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Author Topic: Any Peroneal Nerve recovery stories?  (Read 469189 times)

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Offline embose319

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Re: Any Peroneal Nerve recovery stories?
« Reply #600 on: April 18, 2008, 08:06:05 PM »
Thanks,
   It has been about 3 monthes since the accident.  I have not yet seen a nuerologist no one has directed me to see one.  I have read that a lot of people see a nuerologist and I'm sure the sooner the better.  Should I contact one myself or just wait until someone directs me to.

Offline ej_dlvga

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Re: Any Peroneal Nerve recovery stories?
« Reply #601 on: April 20, 2008, 04:00:52 AM »
Have you had EMG-NCV tests? You definitely should, if you haven't. These tests can show if your nerve is regenerating properly. If by now, after 3 months, the tests aren't showing any positive results (this is what happened to me), i would definitely suggest going to see a nerve specialist.

In my case, I wish I had seen a neurologist and a neurosurgeon earlier because then they would've identified the problem sooner and the surgery, done earlier, would've had better chances of success. Before I saw a neurologist, most of my doctors were telling me to just wait for the nerve to recover on its own. We decided to see one anyway. Had I not seen a neurologist, I wouldn't have known that I needed the surgery ASAP. In your case, at 3 months, I suggest you see a one at least, it won't hurt, after all. It would at the very least give you peace of mind, knowing that you went to see an expert. If they suggest you see a neurosurgeon, why not? From what I've read about nerve injuries, timing is very important when it comes to treatment.


Offline jcblank

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Re: Any Peroneal Nerve recovery stories?
« Reply #602 on: April 24, 2008, 11:13:52 PM »
I am finally starting to see trace movement of my anterior tib with the use of a TENS unit.  This finally started 10 months and 10 days after surgery that damaged my nerve.  I just cant wait until I can use my foot hopefully soon.
1995 menisectomy
9/06 menisectomy with resultant blood clot
6/07 meniscal transplant with peroneal nerve damage
12/07 peroneal nerve decompression

Offline jove

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Re: Any Peroneal Nerve recovery stories?
« Reply #603 on: April 30, 2008, 05:33:16 AM »
embose319;
yes you should see a neurologist. ej-dlvga's advice is right on. It's been 3 months with no apparent recovery. In this case you need to take the initiative, & see a neurologist, and get all the information that you can about your injury, so that you can make the right decisions in a timely  manner.

As ej-dlvga mentioned, don't wait too long, because IF you should need surgery, much after 6 months your chances of success, and options, are decreasing. If the neurologist recomends seeing a neurosurgeon, then see one - just to get all the information before you decide what to do (or to just wait). If you wait too long, you won't have the option. Sure it may cost a lot to see the specialists, but look at it as an investment in your future.

 People think that surgery is risky, and of course it is- but, doing nothing and waiting too long is also risky! All I'm saying is, just see the experts and get all the info from them, before you choose which risk you want to take.

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #604 on: May 01, 2008, 03:42:35 PM »
To everyone,

Just checking in to say hi and wish you all continued success and recovery. 

Again, keep this thread going!

My daughter has been having "dragons" on and off, but none for the past two weeks.  When the dragons are there they "bite" her below her knee right in the space of the anterior tib muscles, so we hope and pray that is a good sign.  We are now at almost 21 months past the surgery.  Still no obvious dorsiflextion yet, but now that she's almost 5 she is more aware of what's going on and can actively "try" to move her muscles.  Sometimes she says it hurts.

We are looking into beginning "surface EMG triggered biofeedback" on her anterior tib  muscles.  As I said, we found a therapist one city away who is originally from Denmark and she has experience working with children's nerve injuries.  We'll likely see her again soon.

Keep us in your thoughts and prayers, as you are all in ours.

Mother of a now six year old daughter with unexplained peroneal neuropathy/injury to the peroneal nerve resulting in footdrop.  Had surgery 7-06 including neurolysis to remove scar tissue/neuroma.  Wears AFO wtih dorsiflextion assist and is using EMG triggered biofeedback and TES awaiting recovery.

Offline embose319

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Re: Any Peroneal Nerve recovery stories?
« Reply #605 on: May 07, 2008, 12:51:44 AM »
HI all,

 Hope everyone is doing well with their recoveries. I have a new question sorry for all the questions i am new to all this and feel very uninformed.  I have been having "jolts" in the side of my leg where the nerve damage is.  I have had this pretty much from the begginning several times a day, however lately it is getting much stronger.  Sometimes it's so strong i have to jerk my leg because it is like a shock. What is this feeling im guessing it is the nerve but what causes this and is this a good thing or bad.?

