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Jastek 10-20-2017 10:55 PM

I bought one from local rehab supply company. About $800, but was covered by insurance.

Make sure it can do "Russian" stimulation. Otherwise, it's just a tens unit and that is not what you need. Ask your PT to recommend a supplier.

If you want details of the one I have, let me know.

barbara thorn 1 10-22-2017 05:22 PM

"Streak of Bad Luck"
 
Quote:

Originally Posted by Bloosman21 (Post 1236029)
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

October 22/2017/
I too developed C5 Palsy after anterior C4-5, C5-6 fusion Sept. 5th. 2017. Arm was fine before surgery, now left upper arm and deltoid is paralyzed.
Never was told this could happen. NS said arm would be 3-4 weeks before able to use again. It will be much longer than that. I am so thankful for people who tell their story to the public that this also happened to them.
It has been month and half since surgery and I am in PT 3x week.
My left upper arm has improved slightly, by that I mean, I can lift it slightly from my body. Not able to raise arm yet independently. Working very hard to regain strength in shoulder and deltoid. PT jut told me it will be another couple of months before full use of my arm. Arm still very weak, but better then right after surgery.
Thank you for giving me hope this will get better. Will just take a lot of time.
Will write again. Barbara

maribren 10-22-2017 11:21 PM

Quote:

Originally Posted by Jastek (Post 1253205)
I bought one from local rehab supply company. About $800, but was covered by insurance.

Make sure it can do "Russian" stimulation. Otherwise, it's just a tens unit and that is not what you need. Ask your PT to recommend a supplier.

If you want details of the one I have, let me know.

If you don't mind sharing the details of yours I would be greatly appreciative. No insurance here but I will pay. My PT didn't really have a recommendation. He suggested I asked someone who had a good outcome with the use of a specific model.

Jastek 10-25-2017 04:27 PM

1 Attachment(s)
It is made by SpectraMed. It the Polaris Athlete (don't have a model number), but picture is attached. You can also see the settings that I use. These settings came from advise of by rehab doctor and me trying different settings. It is pretty small, about the size of a deck of cards, but it is powerful. Make sure you get one that has 2 channels and Russian stim capability. To get one that has high current output capability (Russian stimulation), you have to have a prescription from a doctor. Anything that says "TENS" is probably not what you want. Amazon wont sell one because of the prescription requirement. Here is a link to one that looks similar to mine Polaris TENS | Dual Channel TENS | Medi-Stim, Inc..

Peter24 11-01-2017 11:12 PM

1 week post surgery
 
Thanks Jastek, if found your post very helpful in a better education of my issue. I had Posterior surgery a week ago. Right cervical three four five Hemilaminectomy, foraminotomy. (no fusion) 60 year old male.
While in recovery I found no use of my right deltoid. Since Im new to C5 Palsy I would be interested in anyone’s experiences. Are exercises useful in the regrowth of the nerves or is it more to keep from getting a frozen shoulder. I read one white paper that talked about the use of steroids, has that been useful for anyone? Also the fact that i had no fusion, positive for rehab?

Serimile 11-09-2017 10:05 AM

New to this right side c5 palsy
 
I've read this thread from the beginning and there are a lot of helpful things.
I had an anterior c5 c6, c6 c7 discectomy and fusion in 2014 with no complications and a posterior c2 c3 foraminotomy and c3 c4 lami with c3 c4, c4 c5 fusion in 2017 that resulted in a c5 right side radiculopathy immediately upon awakening from anesthesia which was "corrected" with a c5 right side foraminotomy 9 weeks later. I am now 6 weeks post op from the corrective surgery and getting pt and ot 3x a week but seeing little progress.
I have the deltoid and bicep paralasys and did not get any therapy during the 9 weeks between surgeries so I've had terrible muscle atrophy. I am wondering if anyone has had a similar experience and if they have had any progress and if they have followed up with any legal actions.
Sorry I got to writing this before an appointment and didn't get to finish all my thoughts as it takes a while to type...

TheGirlGeek 12-01-2017 05:33 AM

You inspire me!
 
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!:)

Jastek 12-18-2017 10:45 AM

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.

