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Author Topic: Any Peroneal Nerve recovery stories?  (Read 453264 times)

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Offline amdre

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Re: Any Peroneal Nerve recovery stories?
« Reply #300 on: March 25, 2007, 05:32:48 AM »
Hey All

Good to hear that surgery went well for you max...i wish you a qucik and healthy recovery. i have totally faith in you having regeneration and i cant wait to hear the good  you telling us about it in the near future..my thoughts and prayers are with you. and trying to squeezing faith out of docs is next to impossible...the only one you need to squeeze the faith out of is yourself ...and you'll be just fine.Take good care and keep us posted on your recovery. 

Hey Mom444,

You said in your post that the Doc said if the EMG shows no significant change then the atrophy to your daughters leg may be to severe to recover....is that even with using the the NEMS unit? I ask because i was instructed by the doc to keep the muscle alive by using this everyday ..the clinic unit would force a contraction or just shock it..and the home unit would just feed it signals to keep it doing something or then shrinking. hope everything goes well with the EMG.

Hope everyone is well 
Dislocated knee in a Football game
Damage: Posterolateral Compartment,MCL Partial,IT band Tear,Popliteus tear,Hamstring and Peroneal Nerve Damage (Foot Drop)

Reapired in Surgery: Posterolateral Compartment Sept 17th/05
Scope Nov 20th/05, ACL Recon Sept 26th/06

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #301 on: March 25, 2007, 05:53:27 PM »
Hey All

Good to hear that surgery went well for you max...i wish you a qucik and healthy recovery. i have totally faith in you having regeneration and i cant wait to hear the good  you telling us about it in the near future..my thoughts and prayers are with you. and trying to squeezing faith out of docs is next to impossible...the only one you need to squeeze the faith out of is yourself ...and you'll be just fine.Take good care and keep us posted on your recovery. 

Hey Mom444,

You said in your post that the Doc said if the EMG shows no significant change then the atrophy to your daughters leg may be to severe to recover....is that even with using the the NEMS unit? I ask because i was instructed by the doc to keep the muscle alive by using this everyday ..the clinic unit would force a contraction or just shock it..and the home unit would just feed it signals to keep it doing something or then shrinking. hope everything goes well with the EMG.

Hope everyone is well 

Andre,

Thanks for asking.  I don't want to complain or to get upset over things that have already passed, but we unfortunately dealt with many doctors and therapists who were inexperienced or almost clueless about her problem.  Looking back, they SHOULD have told us to start using the EMS unit right away!  I know some of the others on this board were instructed to do so.  We just started to use the unit after with got it a month ago.  Her therapist at the Children's Hospital tried to use the EMS unit to see if we could get maybe get her foot to move but to no avail a few months back...  She didn't think to mention that we should still do EMS anyhow to keep the muscle alive.  Remember, they never recommended scar treatement to us either.

I'm trying to keep blind faith and hope and pray that she can still recover.  I have found research studies where people had peroneal nerve problems and didn't have surgery for over a year or two years after and still had some improvement. 

On the bright side we did meet with the other younger therapist at our PT's office and he too is experienced with this kind of injury because he has treated many footballs players, etc.  He has also treated children.  He said he saw on football player who had some nerve damage for a couple of years, his one leg was much larger than the other.  With therapy, he eventually got some more kind of build up in the other leg's muscles...  I don't know all the details...

Part of how frustrating our situation has become is that we are dealing with so many doctors who are almost cluelsess about this...  I don't want to be a mean person or a complainer...  but that has been so unfortunate that no one knew what to do.  Remember that back when we first took her in to be evaluated no one suspected it could have been a problem in her leg, the doctors immediately thought it was just a "tight heel cord" or something as severe as brain damage!

I know...  I have to keep my faith...  There was SOME RECOVERY at the last EMG...  I have to keep focusing on that.  And even the younger PT agreed that nerves to heal SLOWLY so it could just be taking its time.

