"You're a Complex Case"
It’s now been over 3 months since I had a left renal vein transposition! It has been a crazy couple of months. At the 6 week mark, I was feeling very discouraged, mainly because of being so dizzy. I had to schedule a lot of tests and doctor appointments (the amount of times I heard "you're a complex case" is so fun) and my dream of being past all the intense medical stuff was put on hold.
It’s not all bad, though! I don’t have any sharp pain anymore and am sleeping much better. I’ve built up my endurance and am back to driving and work. Being more active has caused regression in physical therapy, but nothing I need to worry about. I feel much more like myself and have been more social and energetic. I’m relearning to use my core muscles, and my body is less tense than it was before surgery. I’ve been really proud of myself for trying to approach everything with a positive attitude and a flexible mindset. My mantra has been, “Pain is temporary. If the brain can change, pain can change” (Rachel Zoffness is such an amazing source for dealing with chronic pain).
As for the updates on where I’m at on my health journey…
Blood Work
My lab work shed some light on why I felt so terrible! My red blood count, hemoglobin, hematocrit, ferritin, Vitamin D, Vitamin E, and folate were all low. My ceruloplasmin was as well (which I had never heard of before), but my copper was normal so the doctors didn’t seem concerned. I have to take iron, folate, Vitamin E, and Vitamin D every day, and I’ve been taking magnesium to help with sleeping.
Nerve Conduction Velocity & Electromyography
The tests showed no large fiber neuropathy or carpal tunnel, yay!
Vestibular Test
The Emory Brain Health Center and a vestibular physical therapist both did tests with me and found evident signs of vestibular ocular reflex dysfunction (basically my eyes aren’t responding quick enough) and convergence insufficiency (so when an object moves closer to my face, my right eye stays straight, while my left eye converges like it’s supposed to). They believe my issues are due to vestibular hypofunction and a central nervous system issue. My neck muscles are also very tight, which they said could be contributing to my dizziness.
CT Angiogram
Here’s where I got some answers! The scan showed two small pockets of fluid in my brain, as well as left sigmoid plate dehiscence (the bone in my left ear that goes over a vein is thinning, which is why I can hear my pulse beating in my left ear). The scan also showed jugular stenosis, meaning that one of the veins that drains blood from the brain is a bit pinched where it passes beside a neck bone.
MRI Venogram & Normal MRI
No abnormalities or concerns with my veins. No evidence of a tumor, stroke, inflammation, Chiari malformation, or an inner ear nerve problem.
My neurologist said the findings in my scans could be incidental, but with my history, she decided to refer me to a neurovascular surgeon, Dr. Martinez Gutierrez with Wellstar. He turned out to be amazing! He took his time explaining everything to me and was so thorough. He explained that the small pockets of fluid could be indications of my brain and spine not properly absorbing fluid, and the fluid might be wearing away at the bone in my ear. The jugular stenosis could also be increasing pressure in my brain and/or could be a sign of a vascular issue that the venogram didn’t pick up on. Dr. Martinez Gutierrez asked me a lot of questions about my dizziness, and he noted that since my dizziness gets worse when I move my head, I could be dealing with dynamic compressions. Overall, my symptoms, medical history, and scans suggest a cerebral venous outflow disorder. He said that he sees a lot of patients with Ehlers-Danlos and that the two conditions seem to be related. I will unfortunately have to get more procedures done (transradial diagnostic cerebral angiogram, transfemoral dynamic venogram, and lumbar puncture) to check for dynamic compressions and the amount of pressure in my brain and spine. Now that I’m back to work, I’ll have to wait until my fall break (RIP my vacation plans), but the doctor at least said this isn’t an emergency issue. For now, I’m just doing my best to manage symptoms through physical therapy, massage therapy, mental health therapy, vitamins, and avoiding driving on the interstate. And of course listening to my body and taking time to enjoy the wonderful things and people I have in my life! I can at least say I am better today than I was before surgery.
