Blessings and greetings to all.
Does anyone have Lyme and TN? My Lyme support group has many people who have Lyme then developed TN as a result they say. They say to treat Lyme aggressively and it will help TN.
I'm torn between a 2nd MVD or continued treating of Lyme. No meds help the TN issues.
Diagnosed same year of 1st MVD with Lyme disease which is so controversial (as is TN.) Very few trained Lyme doctors; had one bad one, now seeing good one who treats according to Dr. Burrascano’ s guidelines. Multiple antibiotics and herbs finally helping brainfog and head pressure, but nothing else yet.
First MVD relieved 90% or burning pain!
Did not help: brainfog, eyes blur, flutter, strain to converge. Constant invasive sharp shrill pulsatile tinnitus which spreads out into head/face, full pressured left ear, terrible sensitivity to noise and my voice in left ear. (My NeuroENT said I had superior canal dehiscence. Now he says no.)
Now having recurrence of facial numbness and some burning pain too.
Ears turn bright red and burn...have read it's an autonomic issue. Have asked top neurologists and neurosurgeons who look at you like you're daft.
Several new MRI's show tortuous vessels around 5th, 7th, and 8th nerves. No big obvious compressions. My neurosurgeon will operate again with the understanding it won't help all my symptoms.
Wanted as much info as possible so I also saw a couple surgeons listed on the recommended doctor list; none would operate saying atypical is not helped by MVD.
Still unable to function most days. I pray almost constantly for guidance. I also pray for everyone in this group.
Hope this note is understandable. Being online makes headnoise just scream and my eyes feel like they're bleeding.
Any thoughts are welcome.