Month: April 2023

Danielle Gets a Brain MRI: Brain MRI with Cerebral Palsy

danielleshanti

On the night of April 11th, I had my dreaded brain MRI. The day before, I woke up with a stomach already tense. On the day of, I tried to keep busy and also stay calm. We are having exceptionally beautiful, truly spring-like weather, so I reclined in a lounge chair outside and did a meditation, a yoga nidra, and a tapping session consecutively. 

Yoga nidra is relatively new to me. It’s like a compassionate body scan, which I love, but it includes having an intention in mind and is a little more in-depth. You listen to a calming voice telling you to notice the tip of your tongue, your teeth and gums, the inside of your right cheek, the inside of your left cheek…. All through the body, each toe and finger. Then hemispheres of the body and brain. It’s interesting and takes a lot of focus and concentration. Which is exactly the point, to be grounded in the present moment and in your body. I really recommend trying it; there are lots online, and they vary in length. Here’s one I like.

As the afternoon slid closer and closer to evening, I kept imagining going into the MRI machine with the coil over my face. I didn’t know how close it would be to my face, or how close the coil would be to touching the inside walls of the machine, and I was very anxious. I didn’t feel stomach-twisty nervous, but very quiet and subdued. I didn’t know if all my nervous-system-calming prep work had helped at all. 

When I’d gotten my c-spine MRI last month, the tech told me that I should use “the mobile unit” for the brain, because it’s newer and has more “bells and whistles.” I did indeed get scheduled for the mobile unit. I hoped that the bells and whistles included headphones with which I could choose music to listen to.

Walking into a nearly empty hospital at 7:30pm is weird. But nicer than walking into a crowded hospital. We got to the room to check in, and a sign outside instructed us to go downstairs. Did that. Then the nurse (?) came and took us back upstairs, through the first darkened room, past the sign outside it, and down the length of the entire hallway. There my husband sat while I was escorted through some doors and then through doors to the outside, where, in a parking lot two “mobile” MRI units sat. They had some very solid ramps leading up to them, and I assume they are no longer mobile. They are big metal boxes that remind me of blood donation vans, but way bigger.

In a room the size of a small shower stall, I had to get undressed (except socks and underwear) and put on paper shorts and a gown. The chair took up 85% of the space, and when I lifted one leg onto the other knee to remove shoes and pants, there was no longer any room to complete the maneuver. Fun.

Too soon, I was led past the tech area and into the room with the machine. This one was close enough to the floor that I could sit on the bed part/get myself onto it without needing a stepstool to be brought over. I explained that I have cerebral palsy and have very strong reflexes in response to loud noises. Weight on my legs helps. They didn’t have additional weight in the form of blankets. The nurse put the bolster under my calves, and the tech guy strapped my legs down. A little too tightly. Once he loosened it a bit, I figured it wasn’t as comfortable as a weighted blanket–type sensation, but that it would help overall. Earplugs in. Then he put cushioned blocks on either side of my head to hold it in place. And without a word, he placed the coil next. 

The coil was over my face, the emergency squeeze ball was in my hand, and I was heading into the tube. As far as I could tell from my vantage point, the face coil was similar to the one below, but without the little screen attached over it. 

I was so relieved not to feel panic welling up within. The coil was a manageable distance from my face. With gentle pressure on both sides of my head, and a warm blanket over me, moving into the tube I felt almost…cozy? If it hadn’t been for the upcoming prolonged and unpredictable loud noises, I would have felt just fine in there. Because of the nearness of the single bar up the middle of the coil, I had to close one eye or the other to have an unobstructed view of the inside of the machine, so this time, I felt calmer keeping my eyes closed. (In my previous experiences, when I closed my eyes, my mind raced more and I felt closer to panic.)

Just like getting through last month’s cervical spine MRI, I won’t say this experience was easy. But it was easier than last time and the time before that. I was surprised to be able to think, “I’m doing this and I am okay.” The noise was still too much, and felt neverending, and I did still have images of myself breaking free of the enforced stillness and getting out, but though my mind had those thoughts and impulses, I was able to resist them and breathe through it.

The cushioned blocks holding my head still really helped me feel more secure and calm, rather than restrained as one might imagine. I was able to relax into them rather than holding myself rigid as I would without them. If I ever have to have another MRI, no matter the body part, I think I will ask for them, if they can be used without the face coil. Maybe I should try sleeping with something like that. I’m not able to sleep on my back because I feel like I have to hold my head up, but switching sides throughout the night means I wake up each time.

I came out for the contrast injection, not allowed to move at all, and then went back in for three more pictures, about ten minutes. I only heard one break in the barrage of sound, so I thought I had one more picture to go when instead, the tech appeared in my peripheral vision and I was set free. I had survived. 

When I made it back into the building, I told my husband with surprise, a lot of relief, and a little pride, “That was my best one.” 

The next day, I felt happy. I had a bit more energy than usual, and I just felt better. Happy. All the pain was absolutely still there: throat, forearms, hip, back, neck and shoulders, but I had a bit of energy anyway. I was happy anyway. I was looking forward to taking a walk rather than positively forcing myself to go because I know I should. 

