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PKR Nerve damage after Episealer implant surgery

Celina said:
I must say that last month was better than the previous month likely to the lower temperature. I even had a few nights without waking up. I've waited so long already I can manage this month as well!
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With your improving pain level, you might not even need the treatment next month!
 
It has been nearly a week since I had my pain treatment. I only had an corticosteroid injection in my saphenous nerve. I actually already noticed an improvement the day after the treatment. I was able to lay the blanket on my knee. A few days later I was able to remove the blanketbow from my bed.

The very sharp pain (vas 8) is gone. It is now a more dull pain (vas 4) and it happens way less often. I am able to walk in house without my brace. I'm still wearing it outdoors and walking stairs.
I can walk painfree and with just some discomfort afterwards. I am able to do multiple activities during one day.

My knee still gets warm and sore at some times. Yesterday after aquajogging it was mildly painful. But it is still another week till maximum result and it is only numbed (so probably some signals will still get trough but not as strong?). I will speak to my doctor in 7 weeks because he didn't have time earlier. I do want to start the procedure to permanently disable this nerve with a small operation. I am really looking forward to have no pain in my knee anymore.

Seeing a much more brighter future :) :-) (:
 
This is fabulous news! I’m glad you’re documenting what is going on with your knee and the nerve problem. It’s not something we see often, and it’s important to hear about what has not been working and what does finally make things better for you. I sincerely hope this puts you back on a good road to recovery.
 
Unfortunatly I have another update. The injection in Decembre did change the sharp shooting pain from VAS 8 to 4 and it improved my symptoms a bit but actually what I said in the previous post was all result I got from it. I recently have had radiofrequency ablation (RFA) treatment for the same nerve. I do notice improvement: I can do certain exercises painfree that were painful before, my knee feels much better shortly after exercise and I recover a bit faster. I still have to be careful with planning activities and restdays. I am not more active than before my treatment. Nights are still terrible. I am now back at the point of waking up every night with a hot knee (37,6 - 38,3 celsius). It is now over 4 weeks ago that I had my treatment and most often result is expected within 3 weeks. So the chance on improvement is very slim, making me very sad. I also don't understand why it worked so well before, as pain relief, having no pain until 8 months after my implant (after initial recovery of course). I don't know what is the reason why this time the treatment isn't fully working. So far I've only found that some people have multiple Infrapatellar Branches. Does anybody have an idea? thank you for sharing.

I really was ready to finally get my life back on track but .... :cry:
 
I am so sorry to read this, @Celina. You must be so frustrated.

Have you questioned the doctors about why the treatment didn't give you pain relief this time?
 
Unfortunately nerve issues can vary widely and be very difficult to treat at times. Your surgeon and a neurologist are going to be the best resources to try and get some answers and maybe additional treatment options. I’m so sorry you’re having to go through this. Please know we’re always here to listen and offer support. Don’t give up! Keep asking questions, trying other doctors, and looking for an answer. Sometimes just a different set of eyes can be beneficial.
 
benne68 said:
I am so sorry to read this, @Celina. You must be so frustrated.

Have you questioned the doctors about why the treatment didn't give you pain relief this time?
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At this time I am trying to be patient and hope for a miracle. My appointment is planned for the 22th of April. I think if I would bring my appointment forward he would just say that it is too early to tell. I have found out that sleep medication are strong enough to prevent the usual waking up at night on lighter days (no sports, no strenuous activities). I am just using these a few times a week but it feels so great to have a good night of sleep again.
Jamie said:
Unfortunately nerve issues can vary widely and be very difficult to treat at times. Your surgeon and a neurologist are going to be the best resources to try and get some answers and maybe additional treatment options. I’m so sorry you’re having to go through this. Please know we’re always here to listen and offer support. Don’t give up! Keep asking questions, trying other doctors, and looking for an answer. Sometimes just a different set of eyes can be beneficial.
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One reason to tell about my nerve issues so extensive is to share my experience. I've read that nerve issues might be way more common but very often overlooked leaving us in unnecessary pain after surgery. My orthopedic surgeon isn't really familiar with this. I asked for a referral myself back then after reading that it was a possibility. My pain specialist does this radiofrequency ablation (RFA) a lot so he is the expert. I am not seeing an neurologist. I actually read that certain specialised plastic surgeons do the neurectomy (small surgery that permanently disables the nerve). My plan is to permanently disable this nerve but I wanted to start that route after having the full relieve result from this treatment.

Yes it is very frustrating and very hard keep my live on hold. It does feel that after 6,5 years my knee story is coming to an end. But this end is extended longer than expected.
 
I had a phone call with my doctor this morning. After hearing that my symptoms are nearly the same as before the treatment he decided to go for another treatment. I am happy he agreed. I asked him to do it like the treatment in Decembre 2021 because that seems to have worked great. I learned that there are 2 different kind of treatments so what I have said before wasn't correct:
- Pulsed RadioFrequency (PRF): 42 degree celsius for 4 minutes, it is meant to adjust / reset the pain signals from the nerve, it does NOT damage the nerve.
- RadioFrequency Ablation (RFA): 70 - 90 degree celsius for 2 minutes, burns through the nerve disabling any signals for about 6 -12 months on average.

This February I had PRF but in Decembre 2021 I had the RFA (70 degree celsius).

He also said he would do it a bit higher this time. Which means the Saphenous nerve itself instead of the infrapatellar branch. My first thought was alright as the chance on success would be even higher. But now I am doubting if I want that as I also want this nerve permanently disabled and just the infrapatellar branch would be better than the whole nerve that is responsible for pressure, temperature and pain for the whole inner leg and foot.

