Any Peroneal Nerve recovery stories?

[amdre]

Jacky

i have to say i am jealous...i can only imagine the relaxation, comfort and warmth from the sauna..and all that other good stuff. have fun for me too.

More video footage being posted..this time we had the camera running the whole time instead of breaks ..because you couldnt see progression and or the faults,and imperfections. the footage is kind of long so i need to cut it in to two so i can post them. Basically its retraining lateral movement and strength in my stability..by correction imperfections in my form and the way i have been sheilding my knee.i still hav been protecting it ...and if you watch the footage you can see when i jump on it to balance my left knee automatically buckles in to avoid another outward dislocation....this was consistent almost everytime...until i slowly started to regain some sort of confidence again.I find it very interesting that i know what im doing wrong and want to change it in my mind but for some reason i have stored the off swtich to my cowardness deep in my subconcious...with a lock and key. i have gone through up and down phase where my menatl was more stable then my injury progression and now it seems my injury progression is more stable then my mind. i need to find something or away to awaken my confidence and trust again as it seems so foreign to not rely on your bodies protective mechanisms. Any suggestions? what keeps you confident or even timid about doing "normal" activity on your injured leg?

Thank you
Andre

[mom444]

Hey all,

Here's our update.  My daughter had her "psychological evaluation" today that we needed to do before we can be considered for PT from the school district.  She will have a PT evaluation next week.  Turns out she is "off the chart" and has above average intelligence! 

In regard to her leg, we'll still need to see if her symptoms are enough to qualify for school district sponsored PT.

No mention of the "dragon" for the past two whole days now.  I'm still staying calm yet optimistic.  As some of you have said there were times where you went a while with no pain.

Andre,

Thanks for your detailed updates regarding your recovery.  YOU should be a physical therapist!     You are definitely an inspiration in how you are so organized and methodic in your recovery.  Thanks too for all of your enouragment with my daughter 

Jacky,

Have fun on vacation/holiday!  Letting your body relax and feel good helps with recovery.  Thank you to for all of you well wishes for my little girl.

I'll check back and let you know if the "dragon" comes back. 

[amdre]

Hey all

have a great weekend ....and Go Bears !!!!!!!!!!!!!!!!!!!!!!!! its the SuperBowl(American Football Finals) so basically a national holiday .....and the Bears hopefully are gonna take the big one.
Take Care everyone and hope that you are all doing well.

[Hamish9]

Hi Andre,

I have been supporting the New Orleons Saints so not happy they have not made it through. As you are supporting the Bears I will shout for them. It strarts 10pm tonight here so looking foeward to it.

Hamish

[mom444]

Have fun everyone.  We will have a house full of people tonight watching "The Game."  I don't really know much about football but we have the party anyways...  I just like the commericials and the snacks    My daughter by the way is rooting for The Bears to win...  Well, because...  she likes bears.

[mom444]

Updates...

Yesterday we took my daughter for yet another physical therapy evaluation, this time with a different therapist.  My daugther seemed to do okay with walking up stairs and kicking balls but the therapist still thinks we should be eligible for school sponsored PT.

Also, this new therapist recommended that we "massage the scar tissue" on the outside of my daughter's leg.  I don't know what I think about that.  I'm afraid to manipulate the area...  But have any of you heard this?  Does it help?

Also the scar tissue directly covering the skin over the fibular head, where the builk of the surgery was done, is thick and hard.  The PT yesterday said that hard scar tissue on the surface of the skin could possibly impede the nerve growth.  If that is true that scared the daylights out of me.

This morning, I touched my daughter's leg over the thick part of the scar and she said, "Ow!"  She said it hurt when I touched her on that part of the scar.

I got scared so I called her neurosurgeon's office for a consult.  They are yet to call back.

What do all of you think of this?  Have you had pain over your scar tissue?  Were you referred to massage the scar tissue?  Did any of you have pain on the surface of the skin, scars or no scars? 

Also, there has been no mention of "dragon" feelings in her leg for over a week now...  I was hoping they would be more prevalent and constant...  If that in fact does signal healing.

