So here it goes. My failed MVD was on October 18th of last year. Almost reaching my year mark. Still on 1000mg of tegretol, baclofen, and topomax (started about 4 months ago for a new onset of frequent migraines)
I been telling my neurologist for some time that that the surgery site doesn’t feel right. And that I’m pretty sure there’s a screw loose in my head. Literally. Not a joke. Even though some may beg to differ lol. I still cannot sleep on the side of surgery either. So without relief of the TN I now have some added grief.
Recently I became more stern with neuro that I believed truly that something wasn’t right and I don’t feel this discomfort and loose screw is normal and he agreed and said we need to get the surgeon involved again.
Little bit of history. I’m not a big fan of the surgeon. It turns out I am the youngest he has performed this surgery on so for him, this surgery needed to be PERFECT. And when I tried to tell him it didn’t work he just wasn’t hearing me, and kept repeating questions until I ended up coushoning his ego and telling him what he wanted to hear…
Thursday I had my appointment with surgeon. Again danced the same dance… the NP felt my head and first words out of her mouth were “what are those things sticking out like that?? That’s not supposed to feel like that!” Yet when the surgeon (looked) at surgery site he kept commenting on how well the scar healed. HELLOOOOO DUMMY! Grrr I again told him of my pain and concerns. He started feeling around and pressed to the point he brought me to my knees in pain at the surgery site. Why is this happening!!! That’s when he finally decided to order a CT scan. This is coming tomorrow and will be my first scan since surgery.
During appointment he started telling me of a different surgery he can perform to try and put slices into the decompressed nerve to try and eliminate the shocks. Quite honestly I don’t want him playing anywhere inside my head ever again!!! He also said he’s pretty sure he needs to take out the hardware put in place to hold the bone flap in. Which is what is loose I believe.
Has anyone ever gotten a second opinion from a surgeon before? Is this some kind of malpractice or something? I was terrified to ever have a surgery to begin with but desperite enough but I really thought with all the promises this would have been al behind me now… I just don’t know what to do!
Any advice?? Any similar experiences?? ️:heart:️:heart:️
Yes, please get a second opinion! In your situation, I would not hesitate at all. Get a referral to a very EXPERIENCED neurosurgeon. I’m fortunate that my surgeries (not for ATN) were done by excellent surgeons, but they are just like any other doctor (except egos seem somewhat larger), and if there is any question at all, it is totally within reason to get a back-up opinion on the work that was done. Start looking today!
What is ATN? Advanced TN? Yes this surgeon def has a large ego. Said he did the decompression correctly with no issue. Yet it still never went away. The ONLY thing that DID get relieved was the touch triggers. If anything I am very thankful for that. Just not for the rest. Not easy to just find a neuro surgeon my insurance covers that’s the sucky part. But I’m sure gonna try.
Nvm Atypical got it. Dummy moment. I don’t know if mine is considered that now since the survey was done to fix the artery but now I’m not even sure he did the darn surgery right. Grr
It might be worth while to pay out of pocket, and/or travel a ways, to have a good neurosurgeon evaluate you. Just to see you in person and took a look at before and after scans, etc…then decide where to go from there.
She is in Lindenhurst NY–suggestions anyone?
I work in the health insurance industry – keep in mind you have the ability to appeal ALL coverage and to customize your plan to your needs by doing so. Most plans want to help you prevent problems and are very open to appeals. If you want to do an appeal and don’t know where to start please feel free to contact me and I’ll walk you through the process.
And @ziggy Update. So guess who was right and who was WRONG! There is for sure a screw loose. And also something with one of the plates buckling. When he comes back from vacation he wants to removed the screw and one of the two plates. I’ll be getting a phone call this week to schedule. He said I can stay awake and go home after a few hours of being watched. After that? Good riddins!!! Just sayin. Always trust your gut people.
Good for you for getting that checked out! You’ll be able to use that “I had a screw loose” line for a long, long time! Hope things begin to settle down.
You should definitely seek out a second opinion if you have doubts about your current surgeon. This person is cutting into your head so you can never be too cautious especially since you feel something is wrong. I don’t know about the whole malpractice thing. You sign away so much of your rights in the initial paperwork that it’s really hard to hold anyone accountable when things don’t go as planned. I would just look into having someone else check you out.
If it were me he would not be touching me again. Sounds like my surgeon. Everything has to be a success and when you wait on things they get worse. Get a second opinon. Your doubting is your gut feeling