I hope the rest of you are well.
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 j_smi001

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Re: Any Peroneal Nerve recovery stories?
« Reply #302 on: March 26, 2007, 07:40:03 PM »
Just to add my 2 pence worth (or two cents worth!) my physio had wanted to use electrical stimulation but unfortunately the physiotherpay department did not have a machine and there was a freeze on the budget and could not buy one either.  I bought a tens machine from Boots the Chemist and although it is really for pain releif I used it on my leg just to give some sensation to the leg in the vain hope it might do something.  I appreciate that my injury is not the same as your daughters but just to say I didn't have an EMS although I can fully understand your disaapointment and probably anger at not being given that option much earlier on.
2002 plica removal, chrondoplasty both knees and LR right knee. Derotational tibial osteotomy rt leg 07/04/06.  Awaiting for left leg to be rotated and have no more knee pain!

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #303 on: March 26, 2007, 08:40:26 PM »
Thanks Jacky.  We are still trying to stay positive.  On the possibly bright side, she said she felt the "dragon" last night. 
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 FrankGrimes

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Re: Any Peroneal Nerve recovery stories?
« Reply #304 on: March 27, 2007, 06:54:22 AM »
Hi from Sydney, Australia.

I only just found this thread. I started to feel like I was the only one who had this problem! ;-)

I have had peroneal nerve palsy for years now. I have unexplained peroneal neuropathy to the peroneal nerve resulting in footdrop.  Had surgery Feb 2006 and Feb 2007 including neurolysis to remove scar tissue around and inside the nerve. Surgeon tested and thinks 50% of fibres work ok.

I can hold my foot at about 90 Degrees against gravity. But I have no strengh if someone pushes down on it. Surgeon doesn't think i'll make much of a recovery. Surgeon also hasn't given me a recovery regime and says I just have to wait.. Does this sound right?

Kinda sucks.. Can't run, can't ski, can't swim properly...

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #305 on: March 27, 2007, 05:19:28 PM »
Hi from Sydney, Australia.

I only just found this thread. I started to feel like I was the only one who had this problem! ;-)

I have had peroneal nerve palsy for years now. I have unexplained peroneal neuropathy to the peroneal nerve resulting in footdrop.  Had surgery Feb 2006 and Feb 2007 including neurolysis to remove scar tissue around and inside the nerve. Surgeon tested and thinks 50% of fibres work ok.

I can hold my foot at about 90 Degrees against gravity. But I have no strengh if someone pushes down on it. Surgeon doesn't think i'll make much of a recovery. Surgeon also hasn't given me a recovery regime and says I just have to wait.. Does this sound right?

Kinda sucks.. Can't run, can't ski, can't swim properly...

Welcome Frank!  Glad to have you join our group!

It sounds like your problems and my daugther's problems are a little similar.  Your peroneal palsy was also unexplained?  Did you ever have any history of an injury?  Or did it just come on all of a sudden?

How many years or months did you have the problem before your first neurolysis?  Why did you have neurolysis twice? 

If you can hold your foot at 90 degrees is that enough to walk without a brace? 

Hope we can share some infor with each other.  We all help each other here.

Also, did you or do you ever get pains in your leg? 

Jacky, Andre and the gang,

My daughter's dragon may have come back.  Only now she is saying that it feels like "ice cubes."  I think that one of you said that your pains sometimes felt like ice water being poured on you.  Was it you Andre?  Were these pains of "ice" something that happened before more kinds of recovering?
« Last Edit: March 27, 2007, 05:23:26 PM by mom444 »
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 j_smi001

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Re: Any Peroneal Nerve recovery stories?
« Reply #306 on: March 27, 2007, 10:19:36 PM »
Mom, that is great news as I am sure that any sensation is good sensation and lets pray it is a sign of good things to come. 

Frank Grimes, welcome to the floppy foot gang and if you have had chance to read previous posts you will realise that you are a member of an exclusive club of very supportive and people. 

Max - thinking of you as you recover and hope you are not too sore.

Hamish - any update on your progress or are you in one of those static periods?  Hope you are OK

Gordon - How are you getting on with your EMS? 

