Hello to all! Finally, we have most of the missing pieces and it all makes sense. I thought I’d share my entire story in hopes it helps someone. Forgive me, it’s a lot of info.
In 2021 I had massive weight loss, nausea, severe headaches, and vomiting. Was finally diagnosed with gastroparesis via gastric emptying study and a jejunal feeding tube was placed. I went from 150 pounds to 102 lbs.
Fast forward to May, 2022, condition unchanged and persistent headaches, I was diagnosed at Ohio State Medical Center via fiesta MRI with trigeminal neuralgia and compressions involving the accesory, vagus, and glossopharyngeal nerves (CN 5, 9, 10, 11). Due my severe level of pain, Dr. McGregor admitted me to the hospital and completed microvascular decompression surgery to address all cranial compressions. Dr. McGregor is now retired. But I saw my new Ohio State neurosurgeon a month ago and he wrote a nice high level recap of what happened from here. Unfortuately I had undiagnosed Factor 2 clotting disorder that we didn’t know about prior to the microvascular decompression surgery. My new neurosurgeon’s recap (the word “vision” is underlined because it’s a medical typo, should say “thrombosis”):
I lost 50 pounds, couldn’t eat, and had a feeding tube for 2.5 years. Trying to figure out what was making me so sick, I jumped down many rabbit holes:
- NYU Langone – said MVD surgical bone flap was too thick/inset, causing compression of the transverse sinus. NYUL recommended an invasive procedure to redo the bone flap and place a stent in the transverse sinus. OSU and Dr. Kyle Fargan didn’t agree.
- ENTs, Dr. Brad DeSilva/OSU and Dr. Chhetri/California, both diagnosed me with hyoid bone syndrome, Right greater cornu touching the right cervical spine, but BOTH didn’t feel hyoid bone syndrome was causing my severe symptoms. Both ENTs also ruled out Eagle’s Syndrome.
- Dr Hui – said he suspected premorbid/baseline mild venous congestion, worsened by the clots. He recommended a tricky procedure involving stenting the right transverse sinus and IJV.
- Dr. Patsalides – recommended clearing clot material from TV sinus/sigmoid sinus/jugular bulb, but didn’t recommend IJV stenting.
- Dr. Prevedello at Ohio State – found a small pituitary tumor but classified it as “non-hormone producing” and not the cause of my symptoms.
I sought information and many opinions but didn’t move forward with any surgeries. And 2ish years, the clots mostly dissolved (per MRV imaging).
It’s now been 18 months since I had the vp shunt placed and started weaning Trazodone. I’ve gained 60 pounds, am eating again, had the feeding tube removed, and am living life upright all day everyday. I still have a lot of recovery to make in terms in strength, but am blessed to still be here. I’m open to any questions.
In summary, I was fighting a war on two fronts. #1, a neurological sequence of events precipitated by MVD surgery and post-op thrombus. #2, Trazodone toxicity. Both situations played into my symptoms. But I do agree with Dr. Hui’s assessment that I probably had premorbid mildly high pressure issues. For now I intend to continue getting fully weaned from Trazodone and just take some time to heal. After that I’ll then determine next steps. I hope in time I won’t need a vp shunt, but who knows.
