Advertisement - Hide this advert





Author Topic: Any Peroneal Nerve recovery stories?  (Read 454699 times)

0 Members and 1 Guest are viewing this topic.

Offline mom444

  • Forum Faithful
  • ****
  • Posts: 161
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #210 on: February 19, 2007, 03:04:25 PM »
Hello Everyone,

Just stopping in to say hello.  There have been no dragons at all recently but I am keeping the faith.

Meanwhile my daughter's neurosurgeon's office never got back to us about scheduling another EMG...  And we have not had any other PT appointments lately with the electricial muscle stimulation because of all the craziness with the other PT evaluations.

And I can't make any phone calls today because it's President's Day here in the US and most offices are closed! 

Hmm...  I'm just trying to say calm.

I hope you all are doing well.  Keep praying.
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 mom444

  • Forum Faithful
  • ****
  • Posts: 161
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #211 on: February 20, 2007, 08:03:11 PM »
Please pray!  We have another EMG tomorrow!

We got an appointment for tomorrow... 

I'm so nervous.  I'm nervous about how bad she'll cry when they stick the big needle in her leg.

I'm even more nervous if the news is not good or if there is no sign of nerve regeneration yet.

Yes, it has been exactly 7 months since her neurolysis surgery.  If the "inch a month" theory is true that it's probably too early for any signs of regenration yet.  That is, if 7 months equals 7 inches...  But on the other hand the neurosurgeon said that the dragons could mean that there is some regeneration already...  I'm so confused.

I hope you all 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 stabso

  • MICROgeek (<20 posts)
  • *
  • Posts: 11
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #212 on: February 20, 2007, 09:35:03 PM »
Hi mom444,

I had an EMG today and if it's any consolation, only the initial pin-prick caused a little discomfort.
Obviously, a young child will have a different take on it, but in hind-sight distraction and not actually seeing the procedure would probably have helped.


Thoughts and best wishes for you and your little girl tomorrow.


Offline j_smi001

  • Forum Faithful
  • ****
  • Posts: 271
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #213 on: February 21, 2007, 07:41:39 PM »
Prayers delivered as requested.  Mom444 and Stabso - so what are the results of your EMG's?  I am still waiting for a date.........  Hope all making good recoveries.  No real news my end still just hanging in there.  Take care all
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 Max Pwr

  • MINIgeek (20-50 posts)
  • **
  • Posts: 37
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #214 on: February 21, 2007, 07:56:29 PM »
Hey Mom, prayers on this end sent as well.... how did it go?  I'm anxious to hear how things went with the EMG etc... I was thinking the other day about you; I waas talking to my doctor sometime ago and asked him about the nerve pain and whether or not it's indicative of healing.  He replied to me that every case is unique and although some that heal report the 'dragons' while others that heal feel nothing before they see the recovery.  As well, many that had dragons, had them for quite some time with no recovery.  Therefore, if your daughter doesn't feel the pain, it does not mean she's not healing.  Every person with this affliction heals differently so keep that in mind, and stay positive!  We're thinking and paraying for you.

Offline mom444

  • Forum Faithful
  • ****
  • Posts: 161
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #215 on: February 21, 2007, 08:46:21 PM »
Hello All,

Please keep praying.  I am crying right now.  We just had the EMG and while the rehab medicine specialist saw some sign of improvement there is another issue we have to worry about.  My daughter has a thick mass of scar tissue over the incision where she had the surgery and the rehab medicine doctor was concerned that the scar tissue could be pressing on the nerve and interfering with it healing.  He also said that after seven months he had hoped to see more improvement.

He also said that she may need another surgery, possibly plastic surgery to break up the scar tissue.

The worst thing he said was that if she did not recover that she may need a tendon transfer.  I do not want to have to do that because she is so young, only three.  She's at the beginning of her life.  Plus, those surgeries are more complicated on children.

Every doctor who we have seen throughout this whole ordeal has given us a different story.  It is so frustrating!  We have heard stories about how recovery couild take a few months to a year to whatever...

Please keep praying.  We keep praying for you too.

