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Peroneal nerve decompression at the fibula head (No foot drop)

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jw454
jw454

I just can't believe it! Iam 2 weeks post op from peroneal nerve decompression at the fibula head. And my nerve pain has come back! I go for my follow up at the end of this week. My nerve pain runs right beside my shin into my foot and down into my 3rd & 4th toe! 

Currently on neurotin 1200mgs, elavil 10mg, motrin, tylenol. 

  Are there any peroneal nerve entrapment recovery stories out there. This nerve condition seems rare and is hard to find recovery stories!

Thanks 

1 like, 19 replies

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  • lindagkelly
    lindagkelly jw454

    Posted

    I take gabapentin which helps with the nerve pain in my foot.  Also amitriptyline is prescribed for many with  nerve pain.  I just started it.

    If it helps any, I did find an article from 2013 that is a study of 15 people who had the surgery. Out of the study, 2 people had a poor recovery, and 1 person got no relief at all, yet they concluded that 9/10 had excellent or good recovery. The name of the article is:

    Peroneal nerve entrapment at the fibular head: Outcomes of neurolysis  RSS  Download PDFR. Maalla

    , M. Youssef

    , N. Ben lassoued

    , M.A. Sebai

    and H. Essadam

    Orthopaedics & Traumatology: Surgery & Research, 2013-10-01, Volume 99, Issue 6, Pages 719-722, Copyright © 2013 Elsevier Masson SAS

    • jw454
      jw454 lindagkelly

      Posted

      Thank you linda! So funny b/c I read this study a few days ago and it seemed encouraging!  But when you have pain when your on meds and a decompression surgery I would have thought I would be turning a corner by now! 

      I have my follow up appt tomorrow. So we shall see...

      Hope your medical issues pan out for you. What are you taking gaba and elavil for? 

    • lindagkelly
      lindagkelly jw454

      Posted

      I have been taking gabapentin for neuropathy in my feet. I take 3 x 800 mg at night and 2 in the morning. It does help. I just started the amitriptyline - elavil but I will probably stop because I had my DNA tested a few years  back and I kept a copy of the report and it says I super-metabolize amitriptyline and may not get the benefits of it - for nerve pain.  I'll try it for amonth and if it's not helping I will discontinue because it has side effects of weight gain and drowsiness.  I have come to the conclusion that most doctors don't really know what they are doing, and t hey lump us all together with their one trick - my current doctor does RFA's radio frequency ablations for everything.  It helped a little with my foot but not with my leg. We have to be knowledgeable and be our our advocators.

      I read and study things all the time. 

      ​Linda

    • hope2heal
      hope2heal lindagkelly

      Posted

      Would you mind sharing your experience of radio frequency ablation. Was this for neuropathy in foot and which nerve did they target.

      Many thanks as something I have been offered but struggling to find people who have had procedure.

  • ian00569
    ian00569 jw454

    Posted

    I have suffered a neuropathic pain in the left big toe for ten years and have given up on trying to find a cure. It is not too much of a problem in the day time but in the evening it swells annd turns red and has been described by a pederactic surgeon as a "sundowner" toe".  I need help to sleep, and find that taking 20mg amatryptelin 225 mg pregabalin,  wrapping the toe with a johnsons babywipe doused in cold water and sticking the foot outside the bed covers, but raised on a pillow, does the trick. If I have to get up in the night,I refresh the baby wipe with cold water.  All this has taken years of experimentation and I hope it helps somebody out their
  • jw454
    jw454

    Posted

    Update: 6 wks post-op and I'm still in constant pain. My pain is right back to where it was before surgery. I literally had one good week at week 3. When I thought I was turning a corner. But that was short lived. My pain came back.

    I'm starting to think it may be another compressed nerve that we missed. When we did the EMG we only tested the Peroneal nerve. Until then I will continue my meds and follow up with the Dr.

    Thank you all that have responded!

  • jw454
    jw454

    Posted

    I'm 4 1/2 months post op. I started a small round of PT back in June (2016) and it helped my pain some. Pt felt it was more muscular from not walking on it that much for a year. The NS has no clue why I would still be having pain! My pain is mostly the tibilas anterior muscle. Surprisingly what helped the most was dry needling! I am not 100% I still have chronic pain in my leg just not as intense. I am walking straighter and with less crook in my knee. I can walk on the beach, go up and down stairs and I do go for casual walks daily.

    • lisa37039
      lisa37039 jw454

      Posted

      I would look up lower leg dysfunction and test yourself for it. It puts a large amount of stress on a weak tib anterior if it is bad and could definitely contribute to your nerve compression. In addition, I would find a chiro who does active release or scar tissue release and have them evaluate your foot/leg/ankle. Don't opt for anymore surgeries until you are sure that your leg is in alignment and be super careful who operates on you. Decompressions don't always work well if it is an anatomical issue and not a scar tissue issue from a previous injury or surgery. Also, you can easily guestimate where the compression is by using Scratch Collapse Test. Look up on YouTube. You should be able to find the compression using that test of it is really compression causing your symptoms. Knowing the true area would help you evaluate what is causing it. Good luck.

