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Author Topic: Any Peroneal Nerve recovery stories?  (Read 453278 times)

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Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #630 on: August 20, 2008, 01:28:30 PM »
Yes, please keep this thread going.

My daughter is now two years past her peroneal nerve decompression surgery. 

She is five now and starts kindergarten in a few weeks!

She is  still wearing the threshold electrical stimulation stickers to bed every night.

We are also using the surface EMG triggered biofeedback machine.    She is able to move her big toe, which some doctors told us is not connected to the peroneal nerve, but not her small toes.  However, she can at least contract those muscles in her leg and can do so with some good force, no dorsiiflexion yet.

I thank all of you still and appreciate all of your input.  We keep cheering you on and I still come back and often check this board to see how you all are doing.

Again, KEEP POSTING!

Amanda, I hope and pray that everything goes well for you especially.

And for the rest of our friends, keep the thread going.  I show my daugther a globe and tell her where all the different countries are where people hurts their legs like she did.

We pray for all of you.
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 ej_dlvga

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Re: Any Peroneal Nerve recovery stories?
« Reply #631 on: August 27, 2008, 03:22:55 PM »
I have good news.

It has been almost 9 months since the car accident that injured my leg, leaving me with foot drop on my left foot. Last April, I had surgery done on my nerve, complete interior and exterior neurolysis of my left peroneal nerve, about 20cm of which was swollen to twice its normal size, with fibrosis all around. of it. At 6 months after the accident, and numerous EMG-NCV tests, I began consulting with ortho specialists, for a possible tendon transfer. Most of them, when asked if my nerve had a chance to come back, said that aside from a miracle, it really isn't likely to come back, specially since it had been more than 6 months since the injury and such a large part of the nerve had been injured.

But about 3 or 4 weeks ago, during a physical therapy session, that miracle happened. While icing my leg after some gymwork, I noticed slight movement at my ankle. I had my Pt feel my leg, and she thought she could feel slight contractions of my TAs. I wasn't really sure if it was something, I didn't want to get my hopes up. But as the weeks went on, even I could feel my TAs contracting and could physically see my foot moving up and down, maybe just a half inch at that time.

My neurosurgeon was completely surprised when I showed him, he didn't expect it at all, even he had begun to accept that perhaps the surgery hadn't worked. My PT contacted my rehab doctor and she didn't even believe it at first, as all my EMGNCV results were the same each time for so many months -- negative.

I had another EMGNCV done last week, and the results were the best news I've heard in months. My nerve wasn't dead. I had reinnervation, finally, of my peroneus longus and tibialis anterior muscles, but none yet in my EHL(not really sure what that is, i think it's for the big toe. the order of reinnervation is usually PL, then TA, then EHL i think). They weren't completely innervated yet, but the fact was they were getting there. Hopefully with time, I regain full movement.

Right now, when fully rested and my leg is bent, the most i can lift my foot is about two inches more or less. My TA muscle is very weak, and after continuously lifting my foot to exercise it, gets tired very easily. I still walk with an AFO while waiting for my muscle to regain strength and full reinnervation, and I continue to go therapy thrice a week.

All my doctors had given up on the nerve, even I had. But apparently, we were all wrong. I pray for all of you, and thank you for the support and prayers. This site gave me hope even when I knew there was little chance, and I hope my story brings that hope to others as well. God Bless. Never give up.

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #632 on: August 27, 2008, 03:50:39 PM »
That is wonderful!   :)

It goes to show that doctors are often more on the negative side and willing to write things off too soon.

Again, we too have been written off my the rehab doctor with the EMGs and the neurosurgeon, but at least our out of town physical therapist still believes that my daughter could get a bit more recovery.

I refuse to give up hope.

It has been two years since here neurolysis, after a long standing undiagnosed injury, and she still cannot quite dorsiflex her foot but here has been some consistent activity in the TA for over a year.  We still are doing our aggressive therapy with EMG triggered biofeedback and overnight threshold electrical stimulation.