I'm so worried.
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

  • Forum Faithful
  • ****
  • Posts: 271
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #216 on: February 21, 2007, 09:42:23 PM »
Mom444
So sorry to hear your news and no pointin saying don't worry because of course you will.  I know exactly what you mean about different doctors giving different information and I really don't think you are alone in that as nerve injuries are not well understood and I bet we have all been given information that has then been contradicted later on.  I was myself initially told, 2 to 4 weeks and it will be OK, then between 3 -6 months you'll see the most recovery, then lets see how it is at 12 months to it is possible to have recovery upto 18 months.  You take care
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 Max Pwr

  • MINIgeek (20-50 posts)
  • **
  • Posts: 37
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #217 on: February 22, 2007, 04:17:17 AM »
Hey Mom, how would you feel if there had been no signs of recovery?  That they say there's some recovery should be wonderful news, of course we all want to wake up tomorrow and not have drop foot anymore but that's unrealistic; I think it's great that they showed some improvement.  About the scar tissue over the incision, have you tried some massage therapy?  I had a huge rock hard lump under my scar and the massage got it right down, perhaps give it some thought, it may hurt her a little but maybe it might be of some benefit.  As well, I don't know about your daughter but my calf kills me sometimes and the massage feels soooo goooood on it.  I've been scheduled for another EMG Friday, I'm hoping to hear there's some recovery, no matter how minute.  Maybe I'll get the same good news as your little one.  Surgery still scheduled for next month.  I wish I could get a tendon transfer, research it, turns out success rate is like 75% or higher, which would mean no more AFO for her, so don't dismiss that option either!  You stay strong, I think about you guys everyday.  I also saw another neurosurgeon today and asked him about the dragons.  he said that if the pain goes away it's usually a good sign so don't pray too hard for those dragons to return.  In any event, get some sleep and please let us know how you are doing.   

Offline mom444

  • Forum Faithful
  • ****
  • Posts: 161
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #218 on: February 22, 2007, 04:47:17 AM »
Thank you everyone for your comforting words and prayers!  It's almost midnight and I've been frantically researching again!  That is just what I do...  It's like I think maybe I'll find something online that will give me an answer.

Seeing your posts is so comforting.

Thanks Jacky, Max and everyone.  I am so happy you are all here for us.  I would prefer not to have her need a tendon transfer because an orthopedic surgeon said that on a child it is too complicated and that the tendons could not grow properly as she grew and it would require more surgeries...

I am going to start the massages right away!  Yes, it is good that there is at least some iimprovement.  I still don't know if the scar tissue really is causing a problem of if this doctor is just playing another guessin game. 

DID ANY OF YOUR DOCTORS TELL YOU ABOUT SURFACE SCARS ABOVE THE SURGERY INCISIONS AND IF THEY COULD IMPEDE RECOVERY?  I am just so shocked that the neurosurgeon did not think to tell us this... 

Yes, I better get some sleep.
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

  • MINIgeek (20-50 posts)
  • **
  • Posts: 26
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #219 on: February 22, 2007, 08:37:37 AM »
Hello Everyone,
I was wondering if i could join in on your Posts.
I recently suffered a knee dislocation while playing football over x-mas this past December.
 I was visiting my friends and family in Newfoundland from Alberta. I had a great job out there, Played every sport you can think of, then on boxing day i fell the wrong way in a pile of people playing our annual game of football. I tore my ACL, damaged my PCL , tore my LCL, and stretched the peroneal nerve. Subsiquently i have foot drop. i had surgery on the 17th of January07 to repair the damage to my legiments and tendons, and tomorrow i start physio. The surgeon told me that the nerve was stretched severly but was intact. I have frantically been searching to see if people do recover from such injuries. I was excited to read the posts that you have all written and hope and pray that you will all heal. I don't care if i play sports again i will settle just to walk. i know it will take alot of hard work and i am no stranger to that. i just need some support from people who have gone through similar injuries. I felt like my life was over to be honest, i could not even fly home to Alberta, i had my operation in Newfoundland and will be starting my physio here, although i am greatfull to have my family and freinds close at this time, i am also anxious to return to work. I had an EMG last week and the nerve was non responsive. However the neurologist did give me hope. i do have some feeling in the top of my foot, it is extra sensitive at times but its there.He said this is a good sign, some signals are getting through.  I also feel lots of heat,tingles, and shocks throughout the nerve.  Also he said that it is still early to say it will not regenerate, it takes time,usually 6 months to a year or more.  I can press down with my foot and move it inward, but not outward and no dorsifexion.

