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Allergic Reaction to Teflon after MVD?

Posted , 7 users are following.

laurel3865
laurel3865

Has anyone heard of allergic reaction to the teflon pads after MVD surgery? I have had 2 MVD's which left me with severe 24/7 pain and uncontrollable involuntary movements that twist, pull and squeeze the heck out of my mouth, face and head (only on the surgery side). This started after the 1st MVD. The neurosurgeon didn't know why I was having this issue so he waited a year later to do an exploratory MVD surgery. This made it worse. I now have movements running around 24/7 like a tornado in my mouth, face and head with severe pain. I've been to so many specialists including neurologists, pain management docs, GP, neurosurgeons (about 20 different docs altogether). I've tried acupuncture and massage therapy. I've tried several different homeopathic docs...No one knows nor have heard of this condition. My only thought is that could I be allergic to the teflon because it seems to get worse after the 2nd MVD where the neurosurgeon decided to pad my 7th nerve (facial nerve) as well. The 1st MVD was to pad my 5th nerve (trigeminal nerve). Any input would be greatly appreciate it!

1 like, 7 replies

7 Replies

  • saaz79347
    saaz79347 laurel3865

    Posted

    Laurel, sorry to hear of all the problems you are having after MVD. I had MVD to treat TN on the left side of my face ( upper lip area ) in April of 2016.  I was on 800 mg of Tegretol / day prior to surgery and when that stopped taking care of the TN pain after about 1 year of going through TN and several neurosrugeons cosultations i decided to go with MVD.  MVD has taken care of my TN pain so far but i am having some of the same post surgery symptoms that you describe. Pulling / cramping sensations on the TN side of the face, some burning sensations that come and go, i also have full numbness on that side because of partial rhizotomy that they also performed on me.  I went back to my Neuro S with these symptoms and other docs as well and they don't have an explanation of why it's happening. It's as if they have never heard of it before. The only explanation i got was that it's not a reaction to the Teflon because the Teflon material is tested to be completely non allergic to humans but it could be because of the pressure the pad puts on the TN nerve.  They told me that it's possible that becuase it's weged between the TN nerve and the offending artery / blood vessel , it could be causing  all these strange reactions. Not very convincing but that's all i have been able to find. I am still searching for an answer.

    • laurel3865
      laurel3865 saaz79347

      Posted

      I also had full numbness after my MVD surgery. It took a year to get complete feelings back. My involuntary movements of pulling and twisting were just temperary at first. For some reason it only twist and pull when I was in the car driving or on the passenger side and also in the elevator. That was 2 and a half years ago. Now the pulling and twisting are 24/7 with severe pain. Did you ever get your feelings back in your face? What medications are you using for your pain? 
    • saaz79347
      saaz79347 laurel3865

      Posted

      Laurel,

      I don't have pain anymore so I'm not on any meds. I have those burning, crawling, pulling sensations that I described and still have the full numbness which is 24/7. It's been 10 months post surgery for me so I'm hoping that my sensations return to somewhat normal in the next few months. It was encouraging to hear that your sensations came back after 1 year. I don't understand why your pulling sensations are occurring so long after surgery. I guess we are all in the same boat here with a lot of unkowns. Wish you a good recovery.

  • m52432
    m52432 laurel3865

    Posted

    I too have wondered if it's the teflon. I had MVD in 2015, and 6 months after it I started to have weird shooting from surgery area down into the rest of my body. It's like my head is tazoring the entire rest of my body. To put it simple I shake nonstop all over at an insane speed, I wouldn't be able to walk or talk if I hadn't got the shaking under control mostly with meds, but lots of baggage involved with keeping all the electric shocks inside. None of the 13 drs can figure anything out yet. My next trials to control the shooting it Charlets Web tinctures. I hope u can figure something out soon. For me I'm still a pretty happy person even though life has drastically changed because at least I'm not in suicidal level pain anymore (-:

  • lorraine66560
    lorraine66560 laurel3865

    Posted

    Laurel, I see that this is from 5 years ago, but I too have been experiencing pain and believe it is from either the teflon, or the teflon and methyl methacrylate that they used to recreate my skull. I have been struggling and wish my surgeon was still alive because I know he would take me seriously.

    After you surgery did you have pain immediately? My pain did not occur until years later, but now I feel like I am on fire and no meds help. I had 5-7-8 nerves done and felt like I was on cloud nine after the surgery. No pain, no vertigo and no loss of balance. Now my surgical area has a crevice in the skull where the methyl metacrylate was placed and it has grown and pushed my face over to one side. But, I was told it is aging!!! Please let me know how you are feeling.

  • amyhoman
    amyhoman laurel3865

    Edited

    i also found this post which is old but very similar symptoms as I'm having now after MVD for TN . My surgery was 13mo ago and it relieved my TN issues but about 4-5 months after surgery I started having sensations like a billion microscopic bugs were traipsing over my face. I feel like I need 4 root canals on that side, which I did have two root canals on one tooth prior to diagnosing TN with a neurosurgeon. I am still numb all over that side of my face and head. my nose has started bleeding - basically like I've picked my nose raw and its scabbed over. plus the nostril is hard and seems to be oddly shrinking that nostril side (the nose symptoms for ~5 mo at this point). my right eye (surgical side) gets over being open by mid to late evening and i just close it and use one eye. oh, and the skull near the surgical site seems 'cracked' open under the skin - and it's super sensitive. at this point my TN is under control - but im not sure if I'd do this surgery again. I have no shooting pain though so baby wins!? My neurosurgeon, neurologist, dentist and primary care docs have no insights. im not in intolerable pain but this is crazy town. i feel like im allergic to whatever they put in (teflon pad i believe).

    anyone have further thoughts? any and all input appreciated!

    cheers!

  • Sasha8101
    Sasha8101 laurel3865

    Posted

    Hi everyone,

    I had an MVD in December 2017. Mine was a decompression of a nerve. I also have MS, so i consulted with MS experts before having the surgery. Everyone gave the green light.

    All was ok for roughly 2 years post surgery and then the pain returned.

    What transpired was that an ambitious but unequipped Registrar had performed the op and put in too large a piece of Teflon. I got an allergic reaction to the large structure which resulted in a rare granuloma. The Neurosurgeon tried to defend what had happened, but the damage was done and that's my life ruined.

    My pain episodes oscillate between periods of semi remission and acute pain and are getting worse over time.

    It's too risky to perform a repeat MVD and other surgical procedures run the risk of Anaesthesia Dolorosa. So I'm resigned to taking meds (Trileptal and Gabapentin).

    Happy New Year!

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