Jastek 12-18-2017 11:14 AM

Quote:

Originally Posted by Serimile (Post 1254375)
I've read this thread from the beginning and there are a lot of helpful things.
I had an anterior c5 c6, c6 c7 discectomy and fusion in 2014 with no complications and a posterior c2 c3 foraminotomy and c3 c4 lami with c3 c4, c4 c5 fusion in 2017 that resulted in a c5 right side radiculopathy immediately upon awakening from anesthesia which was "corrected" with a c5 right side foraminotomy 9 weeks later. I am now 6 weeks post op from the corrective surgery and getting pt and ot 3x a week but seeing little progress.
I have the deltoid and bicep paralasys and did not get any therapy during the 9 weeks between surgeries so I've had terrible muscle atrophy. I am wondering if anyone has had a similar experience and if they have had any progress and if they have followed up with any legal actions.
Sorry I got to writing this before an appointment and didn't get to finish all my thoughts as it takes a while to type...

Serimile - Not sure if the foraminotomy "corrected" your C5 Palsy. Once the nerve is damaged, the only way to correct it is for the nerve to grow back, unless a nerve transfer or nerve graft is done. The foraminal narrowing may have been a contributing cause of the C5 Palsy and that is why they did the foraminotomy. That would have taken the pressure off the nerve root.

Sine you had no therapy in the 9 weeks immediately following surgery, your muscles had no activity and started to atrophy. Keep up the PT. I did not see any real improvement until 3 months, so don't get discouraged.

On the legal front, don't get your hopes up. I live in Ohio and like a lot of states, the laws were against us. I talked to 3 of the top attorneys in my area and all three said the same thing. They agreed that the doctor screwed up, but since my employer continued to pay me during my recovery, the case was not worth the time and effort to get a verdict in my favor. In order to be successful in a law suit against a doctor, you have to prove that they violated the "standard of care" established for doctors. That is a hard thing to prove. In Ohio, malpractice cases have a $250,000 cap on verdicts. This means that the most I could recover from the doctor is $250,000 (absolute bull %$#@). So I was not able to go after the doctor. I have, however, started a campaign to drag this doctor and the hospital through the mud. Might not make a difference, but it feels good telling everyone what a quack this guy is....

Good luck to you and keep pushing on. Don't get discouraged by the delay in recovery. It takes time.

Thanks for posting and keep us updated on your recovery.

Jastek 12-18-2017 11:25 AM

For those of you who decide to share your experience here, please keep us updated on your progress. As much as we like to hear your initial story, it is very helpful to hear how your recovery goes. This post is all about helping people understand C5 Palsy and your recovery will help others understand the process.

Jastek 12-18-2017 11:53 AM

Quote:

Originally Posted by Peter24 (Post 1253923)
Thanks Jastek, if found your post very helpful in a better education of my issue. I had Posterior surgery a week ago. Right cervical three four five Hemilaminectomy, foraminotomy. (no fusion) 60 year old male.
While in recovery I found no use of my right deltoid. Since Im new to C5 Palsy I would be interested in anyone’s experiences. Are exercises useful in the regrowth of the nerves or is it more to keep from getting a frozen shoulder. I read one white paper that talked about the use of steroids, has that been useful for anyone? Also the fact that i had no fusion, positive for rehab?

Peter24 - The exercises really serve the main purpose of keeping your muscles from atrophying and retraining the muscles as they get reinervated. In a small way, they also help the nerves grow. The muscle activity creates electrical signals that help guide the nerves to grow back through their original path.

Steroids are usually only used as an initial treatment to prevent swelling, which can minimize the damage to the nerves. I have not heard of using steroids as an on-going treatment. I would be interested in reading the article.

I don't think your lack of a fusion helps your recovery much. Your recovery is all about nerve regeneration and a fusion (or not) should not impact the nerve's ability to re-grow.

