement on the wood floor without any assistance. 2 weeks ago, I could not do either without help. I still cannot raise my arm more than 10 degrees while standing. Gravity is too heavy...

My new symptom is still a mystery. MRI shows no new problems. Doctor thinks it is either swelling or foraminal narrowing that is causing the nerve roots to tug on the spinal cord when my head is tilted forward. She has prescribed cervical traction to see if that helps. If it does, we know that the foraminal narrowing is the likely cause. We will see....

This thread has been a great help.
 

A week ago I saw in this thread the posting from Linda. after joining I saw the others. I had anterior cervical discetomy C4-C5 & C5-C6 with fusion. When I woke up from surgery I could not move either shoulder. I have some function from the elbows down but zero at the shoulders that will help in my daily life. 3 almost 4 weeks out of surgery where I was told and I quote "the national average for ccomplications is 1% but mine is 0%" and no discussion at all that this could happen I have had to fight for services. I was released to home with no visiting nurses lined up, I had to fight with the surgeon to even get therapy and now he is saying well it could take a year or more to fix! I have leave from my jobs til March 25th so needless to say with no income coming in I need to get better quick. I have contacted a lawyer due to the lack of concern on the doctors part. I was up front with him that I had suffered the pain getting worse over 16 yrs, that I knew about the disc degeneration I had, that I had had steroid shots over the years that obviously havent worked etc. The least he could have done was be up front with me but obviously he was nat expecting this complication and in fact has tried to say that I must have been weak before the surgery. Grrrrr. I have started OT and need to get to the point where I can dress myself and drive so that I can go out of home for more aggressive therapy. It is crucial that I regain the use of my arms because my job requires me to be physical. Heres to getting better.

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.

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.:mad:

Buzzing foot
 

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.
:hug:

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.:mad:

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........ :mad::mad::mad:

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.

Not sure if I'm posting my comment correctly on here...Im on my 6th month of c'5 palsy, neither my doc, surgeon, Pt ladies had ever dealt, seen or heard of c-5 palsy, a friend of my daughters had it happen to him, he said it took 21mo to recover and not 100%, I have to get the ball rolling for disability because it takes such a long time...I regret having this surgery, its been a life changing one...In my line of work, there is no light duty positions, Ive had the horrible buzzing in my left arm, is worse while im sleeping, it wakes me up, I asked the surgeon and he had no answer...thanks for the updates, your right, there isnt much info out there...the surgeon never told me this was a possibility....it has been very frustrating, the depression was the worst, I am not one to ask for help and here I couldn't get a shirt on or off, button my pants or even comb my hair, you get creative with your left arm, Im rt handed also...my left arm has been hurting very bad, not sure why this has started happen now...thinking maybe
Over doing it since I can't use my right arm....thanks for the updates...very helpful

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....

Ohio49 - The buzzing in your arm may be L'hermittes sign, but if you only have C5 palsy, it is probably something else. When your nerves start to grow back, they do some very strange things (like buzzing and twitching). Hopefully, that is what's causing your buzzing.

Have you had an EMG done by a neurologist lately? An EMG can determine if the nerves are regenerating. This growth will show up as something called "growth potentials". The neuro will be able to tell if the amount of regrowth could be the cause of the buzzing. They should also do a MRI to see if there are other issues like L'hermittes.

Are you using a nerve stimulator? It can also help with things like pain, buzzing and twitching.

By the way, get a second opinion before having any surgery, especially a 2nd surgery.

Newbee here with C5 Palsy
 

Hi all

I wanted to share my experience thus far as information on C5 palsy seems scarce and what IS out there contain various prognosis and outcomes.
I've read many stories on this horrible dilema, some uplifting and some make me feel quite fortunate I'm at where I am.

I had a posterior laminectomy at C5-C6 Oct. 2016 to remedy extreme spinal cord compression which was stealing my leg function as well as effecting both arms in very negative ways(numbness, coordination, strength)...
I would lose touch with my feet as if they were'nt even there.
Could move them if I thought about it but it was as they if they didn't exist, especially when driving...SCARY!

Any ways, after surgery that night in bed and unbelievable pain, I experienced just ripping, burning, unbearable type pain across my left shoulder.
Long story short, next day my left deltoids were completely dead as was a portion of my bicep and also the radial muscle that runs from your bicep across the top of the forearm and into the wrist...