I'm really getting scared today.  I'm ready to cry and I'm starting to get a tension headache.  I worry about my little girl.

I hope you all are doing well.

[amdre]

Hey Mom444

i would first just like to say that we are with you 100 percent and it kills me to hear that you are on te verge of tears as it brings back memories of the way i myself felt...but i can only imagine what it must feel like to be the parent and have to deal with something like this...and for hat i commend you and as a parent myself i must also say you are handling your daughters situation flawlessly. try not to be discouraged though from progression...it may seem easy to say from me to you ..but it is honestly the truth. nerves and regrowth are unpredicatble and the only info (as you know) is time. whether that time heals you early or late it will heal and everyone who is suffering needs to stay optimistic and hopefully or there chances to recover will become limited. Vent your emotions anyway you can so you can be strong and ready for anything you may be told from Docs or therapists.

massaging scar tissue....they did do this to me but not that often...i guess they said something about the scar tissue pretty much strangling the nerve(not there words exactly). this was not a direct massage and was not deep to actually hit the nerve it was basically on the surface. and with touching i had pain but nothing that would send me through the roof....i could feel it..and it felt almost like it was sore but with alittle more of a kick. and with surface pain i do not recall any. also with the Dragons(i kinda like this word for the descripttion now) when my became inconsistent there were times when i wouldn't feel them for days and maybe even weeks i can't say exactly how long the span inbetween.

again we are here for you  and your daughter ....i was wondering....does she have any questions for us? does she ever want to know things about her injury or feelings she is feeling? or is she not that vocal yet?
Wish you all the best

[mom444]

Hey Mom444

i would first just like to say that we are with you 100 percent and it kills me to hear that you are on te verge of tears as it brings back memories of the way i myself felt...but i can only imagine what it must feel like to be the parent and have to deal with something like this...and for hat i commend you and as a parent myself i must also say you are handling your daughters situation flawlessly. try not to be discouraged though from progression...it may seem easy to say from me to you ..but it is honestly the truth. nerves and regrowth are unpredicatble and the only info (as you know) is time. whether that time heals you early or late it will heal and everyone who is suffering needs to stay optimistic and hopefully or there chances to recover will become limited. Vent your emotions anyway you can so you can be strong and ready for anything you may be told from Docs or therapists.

massaging scar tissue....they did do this to me but not that often...i guess they said something about the scar tissue pretty much strangling the nerve(not there words exactly). this was not a direct massage and was not deep to actually hit the nerve it was basically on the surface. and with touching i had pain but nothing that would send me through the roof....i could feel it..and it felt almost like it was sore but with alittle more of a kick. and with surface pain i do not recall any. also with the Dragons(i kinda like this word for the descripttion now) when my became inconsistent there were times when i wouldn't feel them for days and maybe even weeks i can't say exactly how long the span inbetween.

again we are here for you  and your daughter ....i was wondering....does she have any questions for us? does she ever want to know things about her injury or feelings she is feeling? or is she not that vocal yet?
Wish you all the best

Thanks Andre.  Your words make me feel better.  I tell my daughter about all of you on the board and she knows you by name.  We even pray each night for "all of the other people who hurt their legs." 

This may be good news but I finally got a call back from her neurosurgeon's office.  At first I consulted with a nurse and I told her about all that we had experienced lately such as the "dragons" that appeared about two weeks ago and the waking up in pian and how the other physical therapist mentioned the scar tissue and how my daughter says it hurts when I touch her scar.  Of course the nurse didn't want to say a definite "yes" or "no" to anything, I think they are worried about liability...  But she said that the feelings of pain were "consistent with the healing process."  I asked her if the "healing process" meant recovery and she was extremely careful to reiterate the words "healing process" rather than actual recovery or regeneration.  I hung up with her and then about ten minutes later the phone rung again.  It was the nurse again saying that after she got off the phone with me she had an actual consult with the neurosurgeon and explained the situation to him.  The neurosurgeon said that what we reported actually sounded like good news and that the pain may in fact be consistent with nerve regeneration.  In fact he even said that he wanted to go ahead and schedule another EMG as soon as possible.  Then I nearly CRIED again, but tears of hopeful joy.