Good luck on your recovery !!

barbara thorn 1 12-18-2017 09:47 PM

"Streak of Bad Luck"
 
It has been 3.5 months since my cervical fusion of C4-5, C5-6 plus plates and screws. Woke up from surgery with my left deltoid and Lt shoulder completely paralyzed. Arm was normal before. Had surgery to stabilized my neck so this would never happen. Was never informed this was a possibility.
Since surgery I have been in intense PT. After doing 100's of exercises every day, my arm is about 70% improved. Can now raise my arm 60% up towards my head. Arm still very weak. Can not hold much weight.
This has thrown me emotionally and mentally. I had a job in nursing when this all started. Right now I don't know if I will be able to return.
Still have nerve pain in Lt upper arm, especially when I try to cut gabapentin back.
Today was my last day of going to PT. Will still have to do many exercises at home, trying to get my arm back. There no guarantees.
Since Sept I have talked to many Dr's and they have never heard of this.
It does not happen often.
I feel it will take several more months of PT at home to get my arm back if possible. Very discouraging.
So happy I can read other people who had this surgery.

Peter24 02-05-2018 08:15 PM

Im 3 months into C5 PALSY, my story sounded similar to Tim's. starting with no movement in my right shoulder and arm I now have full range of motion but my rear deltoid is still not firing at all, and still have some weakness in my bicep. My question for any of you is do you have a tightness where you have the palsy? My shoulder feels like its held down by rubber bands that always wants to force it back to its resting position. My arm after I lift 5 pounds 10 times feels like i just did 100 curls with heavy weights, the arm becomes very tight. Thank you and good luck to all

Jastek 03-17-2018 08:21 PM

That is the way my deltoids feel also. Mainly in rear deltoids. Feels like tight burning, similar to what it feels like when you are lifting weights to the point they start burning. That's because some of the nerve fibers are not firing, so the muscle that is firing has to work harder.

Spock433B 02-15-2019 12:48 PM

Anterior decompression laminectomy and resultant C5 palsy
 
Greetings all,

First I'd like to thank everyone who has shared his or her experience with this frustrating condition. It's easy to feel isolated, baffled and frustrated when dealing with this complication since so few in the medical profession can or are willing to admit that it's largely a "hurry up and wait" situation. I'll offer my experience with cervical spinal surgery and the resultant C5 palsy as well.

I was diagnosed with severe spinal stenosis (after EMG testing and MRI) in July, 2018. The symptoms had been coming on slowly for years but I disregarded them, writing them off as I suspect many of us do as the results of "aging" or "overdoing it" or some such excuse. The stenosis was so severe that conservative treatment was not on the table. Surgery--anterior laminectomy and foraminotomy between C3 and C7--was scheduled for Dec. 20.

The surgery was uneventful. I was fine for the one day and two nights I was in hospital. The wound was extremely painful, of course, but at that point nothing untoward was present. I was discharged on the 22nd.

The first two days at home were much the same as in hospital. In the wee hours of the 24th I awoke with pretty severe, cramping pain in the upper arms, particularly the bicep on the right side. I didn't think much of it as it was time for painkillers anyway. In taking the medication I noticed that my right arm was very weak and wouldn't rise all the way. I thought it odd but carried on, thinking it was a post-surgical symptom.

In the wee hours of Christmas morning I awoke and the right arm was 100% non functional. I had normal hand function and no trouble grasping or holding things but the arm simply wouldn't move no matter what. I could neither rotate the palm upwards or raise the arm at all. I was told by my surgeon's answering service--rather rudely, merry xmas--to go to ER right away, and that's where we spent Christmas day. An MRI showed the surgery was a success: my spinal cord was free and no longer stenosed, but the telltale signs of myelomalacia (essentially a bruise on the spinal cord) were
visible on the cord at the level of C5. I was prescribed dexamethasone, a steroid, and sent home...no diagnosis.

At my surgical follow up on January 6 the surgeon told me I had a C5 palsy, that it happens to about 5% of anterior surgeries, and that it pretty much heals on its own in time but occupational and physical therapy are used to help combat the muscle atrophy in the bicep and deltoid muscles on the right side, which are those primarily affected by damage. Jastek in this forum has succinctly and beautifully described why the palsy occurs so I refer to his posts for an explanation as to what causes it.