  • kerrie_84336
    kerrie_84336 jw454

    Posted

    Hi

    Looks like I'm likely to have this op as well

    And like you have struggled finding info

    I don't have foot drop either

    Could you share your experience with me please? Length of stay, size of incision, crutches or not

    Anything would be greatzs I have no idea and I'm scared heaps of what lies ahead

    I just recently posted on this site for this reason

    How are you going with it all now

    Hope you are happy and well on the way to being healed

  • jw454
    jw454

    Posted

    UPDATE: I had a second peroneal decompression along with a 4 compartment Fasciotomy feb 13th,2017. I had another MRI dec 2016 that showed a hernia in my anterior tib muscle. I don't know if this is going to fix my nerve issue. He feels I should be in a better place in 6 months. I have started seeing a pain management phycologist. And next I guess a pain management dr. I just started physical therapy 2weeks ago and I've only done 2-3 sessions. The small things they have me do sets off the nerve pain all over again. I have home exercises and I do them. I have a long road ahead of me. I still can't stand more than 10 mins and my leg nerve hurts. For the past 2 years I have walk with a crook in my knee. So all those muscle in the hip, thigh, back of my knee, calf, Achilles to my foot has to be retrained! Along with getting rid of scar tissue... no pressure tho... right!

    I'm about 6 weeks out from surgery and I'm not sure it worked yet. I still get nerve pain by the common peroneal nerve. The surgeons operative note says my common peroneal nerve was riding a little high. Close to my bone and was stuck in scare tissue from my last surgery. He moved it distially (to a more texted book path) and said it looked pink and grayish in color.

    What we thought was a hernia in the anterior tib muscle was actually a thinner than usual fascia. He checked all the other nerves while doing the 4 compartment Fasciotomy and no other nerves were trapped.

    In some ways I can tell a difference. I can go up a stair or 2. I do have days 1-2 (here and there) in a row that I'm pain free. Small victories... right!

    I'm trying to stay positive! But I'm beginning to think this nerve pain is here to stay!

    I know I'm not the only one out there that has had this issue. So I try and update this post when I can.

    • mike23657
      mike23657 jw454

      Posted

      Hi mate

      I've read through all your comments.

      Firstly I hope your ok and improving.

      Secondly I am going through exactly the same as you.

      I had decompression surgery.

      I was told I could go back to work so I did.

      At work I bent my leg and spilt the stitches.

      I had this dealt with and the would healed although with a larger scar.

      I'm now 7 months on and still with the exact same symptoms.

      I'm thinking maybe some scar tissue could be catching it although my surgeon just will not listen to me and seems to think I'm crazy and is always down to me to suggest clever ways and getting to the bottom of it.

      I've had a compartment pressure test which came back negative which is good.

      I'm becoming really stressed with all this and is effecting my life tremendously.

      I want nothing more that this pain to go.

      I don't even get numbness or puns and needles it's just paresthisias that travel down the nerve and leave my leg heavy and I feel a loss of balance.

      What are or were your symptoms and what do you do to relieve them.

      Im just running out of ideas as sometimes my leg feels light and fine but others it feels heavy and un co ordinated.

      Cheers

    • jw454
      jw454 mike23657

      Posted

      Mike,

      Sorry I missed this!

      I'm sorry your suffering! The pain can take your breathe away for sure!

      I'm 5 months out from surgery. And my pain has come back. Not as bad. But it's definitely there. Meaning it doesn't radiate down my leg and into my foot. Now it just hurts at the top of my anterior tib muscle and just on the other side of the fibula head. It seems to be a constant pain like before. Although "sometimes" if I get my leg up it will settle down to a 1/2 pain level. I have yet to find anything to completey get rid of the pain. I usually take Tylenol, Motrin or volteran gel.

      I Follow-up with the surgeon tomorrow for my pain. He is suspecting scar tissue. He has suggested that we do a steroid injection. And then I will probably be moved on to pain management.

      If you think it's scar tissue you can do your own grasting with the long part of a spoon and some olive oil/butter/lotion/baby oil also I just ordered silicone cups for going over scars.

      I was semi pain free for about a good 2 months. I decided to wean slowly off of the gabapentin. When I got down to 1-2 pills a day my pain started to come back. I have started going back up on my gabapentin. Now I'm back up to three a day and I can't get the pain under control. Ugh! The struggle is real!

      If this doesn't work I have contemplated having a conversation with someone about a spinal cord stimulator. But that is still no guarantee. There's also a peripheral nerve dr at Johns Hopkins. I keep reading about crps. But I'm not sure I fit in that category or not. Because mine feels good to massage it. And I do not have any burning sensations

      I'll keep this post updated with what my surgeon says tomorrow.

    • patricia81095
      patricia81095 jw454

      Posted

      hi, I feel your pain. Have peroneal nerve damage for 10 years which occurred after surgery for osteochondritis dissecans (loose cartlidge in ankle joint). Many procedures to try to calm the nerve done, nothing worked. Than I thought I found the right doctor whom said we will cut the superficial nerve above the a pain below knee. What a joke, that was 2013, than 2014 he did decompression below knee and top of foot to try to calm the peroneal nerve. From the day of surgery where the nerve was cut I have had horrible pain, now 3 years later still taking gabapentin 2700 mg and does not help pain. Through all this I never had an MRI done. I am going to my GP whom handles my meds and ask fro MRI that I hope can show the nerve damage, scar tissue etc. Do not kow the answer, even went to neurosurgeon asking about the neurostimulator. He told me to go back to pain mgt and keep upping meds.  I wish I knew what the answer would be, this now effects my walking where I have to stop every few steps and rub my leg till the pain subsides. This tells me meds do nothing. Any suggestions.. ( cut the leg off-LOL)
  • jw454
    jw454

    Posted

    Update:

    Im 4 1/2 months post op from surgery in feb. I saw my ortho surgeron today. Hes feels the pain im having is still nerve pain and possibly some scar tissue too. Hes referring me to a pain management team, for neuro prolotherapy,??? Tells me to keep moving as much as i can, still feels hopeful b/c my pain is not all the way down my leg, that my strength is improving and continue with pt.

    I will probably up my neurotin by one more pill this evening. I follow up with the surgeon in 2 months.

    • jw454
      jw454

      Posted

      I may not be doing to prolotherapy. Insurance doesnt cover it.
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