Remember, at least a few of the studies I found-- and one guy who posted on here a few years ago-- have reported recovery after even three years.

God bless 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 #633 on: September 02, 2008, 05:45:43 PM »
Hi mom444 and everybody…figured I’d stop by and give you a progress report…It’s been 3 months since my nerve decompression surgery and 9 months since the broken bone that caused the dropped foot. As far as I can see, my foot is just doing more of what it started doing before the surgery. I was able to evert somewhat before, and now the eversion is stronger…I had a little dorsiflexion in the ankle, and now I can raise the ankle a couple of inches even in the most difficult position. Also, all my toes can move upward, although not as strong as they would normally. It’s very slow going, and I don’t know how much I will improve given more time, but I keep on hoping for the best. If I’m careful, I can walk without my brace, and when I do, I can feel a pulling and stretching along the peroneal nerve and muscle…so part of my own home made therapy is going without a brace at home for a few hours a day. When I wear the brace I can walk just fine, but I don’t feel as if anything is getting exercised, and I think this is important for nerve regeneration…to actually try to use the muscles that are affected by the peroneal nerve…this is just my wacky idea…
I’m still going for PT as well, and my therapist has also seen improvement, but we still have to work on more upward ankle motion…that’s where the problem is. I still feel the numbness and the tingling, but instead of my whole leg feeling like this, the feeling is now mostly in the foot, and not as bothersome as before. Mom, how is your daughter doing? Is she still experiencing her dragon pains? I hope not…take care and be well everyone...
« Last Edit: September 02, 2008, 05:49:50 PM by Tanya8 »

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #634 on: September 07, 2008, 09:10:37 PM »
Hello Everyone,

I hope you all are well.  Please keep posting.

I just wanted to thank you for your continued prayers.  Last night may be part of an answered prayer.

My daughter had a MAJOR dragon attack.  She woke up cryhing and said that no matter what she did her leg kept hurting.  She said it hurt right near her tibialis anterior and it was a combination of, "Fire, ice, burnign and some squeezing."  It as a "red dragon," the worst kind with "two heads."

The dragons have been appearing sporadically for two years now since the surgery.

Again, many reports say neuromuscular recovery comes with pain.  So let's hope this pain is a good sign.

How are all of you?
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 zyx979

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Re: Any Peroneal Nerve recovery stories?
« Reply #635 on: September 10, 2008, 02:01:18 AM »
I am new here and am looking for anyone that has peroneal neuropathy for more that 10 years?  I am interested in anyone that had the peroneal decompression surgery and if you are any better off after the surgery.  Thank you.

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #636 on: September 10, 2008, 07:46:32 PM »
I am new here and am looking for anyone that has peroneal neuropathy for more that 10 years?  I am interested in anyone that had the peroneal decompression surgery and if you are any better off after the surgery.  Thank you.

Welcome and best of luck to you!

You are lucky enough to have joined a thread that has been going on for over two years.  Read through some of the older postings and you'll see how we have discussed various therapies, treatments, etc.

My daughter, who is five now, had her peroneal nerve decompression surgery after at least 18 months of symptoms and is now two years past surgery.  We are still hoping and praying for her recovery.  If you problem has been for over ten years, how serious is it?  Do you have partial movement of your foot?  Did you have the decompression surgery already?  If so when?  And have you had any pains in your leg?

Keep posting and we'll all try ot help you.
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 zyx979

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Re: Any Peroneal Nerve recovery stories?
« Reply #637 on: September 11, 2008, 04:13:51 PM »
I was hurt in Desert Storm in 1991 and was discharged from the Marine Corp because of it.  I have worn an AFO brace for about 8 years and then all of a sudden I got some feeling and a little movement back and since then was able to adapt and kind of walk normal(ish).  Recently I had an EMG done and was told that the nerve damage had gotten worse and that the peroneal neuropathy was getting worse. Recently I was working out on a treadmill and I believe I did something because I have lost almost all the muscle mass in my right calve and my ankle has become extremely unstable, I don't have any movement in the toes and have distorted feeling in the foot.  I think I have developed a tolerance to the nerve pain becuase I don't really notice it.  After reading some of the messages here, they gave me some hope that even now after all this time that surgery could help.

