Prolonged Nausea after Microvascular Decompression Surgery
 

I apologize beforehand having included the whole timeline. But I have seen enough of these threads to see that the rest of the story gets asked almost immediately after posting anyway. Thank you for reading in advance.

In December of 2016 I was diagnosed with right-sided Trigeminal Neuralgia after about 6 weeks of initially developing Bell's Palsy from an ear infection. Less than a week after the Palsy cleared up the V cranial nerve was inflamed by a post-infectious process and I began on the wonderful road of Trigeminal Neuralgia pain. After fighting tooth and nail with Medicaid for almost a year (having them use policy and incompetent doctors to try and prove I was just a drug addict yet basically tried to force opiates down my throat every month) they were able to approve an MRI after a long time of being poisoned by carbamazepine/oxcarbazepine and a few other things that made it worse.

Several doctors almost threw out my case because "if carbamazepine/oxcarbazepine doesn't work then you don't have TN..." Those caused me allergic reactions, stomach bleeding, nausea and my pain to increase. Thankfully a glitch in the Matrix got an MRI approved and they discovered I did in fact have TN and another 8 months of waiting in the queue. I spent months on gabapentin and oxycodone 24/7 (which barely worked, just kept me vegetative) before I was recommended by a few doctors to try medical cannabis and the relief was instant and way more intense amount of relief than anything else. Almost pain free sometimes with a few ER trips here and there for uber intense episodes not controlled by anything. I finally got to see a wonderful Neurosurgeon in Albuquerque, NM and he scheduled me for Microvascular Decompression surgery within a month. The surgery was a success.

Within hours after the surgery I was TN pain free with only a few phantom shocks during healing. But I noticed right away that I had some brutal vertigo and motion sickness even when sitting totally still. They chalked it up to only the anesthesia post-op which I accepted but constant injections of phenergen and Zofran had nearly no effect. Thankfully I tried medical cannabis again after knowing how it helps chemo nausea and it was almost instant relief again. After dealing with it for my main healing period of 6 weeks I returned to the Neurosurgeon and explained that I had been unable to control my coordination (felt drunk unmedicated) and motion sick 24/7 and still had mild vertigo. He explained that they had to shift the Cerebellum to get to the V cranial nerve and that sometimes in very few patients it translates to vertigo/motion-sickness/nausea/uncontrolled balance (of which I lovingly named "Jack Sparrow Syndrome" since that's how I walked everywhere. He wrote me more Zofran meds and told me after 3 months that it should go away completely.

It is just a few days from the 4 month mark I am still feeling the motion-sickness/nausea nearly 24/7. Medical Cannabis costs an arm and a leg and I am unemployed for years because of the TN pain with only a small amount of money we get from my wife's SSI. I only use tinctures or extracts, no smoking, occasionally inhale concentrate if I cannot swallow anything. I have been trying nearly every herbal and natural remedy under the sun (some even more expensive than the cannabis products) to NO avail. Only drinking heavily carbonated drinks helps only WHILE I'm drinking/burping. After I'm done, 5 minutes or less, it's right back. Ginger has no effect. I love ginger but it doesn't help. Which leads me to think it is still neurological. If no treatment for nausea helps then it must be my brain telling me I'm nauseous. I still don't feel like I got 100% of my coordination back but enough to function and ride a bike without killing myself. I honestly don' want to have to stay medicated on anything constantly for this but I just want to understand what is happening and how to fix it. I congratulate anyone that read the whole post. I appreciate it wholeheartedly.

Michael

Hi Michael.
I see you posted this a while back, have things improved at all?

Ten years ago I went through right-side trigeminal. After my microvascular decompression surgery there was the fabulous severe vertigo-nausea experience. I can relate to how miserable it can be.

In my case it did happen to eventually go away (about a month). The team at Mayo in Rochester MN attributed mine to all the rooting around they had done in my brain at the time.

I'm sorry I can't offer you more than that. When I saw how long you've waited for a response I at least wanted you to know that somebody out there can relate a little to what you're experiencing.

Hope things have improved for you.

I HAVE ALSO BEEN A PATIENT OF MAYO CLINIC IN ROCHESTER. I WAS THERE
FOR 3 WEEKS. I HAD TWO BRAIN SURGERIES ALL BECAUSE OF TRIGEMINAL
NEURALGIA. NOW I SUFFER FROM ANESTHESIA DELOR0SA FOR THE LAST 18
YEARS. i WILL PUT YOU ON MY PRAY LIST.

Sorry to hear that you are having trouble post MVD. I have vertigo, general dizziness, nausea too but it is getting better. My surgical team recommended vestibular therapy, where they rebalance the crystals in your ear, solving the vertigo. I had a mild case before surgery but chalked it up to a side effect of the meds. After surgery, it was full blown vertigo lasting for days, following by severe dizziness. I will have 6-7 more sessions, but I was able to ditch the cane a day after the first one. Check out vestibular.org for trained therapists in your area. Hope you feel better.