I was wondering if there are certain things I should start to do? I am an engineer and i have been analyising this to death and am quite scared! Yet i am doing my best to remain positive. Any suggestions or knowledge would be greatly appreciated.

I wish you all luck in your Battles with this, and will Pray for you.   


Gordon
 

Offline mom444

  • Forum Faithful
  • ****
  • Posts: 161
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #220 on: February 22, 2007, 03:48:02 PM »
Welcome Gordon and best of luck to you.  It's great to have another member to support and share info :)

My daughter also can push her foot downward and inward but cannot pull it up.

I'm so confused because of all the conflicting information I have heard from various doctors.  As I said I stayed up late last night trying to find all the info I could.  Thankfully my husband and I both work for colleges and we have passwords to some medical databases.  There were a few more research articles I found and many articles do point toward recovery not starting until 6 to 8 months after the injury (or surgery?)  So, why...  WHY did that doctor yesterday scare us so much by saying there should be more healing by now?  That was not what the neurosurgeon or physical therapist told us.  So who is correct?  It's so frustrating!

So your doctor also said "6 months to a year?"  That's what they originally told us too...

Well, best of luck to you all and we will all keep praying for each other. 

I wonder if prayers are what got us the early EMG appointment in the first place.  The neurosurgeon was planning on waiting a few more months to do one!  Who know what thaty could have done...  If we do need to start working on the scar tissue that thank God we go in when we did.

But today I am trying not to cry as much and be calm.  I wonder if the rehab medicine doctor was wrong, I hope he was.  I really hope the he was wrong about both of the shocking things he told us:  that there should have been more recovery by now and that the scar tissue on the surface of the skin is impeding the healing. 

Those two theories almost sound far fetched...  Everything different doctors have told us in contradictory...





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 mom444

  • Forum Faithful
  • ****
  • Posts: 161
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #221 on: February 22, 2007, 08:05:11 PM »
Thank you for your prayers...  I was able to get her an appointment with a different physical therapist for tomorrow morning!

Today I was on the phone all day trying to call different doctors...  I'm not just going to sit around and act like nothing is wrong when there are 10 different doctors and therapists telling me different things are wrong with my daughter!

I tried calling her neurosurgeon's office...  They didn't get back to me.

I tried calling the physical therapist.  She was out of town.

...But then the phone rang and it was a lady who I work with at my new job.  She asked me why I sounded so upset so I told her I had been under stress lately dealing with my daughter and her problems after her surgery...

Well the lady from my new job actually had a lot of input to share with me so it may have been a Godsend that she called.  She told me that she too had injured her nerve years ago and did feel "dragon" pain when it healed.  Although her injury did not affect any of her motor control of her muscles but did cause pain.  She also told me that her eight year old son has had health problems and has gone through lots of neurological tests, physical therapy, etc.  (Her son is 8 now and was diagnosed with a brain problem or various neurological problems since birth...  Pray for her little guy too.)  But when I mentioned physical therapy to her I told her that while my daughter loves her physical therapist that the therapist didn't really have any experience dealing with my daughter's kind of problem.  I told the lady I work with that I had a hard time finding a therapist that works with children and was told that the only place that worked with children was at the children's hospital...

Well the lady told me that she knew of a therapist who worked with children and that she had taken her son to him when he was very young.  I got the office number and they were able to get us in tomorrow.

I think that because this type of injury rarely happens with children and most often happens to adults and atheletes it would be much better to see a physical therapsit who works with adults as well as children.  Maybe this new therapist has even seen some of the same type of injury before, which admittedly the children's hospital staff had not.