After that the confusion began. We spent three frustrating weeks just trying to get the surgeon's office to write proper orders for therapy so insurance would cover the work done...each day that passed was another day of no therapy and more atrophy. The second follow up with the surgeon found him changing all his numbers, percentage-wise, of how many suffer from this complication...suddenly it was "very common" following this surgery. Needless to say this did nothing to boost my confidence in this man and the doubts began. My impression is that he's just not seen many with this complication and it's kind of hit-or-miss. I should probably mention here that, like some of you, I was not warned of this potential complication before surgery.

I'm evidently a unique case to the therapists as well...in their combined 35-plus years of combined experience they've not dealt with a post surgical C5 palsy. They did their research and have me on isometrics currently to get some muscle back...the biceps and deltoid are just out of commission. I've seen small improvements since the therapy began two weeks ago but the right arm is still largely useless. It's impossible to eat with that hand as I cannot lift utensils to my mouth. Brushing my teeth can be done only if I hold the brush in the right hand and then use the left to do the work. Driving isn't too hard but I fatigue easily--or rather the arm does--and I'm not confident while doing it, so I keep trips short and near to home to build confidence at this point. Chores are a challenge, particularly folding laundry. Getting dressed: pulling on t-shirts, buttoning, zipping up, etc. are comically frustrating.

It seems the more I get into this the more contradictory information seems to pop up. The surgeon harps about electrical stimulation but the therapists are more dubious for this issue...and we've run into the same issue trying to order a unit from a medical supply house...the surgeon's office drops the ball on providing notes and charts for insurance clearance.

I go to my OT sessions twice weekly and do my 'homework,' mostly isometrics at this point, to help at home. Religiously. When the arm fatigues it grows 'heavy' and feels like it's done. In the last week I've begun to notice L' Hermitte's syndrome as well but mine is not frightening or painful as some seem to be...it's unsettling until you know what it is and that it will pass as healing progresses.

I can tell you that I wish the surgeon had warned me of this potential complication as it's really changed my life. I am not working presently; I've been a teacher for 24 years and thankfully had 80 days of paid leave stored up so I've been able to use them. In that sense I feel very lucky. With regards to the medical profession I'm not feeling so positive. It just seems that there isn't a great deal of information out there about this so that those afflicted feel isolated and frustrated and fearful. I got the impression that several people I spoke with thought I was faking or exaggerating until an examination occurred.

I hope we all are in the roughly 70% who recover full or nearly full use of our limbs despite dealing with a profession that really doesn't seem to know much about our issue or how to deal with. Nerve issues are notoriously fussy and dealing with them frustrating...but at least we're not alone on here.

I'll post updates as my therapy continues so you can have this guy's experiences.

Spock433B 02-15-2019 01:15 PM

Anterior decompression laminectomy and resultant C5 palsy
 
Whoops. In reading my post I see that repeatedly said 'anterior' when I should have said 'posterior.' Apologies. It would be pretty tough to perform a laminectomy from an anterior approach :)

kiwi33 02-15-2019 02:14 PM

Hi Spock433B

Welcome to NeuroTalk :).

I am sorry to read about what you are experiencing (it is something that I know little about).

I hope that you will be able to make progress.

Best wishes.

Jastek 04-16-2019 02:54 PM

Spock433B,

A couple things:

1st, hopefully you have gotten approval for the muscle stimulator, but if not scream at your doctor until he gets it approved. It is the most important part of your recovery. Everything else helps, but this is the most effective in keeping the muscles from becoming atrophied. Once they atrophy for an extended period of time, the tissue turns to scar tissue and cannot come back.

2nd, if you have any questions or just need some encouragement, please post it here or send me a message through my profile.

Good luck. Staying positive (as hard as that is) is going to help. Please keep us posted.

Patricia Cox 05-10-2019 06:22 PM

C5 palsy response
 
[QUOTE=Jastek;1185910]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.[/QUOTE
My husband just was diagnosed with bilateral c5 palsy. His is also severe. His right arm rates a 0 in many tasks with the other from 1 to 3. Very scary stuff. Did you try to get a 2nd opinion to see if more can be done. He was an athlete. Driving will be impossible for months. Wow. Your post showed up when I Googled.

