As I have mentioned in other posts, healing is not a linear journey, but oh man, do I wish that there was a clearer path and more answers than what I have now. It has been six months since my third and last TMS treatment, and this is my healing journey update.
It will not be a surprise to say that these last three months since my last TMS-related update have been a whirlwind. I have been overwhelmed with doctor visits, extreme head pain, fatigue, speech difficulty, light sensitivity, difficulty with my eyesight and noise sensitivity. My moods have matched the ups and downs of healing - I have been saddened by the unknowns, I have been let down by some doctor's disbelief, and I have been validated by a few scans, doctor reviews, and support. Whew, it has been A LOT!
So the question lies, where do I begin the update after so many months?
First off, it's best to state that I only wish that I was in half as good of shape as I was back in July. I am so far from that now because I gave up running in order to focus on healing. For any long-distance runner or trained athlete, it is difficult to stop training for the sake of a setback. I know there are some people that are nodding their heads in agreement and there are other's that are scratching their heads in confusion. So, let me share a story to paint a picture that is not related to this current time in my life.
When I was a college freshman I got mono from my roommate. And I had it bad. At its worst, I remember climbing out of my bunk bed so fatigued by that tiny movement that I sat slumped in my butterfly chair for hours before mustering the strength to shuffle to the showers. And once in the shower, I stood under the water and let it fall over my body as I stared at my shower caddy hoping that I could Matilda my shampoo to my hair. It took an hour to walk a 5-minute distance to my first class in the morning. I was misdioganosed during my first attempt to figure out what illness overcame me - I received word from my hometown family practice that I had a rare case of strep. A bit later, I saw a specialist and within moments he told me that I had mono. While in the office, I received a shot of steroids and then took a pack of steroids to college for the remainder of my care. But, in between the doctor's visit and me driving back to college, I hopped on the treadmill and ran 6 miles like I was Pre.
This 6-mile run while recovering from mono with no training is what I am referring to. Often times when I am sick, I run. When I had COVID and was a day past a 102F fever, I ran. When I have a bad day, I run. So, it was no surprise to me that during my worst head pain, extreme inflammation, disorientation, and clumsiness as a result of adverse effects of TMS, I ran. I ran and I ran and I ran. I tried to turn to the one outlet that I was used to using to heal my mental, physical and emotional body. But, about 2.5 months of continuing to run as someone who was trained for 26.2 miles, I was told to stop. So, I did. I knew the advice was right - I kept running to search for a reduction of pain and there were very few times that I found it. The runner's high was not strong enough to outweigh the damage that TMS did to my brain. While my physical health suffered and my mental state clung to the joy of running, I stopped for the sake of my healing and trying to figure out what the heck happened as a result of bad TMS.
Because I have not been able to run, my obessession with lacing up my shoes and putting miles under my feet has waned. Don't get me wrong, I miss running and often have moments of saddness that I can't run. The difference: I can no longer easily run 50-60 miles per week let alone complete one mile, that I am now used to my daily routine of not running whereas earlier on, I could not fathom a day without running. It may sound weird for those who are not runners, but that's the best way that I can describe how I ran through the pain early on post-TMS. My fitness level was so high that I ran because I could and I was trained to run far.
So, how has my life changed since I stopped running?
On the upside, according to my craniosacral therapist, the inflammation in my head has slowly reduced. I can attest to this fact as I used to not only wake up from severe pain but also the insane amount of heat radiating from my silk pillow. Basically there was so much heat pouring from my head from the imflammation that my silk pillow would aborb it and then, I would feel my face burning in the middle of the night. Crazy, right? Now, those nights have lessened, which feels like a good sign.
On the downside, I have noticed more vision issues.
Vision Difficulties:
Blurry Vision: When I am looking at objects up close, the images often blur or sometimes I see double. Additionally, I close one eye to focus on what I am looking at because using both of my eyes does not feel comfortable.
Light Sensitivity: I am always adjusting brightness to zero and squint at anything with a white background. While outside, my head pain soars when I am out in the sun or I feel heat or cold on the left side of my head.
Disorientation: Now that it is Fall, all of the leaves are on the ground. As I walk the dogs, I have noticed that it is extremely disorienting to see the leaves pass by under my feet as I walk. It almost makes me dizzy. The sensation is similar to the trees passing by while driving in a car.
Fatigue and Irritability: I have noticed any sceentime, texting or other normal tasks that we do not think about cause extreme fatigue and irritability. To combat this I have tried to stay off social media, the computer, and even the blog for as long as possilbe.