Offline jove

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Re: Any Peroneal Nerve recovery stories?
« Reply #606 on: May 14, 2008, 04:53:35 AM »
Here is an excerpt of an interesting article about 'phantom pain'. Actually it was written about amputees, but (my guess) is that some of the ideas may still apply to a nerve which is damaged or torn:
http://www.cripworld.com/amputee/painmanagement.shtml

"You need to know that, despite intense research in this area, there is still very much that is not known or understood about human neurophysiology. .....
Pain is actually felt in the sensory cortex of the brain. The sensory cortex receives messages from the rest of the nervous system and organizes them into a pattern that the body can experience, either feeling them, seeing them, tasting them, smelling them or hearing them. The sensory cortex acts much like a television set, which picks up information, organizes it, and then displays it so that it can be understood.
When an amputation occurs, the nerve trunks are cut at the site of the amputation and the sensory nerve cells die and are discarded along with the amputated limb. This is the equivalent of the television transmission lines being cut and the camera being destroyed. The television screen, antenna, cable hook-up and television station may still be present and working. They are just no longer getting a valid input from that particular remote television unit. Since the sensory cortex of the brain, and the spinal cord, as well as all the intermediate connections, are still working, signals still come to the sensory cortex, even if they are not valid, real signals.  Some of the signals are like static, some are from other neural circuits, and some of it we have no real idea about. The fact remains-the person still can feel the limb that is no longer present because the part of the brain that does the feeling is still alive and well.
The cut nerve can generate sensations of its own. Any sensation that could be experienced by the nerve prior to injury can still be perceived by the brain, even if the limb is no longer present.  If the cut end of the nerve is squeezed or pinched, the nerve may be highly stimulated and send strong signals that appear to originate in the amputated part because this is where the nerve cell originally was located. Sometimes the feelings are electric tingling, like when the funny bone at the elbow is struck and electricity runs into the little finger. Other times the sensation is a deep, slow, burning pain.  Anything that the limb could have actually experienced when it was intact can still be experienced by the cut nerve and sensory cortex that is attached to it. Sometimes the experience may seem more intense because the sensory cortex is bored by having nothing to do and may seem to make a lot out of a little.""

source-Editor, InMotion
Magazine, 900 E. Hill Avenue,
Suite 285, Knoxville, TN 37915
or e-mail to
G. Edward Jeffries, MD

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #607 on: May 16, 2008, 08:59:13 PM »
HI all,

 Hope everyone is doing well with their recoveries. I have a new question sorry for all the questions i am new to all this and feel very uninformed.  I have been having "jolts" in the side of my leg where the nerve damage is.  I have had this pretty much from the begginning several times a day, however lately it is getting much stronger.  Sometimes it's so strong i have to jerk my leg because it is like a shock. What is this feeling im guessing it is the nerve but what causes this and is this a good thing or bad.?

If you read through some of the old posts you'll see that many of the posters, including my daughter, have similar pains.  My daughter calls hers "the dragon."

Just today we almost were going to take her to the emergency room because the pain was so bad.  She has had the pain for nearly two years now since her peroneal nerve decompression surgery.

From what I and others have researched, sometimes the pain is a bad sign because it means the nerve is experiencing degeneration.  However, the pain can also be a GOOD sign because many have had such jolts when the nerve is reinnervating the muscle.  So it could be either.  But we hope and pray it's good.

Update on my daughter:  We got insurance approval for the EMG triggered biofeedback machine!  We will need to travel to see the out of town therapist for training on how to use it, but we hope it's positive.

Remember, many therapists say that after a long standing injury, even after one gets recovery back there still needs to be a period of "retraining the brain" to "remember" how to use the muscles.

I pray for you all.  Keep the faith.
Mother of a now six year old daughter with unexplained peroneal neuropathy/injury to the peroneal nerve resulting in footdrop.  Had surgery 7-06 including neurolysis to remove scar tissue/neuroma.  Wears AFO wtih dorsiflextion assist and is using EMG triggered biofeedback and TES awaiting recovery.

Offline Tanya8

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Re: Any Peroneal Nerve recovery stories?
« Reply #608 on: June 03, 2008, 07:40:59 PM »
Hi...
I've been reading all of your peroneal nerve pain and surgery stories and would just like to relate my own story...I awoke with foot drop after surgery to repair a broken femur bone 6 months ago...recently I had nerve decompression surgery. Before the surgery, I had a continual "hit the funny bone" pain behind the knee and felt as if my ankle and knee were being strangled. Post surgery, the pain behind my knee is gone, the knee no longer feels strangled and the ankle feels about 40% better as well. Also, my foot, which looked smooth and kind of spooky because no veins were visible, now has normal veins and contours again. While I don't have pain pain in my leg, I do have an odd sensation of electrical current cursing through my leg...it feels most odd...not really jolts, but a steady kind of stimulation ???
It has only been a few days since surgery, but it seems to me that I have more movement in all the toes of my foot...also, before surgery I could dorsiflex up about 1 1/2 inches...now is seems like a little more, perhaps 2 inches. I don't know where all of this is going, but of course I'm keeping my fingers crossed and will keep you posted about any progress...

