“Ok, can you count down from 100 by 7′s?”
“100, 93, 86, 79, 72, 65, 58, 51, 44…” She stopped me somewhere in the 30′s and I had to smile to myself. It was pretty easy to do considering that I had just spent 20 minutes going over multiplication tables in my head to keep from thinking about moving my toes. Because, frankly, the only thing harder than trying to not think about anything is trying not to move once you’ve been told you can’t.
She had no idea about the multiplication game I’d played with myself a few minutes before, but was pleased with my rapid-fire answers, so she continued down her list of benign questions, pausing to ask me the kind of personal information you can only ask if:
a.) someone is your best friend and has been for years or
b.) you’re sitting across a desk from the person and you’re the clinician and they’re the patient.
She was pleasant and likable, but we weren’t best friends and I had only met her a half hour before. She had a round, fresh faced look with light rust colored hair and hazel eyes and pale pink lips that looked to be that color naturally, even if they weren’t. I couldn’t help but think that the pale yellow cardigan was a perfect choice. If I had her coloring, I’d wear that color everyday.
Shortly after my mind wandered to her clothing choices and we established that I was capable of critical thinking, our interview ended. She sent me to the nurse to have my blood pressure and pulse checked and then, shortly after lunch time, I was done for the day.
Our trip was set up around the two days of specialized testing, but David and I treated it like a vacation just the same. After all, we are the parents of small children and getting away for a long weekend without them is not part of our normal routine. We stayed in a beautiful apartment just outside D.C. [if you've never checked out AirBnB, its worth a look] Sunday we had gotten in much later than planned [US Airways will not be getting my endorsement], so we took the afternoon easy and ventured downtown late evening for thai food and popsicles. We got up slow Sunday morning, found a gathering of believers we could visit, and spent the better part of the rest of the day on the mall, and specifically, at the Art Museum. Monday we had planned to go back to the mall after my testing, but being injected with a radioisotope and lying still for 20 minutes while pictures of taken of your brain function, as it turns out, is more tiring than I’d expected. Or maybe it was the two hour long interview with the lady in the yellow cardigan. Either way, after lunch in the apartment, we both fell asleep for what ended of being hours.
I found out Tuesday that despite my feeling that nothing could be harder than lying still for 20 minutes, there is something more challenging: sitting still quietly for a half hour in a dark room and then being asked to be completely still for another 20 minutes while the scan is completed and you have to pee (because before and after having the isotope injected you are supposed to drink 32 oz of water).
The nurse had come in and explained to me that for the “resting” scan, she needed me to sit still and quiet in the prep room in the dark without reading or looking at my phone or falling asleep. She got the IV in, injected the isotope, and explained that when she came back to get me for the scan that there wouldn’t be any talking until after the scan was complete, to ensure my brain was at rest.
I knew then that I had to pee, but I figured I could manage. And the only restroom was out of the office in the shared entry of the large business complex. Okay, you can do this, I told myself. For crying out loud, you’re a 32 year old woman, you can wait to use the restroom. While my body was soaking up the red colored isotope, I did ok. I tried not to think about anything, so my brain wandered. I mostly thought about how little I sit quietly. The nurse came in to get me and I wanted badly to tell her that I had to pee, but I didn’t want to mess up the procedure or frankly, have to face another 30 minutes of sitting in the dark room, trying to keep my mind restful. So she had my lie down on the table and she covered me with a thin blanket and wrapped my arms and chest tight and, as we had discussed and I had requested, she wrapped my legs and feet too (it was super hard the day before to not move my toes- I didn’t want to go through that again!) She slid me into the scanner and the triangular super specialized cameras started moving around my head (which was also strapped down), close enough to almost touch my shoulders. I closed my eyes and tried not to think about anything- especially my bladder! But she had wrapped my hands folded right above my belly button and now they felt like they were taunting it. There was no clock available for me to see so I had no way of knowing if I was 19 minutes into the scan or 5. So I was deep breathing and considering whether it made more sense to pee my pants or potentially have to pay another grand if the scan wasn’t clear. And then I just couldn’t do it so that’s what I said, “I can’t do this”. The nurse came right over. “What’s wrong?” “I know its ridiculous, but I have to pee,” I stammered. She looked at her wristwatch, “You only have 2 minutes left. Can you do that?” I told her I could because it was only two minutes, but as it turned out, the were maybe the longest two minutes of my life. At one point I started to wonder if she’d only told me it was two minutes to calm my nerves. If that was her strategy, it didn’t work. Eventually, though, it was over and she unwrapped my legs and hips and shoulders and forehead and I bolted for the bathroom. David and I waited in the lobby to find out if the pictures were clear despite my talking and wiggling and thank God, they were.
