Brain Decompression Surgery – February 19, 2021

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I’m having brain decompression surgery for a brain condition with no cure. The neurosurgeon said he is confident that the surgery will improve my quality of life by 87%. This is a HUGE answer to prayer!

While the thought of having brain surgery is intimidating, it also brings a sense of peace. I have been struggling with these weird symptoms with no explanation for about five years and now I finally have an answer and hope to get my life back. I know there’s a long road before me, but I know I’m not walking this alone. God is going before me and will continue to guide me and bring me peace and comfort. He has surrounded me with people who love me.

The neurosurgeon said he thinks with surgery he can improve my quality of life by 87%. He went over all of my scans with me and explained what is going on in my brain.  The lower part of my brain has dropped and is compressing my brainstem and the CSF fluid flow is completely blocked on one side of my brain and diminished on the other. I’m going to have the brain decompression surgery on March 23rd in Colorado! I am relievedexcited, and terrified at the same time. I am thankful for God for directing me to the right neurosurgeon and am grateful for all the family and friends who have prayed for me and supported me all this way!

There are so many ways God brought the pieces together and made a way when it looked like there wasn’t one.

PDX Encounter – February 15, 2021

Adapted from Facebook Post:

Because of a snowstorm, our direct flight to Denver was cancelled late last night. We almost missed the notification. After frantically trying to rebook for almost an hour, we got onto flights through Seattle. We won’t get into Denver until 10pm tonight, but we’ll make it to my appointment in the morning. Our dear friend came and picked us up, to drive us to the airport, because we couldn’t get out of our neighborhood. Praise God! He made a way.

Something special happened at the Portland, OR airport.

When our flight was canceled Sunday night. My mom frantically tried to rebook an early flight with a short layover, over and over, and it just wouldn’t go through. The flights with short layovers were all filling up and disappearing as she was trying to rebook, so she finally gave up and booked a different flight with a 3 1/2 hour layover in Seattle, we wouldn’t arrive in Denver until 10pm. She was very worried about how I would handle the long day.

After we boarded at Pdx, we sat on the plane for an hour because Seattle was backed up and not allowing aircraft to takeoff yet. Then the pilot announced that the check engine light had come on, so we had to deboard and move over one gate. Everyone was stressed and impatient. The plane was full of upset people, which 25 passengers didn’t reboard the new plane because they had missed their connections already.

When the pilot first announced the delay, I felt peace wash over me and knew that we were going to be just fine, make our connection and get to Denver in time for the appointment (which was only an opening because of a cancellation, otherwise we would not have gotten an appointment in CO for another month).  I knew it would be okay because I believed God hadn’t let the flight we wanted go through. We had the luxury of the unwanted 3 1/2 hour layover!

We went over one gate and everyone crowed together while we were waiting to board the new plane. My mom noticed a man, about 35ish,  standing near us. He was wearing a baseball cap, but he had a scar running down the back of his head and neck. We wondered if it was from an accident or something, but knew it was probably from brain surgery. my mom debated bothering him, but felt prompted to go. So she did.

She asked if he had had brain surgery. He lit up and said that he had. She told him that we were traveling to Denver to meet with a neurosurgeon for me. He immediately walked over to me and shared his story. Then the man traveling with him came up and introduced himself to my mom and said he was the man’s brother. Then turned to me and asked my name. I knew at that moment that he was a believer and he was going to pray for me.

He did. He asked if he could pray for me. I replied yes and then we all held hands in the middle of everyone and he prayed a beautiful prayer over me. Afterward, the brother who had had surgery turned to me. He looked me in the eyes and told me that he knew I would be okay because he could see it in my eyes. At that point, we didn’t yet know I would be having surgery.

He then asked where we were going. When we told him the Colorado Chiari Institute he was startled. He said that it is the top 1% of the 1%. We thought had that, but it was good to hear it from someone who was familiar with brain surgeries.

A New Path – February 7, 2020

Thank you all for your continued prayers for me!