Diffculty Seeing at Night: Forget night driving - I don't feel safe. When I step outside at night with our dog, the street lamps and now, Christmas lights are painful to look at and even pass while looking down. The glare is nothing that I have ever experienced. I have trouble focusing and orienting where I am in time and space.
Because of these issues, I went to my Optometrist that I saw in May (before TMS), and she noted a severe convergence insufficiency. My eyes are unable to focus on close-up objects and they do no move together to bring the object in-view. As a result, I have been testing out eye glasses with prisms. In a nut shell, I have difficulty bringing a close up focal point in view as my eyes can no longer adjust together, so a prism can help refract the light in a way that brings the focal point where my eyes are positioned. The Optometrist mentioned that there is no way that my eyes can age that quickly (May-November), so she hypothesized that an injury could have caused the change. Of course, she asked for a detailed history of the time between my visits. She referred me to a Neuro Optometrist that specializes in TBIs to further my healing and diagnosis.
Symptoms:
Headache - I still feel a kettlebell is being pressed on top of my head. I still experience the left hemisphere pain eerily similar to TMS session pain - a sharp, severe stabbing at the dorsolateral cortex.
Cognitive Difficulties - I still feel like Scrabble letters are scattered in my brain and I can't form the right word or even make coherent sentences. Thinking leads to intense pain. This is also true for numbers - forget counting backwords and doing simple math. Just thinking hurts my head.
Sensitivity to Light - See above.
Irritability to Sound - My husband got me an early Christmas gift and got Bose noise canceling headphones to help drown out background sounds. Right now, I am still trying to adjust to the pressure that I experience while wearing the headphones. I also feel an increase in the kettlebell pressure in my head, so we are weighing continuing to test them out or returning them for something else that my head maybe more receptible to.
Exhaustion - I recently read that if you do not take a break, your body will do it for you and it may not be the most oportune time. I can fully attest to this statement. The more months that have passed since TMS, I have pushed myself more to do normal tasks like cleaning the house, walking the dogs, gorcery shopping, cooking, plant care, etc. I have noticed that if I add too many of these tasks in a day, I am absolutely exhausted by the end of the day and this carries into the next two days. My recovery is terrible and my ability to do multiple tasks that I would normally do in the first few hours of may pre-TMS days, is no longer possible.
Body Aches - I have moments when I feel as though I have been slammed by a mactruck. My joints hurt. My muscles ache. I have tried to focus on a few yoga movements for bloodflow and spinal health, but do not always feel relief.
Very Emotional - I am still very emotional. While I don't immediately burst into tears at everything, I have moments where I have to work extra hard to keep my emotions in check as I have surges of aggitation and irritability. I am proud that I do not have outbursts of rage, but boy, do I feel them creep up out of nowehere, especially the times where I struggle to search for words or my head just hurts when I try to think of what I had for breakfast.
Minor Loss of Balance and Coordination - This worsens as my headache spikes in pain. I am not able to do balancing yoga poses like I had been able to do pre-TMS.
Neck and Mid-back Pain - This varies, but overall, my neck and mid-back pain have worsened since my last update. I have days where I can't turn my head or move for the fear of my neck snapping, or at least feeling as though it is going to snap in half. I have noticed that my neck pain increases when there is the slightest jostling of my head or I do too much in the day - my neck is trying to protect the movement and thus, damage to my brain.
How has the search for answers has been going since my last update?
With all of these symptoms, I am fighting daily for doctors to look beyond the "headache" symptom and treat as an injury of the TMS treatment. This has been difficult because the "TMS utopia" in the majority of the media has led individuals to struggle with understanding the procedure and how it could be harmful. I have been laughed at by some doctors for saying "brain injury", I have been jokingly called "headache girl", and I have not been able to get on the calendar to see specialists because my referral notes my primary concern as a "headache post-TMS".
It is tough.
To quote my brilliant husband, "if I am shot in the leg or stabbed in the arm, I do not say that I have a leg-ache or arm-ache, I call it what it is - an injury."
I have had to advocate for myself at every twist and turn in this journey to understand what happened and find a path to healing. Not only is healing slow, but anything regarding medical care is a snail's pace. I have bi-weekly meetings with my primary care doctor which are now, referral requests and check-ins. Then, the time it takes to get the referral processed and book the new appointment has been insanely disorganized and you guessed it, slow. Now, that is not to say that I have not had some wins sprinkled in this medical journey as I have had a few wins. The majority of my experience with doctors has been a rollercoaster of emotions.
