I am scheduled for surgery next week with Dr. Nakaji for non-dominant left side styloidectomy, and transverse process shave.
Unlike many of you, I have not spoke to Dr. Nakaji. So no consults. I was just scheduled for surgery by his office staff and will have to consult a few days before the surgery. (does anyone know why he has consults with some and not with others?)
My story is very complex. I’ve had symptoms for around 1.5 years. At least for one year, I have been bedbound and disabled.
SYMPTOMS OVER PAST YEAR:
My symptoms have been very intense. What I mean by that is the pressure in my head was so bad, that I was only able to be upright for about 10-15 min, then had to lay back down. Unable to drive, go anywhere my entire world came to an end. The brain fog was 11/10. I felt drunk daily. Terrible pulsatile tinnitus in my chest, neck, head, eyes. The symptoms did ebb and flow. There were times that when people would speak to me I couldn’t comprehend what they were saying. It was hard for me to find words also. This has been my year! It was a very stressful and depressing year. Like many of you, I had seen several specialist who dismissed my symptoms.
EXTREMELY HIGH PRESSURES: Finally, after a catheter venogram, we found that my nondominant left side is almost 100% compressed. While my right side is 50 to 60% compressed. This is also based on a CT scan. The radiologist that gave me the catheter venogram told me my pressures were the highest he has ever seen on a patient. Laying down my pressure is for 25 and sitting up. They were in the 50s.
My transverse and sigmoid sinus we narrowed on both sides.
I was extremely thrilled that Dr. Nakaji took me as a patient because that tells me he thinks he can help me. I scheduled surgery willingly.
TURN OF EVENTS:
Over Christmas time, I forced myself to be out of bed more often. This was incredibly difficult to say the least.
But I have had a small miracle happen that I cannot pinpoint. First, the brain fog lifted. It was not overnight; it was gradual. Then, I was able to have conversations without losing my words. I was able to stand longer and longer. Pretty soon, I began getting in the car and running errands. Still not driving yet. I went to a few Christmas open houses.
And here’s the best part! I am happy to say that I am better! I would say about 75% better or maybe more! My pulsatile tinnitus is like a 1/10. I feel it barely. I was able to travel in our RV over New Year’s Eve. Yes, I walked the strip. I went to dueling pianos. I begin cooking dinner again and I could eat out at restaurants. I am now out of bed for the majority of the day and I’m leading a pretty normal life. I do get head pressure intermittently. But Yes, my life went from 100% bedbound to pretty normal after a year. I am laughing again, smiling, making plans. Still unable to rejoin groups etc. Ears are still plugged.
I’m not sure what caused my improvement therefore I don’t know what to keep doing or avoiding! This has been an absolute miracle!
My conundrum is the surgery and I don’t want to go backwards if I get it. There is still residual pain and pressure in the back of my head positionally. I cannot put my head in certain positions without feeling some pressure
or what I call “ scalp pain”. My worst nightmare would be that surgery would take me back to where I was for the last year. I spent the last year in bed.
NOT 100% — NEW COLLATERALS??
To me, this has been the greatest miracle of my life. I am not completely healed though. Has anyone heard of this happening in the past? Spontaneously healing?
I will keep you informed after my consult with Nakaji. I’m curious to know what he will say.