After months of waiting and not knowing anything new, there is positive progress! My mom and I are flying to a specialty Chiari clinic in Colorado (2/15-19). They will do a 3 day evaluation to determine if they think I would benefit from brain surgery. If there is a surgery, it will be about a month later, after the insurance pre-approval is processed.

It has all come together in the last two weeks and God’s hand has clearly been on all of it!

The neurosurgeon I saw in Seattle, in October, was concerned that on top of Chiari Malformation, I also have MS. I was referred to the MS clinic at OHSU, in November, and I’m still waiting to schedule with them. I don’t think that I have MS. I have no brain lesions and different symptoms. Chiari is still being researched and there are still many unanswered questions about it. Among doctors, there is not consensus about the cause, the symptoms, or the treatment. Traditionally (Seattle doc) it was believed to only affect motor skills and all other symptoms were attributed to MS or something else. The newer school of thought is that the pressure on the cerebellum (squished brain!) and the blocked CSF flow (crowding of the brain tissue blocking cerebral spinal fluid flow) can be the source of ALL of the symptoms.

I waited months to see the neurosurgeon at UW. I was so disappointed that during my appointment he spent less than 5 minutes talking to me about my symptoms and didn’t spend much time at all reviewing my medical history. He seemed to be relying on notes from people who hadn’t thoroughly examined me. He seemed to have made all of his decisions before he even evaluated me. At the end of the appointment, he remarked that he was the second neurosurgeon I was consulting with about surgery. I now think that was a big part of the issue with him. The other neurosurgeon never looked at any scans and told me that he couldn’t speak to the Chiari because he didn’t have any information. He wasn’t very familiar with Chiari, that’s why we went to the specialist in Seattle, but he seemed unwilling to contradict the other neurosurgeon. I don’t understand how he could have thought that first doctor had really examined me because there would not have been any notes about that since it didn’t happen. This seems to be a common thread that is woven into many people’s Chiari experience.

I am so excited that the clinic in Colorado will do a thorough analysis of my medical history and all of my symptoms! Over the last few months I have felt increasingly weary and my symptoms have progressed. Lately, my hearing has been going in and out in both ears and my head and neck pain is worse. Last week my hearing loss lasted five days in one ear, it felt like I was underwater and sound was muffled by 90%.

I am hoping that in CO they will not find anything that will prevent the surgery and that I will be able to have it.

Please pray with my family and I that God will use this neurosurgeon and his team to heal me and if not that he will guide them to the right answers.

Seattle – October 19, 2020

Adapted from a Facebook post:

I met with the neurosurgeon in Seattle this week, ready and prepared for setting the date for my surgery and expecting to go over details.

I was very surprised by new information that is pivoting me in a different direction. High quality imaging revealed that the Chiari Malformation has not causing a cyst in my spine like the previous MRI indicated. The doctors thought a cyst was the source of my neurological symptoms. While it is good news not to have a cyst in my spinal column, it also means that the cause of many of my symptoms remains a mystery and my neurosurgeon wants clarity. He strongly advised me to hold off on surgery and find out what is causing those symptoms. Surgery right now would relieve some of my symptoms, but would cloud everything and make it difficult to sort out what else is happening in my body.

What we didn’t post at the time was that he told us that while I had Chiari, he also believed that I had Multiple Sclerosis. He stated that he didn’t believe that the Chiari was the source of my symptoms. He is part of the old school of thinking about Chiari. They don’t believe Chiari causes any cognitive issues or many of my random issues like periodic hearing loss, numbness and the location of some of my head pain. The MS part didn’t make sense to us because I have know lesions on my brain. Very few people have MS without some lesions on their brain. He just shrugged his shoulders to that and suggested that I do yoga and meditate. He also made a big point of dictating a note to my primary, from a phone, say that I was fine and that my Chiari was not causing any me problems. He finished the appointment by getting very close to my mom and saying to her, “Do Not Take Her Anywhere Else For Surgery!

We returned to our hotel room in Seattle, that night, feeling completely defeated and bewildered. We didn’t know what our next steps looked like. We were trying to be grateful that I wouldn’t need brain surgery, but it just didn’t feel right. I felt like I was in The Twilight Zone. Since I don’t sleep much (because of my compressed brain stem) I binged watched the entire season of Young Wallander series – 7 episodes!, it was awesome!

