Just wanted to check in and share my story so far. I underwent surgery June 30th, for what my doctor diagnosed as trigeminal neuralgia type 1. I woke up in incredible pain that pain meds did nothing to help. It felt worse than before and I regretted everything about the surgery. The doctor says they found a large vein near my nerve which was most likely the offending vein but that they also competed the Dandy procedure. Things were pretty rough the first night in icu, nausea and vomiting along with the pain. The next morning I began improving and got a verbal ass kicking from my neurosurgeon with poor bed side manner but great surgical skill. He told me there was no way I was worse and that I needed to get out of icu and off the dilaudid. A few hours later I was moved to a general room. I did a few laps around the unit with a walker that evening and woke up the next morning feeling better. I was discharged that afternoon and besides pain at the incision site I’m doing okay. It hurts to talk or look at things for too long, like my eyes get tired. My nose has been stuffy for some reason and I worried it was a csf leak but I don’t think that’s the case. My tn pain can be triggered if I irritate the incision site. It seems like that pain flaring up triggers my tn, otherwise the normal triggers don’t tend to bother it. I do have headaches quite often that respond well to ice packs. I am hoping that I continue improving. My doctor only prescribed me Tylenol#3 for post op pain and I don’t think it’s sufficient but my general doctor is out until Monday so I’ll be White knuckling it the next few days… Here’s to hoping I’ll be pain free in just a few days.
The evening I wrote the original post I woke up with incredible head and neck pain. I was nauseated, vomiting and running a fever. I had zero tolerance for any light or sound. My partner rushed me to the ER and after waiting over an hour and a half I was given pain medication and told I needed pre-emptive antibiotics for meningitis. I did not know at the time but if given antibiotics before being tested for meningitis, the results will be inconclusive. This is because the results could show up as negative but it wouldn’t be clear as to if it was present before antibiotics were given.
Once the attending Neurologist came to me, he asked me to touch my chin to my chest and I couldn’t, I was continuing to suffer the extreme headache, light and sound sensitivity and nausea. He though it best I move forward with getting tested for meningitis and I was admitted into hospital.
I suffered the pain of what feet like a migraine, with no ability to tolerate sound or light for about 3 days. I could not focus on anything, the only recourse I had was lying in bed with mask over my eyes as ear plugs inn and ice pack on my neck. After doing some neck stretching, my lovely mother giving me a neck massage and a few days of meds I was slowly improving.
They never found a bacteria or virus in my body but they found increased white blood cells and inflammation after performing three lumbar puncture. All other tests came back normal.
The infectious disease doctor at the hospital thought it best we move forward with compete meningitis treatment to be safe.
I stayed in the hospital for five days and now am home with a additional 8 days of i.v. Antibiotics.
I am now 13 days post op am feeling much better. The trigeminal pain had decreased drastically but I continue to have pain off and on.
The hospital stay was something I had never expected and certainly have some emotional trauma around but I am so happy to be rid of most of those symptoms now and at home so I can get the rest I need to fully recover.