Offline Tanya8

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Re: Any Peroneal Nerve recovery stories?
« Reply #609 on: June 06, 2008, 04:42:05 AM »
Hi Jove,

I noticed from you previous posts that you had nerve decompression surgery last January, and I was wondering how you're doing. I just had this surgery last week, and although I'm hopeful, one never knows how nerve problems are going to work out...so far it seems as if I can lift my toes higher than before, and as I mentioned in a previous post, the horrible pain behind my knee is gone. No electric jolts yet, but plenty of tingly sensations down to my foot and toes. I had the decompression surgery 6 months from the date of injury, so I guess it just a matter of waiting to see what happens. Have you noticed any improvement so far?...my doc said it could take up to a year or longer...also, have you been doing any electrical therapy or physical therapy to help it along? 

Feel better, and I'm looking forward to hearing from you...

Best,
Tanya

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #610 on: June 06, 2008, 05:48:16 PM »
Best of luck Tanya!

Keep us posted on your progress.

My daughter had the "squeezing" dragon pain last night.  When I ask her to try to move her foot, she can tighten up her muscles with a lot more force now.  Still no visible dorsiflexion yet, but you can see and feel the muscles on the top of her leg at least TRYING to work.

Bless you all.  And keep in touch!
Mother of a now six year old daughter with unexplained peroneal neuropathy/injury to the peroneal nerve resulting in footdrop.  Had surgery 7-06 including neurolysis to remove scar tissue/neuroma.  Wears AFO wtih dorsiflextion assist and is using EMG triggered biofeedback and TES awaiting recovery.

Offline Tanya8

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Re: Any Peroneal Nerve recovery stories?
« Reply #611 on: June 07, 2008, 04:20:36 PM »
Hi Mom444,

Thanks for your good wishes, and I will keep you posted...in your post you mentioned that you daughter had the squeezing dragons last night, and I think I know what she's talking about...I had and still have that squeezing sensation around my knee and ankle, which seems to change in intensity at various times. Before the nerve release surgery I felt this odd pain at both my knee and my ankle...now I just feel it at my ankle ...I don't know what it means, but if I notice changes and improvements I'll let you know. These squeezing pains feel as if someone is tightly squeezing your ankle or leg and preventing it from moving...I'm just trying to put an adult spin on this so you can better understand what your daughter is trying to say...Has your daughter had nerve release surgery, and if so how long has it been...

Take care and keep in touch as well...you and your daughter are also in my prayers...
« Last Edit: June 07, 2008, 04:23:06 PM by Tanya8 »

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #612 on: June 08, 2008, 12:08:18 AM »
Thanks for the prayers Tanya, you are in ours too :)

It has been almost TWO YEARS now since my daugther had the nerve decompression surgery!  But often, from what I have researched, it can take a few years for people to get recovery.  Even though many doctors seem to think that recovery should happen right away, a lot of the research studies do say it could take years.

Thanks too for the adult input on the dragon pains.  Again, she has had these off and on since six months after her nerve decompression surgery...  How often do you have yours?

Take care and keep us posted!
Mother of a now six year old daughter with unexplained peroneal neuropathy/injury to the peroneal nerve resulting in footdrop.  Had surgery 7-06 including neurolysis to remove scar tissue/neuroma.  Wears AFO wtih dorsiflextion assist and is using EMG triggered biofeedback and TES awaiting recovery.

Offline Tanya8

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Re: Any Peroneal Nerve recovery stories?
« Reply #613 on: June 08, 2008, 02:38:50 AM »
Thanks Mom444

I've had the squeezing pains in my knee and ankle ever since the drop foot started in November 2007. The pain in my knee would radiate down the front of my leg from behind the knee and both the knee and ankle would feel as if I had tourniquets on them. Also, I had a pain behind the knee that felt as if I had hit a funny bone there 24 hours a day...as time progressed the knee discomfort did become better, but it was still very annoying. Also, when I walked, I would feel my knee catching like something was caught inside of it...one of doctors said that it could be arthritis because I have had some problems with this knee. Since the decompression surgery last week, however, I have my knee back...no more squeezing pain, and I can walk more normally now...so much for the arthritis theory.