It is a huge relief for me to not be facing immediate brain surgery. There is also intense frustration at being back to not knowing what is the cause of my neurological and vascular symptoms and how to relieve them. I met with my primary doctor yesterday. The next step is to begin working with several new specialists. The upcoming weeks will be full of more tests and appointments. I am trusting God through this unexpected turn. I still feel very ill. I am weary and it’s been a tough week processing this new twist. I appreciates all of your prayers for healing and your support and encouragement. I have a hard time replying right now, but I still read all of the posts and messages and I’m grateful for them.

I love you all!

November 22, 2020

The more time the passes the more defeated I feel. I am now left in this waiting hole with no answers. I was scrolling through Facebook and came across a A.W. Tozer quote that really spoke to my heart.

And whatever you ask in My name, that I will do, that the Father may be glorified in the Son. If you ask anything in My name, I will do it. – John 14:13-14

In all our praying, however, it is important that we keep in mind that God will not alter His eternal purposes at the word of a man. We do not pray in order to persuade God to change His mind. Prayer is not an assault upon the reluctance of God, nor an effort to secure a suspension of His will for us or for those for whom we pray. Prayer is not intended to overcome God and “move His arm.” God will never be other than Himself, no matter how many people pray, nor how long nor how earnestly. God’s love desires the best for all of us, and He desires to give us the best at any cost.

He will open rivers in desert places, still turbulent waves, quiet the wind, bring water from the rock, send an angel to release an apostle from prison, feed an orphanage, open a land long closed to the gospel. All these things and a thousand others He has done and will do in answer to prayer, but only because it had been His will to do it from the beginning. No one persuades Him. What the praying man does is to bring his will into line with the will of God so God can do what He has all along been willing to do. Thus prayer changes the man and enables God to change things in answer to man’s prayer.

A.W Tozer, The Price of Neglect, pp. 51-52

More Info On Waiting & ER Visit – October 23, 2020

The UW neurosurgeon reviewed the special MRI from last week. Based on the results, we scheduled the consultation to discuss surgery for November 16th. I am on standby to go up earlier if there is a cancellation. Prayers are being answered! I am grateful to finally get in with this specialist neurosurgeon, in Seattle at UW. He is one of the top ten specialist in the world, for this uncommon noncommon condition.  He is the third neurosurgeon I have been referred to, because the first two were not comfortable working with my condition. It is very surreal to shop for your own neurosurgeon for your own potential brain surgery!

Last week, we traveled to Seattle for the CINE MRI. It is used to measure the amount of CSF flowing through my body with each heartbeat. My extra brain tissue can act like a plug in a drain, blocking CSF fluid and causing my symptoms. We do not understand all of the report yet, but we read that there is “diminished CSF flow” around my brain or neck. (Now we know that he never ordered a brain MRI. We don’t understand why he didn’t.)

If I had the surgery, they would remove part of my skull and make more room for the fluid to flow around my extra brain tissue. Sometimes they cauterize the tail of the brain tissue and sometimes they need to remove C1/C2 from the patient’s neck to make additional room.  I will find out what the plan is for me soon.

Over the last several days, I have had increasing abdominal pain and back pain along with neurological symptoms like numbness and sharp pains in my face, arms and legs, head, neck, shoulder, and back pain, slurring my words, brain fog and swelling on the left side of my face. I discuss going to the ER with my mom, but we do not think they can do much to help me, it is very confusing.

After I went to the ER for my abdominal pain and was told it was pancreatitis, I had a follow up with my primary care doctor. He rechecked my bloodwork and ordered an abdominal CT. My bloodwork looked good and the CT should be scheduled soon. The pancreatitis diagnosis is puzzling and my doctor thinks my body may just be misfiring because of the Chiari.

My twin sister came home from the Army on Emergency Leave and my other sister came home from school. It was nice to have all four of us sisters together. We made the most of it!