Offline Tanya8

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Re: Any Peroneal Nerve recovery stories?
« Reply #638 on: September 13, 2008, 01:56:25 AM »
Hi zyx979,

Although I have only had drop foot (peroneal neuropathy) since November 2007, I have had the nerve decompression surgery, and it has helped. Before the surgery, my knee used to feel as if it was being strangled to death...now the knee feels fine and most of the tingling sensations are in my ankle and foot, and they are not severe. In general, I also feel as if my foot and lower leg are stronger now, and I seem to be getting around better. Eversion, or outward movement of the foot is stronger as well, and I have regained some upward movement of my ankle...although there is room for a lot more improvement  in upward movement---dorsiflexion---I am encouraged that there is something happening there...in my mind, if something little happens with the nerves, then perhaps more improvement is possible in the future as well.  The one thing I did notice right away after this surgery was that I could move my toes upward again...not a lot. but this little difference has made the difference between my tripping and not tripping.

As far as my case is concerned, a neurosurgeon was the  best person to determine if a decompression surgery was appropriate and could be helpful. Although neurologists do a lot of testing and are very knowledgeable, the neurosurgeon was really able to zero in on the most effective treatment. I would try to locate one to find out what can be done in your particular situation...

Over the course of the past 10 months, I've "graduated" from a custom plastic brace, which was horribly painful, to a carbon brace, which was really great, to some sort of device which attaches to the shoelaces and is then hooked to an elastic around the ankle, and it feels like the best thing yet...since you have already managed to walk kind of normal(ish), perhaps it would help you too...please post again if you have any questions about the above post...by the way, the release surgery is not a very big deal, and in most cases you go home the same day...feel better...
« Last Edit: September 13, 2008, 02:04:05 AM by Tanya8 »

Offline jeanrod

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Re: Any Peroneal Nerve recovery stories?
« Reply #639 on: September 21, 2008, 09:24:33 PM »
Hi, I'm new here.  After 7 months of searching for a diagnosis, in October last year I had surgery to remove an intraneural (inside the nerve) ganglion cyst in order to remove pressure on the peroneal nerve (with resulting foot drop).  Dr. also did arthroscopy.  Have recovered about 200% from ZERO (which is 2 out of 5 levels) and physiatrist said probably no more.  I have used the X-strap ankle brace to pull up the toes.  Now I wear MBT shoes which have a rocker bottom and so I don't wear a brace at all (dr. doesn't like that, but I do).  Was doing electro-acupuncture to stimulate the nerves and I think that helped (insurance co isn't so sure and doesn't want to pay for any more).  As with many of you, it's exhausting to have to fight the medical establishment for encouragement and assistance.  If time doesn't take care of more improvement, there may be an AFO leafspring brace in my future, but for now, I like walking more freely.
I wish you all well in your recoveries.  Patience, time and effort seems to be what's required.

Offline jcblank

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Re: Any Peroneal Nerve recovery stories?
« Reply #640 on: September 22, 2008, 05:01:37 AM »
well im just back from the doc again--i am now to consider a nerve graft in hopes for restoring function.  does anyone have any thoughts on this?  i was told there is a 50/50 chance for some recovery with the graft.
1995 menisectomy
9/06 menisectomy with resultant blood clot
6/07 meniscal transplant with peroneal nerve damage
12/07 peroneal nerve decompression

Offline Tanya8

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Re: Any Peroneal Nerve recovery stories?
« Reply #641 on: September 23, 2008, 07:00:52 AM »
well im just back from the doc again--i am now to consider a nerve graft in hopes for restoring function.  does anyone have any thoughts on this?  i was told there is a 50/50 chance for some recovery with the graft.

