In the first few days following my ER visit, I was very tired, dizzy and nauseous. I also felt a sharp pain in the back of my neck, and in the front of my head at times. The muscle relaxants helped, but I didn’t like the way they made me dizzy and out of it. I slept for long periods of time. I struggled to wrap my mind around what had happened, and what it meant for the future; but at the same time I felt peace. Our families visited and brought us food, and our sweet ward showered us meals and support. My job at the hospital, my tutoring job, and my job doing physical therapy with a neighbor were all very understanding and said I should stay home as long as I needed to. Justin worked on getting an appointment for an MRI. We hoped to be able to do it in the next day or two, but it took about a week for our insurance company to approve the MRI. This was frustrating, because I wanted to know a time frame of when I could go back to work.
I gradually began feeling better. After about a week I was up and walking around more. It sort of got to the point where I felt like the whole ordeal was just a strange dream. However I would have intense headaches and bouts of dizziness from time to time.
Research
During this time we learned all we could about Chiari Malformations. Here is a good definition taken from http://www.mayoclinic.org/diseases-conditions/chiari-malformation/basics/definition/con-20031115
Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. 
Another helpful definition says:
Another helpful definition says:
Chiari Malformation Type 1 (CM) is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid (a clear fluid which bathes the brain and spinal cord).
This same source describes the symptoms:
Because Chiari involves the nervous system, symptoms can be numerous and varied. In fact, one large study showed that the vast majority of Chiari patients reported 5 or more symptoms, and 49 distinct symptoms were reported by 2 or more patients. Despite this variety, the most common Chiari symptom, and the hallmark of the disease, is a headache. Usually, the Chiari headache is described as an intense pressure in the back of the head and is brought on, or aggravated, by exercise, straining, coughing, sneezing, laughing, bending over, or similar activities….”
MRI #1
At length we were able to schedule an MRI. It was an uneventful experience. I did have to get an IV, but it was not as painful this time. They didn’t tell us anything while we were there, but gave us a CD with the images that we could give to the neurosurgeon. Here is a picture from the MRI:
The picture on the left is a normal brain (courtesy of Google images), and the picture on the right is me! In the red circle on the left you can see that the cerebellum has lots of comfy space around it, allowing plenty of room for spinal fluid to pass through. In my image, you can see that the “cerebellar tonsil” is squished up against my spinal cord. Looking at the image, we were pretty sure I had a CM (chiari malformation), so we were anxious to hear what the doctor had to say.
We read that treatment options include medication if the symptoms aren’t severe, or surgery. Justin and I were anxious to find the best option.
We had a difficult time finding appointments that weren’t a month or two out with neurosurgeons. I called the doctor the ER had recommended to us- a Doctor Smith in Provo and was told that “most of the doctors in the office were booked 3 months out” and that she couldn’t tell me any dates at all until the MRI place faxed over our images and the ER sent a referral saying we needed to meet with them. I felt like she didn’t want me to make an appointment at all for some reason. I couldn’t figure out why. Must have been a rough day or something. We called the ER to have them send a referral and they were really confused as to what the doctor’s office meant by a “referral” that needed to be sent. The MRI people wouldn’t fax over the images until the doctor’s office requested them, and the doctor’s office wouldn’t send a request. Finally Justin gathered up all the paperwork we had from the ER along with copies of the CDs from the MRI, went over to the neurosurgeon’s office and firmly told them, “Here is the ‘referral’ and our images you asked for, and please make a note for the doctor that my wife is in pain and we need to see someone as soon as possible.” (Go Justin!)
Doctor’s Appointment #1
We didn’t expect that particular office to be very helpful so we looked elsewhere and got an appointment with a doctor in Payson. They were very pleasant to work with. Justin and my mom accompanied me to the appointment.
Doctor Farley had looked at my MRI and confirmed that I did in fact have a Chiari Malformation. He asked us all about my symptoms. He was very interested to hear that my mom suffers from migraines, since a lot of my symptoms were similar to those of a migraine. He believed that the whole first episode was a migraine, but we found out about the CM as a result of it. He also said that since I wasn’t having symptoms frequently, he would hesitate to do surgery right now. He recommended I get another more detailed MRI and wait 6 weeks to see if more symptoms showed up.
He also told me that if I never have more symptoms and don’t get surgery, there could be some problems with childbirth. I perked up right away, since Justin and I want to have children soon. Because of the complications CMs cause with cerebrospinal fluid, having an epidural is not a good idea. But the intense pushing involved with delivery can also be problematic, since any motion of bearing down can bring on an intense headache and other symptoms. It seemed like I either would need to have the surgery or do a c-section when the time came to have children. Not the end of the world, but I would rather have the option to choose if possible.
For some reason his whole explanation didn’t sit well with Justin and I. I understand the need to be conservative with surgery and not jump right in. But the symptoms seemed more severe than just a simple migraine. We also didn’t like the idea of waiting around for symptoms to show up again. I was worried about driving, working, babysitting, and doing many other things knowing that an attack like that could happen again at any time. He made the symptoms sound like they were no big deal, and I’m sure he had definitely seen worse, but for me they were very painful, frightening and disturbing. We wanted more information and solutions because we feel very anxious to start having children, and I wanted to get this figured out before continuing to attempt becoming pregnant. I thought- What if I get pregnant, and then all of a sudden symptoms flare up again and I really need surgery? It’s probably difficult/dangerous to have a surgery when pregnant.
After this visit, I started keeping notes of my symptoms in my phone.
Luckily for us, the first doctor’s office called back an hour after we got home from this first doctor visit. Their schedule had magically cleared up and they had an appointment for me the next week ☺ We were grateful for an opportunity to get a second opinion.
MRI #2
We quickly scheduled the other MRI Dr. Farley had ordered so we could bring it with us to visit Dr. Smith. This particular MRI is called a Cine MRI scan. It’s like a normal MRI, but it images more specifically the flow of CSF (cerebrospinal fluid). It is helpful in determining how much the CM is blocking the back-and-forth flow of the CSF between the brain and the spine. (http://www.mayfieldchiaricenter.com/chiari_diagnosis.php) If there is significant blockage of the CSF, it can be problematic.
Doctor’s Appointment #2
We met with neurosurgeon Dr. Smith in Provo. He was very kind and showed a lot of concern for my situation. He had recently finished his schooling, and we felt this was great, because he was still in the learning mode. He researched our questions and took a lot of time talking to us about what he knew. From looking at both of the MRIs he also said I definitely had the Chiari Malformation, and it was most likely causing some kind of fluid blockage. He also felt that surgery wasn’t necessary right away. He said that he would look more closely at the MRI and call us with his findings.
We appreciated his candor and helpful attitude a lot. However, he had never performed the actual surgery associated with a CM. We all felt he was a better option than the first doctor, but wanted to find someone who knew more about the condition and had performed the surgery many times.
At this point, we decided our plan should be to find someone we would feel comfortable with performing the surgery (should the need occur) who could give us more information about the implications of the condition and how it would affect aspects of my life such as work and childbirth.
In the next post I’ll talk about how my symptoms have returned :(
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