MRI, Answered Prayers & ER Visit -October 19, 2020

The UW neurosurgeon reviewed the special MRI today, from last week. Based on the results, he scheduled the consultation to discuss surgery for Nov 16th. We are on standby to go up earlier if there is a cancellation. Prayers are being answered!

I am grateful to finally get in with this specialized neurosurgeon, . We are waiting for a call, before then, to share the findings of the MRI with us. Over the last few days, I have had increasing abdominal and back pain along with neurological symptoms like numbness in my face and arms, head, neck, shoulder and back pain, slurring words, brain fog, and swelling on the left side of my face. My mom and I discuss going to the ER often, but we don’t think they can do much to help me, it’s very confusing.

Last night seemed different, so my mom took me to the ER for abdominal pain and they diagnosed me with pancreatitis. I don’t drink, smoke or use drugs, so it doesn’t make sense. There could be other causes of pancreatitis, but the doctors are puzzled. I will be rechecked on Wednesday. I feel so sick and very stressed.

Referral, Referrals – September 27, 2020

The “urgent” referral to the neurosurgeon Chiari specialist in Seattle, sat on the schedulers desk here for three weeks. Our insurance doesn’t require referrals, so they didn’t send the referral out, not realizing the neurosurgeon requires a referral. They also didn’t contact me directly. It was finally sent out Wednesday afternoon. Seattle asks for five days to process, after they get it.

I called them Friday anyway. They said they had it, but scheduling was on hold because they needed more details. They are requesting my images and more records. We’re faxing more records up tomorrow. I reviewed my back/ head MRIs and sinus CT records from Vancouver Clinic from 8/2017. The radiologist noted on my back MRI that he suspected development of Syringomyelia (CSF filled cavities (called syrinx) in my spine) He noted they were unusual for my age and suggested follow up questions. Neither my primary (then) nor my neurologist (then) mentioned that to me.

There were a few other clues, but that was the big one. Chiari Malformations and Syringomyelia are both incurable conditions that go hand in hand. The syrinx causes many neurological symptoms. They can’t be removed, but after decompression surgery most may shrink by 80%, causing a big improvement in symptoms. We learned this by watching videos on YouTube by the neurosurgeon in Seattle. That is how I recognized the word Syringomyelia in the report. I formally withdrew from school for this semester. Great Northern University, my friends and church community in Spokane have been a wonderful support. It’s important that I’m home right now, but I miss my life there. Our prayer request now is to get in with a knowledgeable neurosurgeon, either in Seattle or somewhere else. I am feeling overwhelmed and some of my symptoms are escalating. For example, Friday night three of my fingers on my left hand went numb and I couldn’t feel them at all.

Please pray for peace and comfort for me as I journey through this valley.

Mystery Illness – September 17, 2020

Last August, I was diagnosed with Chiari Malformation, that means that my brain dropped in the back herniated into my spinal canal and it is causing many neurological problems.

We now know the full picture of what is happening in my brain. Cerebral spinal fluid is supposed to flow freely all around your brain and into your spinal canal. My CSF flow is completely blocked on the right side. My skull is also a little too small for my brain, so my skull is squishing my brain and my brain stem is very compressed.

This is adapted from one of my mom’s Facebook posts from Fall 2020:

I am being referred to a neurosurgeon in Seattle, who specializes in Chiari Malformation, to come up with a treatment plan. My doctor here thinks I will need a decompression surgery, unless they can find another cause for my symptoms. That means they will do brain surgery to remove a portion of my skull, in the back of my head, to make more room for the extra brain tissue. The neurosurgeon I saw on Monday is concerned that I may also have a carotid artery dissection that is leaking and may be causing my stroke like symptoms.

He ordered MRI/MRAs of my neck and brain. I am still waiting to schedule for those. Right now, my five week, high level migraine and vomiting has passed. My neck and the back of my head are stiff and sore with pressure and my face and neck are numb. My doctor said that won’t go away until the potential surgery. I feel a deep tiredness and it is often hard to put my thoughts together. I am home from school, resting a lot and trying to process all of this.

Thank you all so much for your love and prayers!