Patricia Cox 05-10-2019 07:11 PM

My husband's recent diagnosis of bilateral c5 palsy
 
I will try to write more about my husband or get him to write about himself.
This site is interesting, but scary, as this is a new journey as his surgery was only a few weeks ago. We are getting some support in home health.
Wondered how many people got second opinions. I noticed in Japan they redid surgery at times in hopes of a better outcome. Anyone heard of that here?

]It has been 3.5 months since my cervical fusion of C4-5, C5-6 plus plates and screws. Woke up from surgery with my left deltoid and Lt shoulder completely paralyzed. Arm was normal before. Had surgery to stabilized my neck so this would never happen. Was never informed this was a possibility.
Since surgery I have been in intense PT. After doing 100's of exercises every day, my arm is about 70% improved. Can now raise my arm 60% up towards my head. Arm still very weak. Can not hold much weight.
This has thrown me emotionally and mentally. I had a job in nursing when this all started. Right now I don't know if I will be able to return.
Still have nerve pain in Lt upper arm, especially when I try to cut gabapentin back.
Today was my last day of going to PT. Will still have to do many exercises at home, trying to get my arm back. There no guarantees.
Since Sept I have talked to many Dr's and they have never heard of this.
It does not happen often.
I feel it will take several more months of PT at home to get my arm back if possible. Very discouraging.
So happy I can read other people who had this surgery.[/QUOTE]

Patricia Cox 05-10-2019 07:22 PM

My husband's newly disagnosed C5 palsy
 
Don't know if I am doing this correctly. It is nice to able to read about your similar situation. Maybe my husband will get involved and contact you.
Quote:

Originally Posted by Spock433B (Post 1272506)
Greetings all,

First I'd like to thank everyone who has shared his or her experience with this frustrating condition. It's easy to feel isolated, baffled and frustrated when dealing with this complication since so few in the medical profession can or are willing to admit that it's largely a "hurry up and wait" situation. I'll offer my experience with cervical spinal surgery and the resultant C5 palsy as well.

I was diagnosed with severe spinal stenosis (after EMG testing and MRI) in July, 2018. The symptoms had been coming on slowly for years but I disregarded them, writing them off as I suspect many of us do as the results of "aging" or "overdoing it" or some such excuse. The stenosis was so severe that conservative treatment was not on the table. Surgery--anterior laminectomy and foraminotomy between C3 and C7--was scheduled for Dec. 20.

The surgery was uneventful. I was fine for the one day and two nights I was in hospital. The wound was extremely painful, of course, but at that point nothing untoward was present. I was discharged on the 22nd.

The first two days at home were much the same as in hospital. In the wee hours of the 24th I awoke with pretty severe, cramping pain in the upper arms, particularly the bicep on the right side. I didn't think much of it as it was time for painkillers anyway. In taking the medication I noticed that my right arm was very weak and wouldn't rise all the way. I thought it odd but carried on, thinking it was a post-surgical symptom.

In the wee hours of Christmas morning I awoke and the right arm was 100% non functional. I had normal hand function and no trouble grasping or holding things but the arm simply wouldn't move no matter what. I could neither rotate the palm upwards or raise the arm at all. I was told by my surgeon's answering service--rather rudely, merry xmas--to go to ER right away, and that's where we spent Christmas day. An MRI showed the surgery was a success: my spinal cord was free and no longer stenosed, but the telltale signs of myelomalacia (essentially a bruise on the spinal cord) were
visible on the cord at the level of C5. I was prescribed dexamethasone, a steroid, and sent home...no diagnosis.

At my surgical follow up on January 6 the surgeon told me I had a C5 palsy, that it happens to about 5% of anterior surgeries, and that it pretty much heals on its own in time but occupational and physical therapy are used to help combat the muscle atrophy in the bicep and deltoid muscles on the right side, which are those primarily affected by damage. Jastek in this forum has succinctly and beautifully described why the palsy occurs so I refer to his posts for an explanation as to what causes it.