Andre - any further news following the weekend trials, got any offers?  How is the strength going - I must ask you, if you don't mind, I have been trying to increasingly manage without the splint but find that as the day goes on I tire and start to trip up again, I can manage about four hours at the moment before I need to put my splint back on - how long did it take you to wean yourself off your AFO?  thanks  Jacky
2002 plica removal, chrondoplasty both knees and LR right knee. Derotational tibial osteotomy rt leg 07/04/06.  Awaiting for left leg to be rotated and have no more knee pain!

Offline FrankGrimes

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Re: Any Peroneal Nerve recovery stories?
« Reply #307 on: March 28, 2007, 12:07:23 AM »
Quote

It sounds like your problems and my daugther's problems are a little similar.  Your peroneal palsy was also unexplained?  Did you ever have any history of an injury?  Or did it just come on all of a sudden?

How many years or months did you have the problem before your first neurolysis?  Why did you have neurolysis twice? 

If you can hold your foot at 90 degrees is that enough to walk without a brace? 

Also, did you or do you ever get pains in your leg? 

Thanks for the welcome!

No trauma to the knee, but I did have arthritis as a child in the affected knee (I'm almost 25 now). Which could be related. I actually noticed by accident when skiing (I couldn't turn one way because of a weak foot), then alot of things came together, I tended to trip alot on pavement but never thought anything of it.

First noticed in July 2005, they first suspected MS, so in many respects I was quite happy it was only scar tissue!! But many EMGs and MRIs later I had a diagnosis - A tumor. Got operated on Feb 2006, no tumor found, but alot of thick scar tissue which the neurosurgeon removed.

1 year later, no improvements from both EMG and movement so I had another MRI - scar tissue had returned. So I got operated on again Feb 2007. Neurosurgeon said he was more aggressive this time whatever that means.. Saw the  surgeon this week to inspect recovery but he is not expecting much at this stage (Not sure why?)

Absolutely no pain.. Hence why it was hard to notice in the first place
No AFO either, I can walk ok, only with a slight limp! But tend to trip/scuff my feet a fair bit..
But can't run, so I ride a fair bit to keep fit.. Not much else I can Do.. Cycling is good for people with footdrop!!
I have an AFO but find it annoying to wear

My girlfriend is a physiotherapist, so I'm in good company. But I'm really not sure what I can to do help the nerve regenerate quicker! I currently just do stretching and some strenthening.



« Last Edit: March 28, 2007, 12:14:15 AM by FrankGrimes »

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #308 on: March 28, 2007, 03:13:10 AM »
Frank,

Your story is interesting.  I also am intrigued how you too had no pain yet somehow developed scar tissue.  You had arthritis as a child?  And you are only 25 now?  Hmmm...

My daughter also had no obvious pain when her scar tissue developed.  I did have someone ask me if she had arthritis, but no one ever was able to come to that conclusion.  Many doctors did ask or wonder if she was some way "genetically predisposed" to this kind of injury or to develop scar tissue on the nerve...  The pediatrician first thought that she had a  degenerative nerve disease like CMT but thank God that is most likely not it...  The rest of her body seems to function normally. 

I wish you luck in your recovery...  As you may have seen in my earlier posts, I'm a researcher and I've found many articles about this kind of injury and there have been a few cases where people had peroneal damage for longer than a year and still improved.

On a good note our physical therapist (I noticed that in the UK you tend to call them physiotherapists, I'm assuming it's the same) was doing the point stimulator on my daughter today and said that he saw "good muscle contractions."  Of course he cannot tell how far the nerve has regenerated but it's good to see that he was postive about the contractions...

How have the rest of you been holding up?  Max?  Andre?  Gordon?  Hamish?  Jacky?

Jacy, are you still able to dorsiflex?  Has it gotten any stronger?  You said you can at least walk without the AFO. 

I was telling our PT that from what I have read some people can recover enough just to walk without tripping but that their feet are just not strong enough against resistance.  If my daughter can't "lift weights" with her feet but can avoid tripping we would be so grateful.  Also I have read that some people might not get toe movement back, but again that might not be too tragic.