For the time in between that final brain scan and when we would meet with the neuropsychologist to go over them, David and I meandered through local thrift stores (which if I hadn’t been sure of his love for me, would’ve proven it), ate fish and chips at a Irish pub, did face time with our boys and got Starbucks. Our time ran out and we went back to the doctor office where we waited for nearly another hour while Dr. Annabali reviewed my blood tests, interview from the day before and all the lengthy history I had filled out before our trip.
He called me back to his office first, asking for David to wait a little in the lobby. He wanted to make sure there wasn’t anything I wanted to talk to him about alone (aka he wanted to make sure David wasn’t abusing me). I wished there was some way to him to really know, despite my history, that David was as good and kind a husband as I had said multiple times in the forms I completed. Still, as a psychologist, I can’t blame him for wanting to be sure. So he called David back to join us and pulled out the multi-colored , computer generated images of my brain function. He made sure we understood that the images weren’t actually images of what my brain looks like, but rather images showing how blood flows through my brain. These images indicate either: appropriate function, under active function or over active function.
He started with the information that he was sure would surprise no one in the room. “You have PTSD,” he said with the kind of shrug that said he knew I already suspected as much. And he showed us images of a healthy brain, in which the fight or flight area was not activated during either a “concentration” or “rest” scan. And then he compared those images to mine. The healthy brain was blue, showing no activation and my brain was bright white, having skipped the “moderately active” red color altogether. He showed us images from every viewpoint and images that looked into the core of my brain… all white in the basal ganglia and thalamus. Classic PTSD. He went over the treatments he was recommending… everything from therapies, to natural supplements to medications that help to give relief and healing to the overactive area of the brain that causes extreme hyper-vigilnce and anxiety brought on by trauma.
And then he pointed out some holes in the function of my left temporal lobe and said something I hadn’t seen coming. “See this extreme under functioning area here?” I nodded. “Well, that is damage that appears to be ADD-like.” My expression must’ve told him that I was caught off guard. “Let’s be clear, I’m not diagnosing you with adult ADD, but I am saying that this underactivity says to me that you are experiencing ADD-like symptoms.” He went to say that adult ADD is very different in its presentation than ADD/ADHD in children. He also said it was possible I had a slight case of it as a child, but because I was interested in school (ADD often only shows inattentiveness to areas that the person is not interested in) and because I was a smart kid, it went undiagnosed. Or it could be secondary to the PTSD, meaning that because the core of my brain is in overdrive, this other area is worn out. Again he went over his recommendations.
I piped up, “I have to say the ADD surprised me,” I said. David spoke up, “Honey, with all the love you know I have for you, I have to be honest and say I’m not.” I just looked at him. Then a smile broke over his face, “Babe, didn’t you just tell me that instead of thinking of nothing during the scan, you figured multiplication tables up to the 17′s? And you spelled out everyone’s names in our family to see who had the most letters?” I couldn’t help but laugh. “You can’t stand to be bored.” He went on to site several other tell-tall signs that had just never occurred to me… the way I have to have the radio and the TV on when I am working on a task that rote and routine…how I never can just watch a TV show with him without also reading a book or looking at pictures on my phone…how often I have no memory of where I left my phone or keys... and before long, I couldn’t help but chime in. I hadn’t expected it, but maybe I should have.
We have been home a few days now and the real work of processing it has started. I am ever so thankful that, finally, after about 6 years of reeling and having a multitude of unexplained physical and emotional symptoms, I have an answer and a plan to help my brain heal. I’m so extremely thankful that it is possible for specialist to actually look at the brain, rather than just guessing based on symptoms (and frankly, why isn’t that done more often!?!?)