Hi iceblank,

Just to be on the safe side I would get another opinion...great online research sites for peroneal neuropathy are the New York University Medical Center and the Columbia University Neurological Institute. I would post the websites, but I don't think this is allowed...good luck to you and the best of health...

Tanya

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #642 on: September 30, 2008, 05:04:06 AM »
Keep this thread alive!

I"m just checking in.

My daughter has been a champ with her efforts in working with the surface EMG triggered biofeeback.  We think that she may be able to...  maybe...  just ever so slightly...  move the foot up a bit.  Let's hope.

We still think of all of you and please do let us know about your progress. 

We keep you in our prayers.
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 jcblank

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Re: Any Peroneal Nerve recovery stories?
« Reply #643 on: October 06, 2008, 06:13:46 AM »
well i recently posted about a possible nerve graft that is scheduled in nov.  and now 16 months after my injury i am able to slightly pick up my foot as of yesterday.  hopefully i be able to become one of the success stories.  i dont know what this means about the surgery i assume i will now wait but i havent spoken to the doc yet.  if anyone could say when this occurs about how long before you start to see more regeneration?  i know this is just the start of hopefully a lot more recovery.
1995 menisectomy
9/06 menisectomy with resultant blood clot
6/07 meniscal transplant with peroneal nerve damage
12/07 peroneal nerve decompression

Offline bermudezfamily

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Re: Any Peroneal Nerve recovery stories?
« Reply #644 on: October 06, 2008, 09:53:22 PM »
Hello, new here! I have an 8 month old son who was born with a mild clubfoot, never seen on ultrasound, surprised us at birth. Mild in terms of it only needed one cast, usually they need 7 casts changed weekly. Anyhow, after his first cast was off at 3 weeks of age it was noticed that he does not have active dorsiflexion of the right foot. Well, several docs later, we now see a good ortho doc and neuromuscular neurologist. We live in New Mexico and travel to St. Louis Chidlren's Hospital.

We did have an EMG/NCT done on the baby when he was 6 months old. It basically said that peroneal nerve could be stimulated at the popliteal fossa, but not at the fibular head. His official diangosis is neuromuscular clubfoot and peroneal nerve palsy. He can move his toes on that foot, but has no dorsiflexion, minimal inversion, and eversion. The ankle is quite static honestly.

He wears a foot abduction brace at night which is the standard protocol for clubfoot, it's AFO's with a bar between them to prevent relapse of the inversion clubfoot, though honestly he doesn't sleep well in it and he just wears the AFO on this right foot to bed.

His right leg below the level of the knee is smaller in circumfrence, as well as the foot is smaller (though keeping up at the same growh rate) and there is a slight leg length discrepency. I've managed to find 5 othe rmom's who's child have the exact same symptoms. My son also has had ultrasound as part of a research study and they were able to see all of the nerves (so we know they are there) but not sure why they aren't firing. Yes, they were smaller again when compared to other side. He will likely have an MRI of legs in future. He has had MRI to rule out tethered cord, also have ruled out muscular dystophy, etc.

We are ready to start PT, though this is rare, and having a hard time finding a PT who knows what to really do with him. He is developmentally appropriate as of now, though once he starts weightbearing and walking he will wear an AFO for daytime to help with the foot drop. Have seen an AFO with a dorsiflexion assist to allow for the calf muscles to still plantar flex on their own. Have also read about e-stim that stimulates the tibialis anterior during a certain phase of gait...never seen one though. Would like to try e-stim with him now, though again, haven't found anyone who seems ready to do that on a child this age. I am an OT so have some knowledge, but a little out of my league too.

So, any thoughts, suggestions, I'm all ears. Thanks. Jamie

P.S. Forgot to sat that a posterior tibialis tendon transfer is possible when he is 3-4 years. Also ultrasound showed movement on the peroneal muslces, but did not see movement on the tibialis anterior.