Also, even the rehab medicine specialist said that we should start with the electric muscle stim therapy right away before the is any more atrophy of the muscles...  And we don't have time to wait a few more months to see if the school sponsored PT will work.

So thank you for your prayers, this may be part of them being answered!

Blessings and best to you all.
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 amdre

  • Regular Poster
  • ***
  • Posts: 116
  • Liked: 2
  • " I Can Run!!!!!!!!!!!!!"
    • myspace.com
Re: Any Peroneal Nerve recovery stories?
« Reply #222 on: February 23, 2007, 04:30:31 AM »
Hey all,

Sorry i have been away for awhile. first off i would like to welcome all the new members to the forum and i wish you all the best of luck in recovery.

Mom444...im sorry that i havent been hear to offer my support...im im sorry to hear about the EMG test results and the worrying and heart ache you have been going through. what can they do abut the scar tissue stufficating the nerve? how would they go about breaking it down? i also had scar tissue problems and my therapists used laser treatment to break it up...but im guessing that your daughters  may be more adhesed if they are thinking of doing surgery again. man i cannot express in words how much i hope and pray for you and your family to overcome this. i just keep waiting for the post that recovery is going well....and i will keep waiting as i truly believe that things will get better. and i was also told by the doctors at my 8th month emg mark that i had 0 chance of recovery due to the lack of progression...we are very different cases but the possiblities are endless so what is said by a doctor is not specific to your child. we are here for you.

I have been away for awhile due to a pretty bad turn of events in recovery which caused about a full week off due to foot and ankle pains. everything was going well in recovery and on feb 12th i believe i went for my normal running session and as soon as i stepped down on my foot...i had a huge thrust of pain ..almost like stabbing the inide curve of my foot. it was so bad that after trying to run it off(stupidly) it got worst and i could not run let alone wlak without limping. ankle swelled and tder to the touch and there were no signs of the cause....i felt that it was or might have been my body readjusting to the better weight distribution i have but it wasnt. also my dorsiflexion became limited and i couldnt not dorsi flex past 90 and you coudlnt even manually pull it past 90. i was scared and thought that maybe i injured something without knowning due to the nerves not being in full recvoery yet. i finally saw my Doctor this week for the new "injury" and it turns out that my fibula has not been moving.do to the lack of use my muscles around the fibula have ceased up. he explained to me that when you dorsiflex the fibula moves to open up the ankle joint.(not his exact words..im trying to explain it myslef).it has been like this for awhile but has gotten worst due to the amount of pounding i have been doing on it. it was an easy fix..as he used tape to tape over the fibula and set it were it is supposed to be...but the bad news i have to do this everytimei am active until we can figure out a way to teach it react with the other motor functions again. im terribly sorry for the bad explaination...i just finhed with him today and meet with him again on tuesday and i will post the medical explantaion just incase anyone runs into the same problem. it s also getting to crunch time and the combines are very close and a week off did not work in m favor so i have to make up for the lost time.

Gald to se you all again...im going to catch up on the thread and i will posting again.
Andre
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

  • Forum Faithful
  • ****
  • Posts: 161
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #223 on: February 23, 2007, 01:37:18 PM »


Mom444...im sorry that i havent been hear to offer my support...im im sorry to hear about the EMG test results and the worrying and heart ache you have been going through. what can they do abut the scar tissue stufficating the nerve? how would they go about breaking it down? i also had scar tissue problems and my therapists used laser treatment to break it up...but im guessing that your daughters  may be more adhesed if they are thinking of doing surgery again. man i cannot express in words how much i hope and pray for you and your family to overcome this. i just keep waiting for the post that recovery is going well....and i will keep waiting as i truly believe that things will get better. and i was also told by the doctors at my 8th month emg mark that i had 0 chance of recovery due to the lack of progression...we are very different cases but the possiblities are endless so what is said by a doctor is not specific to your child. we are here for you.



Thank you so much Andre!  I hope you are feeling better too after your setback.