Any experience or thoughts on this? Thank you :)
 
I’m glad to hear that your doctor feels another treatment may help. I’m not sure they would actually “permanently” disable the nerve, but this is a situation we don’t frequently see here on BoneSmart.

I am glad you’re posting about this process, though. I agree completely with you that it may be something that is not always diagnosed correctly and your experience will definitely help others.

I’m glad you have a doctor that you trust and who is willing to work on this for you.
 
Treatment is "only" 7 nights away! This is not permanent. I've had this exact treatment before and then it worked 13 months for me. When this treatment will take all my symptoms away I am planning to go to a plastic surgeon specialised in neurectomy, removing the nerve. Which will permanently disable the nerve.

I wanted to give an update on my experience with the GABA supplement. It has made a huge difference with sleeping. My knee will still get warm (hot) but I just don't really notice it (painsignals won't enter my brain?). On an average day a 750 mg supplement is enough to make me have an (almost) normal night of sleep. I haven't had a single bad night using GABA on a non-activity day. 750 mg is not strong enough for me the night after activity or sports. So sometimes I use 1500 mg. I rarely use it during the day because it does make me a little drowsy. Other than that no side effects for me. I hope that I just don't need them anymore shortly after treatment. That my nerve damage is finally treated. But until then I am so happy I found the GABA supplement.

I have actually read that nerve entrapment after surgery, especially TKR might be more common than expected. It would have been better if the orthopedic surgeon would recognise the symptoms. In my case I had to ask them for the reference for the pain specialist because I was thinking about it being nerve damage. Finding information about it really requires some knowledge in medical terms and scientic reading. So I am glad to be able to share my story. Maybe it would be good if my title is adjusted to: "nerve damage after Episealer implant surgery". So it quickly covers my whole story. Thank you :)
 
Good luck!
Thanks for documenting your experience with gabapentin.
I hope the nerve treatment works well this time.
 
Fingers crossed! :fingersx:

I don't use Gabapentin (medication) but GABA (OTC/supplement). Gapabentin is actual synthetic GABA. I don't know why that is prescribed instead of just using a supplement. Perhaps because doctors are not that familiair with supplements. It also has less listed side effects, but perhaps because it is less used and less monitored.

@EalingGran thanks for adjusting my title :)
 
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Celina said:
Fingers crossed! :fingersx:

I don't use Gabapentin (medication) but GABA (OCD/supplement). Gapabentin is actual synthetic GABA. I don't know why that is prescribed instead of just using a supplement. Perhaps because doctors are not that familiair with supplements. It also has less listed side effects, but perhaps because it is less used and less monitored.

@EalingGran thanks for adjusting my title :)
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The issue many health professionals have with OTC "supplements" is that legally the FDA has no authority over their quality.
I can't speak to GABA, but over decades there have been vitamin and herbal supplements that when independently laboratory tested have ingredients that aren't on the label, have labeled ingredients not actually in the product, or have different dosages than the label says.
Having noted this, yes, I do take OTC supplements, hoping the seemingly reputable brands I have seen for years are accurate!
 
Interesting factoid from ScienceDirect: "Although structurally similar to GABA, it does not interact with GABA receptors and its mechanism of action in treating mood disorders is unknown. Nevertheless, central nervous system GABA levels increase in a dose-dependent fashion with gabapentin use."
 
Today marks my 7-year-knee-anniversary. These 7 years were full of pain, challenges and uncertainty but also hope, compassion and inner strenghth. After 2 failed procedures I received an Episealer implant that finally "healed" my OCD. Unfortunately nerve damage developed as a complication of previous surgery. My latest and hopefully last surgery was the removal of the damaged nerve(s) one week ago. I am currently recovering from this surgery (recovering time is about 2 weeks) and then can start gaining strength. My life felt like it was on hold and I can't wait to just do activities without having to think about the consequences, find a job, sleep without aid and experience no pain. There were many moments that it felt impossible but it now feels really close.

Find the right professional and get a second opinion if you think it is necessary.

Stay strong & stand up for yourself!
 
Thank you for the uplifting and inspirational update, Celina!
I am sorry the road has been long and hard for you. Thankfully things are finally looking up.
We appreciate you taking the time to keep us posted on your journey. Many blessings to you now and in the New Year!
@Celina
 
Sorry it has been such a long journey for you. You are right that knees are so complex that one has to become an "expert patient" and advocate for oneself.
Good luck.
 
I’m so happy for you. I agree with Layla that your message for other BoneSmarties is one we need to hear - one of hope and looking forward rather than worrying about what you’ve had to go through to get to this point. You have to right attitude and I look forward to following your journey from this point forward.
 
May 2025 be the year of moving forward!!!!
 
My last surgery was 80 days ago and I can finally say my knee feels good! I have no pain, sleep really well, walk for 1 to 2 h without any issue except for fatique. My knee is still weak, it needs a lot more strength but that is actually the only issue now.

Recovery took a bit longer than expected (surgeon said 2 weeks) but I had no strength and was resting my knee as much as possible before surgery so it had to get used to every activity. I had 4 slow weeks and than another 2 -3 weeks of elevating a lot after any activity.

Funny thing is that my surgeon was very suprised with how well the surgery did work. He wasn't very hopeful since the injections inside the nerve never really worked.

I feel that this is nearly the end for my knee-story for hopefully forever but definetly for a very long time. I am so lucky I found these great surgeons, got enough knowledge to be able to read scientific literature which led me to the correct diagnosis for the nerve damage, got all the needed support from others (including you) and faith in myself to never agree with a lesser solution.

I want to thank everybody who replied on my posts. I will still read all new posts and keep my email notification on just in case there is somebody here who is experiencing similar issues and would like to ask something. Wishing everybody faith and strength in their own journey!
 
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