“I looked through your scans and fortunately your symptoms aren’t due to your Chiari Malformation. You must be relieved that your Chiari is asymptomatic.” Dr. M, a neurologist said, matter of factly.
“Then what is causing my symptoms?” I asked politely, silently not believing a word she said.
After the horrendous experience with Dr. W, where I was called “snarky” during a nerve conduction test, and then was later dumped by him because I challenged his mistreatment of me, I have been sheepish with how I approach doctors. However, I have been trying to get to the bottom of the chronic headaches, vertigo, and numbness that I had been experiencing since April. It had been four months and I was beginning to feel like I was going in circles, which added a figurative dizziness to the literal dizziness that I experienced most days.
After Dr. W dismissed me, he sent me to Dr. H, a neurosurgeon supposedly with Chiari experience. After ruling out that I didn’t have the classic presentation of a Chiari Malformation (disrupted cerebral spinal fluid flow), he sent me back to a neurologist (Dr. M) for further testing. I had seen her earlier in this mess. She seemed nice, but didn’t seem to get it.
Chiari Malformations are structural defects that occur when part of the cerebellum extends below the foramen magnum (the hole at the base of the skull), into the spinal canal. They are relatively rare and often misunderstood by medical professionals. Dr. W did not even bother telling me about my condition. I read about it on my own while reviewing my radiology reports when getting my oil changed after my appointment with him. When I called him out on his negligence, he told me he didn’t have time to review every item on a radiology report and dismissed me.
“Sometimes women in their late 30s begin experiencing daily headaches. I’ll prescribe you some headache medication.” Dr. M said.
“What about the numbness in my extremities?” I asked.
“Sometimes body parts go numb for no reason and there is nothing we can do about it” she replied matter of factly.
“What about the dizziness I have been experiencing on a regular basis? I never had any of these symptoms before a few months ago” I said, feeling frustrated, but trying not to relay it.
“Just make sure you drink plenty of water and wear a hat in the sun. That should help!” Dr. M said.
Any of this, I may have believed in isolation. However, there was a constellation of symptoms here that seemed to be dismissed. I have always been an athletic person, who ate healthy and had no history of any medical issues. At the time, I didn’t eat sugar, white flour, meat, and I exercised daily. I thought I was doing everything “right.” I injured my shoulder several months earlier and felt like my body had started to disintegrate after this happened.
I persuaded Dr. M to run some labs to rule out other conditions with similar symptoms. I am pretty much the biggest wimp when it comes to needles and blood draws. The fact that I was requesting this meant that I was serious. It also seemed odd to me that I had numerous MRIs and various other tests, but no one had thought to run any blood work. All the labs that she ordered came back normal. I had hit another dead end.
I reached out to my new friend, Alyson, about my frustration. Alyson also has a Chiari Malformation, and has been an enormous support to me. She has been dealing with this condition for years, and has seen some of the top experts for treatment. I became acquainted with Alyson through a friend named Lisa. Lisa read my initial blog posts about my Chiari diagnosis and immediately put me in touch with Alyson, knowing that she may be able to help me through this. I am forever grateful for Lisa for doing this.
Alyson says to me, “honestly, I wouldn’t believe a word she says. Unless, she’s a Chiari expert, she doesn’t have the knowledge to speak about this. None of the doctors you have seen up to this point do.” Alyson encourages me to send my scans to her doctor in Pennsylvania, Dr. L, who is one of the small number of experts on this condition in the country. I had no desire to go see a doctor eight hours away, but figured it didn’t hurt to get his opinion on my situation. I followed through with her suggestion and made an appointment with him for early December.
If there could be a heroine and hero to this story, it would be Alyson and Dr. L. Alyson has taken me under her wing from day one. She checks in on me on an almost daily basis, shares her knowledge with me, and has become a close friend. I liken her to being my sponsor- someone who has walked a difficult path and is now using her knowledge to help others in the same boat. And her path has been far more treacherous than mine. Her life is indelibly changed due to her Chiari Malformation. She has the empathy of a therapist, the soul of an artist, writes like a poet and takes photographs that will take your breath away. However, many of the things she had planned for herself have been set aside due to her medical needs.
I, on the other hand, am still out doing most everything I typically do, with modifications. No one would have a clue any of this is going on if they didn’t interact with me on regular basis, or if I didn’t write about it. Like I have said in past blogs, appearances are deceiving, which is why it is important to “be kind, for everyone you meet is fighting a harder battle.” This year has given me incredible insight into chronic pain and invisible illnesses through my own experiences, my research, and the people that I have connected with. Someone can appear to be fully functioning in this world and be suffering either physically and/or psychologically, without it being visible to the naked eye.
I reached out to Dr. L and have been amazed by him without even have seen him in person (yet). He took his time to review my scans and consult with me over email. “It seems like the blood flow out of your brain may be causing your symptoms” he wrote to me. “Before you see me, you should get a MRV.” An MRV is an MRI that focuses on veins and blood flow. I obviously followed his suggestion and was fortunately able to convince Dr. H (the neurosurgeon that Dr. W passed me along to) to order the test for me locally. His nurse wrote me, “Dr. H. typically does not order tests for other doctors, but has agreed to do this for you.” Possibly, Dr. H realized that he didn’t get it right with me.
All of this was starting to make sense to me. Recently, I had been waking up with the room spinning and without feeling in my hands and feet. There have been many moments where I have felt intoxicated without having taken a single sip of alcohol. I continuously had a headache situated in the back of my head. Dr. L’s theory of disrupted blood flow out of my brain seemed to add up.
In early October, I had my 6th MRI of the year, mailed the cd of the scan to Dr. L, and then went off to California a few days later on top secret blog related business. Shortly after we arrived in California, I received a phone call from a number in Pennsylvania I did not recognize. I was going to ignore it, but my husband, Mike, urged me to pick it up. “It could be Dr. L’s office” he said.
A nurse asks for me and says, “Dr. L reviewed your MRV and found stenosis in several of the veins in your brain. He will discuss how to proceed with this during your appointment in December.” I asked her to slow down and repeat this, so I can write this down. I am shaking because I am disbelief that I am finally getting some answers…in Los Angeles, no less. There are moments in life where the world does not feel real. This was one of them for me.
I immediately share this information with Mike and exclaim, “he found something! I’m not crazy.” He lovingly replies, “you are crazy, but not because of this.”
He looks up what stenosis means and the particular veins that nurse relayed were impacted. Mike says, “well, I think I just found directions on how to fix this. I could give it a try.” He apparently stumbled across a step by step guide on neurosurgery techniques for treating this condition. I respond, “sure, let’s just wait until after we finish lunch.” He then shares that stenosis refers to the narrowing of a blood vessel to the degree that it impacts blood flow.
I sit there shocked that this was all figured out through a series of emails with a neurosurgeon in Pennsylvania, who I was put in touch with from a girl in Florida who I have yet to meet in person, that I became acquainted with through a mutual friend who read my blog posts. I just happen to learn all of this while I am on a whirlwind trip to Los Angeles. I finally had an answer! I had never been so elated to learn something was wrong with me. This is such a bizarre feeling, but after months of going in circles, it felt great to get some clarity.
I reach out to Alyson and let her know what Dr. L said. “I knew Dr. L would figure it out! He’s brilliant! I’m so happy for you!” she says excitedly. “I am so relieved! But, what do I do now?” I ask her. Alyson matter of factly says, “You go see him in December. For now, you live your life and you wait!” As I have quoted several times before this year, “the waiting is the hardest part” —Tom Petty.