After that the confusion began. We spent three frustrating weeks just trying to get the surgeon's office to write proper orders for therapy so insurance would cover the work done...each day that passed was another day of no therapy and more atrophy. The second follow up with the surgeon found him changing all his numbers, percentage-wise, of how many suffer from this complication...suddenly it was "very common" following this surgery. Needless to say this did nothing to boost my confidence in this man and the doubts began. My impression is that he's just not seen many with this complication and it's kind of hit-or-miss. I should probably mention here that, like some of you, I was not warned of this potential complication before surgery.

I'm evidently a unique case to the therapists as well...in their combined 35-plus years of combined experience they've not dealt with a post surgical C5 palsy. They did their research and have me on isometrics currently to get some muscle back...the biceps and deltoid are just out of commission. I've seen small improvements since the therapy began two weeks ago but the right arm is still largely useless. It's impossible to eat with that hand as I cannot lift utensils to my mouth. Brushing my teeth can be done only if I hold the brush in the right hand and then use the left to do the work. Driving isn't too hard but I fatigue easily--or rather the arm does--and I'm not confident while doing it, so I keep trips short and near to home to build confidence at this point. Chores are a challenge, particularly folding laundry. Getting dressed: pulling on t-shirts, buttoning, zipping up, etc. are comically frustrating.

It seems the more I get into this the more contradictory information seems to pop up. The surgeon harps about electrical stimulation but the therapists are more dubious for this issue...and we've run into the same issue trying to order a unit from a medical supply house...the surgeon's office drops the ball on providing notes and charts for insurance clearance.

I go to my OT sessions twice weekly and do my 'homework,' mostly isometrics at this point, to help at home. Religiously. When the arm fatigues it grows 'heavy' and feels like it's done. In the last week I've begun to notice L' Hermitte's syndrome as well but mine is not frightening or painful as some seem to be...it's unsettling until you know what it is and that it will pass as healing progresses.

I can tell you that I wish the surgeon had warned me of this potential complication as it's really changed my life. I am not working presently; I've been a teacher for 24 years and thankfully had 80 days of paid leave stored up so I've been able to use them. In that sense I feel very lucky. With regards to the medical profession I'm not feeling so positive. It just seems that there isn't a great deal of information out there about this so that those afflicted feel isolated and frustrated and fearful. I got the impression that several people I spoke with thought I was faking or exaggerating until an examination occurred.

I hope we all are in the roughly 70% who recover full or nearly full use of our limbs despite dealing with a profession that really doesn't seem to know much about our issue or how to deal with. Nerve issues are notoriously fussy and dealing with them frustrating...but at least we're not alone on here.

I'll post updates as my therapy continues so you can have this guy's experiences.


Patricia Cox 05-11-2019 12:52 AM

wife of c5 palsy patient
 
My husband is only 4 weeks out with bilateral. He is already frustrated. Right arm has little function. Left is more useful except that he had some numbness in his fingers before surgery and it is worse now but of course he is right handed. Neither can go to the top of his head or get behind him. He doesn't have any one arm that is close to normal. He can't dress independently or get out of bed. His scores ranged from 0 to three.
Waiting around is going to be hard.
His surgeon did talk about nerve transfers. There was no timeline yet.

We are getting a little home health care, but mostly they have not given us much we can do to make things easier. The exercises will be helpful eventually. I have to help him even lift his arms for some of them.

I have read a little about the stimulator. Reading about putting in the effort has halped as well.

I think you should recover faster. Shoulders should be soon.
My husband can do nothing with biceps. Lost all strength. That seems to come later.



Quote:

Originally Posted by maribren (Post 1244889)
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.


Spock433B 06-22-2019 10:28 AM

Anterior decompression laminectomy and resultant C5 palsy
 
Quote:

Originally Posted by Patricia Cox (Post 1275301)
My husband is only 4 weeks out with bilateral. He is already frustrated. Right arm has little function. Left is more useful except that he had some numbness in his fingers before surgery and it is worse now but of course he is right handed. Neither can go to the top of his head or get behind him. He doesn't have any one arm that is close to normal. He can't dress independently or get out of bed. His scores ranged from 0 to three.
Waiting around is going to be hard.
His surgeon did talk about nerve transfers. There was no timeline yet.