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 G_Bronson

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Re: Any Peroneal Nerve recovery stories?
« Reply #309 on: March 28, 2007, 04:12:34 AM »
Hey Everyone,
not much new here, i am using my ems machine everyday and doing my stengthening exercises and physio.  still not getting any muscle contractions with the EMS.I have an appointment tommorow with my physio therapist. i am almost at 110 degree flexion and my extension is getting better. Strength wise i am starting to  really notice the muscles coming back. I can actually take steps now without my crutches. My physio said that they will try to get me on the bike soon. so i am excited to hear that. Not much new on the nerve front. i am feeling some different sensations. but i doubt they mean anything. I feel a cold shot down my leg once in a while. when i try to lift my foot is feels different than before, kinda like its trying to but still not enough is getting through, if that makes any sense.

Frank,
Welcome to our group, looks like we got most of the globe covered now. Canada, the UK, the US and now Austrailia. I wish you the best in your recovery my friend, these are all very supportive and knowlegable people here.

Max
So glad you recieved some positive news from your surgery. Hope you heal up good bud! I was worrying for you, i was so glad to hear it went well.

MOM,
that sounds positive that your daugter was getting good muslce stim. that's a good thing for sure.

Hamish,
How are things going with you?

Jacky, and Andre,
I hope things are still continuing to improve for you. you guys have come such a long way.

Stay postiive everyone and work hard.

All the best
Gordon


 

Offline Hamish9

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Re: Any Peroneal Nerve recovery stories?
« Reply #310 on: March 29, 2007, 01:35:59 AM »
Hi Guys,

Things with me are going reasonably well. Its been a pretty hard time since my ACL recon on the 12th Feb but things are now settling down and most of the swelling has shifted and I am able to do a lot more. Managing to make it to the gym every day now. I have noticed that my dragon is going through a very active stage at the moment. I am now 7 months post injury and seem to be getting feelings in my foot I have not had before but not getting too excited but keep trying to will my toes and foot to move.

Hi Frank, welcome aboard the rollercoaster and goodluck and hope that the surgery will have the desired result. As evryone on here will tell you there is no quick fix as a nerve will only regenerate at 1mm? per day.

Max, glad to have you back after surgery! That must be one hell of a scar from the top of your bum to your knee. Sounds like you will win just about any scar competition unless you come up against a shark attack victim. Hope things are healing well. How many stitches/staples did you get?

Gordon, glad to hear things are improving and the flexion and extention are coming along. 110 degrees is about what you need to manage to pedal. Once I managed to get on the bike my improvement in flexion started to get easier. My flexion at the moment is about 105 degrees and can't quite manage to do it yet. I go on the bike and rock the pedal back and forth but I am not far away. Extention is hard for me at the moment but it is so important to get full extention to be able to walk without a limp.

Andre, Jackie and Mom444, hope things are going well with you!

Going away for a few days to some friends down in Englandshire, just for a change in scene. Will be back Tuesday so will check in then.

Hamish

Broke fibula and dislocated knee rugby training
Fibula repair and Posterolateral Corner reconstruction Sept 06
Footdrop
ACL reconstruction Feb 07

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #311 on: March 29, 2007, 11:28:53 PM »
HELP!

DO ANY OF YOU HAVE EXPERIENCES WITH NEURAWRAP?  WAS IT USED ON YOU DURING SURGERY?

We got a somewhat scary phone call from the neurosurgeon today.  They did an MRI of my daughter's leg last week and the doctpr then called to say they found that my daugter's peroneal nerve looked "thick" on the MRI.  I asked what that could mean and the doctor said that in the worst case scenario it could me a tumor had grown on the nerve or it was something more serious.

Or it could be from the product NEURAWRAP they used to wrap her nerve during surgery. 

This neurawrap stuff is a collagen based sheath that they put on the nerve to protect it from growing scar tissue... 

They say it is supposed to be reabsorbed by the body...  But I wonder how long it takes to be reabsorbed.

It's all so confusing.

But on the bright side, she is next to me right now crying in pain...  The dragon is here.

The doctor said the dragons are a good sign.