Again, I am trying not to be too positive or too negative.  I'm just waiting and keeping the faith. 

Thanks also for telling me that the "dragons" do in fact come and go and sometimes stay away for weeks at a time.  I got really so extremely excited the first time she said she felt them that I kind of got disappointed when they left.  But the nurse did explain that the feelings of pain are often sporadic and that it is normal to not have them constantly. 

So Andre, just to ask you again...  Is it okay if I rack your brain?  When you had the "dragons" they would in fact come and stay for a few days and then they would go away for a while?  Again, how long after your injury did you start to feel them?  I think you said eight months?  Also your injury was sports related and you didn't have neurolysis, did you?  Still, you did in fact get some peroneal regeneration? 

It just helps me so much to get reassurance from people who have been through this before.  This type of injury is not very common and as mentioned before hardly any of the many, many doctors we saw had even seen this type of injury before.

Thanks again Andre    And, yes my daughter is very verbal    I'll ask her if she has any questions.

To Jacky, Hamish, Stabsco, Davey, etc...  How are all of you doing?

S

[amdre]

Hey Mom444

hey mom in answer to your questions....no i dont mind at all if you ask me questions..feel free to ask me anything you like.in regards to the "dragons" i started getting the approximately a few weeks after the injury and during the day i wouldn't feel them as badly as i would at night. Hamish pointed out when we discussed this earlier that it may have been because during the day or minds my be more ocupied with daily activities. but i could always count on them at night and they would be very intense. it reduced almost monthly (the intensity of the Dragons) until if finally felt as if they went away. this was about three months after the injury.maybe a month or two after they came back but not as intense and consistent. when i say not as consistent i mean they would be very intense one day then dull another ..this two also happend for about two to three months and again went away. now i could just be sitting down having a break or usually at rest and i could get a surge out of nowhere and at this point there is no real pattern to the sugres they just come and go when it pleases.

Yes i injured myself playing sports ....and dont believe i suffered from neurolysis...i had crushed the peroneal nerve when i dislocated the knee which left me just paralysis. and to be honest....i couldnt tell you whether i have regeneration or not.....i had an EMG at the 8th month mark had no readings of nerve regeneration or function of the nerve ...but i was able to evert,invert. i was told that i was compensating. two months after,i believe, i got my dorsi flexion motor skills back and decided i didnt want anymore EMG's mainly because it was messing with my motivation and if i was compensating then i guess it was okay because i had my motor fucntions back and they were and are showing signs of regular strength and stability. i do believe that it has regenerated mainly because the Tibialas Anterior muscle is firing...and the peroneal tendon is also firing and these muscles are controlled by that nerve

so ......clincally i havent gotten a definate answer if the nerves  have infact regenerated..but i believe they have from my progression....hopefully i was able to answered your questions. im off to rehab now take care Mom444 and others ...talk to you later

[mom444]

Thanks Andre...  Good luck at rehab.

Well...  My daughter woke up crying again last night.  I immediately wondered if it was "the dragon."  When she woke up I aksed her what was wrong, hoping she'd say her leg hurt...  She instead said she had to go to the bathroom.

But then I asked her if anything hurt and if her leg hurt.  Welll, I shouldn't have said that because she of course said her leg hurt.  So then I asked her to point to the leg that hurt and she pointed to her NORMAL leg.  So, again, she might just be saying things because we are inadvertently prodding her or she says things just off the top of her head.  She wanted me to lie in bed with her then because she was crying so much, so I still wonder if maybe she DID have pain...  But it's hard to tell because she's so young. 

...However last night she was kind of squirming her legs around a lot...  Maybe there really was pain.

My husband mentioned that a few weeks back when she woke up with the "dragon" that she was wimpering and crying in agony, he said she looked and acted like she was very much in real pain. 

It's difficult for us because she is only three and even though she is pretty verbal, three year olds sometimes make things up or they might say "yes" to something just to go along with what Mom and Dad tells them. 

When any of you had the "dragons," especially at night, did you find yourselves squirming your legs around a lot? 