I thought, well if I could feel like this every day, then I could totally “accept and surrender” and live with the pain and still feel like I was living rather than existing. That’s what The Gupta Program’s goal is–if you can make it to that state, where your nervous system is feeling safe and good, then maybe it’ll stop sending all these unnecessary danger/pain signals. I don’t know what the change was, and it only lasted for that day. Was it the sheer relief of making it through that dreaded MRI? Did I manage to get my brain a boost of the feel-good chemicals? Maybe that boost is where my brain is supposed to be at, and I need to correct a chemical imbalance… It’s not the first time I’ve had that thought. I had a similar (but even more extreme) experience several years ago, where, for one day, I was a better version of myself. My brain felt clearer. I was happy. When I worked with a group of rowdy students, I was patient without having to make myself respond in a patient way. I realized with atonishment that the kid who usually tried my patience was not having a particularly good day; it was I who was having a good day. I understood that people who were able to be upbeat and energetic in the face of a classroom full of kids must feel like this most days. They operate at a higher level of aliveness that I have only glimpsed. 

So–what’s going on in my brain? Have I got lesions or whatever else the neurologist was looking for? Here are the results:

FINDINGS: 

Brain: No evidence of hemorrhage, mass, shift, or extra axial fluid collection. No restricted diffusion. The ventricles are normal in size and morphology. A focus of abnormal T2/FLAIR signal hyperintensity in the right periventricular white matter, with differential remote sequelae of periventricular leukomalacia, migraines, posttraumatic, or less likely inflammatory causes. Flow voids at the skull base are preserved. There is no abnormal enhancement. 

Bones and soft tissues: There is a reniform-shaped T2 hyperintense lesion located immediately posterior to the left parotid gland, measuring up to 8 mm and demonstrating restricted diffusion and enhancement, likely a benign lymph node.

The note from the doctor says the “small white matter lesion in right brain” is unlikely to cause my symptoms. It’s a nonspecific finding that could be “related to headache, prior injury, et al.” Dr. X does not mention anything about the thing that is “likely a benign lymph node.” (Looked it up and the parotid gland is a salivary gland just in front of the ear.) Dr. X seems unconcerned and I was asked to schedule a follow up, which is not available until September.

So, again, I am left with, well, you’ve got hyperreflexia that suggests things that we have now ruled out, as far as spinal compression or brain lesions. Okay then. No one’s saying it could be a CP thing that I just wasn’t aware of until now. (These are upper body reflexes, and officially my CP affects my lower body.) 

I’ve been through so many information-gathering appointments, without any revelations to show for it.

Such is life.

Danielle Visits Physical Medicine & Rehabilitation (PMR)

danielleshanti

On April 4th, I had my first ever PMR appointment. Quick recap: Once upon a time, I made an appointment for myself at the adult clinic at UCLA Center for Cerebral Palsy, just to see what it was like, and if they had a more knowledgeable perspective than my primary care doctor. The CP clinic referred me to UC Davis sports medicine. Sports medicine doc tried a couple injections and when those did nothing referred me to pain management. Pain management tried a couple medications, and when those did nothing, referred me to PMR. I’m not angry or surprised by any of this (mostly); I’m just pursuing various care options as an adult with CP who is experiencing (expected but not able to be fully understood until it happens to you) decline in function and increase in pain.

The excellent thing about the PMR appointment was that the experienced doctor, Dr. S, came in with the intern/fellow/resident/whoever the young doc, Dr. W, was and the medical student, rather than the young’uns doing everything and then reporting to Dr. S outside the room before they all came back to me. It’s much better having the experienced one there from the get-go. It feels more productive having them all there teaching/learning/discussing in the room. It also just feels better to the patient when there’s a team of people who are trying to help you and taking you seriously and playing detective. They asked about my celiac disease and my throat pain and my arm pain in addition to CP stuff because they were trying to rule out other causes of my fatigue and pain. They could see the EMGs, neurologist notes, etc. 

When they transitioned to the CP side of things, they watched me walk up and down the hallway with and without poles. Most doctors don’t do this, and I think it’s weird. If a sitting-down patient tells you they have CP and various chronic pains, don’t you think you should ask that patient to walk more than zero to four steps? I felt it was a thorough appointment, that young Dr. W was on top of things as far as actually looking into my history, and that the medical student probably learned a lot. Dr. S said that the labral tear/impingement probably isn’t causing my pain, and that my hip issues on the right are most likely coming from the iliopsoas lengthening procedure done in 1989: “​​The pain could be due to the prior history of iliopsoas release as they have to cut part of the tendon to elongate it. So the pain could be coming from the tendon or myotendinous junction. The restricted range of motion in the hips with tonic tension on that structure when standing could be increasing the pain. Unfortunately, there is not a whole lot that can be done if that is the source of hip pain.”