My neurosurgeon sent me immediately for another MRI to be sure there were no problems with the fusion or hardware shift (rods and screws) and the MRI looked GREAT, spinal cord completely decompressed was the good news, most likely severe tethering of the nerve root, bad news and causing what he explained to me as being something called C5 Palsy...

Without getting too windy here I just want to quickly sum up how things progressed and hopefully this will lift some you out theres spirits.

MONTH 1: Pure hell, just the horrible pain one would expect from a posterior approach to the spine, a place my NS said God did not want us to be .
Around day 30, pain was starting to get less with plenty of Norco but the left arm and deltoids were useless mostly. Could not hold a dinner plate, a pot of coffee. Couldnt even throw the blankets off my body without the other arm. Had to get creative to learn to pull up my pants. Putting a tee shirt on was a joke. I feel for some of you out there. I've read your stories, I at least had a fairly healthy right arm with all the normal pains, numbness, tingle of course, but functional.
C5 palsy is not just physically debilitating, but emotionally devastating.
I was soo depressed...
I'm a 55 year old in good shape, 180lb, 5-10, and work on an underground crew which demands strength and agility...I felt like this was all gone and I was doomed.

MONTH 2: Pain was still present and getting out of bed was a little easier.
BIZZARO! So I was sitting on the couch watching a movie with my girlfriend and BTW my savior as she has helped me so much!...and out of the blue I got this painful JOLT shoot across my left shoulder. Much like the first night after surgery. Something felt different though, I looked at my girl and said "Babe, something weird just happened"...So I stood up and started moving things around a little to see if there were any changes. Just like they say, there will be some spontaneous resolve at times. It dawned on me that my forward deltoid was firing. I could lift my arm so much easier, not without lots of drag mind you as the rear deltoid was still dead, but I realized later that night as well as in the morning that putting a tee shirt on and off became almost effortless.
I want t mention that at this point I started a physical therapy program (very light) just to keep the range of motion going...VERY IMPORTANT
I got a little cocky even at the end of month 2 and thought I could chop a little firewood as it was December now...MISTAKE...I was so worried that I may have fouled up my fusion due to pain and what not...
IMPORTANT: Take it all real easy, lots of rest, physical therapy and patience.
PS...a little Norco and an occasional beer didn't hurt either!

MONTH 3: So January 2017 came...Happy New Year!
Still doing physical therapy, BTW this was all done at home after an initial visit to a PT guy and had some direction.
I've been pushing some light weights as my NS has given me the go ahead to push 30 lbs as my last xray looked good regarding fusion.
My left arm is still very weak and deltoid in the rear is not firing.
I must say though, that I've been experiencing alot of nerve burners on my left shoulder deltoid area and alot of muscle spasm at the failing bicep and forearm...I'm convinced that this is nerve regeneration going on as its a very slow process and even slower depending on how bad your initial nerve damage may of been during surgery. Why do I say this?

Today is Feb. 2017...Over the last week I have had the following improvement
Three weeks ago I could only curl a 1lb weight with my left arm due to the forearm and bicep failure...today, for the first time I curled a 5lb bar, 3 sets, 10 reps. I look at my forearm and can actually SEE the muscle flexing where there were was nothing a week ago. Its firing, but weak. More PT!!!
Its like they say, spontaneous resolve can happen...
Today during my PT session, I could feel ease in lifting with the rear deltoid;
I think its slowly coming back now as well...my NS told me that MOST C5 palsy cases will resolve within 3-6 months...
All I can say to everyone is stay positive, do any physical therapy you can, and believe that will get better because it can...

I'm going to keep working on strength now and will go back to work April 4th on a months light duty to start...I'll stay in touch...any feedback, questions from you all experiencing this what I call, "streak of bad luck" will be answered if you'd like....Take care all for now...Tim

Tim,

It's great to hear you are getting such good results in your recovery. Your case seems to be following the 6 month recovery timeline. From what you have told us, it looks like you are headed to a full recovery.

It's good to see more posts here, so others can see that full recovery is possible. Keep up the fight! Good luck.

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

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.

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.

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?

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...

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

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.

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.

Thank again for your input. I had a electrical stimulation treatments at my PT this morning. No miracles (and weird feeling) but the PT said I do have some enervation in my deltoids which is a bit encouraging. He suggested getting my own machine and using it daily along with targeted exercises. Did you buy one and if so which one? There seem to be a million options on Amazon.