Thanks again everyone.

[j_smi001]

Hello All,

Back from my holiday and had an excellent time.  I made the most of all the facilities and most importantly stayed on the horse.  I have caught up with your posts.  

Just to join the debate, I also got told I was compensating when I was able to invert and evert my foot but now the dorsiflexion is returning I have been told that the prognosis is now looking much more positive.  No one will give me a straight answer to the question, ' Will I get a full recovery?'  I think it is because they honestly don't actually know.  It is frustrating but I just keep concentrating on my recovery and so long as it progresses, no matter how slowly there is always a chance it will fully come back, and if not I actually quite like my splint.  

Andre, your suggestion to ask if Mom444's daughter has any questions is an excellent idea. And Mom444 please I also think you are doing brilliantly and remember we are here for you and your daughter, all the way.  

On the not so good news, at hydrotherapy yesterday my knee cap on the other leg decided to pop out of its groove and is now very sore and swolllen and I am pretty much feeling sorry for myself at the moment.  I still don't have a date for this knee and it is deteriorating fast, soon I literally won't have a leg to stand on.  Still on a positive note I have been excused from physio and hydro for two weeks to allow it to settle back down again, so I am greatful for that (and because the weather has turned very cold, icy and snowy (not condusive to riding a scooter!)

You all take care and speak soon.

[j_smi001]

Mom444 most definately I squirmed at night.  Most of the medication I took was at night.  I had amiltriptyline for nerve pain at night, Quinnine to stop the cramps, again at night.  My nurse at the convelecent home described it as restless legs.  The pain I had could be quite severe with shooting shocks and also a constant burning sensation.  But as Andre has said not all the time and it gets less severe as time goes by.  I think the real indicator is actual movement in the foot as some of my pain was described to me as sympathetic nerves (i.e. those responsible for pain, colour, temperature) and noy the same as the main peroneal nerve responsible for movement. 

[amdre]

hey all,

good to hear from you Jacky...glad you had a good break. im sorry to hear about the troubles you are having with your knee.was it something that yo did specifically to pop it out of its groove or is it just over used due to compensating for the weakness in the other? why are you feeling sorry for yourself? you are doing a great job and maximizing the potential to heal and that is all you can do. try not to feel sorry for yourself...and i know when someone tells you that ...it kind of does nothing because it may be just the way you feel at the moment but you doing great and in regards to the date for your leg...can you push for one or is it the Docs call? i wish you the best and i posted some video footage of the C.A.T board i was talking about along time ago when we first started talking. the devices that helps strengthen dorsiflexion. Best device for this ...hands down and i use it everyday....maybe you can take alook at it and emulate the device with different equipment if you dont have access to one.

Hey Mom444 in answer to your question......i was squirmish and could hardly sleep when it first started shocking....as Jacky stated ..i too would take my meds at night so i could get somewhat of a good night sleep.when they became not as intense ....it would bother me but i ould slep through it after awhile.

Take care all

[Hamish9]

Hi Guys,

Just an update of where I am! I have been getting a little excited as I feel that there may be some regeneration of the nerve. It is now 5 months since my injury and throughout that time if you touched the site of the injury I would get tingling in my foot but not if I touched my leg anywhere below the injury. It now seems that I am getting a little bit of sensation in my foot if I touch a little further down my leg.

On the down side I go under the knife again on Monday to get my ACL reconstruction so its back to the leg brace and crutches for me but I know this will not be as bad as before.

Take care all,
Hamish

[amdre]

hey Hamish,
it is scary how our injury experiences are very similar.....when i had no movement i would do the same..touch the injury or anywhere around the injury and i would start sending shock or sparks down the leg to the foot ..jst from touching or rubbing it. and the same with me as i felt the more i touched it ..the better and maybe faster my sensation and feeling would wake up....and that was the first thing i started to notice before i started getting movement and that was sensation and feeling coming back...it seemed to be very spotty as it came back...how is yours? when i say spotty...i mean some areas would feel normalish and oothers numb. good luck with the surgery and you are right ...this set back is going to be a postive one in your recovery....Congrats on the new feelings and ttys.