We are getting a little home health care, but mostly they have not given us much we can do to make things easier. The exercises will be helpful eventually. I have to help him even lift his arms for some of them.

I have read a little about the stimulator. Reading about putting in the effort has halped as well.

I think you should recover faster. Shoulders should be soon.
My husband can do nothing with biceps. Lost all strength. That seems to come later.

Hi there,

I'm sorry to hear of your husband's misfortune in having this happen to him as well. It is a frustrating road to travel since so few seem to know much about the issue at large.

I am getting ready to end six months of occupational therapy. I have regained what I imagine to be about 75% of the use of my right arm. First came increased range of motion; you are correct (in my experience, at least) that strength will come later; it did with me. The bicep functions ok again, it's the deltoids that refuse to come back fully for me at this point. I cannot raise the arm even to shoulder height, nor can I eat properly with it yet...I can eat, but in a 'shovel' type method the therapists say is a form of compensation that uses the bicep rather than the deltoids. It looks a bit odd to say the least, so I try to eat with my left hand when in public. I have a follow up with the surgeon next week. The therapists tell me I'm at a point where the sessions aren't showing significant improvement anymore so are recommending that I continue at home with the exercises they have provided and 'incremental' improvements will continue for the next year or two. We'll see what the surgeon has to say.

graybeard 09-10-2019 06:16 AM

C-5 Cause?
 
Hi. 3.5 weeks out from ACDF surgery. C-4-C-6 fusion. 66 year-old male. Second day out of surgery I began to experience excruciating pain from my neck, running along my collar bone and down my right arm to my elbow. I was taking Tylenol 3 for the pain. I spoke with my doctor and after 3 more days I paid him a visit to get a stronger pain med.
He seemed puzzled that my condition had deteriorated so much as everything seemed normal immediately following surgery. He gave me a steroid injection in my neck, which offered some temporary minor relief. He scheduled an MRI and x-ray of my neck and refereed me to an Orthopedic doctor. The Orthopedic doctor x-rayed my shoulder and saw no abnormalities. He gave me a steroid injection in my shoulder and the relief was almost immediate. About a week ago I had gone to the grocery store. I noticed I could not lift a gallon of milk and put it on the top shelf. I had been suffering a loss of appetite and had lost 8lbs since surgery. I was in great shape prior to surgery. A year before, I had dropped 40lbs and was feeling fit. I attributed my weakness to atrophy. It soon became obvious, after attempting to flex my right bicep, that this was not due to atrophy. I recalled my doctor mentioning C-5 palsy when I visited him after surgery. I believe that is the cause of my weakness so I began researching online. Like many of you I found very little info regarding the cause of C-5 palsy and wound up here.
I have a theory and perhaps a reason why my palsy is not as severe as other here. As I was sitting in pre-op, 2 guys in scrubs came in and wanted to evaluate my range of motion. I'm pretty flexible and they were impressed with the range of motion in my neck and arms. I had no idea what it was about, and frankly too stoned, at that point, to care.
I later deduced that they were assisting my doctor and they were the ones that prepped my for surgery. Not knowing what went on in the OR, this is all speculation. I suspect they put me in a position to allow the surgeon the best access to my neck. stretching and manipulating my neck and right arm. They probably secured me in that position and I remained like that through the 2 hour procedure. I say this because the pain I felt, I liken to being beat up.
Well it's been a week since I discovered the C-5 palsy possibility. In that week, I quit taking the Vicodin for pain and my appetite returned so I loaded up on high protein diet and have regained much of my weight. I also began doing curls with a 1.5 lbs can of Campbell's Chunky Savory pot roast soup. I do as many as possible at a time. I've probably done hundreds in that time and I have noticed a marked improvement in my bicep. I can now flex it and see results. Not like pre surgery but definitely an improvement. With some effort, I can lift a gallon of milk and put it on the top shelf of the fridge.
So, my theory is; the C-5 palsy was not a result of the actual procedure, but a result of the pre op preparation. And while the pain was unbearable, I did get some relief from the steroid shot in my neck. I got almost immediate relief from the steroid shot in my shoulder. Telling me that the nerve damage was in my shoulder, not my neck.
I am going to continue to curl my can of soup. Every day seems a little better.
I don't know if this will be useful to any of you, but I am interested in your thoughts on my theory, at least in my case, of the cause of my C-5 palsy.