As for the squeezing pain around my ankle, I still feel it, but just not so intense since the surgery...if you want to know how it feels, have someone with a strong hand just grip your ankle really hard, and you will have some idea of what your daughter feels. You also mentioned that your daughter has electric jolts as well, and while I don't have this feeling yet, I do feel some kind of electric current going down my ankle to my first 3 or 4 toes...not really painful, but it does feel odd. I really have the squeezing in my ankle all the time, but it's just the intensity that changes...unfortunately it's more noticeable at night...I would have to say the intensity becomes really annoying 2 or 3 nights a week. Before my knee pain disappeared, it also would happen 2 or 3 nights a week. During my research I've read that VitaminB6 is helpful for this  nerve discomfort, and I've noticed that it has helped me...perhaps this will help your daughter as well...
Although it's only been a week since my decompression,  I've noticed that I can lift my toes upwards more now...sometimes the differences are so slight that I'm afraid I might be imagining them...you know wishful thinking.  It's hard to be objective in matters such as these, but I do believe there has been improvement with the toes...only time will tell, however.

Since your daughter has had this condition for some time, I assume that she has to wear some type of brace...I was tortured in a custom plastic brace in the beginning, but when I rebelled, the orthotist recommended another one and perhaps your daughter could benefit from it...It's made by Otto Bock, and I know they have a children's version...certainly it would be great if your daughter could be more comfortable while she's healing. If you want the particulars and web addresses, just email me and I'll give them to you...By the way, I read somewhere on the Internet that it took 3 years for someone to heal after a decompression...they just basically forgot about it after a while and then one day noticed that they were better...in the meantime, God Bless, and may every minute of every day bring your daughter closer to recovery... :)
« Last Edit: June 08, 2008, 03:09:07 PM by Tanya8 »

Offline jove

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Re: Any Peroneal Nerve recovery stories?
« Reply #614 on: June 11, 2008, 03:20:03 AM »
Hello to all, Hi Mom444 and Tanya,embose, jcblank, and all,
hope your recovery is progressing....it's been exactly 1 year and 1 day now since my accident.

(Tanya said:)"I noticed from you previous posts that you had nerve decompression surgery last January, and I was wondering how you're doing. I just had this surgery last week, and although I'm hopeful, one never knows how nerve problems are going to work out...so far it seems as if I can lift my toes higher than before, and as I mentioned in a previous post, the horrible pain behind my knee is gone."

No, it's been a year since my accident and the nerve graft surgery was 8 months ago. Tanya, I believe that a nerve graft is somewhat more extensive than only the decompression, as in my case a 3" segment was cut out and replaced with a graft. (Maybe you are thinking of someone else's post?)
Tanya, I'm glad you are seeing some encouraging progress already! Good for you!
I'm fortunate that I never had much pain from any of this. But however, total lack of any feeling at all is not good, either.....

In my case there is not much tangible progress yet(surgery was Sept.2007). There is still no movement or muscle twitching at all that I can see, and the last EMG report was discouraging. There are some recent very subtle signs that I like to take as encouraging- an occasional mild shock, sting, or tingle now and then. A few times it felt as if someone was stomping on my foot! That was weird. So far I don't find it painful or bothersome at all because, well, "anything" seems better than the last 10 months of "nothing". I'm so happy to feel anything at all, it's progress! But it's been very mild and infrequent. And now I THINK the Tinell's sign has advanced from my thigh, a few inches above the crease in back of my knee, to an inch below the crease in the back of the knee. But this is just my guessing, I'm not really trained to do that test, and I'm not sure if I'm interpreting things correctly. I do believe it is a good sign, but I'm not telling anyone yet (except y'all!!!).

I've not done any electro-therapy. We tried it and had to turn the power up too high- my Neurologist did not recommend it UNTIL there is more sign of regeneration. I do try to keep the hamstrings and achilles tendon stretched out, it's important to not let the Achilles tendon shrink or contract, so you have to keep stretching, every day is good. When I drive to work I remove the AFO and try to move the foot, usually by (trying to) tap my toes in time to some loud country music playing on the radio. I imagine that it is moving, and as long as I don't look at it (and see that it is NOT moving) sometimes I really think it IS. VISUALIZATION is a technique that a lot of elite level athletes use, and swear to be very effective. (I imagine this to somehow help 'guide' the regeneration of the nerve to the correct location on the muscles...)

I'm still working to get full flexion in my knee joint, which also has a ruptured ACL and who knows what else. I now can come about 1 inch from touching my butt with my heel. Goal is to be able to sit on my heels, so that I can do yoga and jiu jitsu. Otherwise , I swim a  lot, bicycle, yoga, boxing, and kickboxing. For kick-boxing, I remove the AFO and put on a knee brace, ankle brace, shin guards, and hi-top wrestling shoes. Then I tie the laces at the bottom of the hi-top shoes to the top of the ankle brace, which holds my foot up. I can jump-rope for several minutes that way now, which I absolutely despise, But do it anyhow because it's part of the training.
I miss roller blading, jiu jitsu, and wrestling, which I can't do YET...

Any how, good luck again to everyone out there. and thanks for the support and encouragement.















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