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
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
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?
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
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
have you tried witch hazel?
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!
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.
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.
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.
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
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.
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
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.
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.
I may not be doing to prolotherapy. Insurance doesnt cover it.
Hi JW. sorry its been a while I never realised you replied.
Im glad at least its improved for you. Hopefully your getting somewhere.
i tried amytryptiline for pain but didnt work.
Next step for me is get a cortisosteroid injection into the nerve area to reduce inflamation.
Hopefully this will help with pain and confirm the problemed area.
the MRI scann I had showed nothing although an ultra sound showed a slightly enlarged common peroneal nerve around the peroneous longus attachment to the fibula neck.
mhy surgeon said its expected that the nerve will be larger after decompression??? very odd comment. how could a nerve thicken after some tissue has been removed away from it?.
i am from the UK so now I am looking at sending my medical records to Susan mckinnon in the US for her opinion.
Mate I think you should try the prolotherapy if you can afford it if its been recommended. It may help you and be well worth the cost. health is no1
Hi jw, This thread is just about the only thing I can find with discussion on the peroneal nerve decompression. Mine was at the opposite end (even harder to find!) down near my ankle, right side. Superficial peroneal nerve decompression/release. My surgeon was never specific on the title of what I had done. I'm two days shy of 6 weeks post op. Incision on lateral right side of ankle.
Brief history: I have fibromyalgia anyway. I stepped off a curb wrong March 18th and rolled right ankle. Was initially diagnosed with minor sprain. Diagnosis from urgent care didn't feel like the right answer, sought a specialist orthopedist. Diagnosis high grade 2 sprain with peroneal nerve compression. Sprain healed, pain did not. Did two rounds of steroid injections in superficial peroneal nerve, and when those didn't work, had the decompression/release surgery. Healing has been slow. ROM is pretty much back to normal, top of incision is having some issues healing and I'm using Silvadene cream to assist in healing. Had done two levels of PT, but that was stopped when healing issues arose.
Long story short, I'm still getting sharp stabbing pains around my lateral malleolus that hit an 8 on my already skewed pain scale. I have no idea what to expect from the healing process, both of the surgical site (which the surgeon swears he's seen before and isn't concerned) and of the nerve itself relearning "how to nerve".
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)
Surgery on my back caused my peroneal nerve pain in the opposite good leg. I am 16 days out from decompression of both my common and superficial. Both resulted in 3 inch scars. I had immediate leg pain relief but not foot pain relief. My foot pain is slowly diminishing and my foot function returning. Still a long way to go. I recommend Dr. T. Wilson at Stanford. He and Dr. Kliot spent 2+ hours with me 2 days prior to surgery getting the diagnosis right.