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Old 11-28-2015, 09:24 AM #1
Jastek Jastek is offline
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Default 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.
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Old 01-31-2016, 10:57 PM #2
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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.
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Old 02-01-2016, 01:23 AM #3
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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.
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Old 02-01-2016, 07:42 PM #4
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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.
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Old 02-02-2016, 01:56 PM #5
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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%).
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Old 02-05-2016, 10:30 PM #6
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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.
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Old 02-11-2016, 11:28 PM #7
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Default 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.

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Originally Posted by Jastek View Post
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.
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Old 02-12-2016, 08:31 AM #8
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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
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Old 02-19-2016, 02:15 PM #9
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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....

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Old 02-20-2016, 02:08 PM #10
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Red face 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.
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