You gave me a lot of good information.  So you too were told to expect more healing my 8 months with your peroneal nerve, but you DID get recovery after that?

And how soon after your surgery did the scar tissue begin to build up?  How was the experience with laser treatment?  Was the procedure done by a doctor or a physical therapist? 

My daughter's scar confuses me.  I'm not sure if it is or is not as bad as they say it is.  It is mildly keloid and the "hard" part sits right at top of the fibular bone.  So it feels hard when you touch it but I wonder if it's actually the bone we feel?

Again, I have dug up every single research study I could find on peroneal nerve recovery and a lot of them say recovery AFTER the 7 month mark...  Some of the article even say recover took up to a year or after a year...  And her "dragons" started 6 months after her surgery, so I wonder if that was recovery just startiing to kick in a the 6 month mark?

Bless you all.
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 mom444

  • Forum Faithful
  • ****
  • Posts: 161
  • Liked: 0
Re: Any Peroneal Nerve recovery stories?
« Reply #224 on: February 23, 2007, 09:47:32 PM »
Thank God the lady from work told me about this new physical therapist!

It turns out he has extensive experience with peroneal nerve injuries so he knows how to treat them and knows what to expect!  The therapists at the children's hospital were simply too inexperienced with this type of injury and had I continued to take her there she could have sustained even more damage!

The new therapist also agrees that the scar tissue could very well be a problem.  I'm terrified but I am glad that at least we are finding this out NOW while we may still have time to do something about it.  Even if she does need secondary surgery hopefull whatever it is that needs to be done can  be done soon enough to not have too much interference with the nerve healing.

We are seeing a plastic surgeon next Wednesday for a consult on possible scar treatment.  Her neurosurgon should be back in won this Monday and the office better call us back!  If not I will call and call unitl they give me an answer!

Regarding "scar revision" treatment, II have already been researching as much as I can find and that too is so confusing!  Andre, you mentioned your scars were treated wtih laser therapy?  I would love if that were all they had to do.  Both the rehab medicine guy and the new physical therapist mentioned possible SURGERY.  I would absolutely hate to have her go through another surgery, but we'll do what we have to do.

The new therapist also recommended massage therapy for the scar so we are doing that right away.  We will do whatever we have to do.  We need to move quickly because we are in the one year window of opportunity for healing.

This is another bump in the road for us, we hoped to be sailing toward recovery by now but it looks like we still have more to do.

The question also came up as to when the actual healing that has happened so far began.  We got the latest EMG report and it does say "remarkable for the ability to record a response from tibialis anterior, stimulating the peroneal nerve below the fibular head and above the fibular head.  On her previous study, this response was not present." 

As for the "recruitment" in the peroneal innervated muscles" it was "slightly improed from her pre-op studies" and they had hoped to see more "recruitment...  particularly in the more proximal tibialis anterior."

The report also says there is an "exuberant scar ove the fibular head region.  One question that arises is whether this is somewho interfering with axon regeneration."  They also wonder if she is not recoering because the delay between her injury to the date when she had the surgery was too long...  But remember, she was misdiagnosed for so long!

The EMG doctor also want to repeat the EMG test in two more months to see if there is any more recovery  if it is going to occur.  He also said to in the meantime consider "scar revision surgery."

This is all so much to digest... 

Again, some of what he is saying goes against what I have read about peroneal nerve recovery.  The part about hoping to see more recovery by now contradicts what one research study I read said about how in one case after neurolysis, "Peronei muscles began to contract by 5 monmths, and signs of recovery in anterior tibial muscles were usuallly seen by 12 months."  Well, then in that case she is getting SOME response from the tibialis anterior...   The same study also says, Average recovery periods from 12 to 30 months were seen after neurolysis.  Most often, eversion innervated by superficial peroneal nerve branches to peeronei muscles recovered before dorsiflextion by anterior tibial muscle."  The citation for the article I am quoting is here:  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8832668&dopt=Abstract

I'm so confused and worried I could throw up.
« Last Edit: February 23, 2007, 09:58:23 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.