As far as the pain and arthritis in my lumbar spine, my pelvis is tilted in a way that accentuates the lumbar curve, adding more pressure there, and my gait has always exacerbated the area. The doctors were rather taken aback by the pain management doctor’s offered options of a baclofen pump and nerve ablation (which I had already decided against). Dr. S’s opinion is that if the tizanidine (muscle relaxant) did nothing, then medicating for spasticity (baclofen) isn’t going to help me. For doctors who understand the range of CP, my spasticity is not extreme, and relaxants would only increase my fatigue. I could pursue an injection in my back. (Young Dr. W cut in with this, and Dr. S didn’t disagree.) The overall suggestion Dr. S had for my back was to “modify activity,” meaning “do things in a way that hurts less.” I probably could have come away with a physical therapy referral, but talked about how much PT I’ve already had and what I’d been assigned in my home programs. Water therapy is a popular idea, since being on land hurts, but it’s not readily available around here. 

I asked Dr. S how to work on my tight hip flexors in a way that doesn’t aggravate the rest of what’s going on in my hip. He said, “If it hurts, don’t do it.” I felt relief and validation then. The tough truth is, I’m in the least amount of pain when I am least active. When I move my body, the hip and the back flare up because the way I move hurts those places. Of course I know that exercise is the best way to keep my body and my heart and my brain healthy, so I’m not going to become completely sedentary. It’s just good to hear that, yes, these exercises that have been given to over and over may be causing damage and that, yes, it really is sometimes damn near impossible to exercise one area without hurting another. 

When the pop in my hip led to a labral tear/hip impingement diagnosis, and more pain, I held to this idea that this new condition, and new pain, could be helped. But these doctors have said that my pain isn’t coming from the tear and impingement. When I leaned over a bit sideways to pick up something off the floor and hurt my back more than I ever had, I held to this idea that this new condition, and new pain, could be helped. But these doctors have said that I have facet arthropathy and age-related degeneration, and that the pain isn’t from an acute injury. I don’t know why my body hasn’t returned to its prior state, the way it was before these identifiable incidents. It’s like the new pains alerted my brain to these areas in a new way, and I haven’t been able to calm down my hypersensitive nervous system to the previous levels of pain. If true, this is something I could use The Gupta Program for. I have fallen off the Gupta wagon, however–except for meditation–and it’s exhausting to think about getting back to it when seven months of trying did not help my pain. (It’s “a six month program,” and some people use it for several years before they start feeling better. I imagine the ones that try it for years and don’t feel better aren’t writing about it in the online group forum.)   

At least I can accept now that this hip and back pain is here to stay and that it’s up to me to manage it the best I can. Acceptance and surrender, right? Just like Gupta says. Except that complete acceptance remains elusive. I still feel that it would be nice if OTC medication, heat, ice, etc. actually helped. I just want a little help. Sometimes I feel that if I could have a minute or two of true relief, it would help me be able to handle it the rest of the time.     

When I returned home from my PMR appointment, I signed in to a free UC Davis Health webinar on “pain and wellness.” Because why not?

As I watched this webinar and listened to an expert promote the benefits of (get ready to be shocked!) meditation, healthy diet, and regular exercise…I just felt so exhausted. He is talking to people who, most likely, were once able-bodied. The amount of activity that’s advised–cardio, strength training– I’m just so tired. I already understand the benefits of exercise and vegetables. Everyone does, but that doesn’t mean we follow through. Studies show meditation is an effective method for pain relief. I know this. It’s just not simple and straightforward. It’s not as if I meditate and feel better, end of story.

Healthy diet, exercise, meditation. I DID DO these things, to the extent of my ability, for years. I walked, I did adapted yoga and pilates. I handcycled and did seated arm-workouts. I tried. I meditate. And my body has continued, step by step, part by part, to decline.

As I watched the webinar, I felt like the doctors were not talking to me, but only to the once-able-bodied audience, who have the potential to return to that state. Most of me feels that I am stuck here and that it’s just going to get worse. And that’s not a great headspace to be in. As Gupta says, “The mind believes what you think about your body and carries it out as instructions.” This is why we are supposed to interrupt negative thoughts and replace them with a hug for our worried part, basically. 

I don’t know how to apply what I know and what I’ve learned to my own life, other than all the ways I’ve already tried. And I know that I’m not so special that nothing will work; I’m not so far outside of regular human experience. I can still apply The Gupta Program to myself, and mindfulness meditation should still be able to me too. I am just tired of trying. And I’m tired of trying to accept and surrender. I am tired of “discomfort.” (One of the ways to help chronic pain is to “reframe” it. And while I mock this, I also understand that it can work.)

One of the ways I am struggling is that it isn’t just cerebral palsy that I’m dealing with. I do think I can succeed at acceptance and surrender there, and live a good life with the ever-present “discomfort.” It’s the other parts, the throat pain and the forearms, the neck and shoulders, the constantness of it all, that is hard for me to understand and to accept. Feeling like you have strep throat every second for years isn’t healthy and normal. I want there to be a reason for it, even if it is my hypersensitive nervous system that I haven’t yet successfully calmed. But no one can tell me for sure, so I am just here, flailing in the dark, tired and struggling. 

I didn’t plan to end on such a low note. But it’s not my job to spin my life into some inspirational lesson learned, now is it? I feel my purpose here is to document my experiences, to not feel alone and to let others know they’re not alone either. So, here I am with my discomfort, reaching out to you and yours.