Hope you all are well...   I'm holding on to my sanity as best as I can.
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 Max Pwr

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Re: Any Peroneal Nerve recovery stories?
« Reply #312 on: March 30, 2007, 10:43:28 PM »
Hi Everyone, just checking in.

Recovery goes well, obviously I was very tender for a few days but I am getting better everyday and soon will be walking my dog again.  No real change in the floppiness factor.  It's hard to explain but my foot feels more 'natural' for whatever that's worth.  I do get stange feelings too Hamish, but I'm like you, I try not to read anything into it.  The dragon did make an appearance last night although minor in nature he was still there.  Staples (all 75 of them) are coming out next Thursday so needless to say I'm looking forward to that.

Mom, no one advsied me about anything like Neurawrap, sounds strnage that they would tell you that this late after surgery. 

Gordon, hang in there man, won't be long and you'll be going on some hikes this summer, keep up the good work with physio!

Frank, I know it's been said but Welcome, a new story is always welcome here and perhaps you can share some knowledge that the rest of us aren't aware of.

Jacky, what's it like wearing shoes without an AFO?  I bet its awesome, little things like comfortable shoes was taken for granted, but if I get my dorsiflexion back, I'm going to buy a real expensive pair of really comfortable shoes, I'm already looking forward to it!

Take care guys (and Girls) and keep in touch.  have a great weekend and keep up the hard work!
~Max~

Offline mom444

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Re: Any Peroneal Nerve recovery stories?
« Reply #313 on: March 31, 2007, 03:57:39 AM »
Hi Everyone,

I took the iniative myself and called customer service line for Integra, the company that makes Neurawrap.  I asked the rep if she know how long this material stayed in the body...  She wasn't sure herself but she forwarded me to another rep.

A while later the rep called and told me that the Neurawrap material STAYS IN THE BODY FOR 15 MONTHS!  So it sounds like maybe that is what is showing up on the MRI.

What irritates and concerns me however is that the neurosurgeon himself DID NOT HAVE A CLUE about this.  When I asked him if the stuff was supposed to have been dissolved by now he said, "Well yeah...  probably..."  It is ridiculous that the surgeon is using this stuff and doesn't even know a BASIC FACT about it such as how long it stays in the body!  And to call me up and say that there is a chance she may have a tumor that needs a biopsy, or a degenerative nerve disease, or something else...

I was on the phone all morning with different doctors trying to see if there is any place to go for a second opinion, but in our city we are limited with options.  Also because of her age they only want her to deal with pediatrics again.

But our regular pediatricians have  become our allies.  They said they will try to send her test results to the Cleveland Clinic.  I said that we don't have the time or money right or opportunity right now to hop a plane or travel far away to see another specialist...  But they said they could just send her materials to Cleveland...  We might need to take a trip there in person down the road.

Cleveland is only a few hours away from us.

This is all so confusing...

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 j_smi001

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Re: Any Peroneal Nerve recovery stories?
« Reply #314 on: March 31, 2007, 04:12:37 PM »
Mom i wish I could offer some words of comfort and hope you do get some concrete answers soon, it appears to me that the medics are actually increasing your anxiety through their woolliness (can't think of a better word).  I appreciate that nerves have no real time frame but I wish they wouldn't keep feeding all sorts of possibilities to you.  I feel for you. 

Max - the shoes - oh yes it is great - not being able to find shoes that would take my splint was a real trial - particularly for a social girl.  I have not completely weaned myself off the splint, like today, being Saturday is shopping day and so I wear tne splint around a long shopping trip as I fatigue and start to catch my toe and trip.  I can wear boots (Magnums) at work and can get away with no splint, but could before I had dorsiflexion back.  The real pleasure is being able to wear shoes for work.  I am off out tonight but it is in the city so will wear the splint so I can keep up with my friends.  But as each week goes by I get a little further without the splint.

I have a nerve conduction test on the 14th May to see what is happening.

All the best to you all xx
2002 plica removal, chrondoplasty both knees and LR right knee. Derotational tibial osteotomy rt leg 07/04/06.  Awaiting for left leg to be rotated and have no more knee pain!