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C5 Palsy

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Old 05-10-2019, 07:22 PM   #61
Patricia Cox
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Join Date: Apr 2019
Posts: 5
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.
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
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Join Date: Apr 2019
Posts: 5
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.

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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