Allergic Reaction to Teflon after MVD?

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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!

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  • 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.

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    • 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? 
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    • 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.

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  • 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 (-:

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