A few years ago I had to see this terrible psychologist who tried to say I had been clinically depressed my whole life and I knew he was wrong but it made me second guess myself. Surely I hadn’t been depressed my whole life without knowing it?!?! And if I was depressed, then why didn’t antidepressants work?!? Can I tell you all how thrilled I am that that particular psychologist was 100% wrong? And can I confess that I kind of want to send him these very cool images of my brain with a note that says “you were completely wrong about me”?
I remember reading the feedback from others who had SPECT scans done because of unexplained depression or anxiety or irritability on the clinic’s website and in nearly every case they would say something along the lines of what a relief it was to have affirmed that there was actually something physically causing their symptoms. I kind of skipped over that. I knew what was causing my symptoms I just wanted to know how best to treat that part of the brain rather than just taking an antidepressant to boost my mood. Still, a few days past the expert explanation, I know why all the commenters said that… it really is a relief to have someone look at your brain and say, I see it. Its real. You didn’t make it up or exaggerate what happened.
At one point, Dr. Annibali pointed to a spot on one of the images and said at some point in my early life I’d had a mild injury to my brain. Were you in a car accident? No. Did you play contact sport? No. Fall out of a tree or a window? No. So when it was done, I called Mom. And guess what? When I was two I fell right into the corner of my parents’ concrete patio. Mystery solved.
So that was amazing and I have to say even with the amazing news that my brain can heal and I can get “back to my old self” (he said the words I’ve been dying to hear), it just as good and helpful and freeing to hear that he could see it. Not just a bad fall as a toddler, but all the stuff that no one else has been able to see. I’m grateful for my family and others who have listened and been there for me over the past few years that were so incredibly difficult. I’m grateful for their kindness and attempts to understand. I’m grateful for the counsel I received and prayers and for those who believed that I was still the same person I had always been. But even so, no one could see it and say it was real. No one could look into the past or concretely affirm that what I was saying I had experienced was what I had, in fact, experienced. No one could say they really fully understand how I had gotten from there to here; why it had all changed me in ways I didn’t even fully grasp. The word “depression” got thrown around so often, I even started to use it, though it always felt like an ill-suited description. Dr. Annibali and the incredible advances in neuro psychology gave me a gift that no one else had been able to… he saw it. He saw what had happened and how it had physically altered my brain and consequently my personality, emotions, and hormones. He drew an logical map showing how I got from there to here and even though I had known it, his saying it affirmed, frankly, that I am not crazy…or depressed.
If you know anyone or are someone who has struggled to find the “right” medication for anxiety or depression, or if you’ve struggled with anger, or if your child has a hard to treat condition like schizophrenia or autism, I cannot recommend The Amen Clinics enough. I know “Amen clinic” sounds like the name of some odd, wacko spiritual boot camp, but the doctor who was first to use SPECT scans for diagnosing psychologically disorders is named Daniel Amen. He does happen to also be a committed Christian and there are 5 or 6 clinics around the US. The specialize in head trauma, autism and depression/anxiety. While an MRI/EEG will show brain structure or electrical connections in the brain, the SPECT scan shows the blood flow in the brain and thus, areas where the brain is over/under active. Had I gotten an MRI I wouldn’t have been able to see what I did. This is not a new procedure, although it is not “common practice”. The Amen Clinics have done over 40,000 scans so they are well versed in reading the images they take.
Its the difference of trying to found the right medicines based on reported symptoms vs. choosing a medication based on what part of the brain needs calmed or activated, since practitioners know which medications work on which part of the brain. I have gone a few times over the past 6 years to doctors with the following complaints: I don’t feel rested even when I sleep, my heart races, I have a hard time completing tasks, I feel overwhelmed a lot, I can be irritable. And every time those symptoms have led to my being prescribed an antidepressant, which only helped marginally. Without my symptoms leading, the SPECT scans showed the two areas of my brain that weren’t function appropriately and knowing what those parts of the brain are responsible for, the doctor could identify not only my symptoms but what was causing them and what would help them function better. Huge difference.
So that’s my shameless plug. Far too many of us are vaguely or wrongly diagnosed with anxiety and/or depression.
Happy Sunday friends!
[And now that I understand my ADD-like symptoms and can do something about it, maybe I'll finish more blogs!]