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Old 05-10-2019, 07:22 PM #61
Patricia Cox Patricia Cox is offline
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Default 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 View Post
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.
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Old 05-11-2019, 12:52 AM #62
Patricia Cox Patricia Cox is offline
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Default 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 View Post
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 06-22-2019, 10:28 AM #63
Spock433B Spock433B is offline
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Default Anterior decompression laminectomy and resultant C5 palsy

Quote:
Originally Posted by Patricia Cox View Post
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.
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Old 09-10-2019, 06:16 AM #64
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Default 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.
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Old 10-31-2019, 09:15 PM #65
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Default 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.
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Old 12-27-2019, 01:22 AM #66
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Default

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
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Old 01-04-2020, 01:22 PM #67
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Default 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.
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Old 07-13-2020, 12:59 PM #68
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Default 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.
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Old 07-13-2020, 05:58 PM #69
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Where do u place Tens electrodes??
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