As a result, my husband and I sought treatment and out-of-pocket care with the Amen Clinic. Through the Amen Clinic, we obtained SPECT images of my brain and a consult with a doctor to review the imaging and to outline a plan of care.
In order to get the SPECT images, we went up to Seattle for two sessions of imaging. Each session was a different measurement of my brain - the first, during concentration and the second, during rest. Each scan required an injection of radiation in my arm. It was described to my husband that unlike an MRI that uses radiation from the machine to pass through the body to obtain an image, the SPECT machine uses the radiation that passes through the bloodstream to obtain an image. I felt so sick after these two days of radiation! It felt worse than the flu, but I was hopeful to get answers.
Enter some validation.
Once my SPECT images were processed, I met with a doctor from the clinic to review my images and create a plan. The SPECT images showed a large divot on the left side of my head, the left prefrontal cortex and a small whole in the back leftside of my head, the cerebellum. The doctor suggested that TMS caused the divot on the leftside of my head by not only obstructing bloodflow to that area but also impacting Broca's area (where we process speech) and the occularmotor nerve in that area. The hole in the cerebellum was due to my cerebellum trying to step up and take over duties for an injured teammate (the left prefrontal cortex) and the scan shows that area littered with fatigue.
Now, let's address the possibilities of a past injury in those two locations.
To the best of my memory and also pouring through all of my old medical records, I cannot link an injury to the exact same spot of the TMS device other than, the TMS device. Yes, I've played soccer and have taken some blows but they were all on the right side of my face, so it is extremely difficult for me to associate past injuries with this current divot. Additionally, my symptoms are all explained by damage to this area:
Broca's = speech difficulty
Cranial III Nerve = vision issues
TBI = light and sound sensitivity, head pain, abnormal crying and moods, fatigue, pupillary reactions, etc
Cerebellum = balance and coordination issues
This meeting was extremely validating and encouraging. It was the first time I heard "TBI" from a doctor. From that meeting, I received an updated plan to heal.
Craniosacral Therapy - Continue to see my craniosacral and acupuncturist to allow the brain to reduce inflammation and realign
Supplementation - Help support rebuilding nerves ans neurons in my brain
Functional Neurology - Received a referral to a TBI specialist that is a Functional Neurologist Chiropractor
Drumming or Dancing - Help rebuild the cerebellum through rhythm
A month after my SPECT scans, I saw my Optometrist and received the referral to a Neuro Optometrist who specializes in TBIs. I have my first session booked for the second week in the New Year, so I am looking forward to an assessment and more information then.
And, just recently, I spoke to the Functional Neurologist on the phone and she was incredibly knowledgeable and helpful. I could not speak anymore highly of a first encounter.
Before meeting in-person, the doctor gave me a few tests to try and gage the level of head pain I experience from those tasks. For example, one is moving my right hand and arm in a figure-8 pattern for 30-seconds. If you're reading this, you might be shocked that this could spike head pain, but it can. I usually push through my brain pain until I'm clutching my head at night in order to fall asleep, so the goal now, is to assess what activities and actions aggravate my leftside divot and where we can move to give it a break and help it heal.
To give this therapy an honest try, I plan to take notes and document my journey, so I will write more details about this experience in a future post.
One thing that was mentioned that stuck with me was that the doctor just received another referral from the Amen Clinic and that this client had obstructed bloodflow from TMS. Wow! I cannot believe that this is happening to other people. I am saddened that injuries are not being reported and that issues with TMS are not taken seriously. After speaking to an advocate of adverse TMS, I know there are more people that have not been vocal and are suffering from the effects. I cannot put into words how much this hurts my heart, mind, and soul.
As you can see, there are extreme ups and downs with healing. I am working hard for my injury to be taken seriously so that other people that have been adversely affected by TMS treatments have a better chance of understanding from others and healing. I know that for many, a visit to an out-of-pocket specialist is not in the budget and a TMS treatment might be the last attempt they make at their mental health for the better, so I am going to try and continue to stay strong and be an advocate for those people as well myself.
If you have an injury from a medical procedure, please know that you are not alone. If you struggle with your mental health, please know that you are not alone. Please reach out if you have questions, concerns, or comments. I'd love to help.
If you are interested in continuing to follow along on my journey to heal from TMS, please keep an eye out on my blog as I plan to post more updates as I can. Thank you for following along thus far.
And lastly, a shout-out to my husband for continuing to help me write these posts. Without him, I would not be able to share as much as I do as he has helped edit and add more details to my posts as my brain fatigue and fog sets in.
All my light. All my love.
Namaste.
Jordan
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