Roswellgirl 10-31-2019 09:15 PM

C5 palsy
 
I underwent anterior cervical fusion c4-5, after day 3 post op, stsrted to notice a weak feeling in my left arm. I calked the MD office and was told to go to the emergency room if I felt I was having an emergency. It was just a mild weak feeling, so of course, I didnt go. Over the course of a few days, I lost the ability to lift my arm. Called the MD with the same results, go to the ER.
I did not feel it to be an emergency situation, however, I wanted some answers.
I went to the ER, had a Ct scan of my neck and brain, and Mri of my beck. My surgeon came to see me and said everything looks fine, all the hardware is where it is supposed to be, I think you have nerve palsy and left.
Over the next several days, not only was I having paralysis, I started having excrutiating pain in my arm and shoulder.
I still havent received an explanation from the physician, and have started trying to research this myself.
I am now 4 weeks postop with no relief of the pain, and no improvement in function. I started using a tens unit on my own, have not been referred for therapy.
Its very frustrating and depressing.

KelH 12-27-2019 01:22 AM

Hi all
I am female, 57 years old and underwent c4-5 Discectomy and Fusion Dec 4 2019. I woke up from surgery and realized that I could only lift my arm off the bed about 8 inches. I have paralysis from shoulder to elbow so I can at least use my lower arm. Like you I have a heck of a time with basic tasks, showering etc. My Doc sent me home that day and said that if it was the same the next day that he would start Steroids. He didn't give me any information on why this was happening or what it was called. I started googling and found this site.
I have to say after reading all the comments I was scared sh*tless! My Doc made it sound like it was just inflammation and after steroids would have movement. Guess what. 4 weeks out and no improvement and now in Pt and now I have increased pain in shoulder and lower arm. My Doctor has never diagnosed me with c5 palsy but my pt said "don't tell the doc I told you this but it IS C5 Palsy" when I asked!
I have to tell you it is very painful after I do my PT.
Can anyone tell me where to place my nerve stimulator patches for best results? My arm is already atrophied.
Thanks

StacyEubank 01-04-2020 01:22 PM

Nerve Pain in hand and arm since surgery
 
I'm a 60 year old woman and I had a 3 lever discectomy & fusion (4&5, 5&6, 6&7) with spinal cord decompression on November 25, 2019. My right hand was very painful following surgery. Washing my hand was like pouring hot lava on it. Couldn't bear to have it touched. Was put on Gabapentin (300mg TID) in the hospital. It started to calm down a bit. Noticed that my middle finger on my left hand was also effected. My right arm, arm pit and shoulder became achy and painful. My hand has decreased in pain, but still painful. I wear a compression glove and it helps to reduce the pain so I can hold a utensil, etc. My fingers and on into my hand still feel like electric shocks if I touch something, and the joints in my hand are inflamed. My arm gets achy and hurts at times. My hand is weaker than the other one, and if it remains after 3 months I will need therapy.
I also experienced dysphagia after surgery. Have trouble swallowing, especially my Ester C. Have cut it in half, but to no avail. Will have to see a specialist if it is not better after 3 months.
I'm also numb under my chin and to my scar.
The doctor told me about the risk of paralysis with C5 palsy, but never mentioned the pain I have in my hand as an outcome, too. I am right handed and am an artist, so It concerns me.
I am excited to find this group. Not too much info on the internet about all of this.

Mike4638 07-13-2020 12:59 PM

C-5 Palsy
 
I am almost 3 months out of surgery for C5 palsy bright am I can barely use left-arm very weak I keep hearing I'm going to start seeing improvements but as of yet I see none the recently started having more neck pain and numbness. I know I'm having twitches in my spine from my surgery done to middle of my back I'm just wondering if this is common.

Mike4638 07-13-2020 05:58 PM

Where do u place Tens electrodes??


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