The long awaited appointment with the neurologist was earlier this week and it was a complete disappointment.
The neurologist was not at all familiar with Chiari Malformation and was not comfortable treating it. She focused the first half of the appointment on all the previous misdiagnosis before I was diagnosed with Chiari Malformation, starting when I was 15 years old. She went into how she knew a few of the neurologists who I saw or knew of them. Which made it awkward, because their diagnosis were wrong and she seemed to miss that part.
My doctor and physical therapist recommended to me that I write out a list out of all my symptoms and to try and notice if there are correlations between them and to make notes. When I pulled my list out she waved her hand and told me she did not need to see it.
She kept interrupting me and did not let me ask any questions. She redirected everything I said back to migraines and the medication she thought I should take.
We didn’t discuss Chiari or brain surgery. Anytime our conversation drifted over there she just redirected it and would not let it happen.
When I got to the car and read the after visit summary it did not reflect the appointment at all. She had written that she discussed all these things with me that she did not, and the stuff we did talk about was not reflected in the notes. There were also inaccuracies about symptoms which will add to the confusion with the next doctor.
I felt myself shut down during the appointment because it was just like every other appointment with someone who does not understand my diagnosis. It was so frustrating and discouraging. I want to understand what is happening in my body and what is causing some of my symptoms.
We called my doctor’s office the day after my appointment and talked with a lead medical assistant and shared our frustrations about the appointment. She looked up on her computer “Chiari Specialist” in Oregon and Washington but it only brought up neurosurgeons, which is not what I need because I already had surgery.
So, I am back to being stuck in between not needing to see a neurosurgeon, but not being able to find a neurologist.
We are regrouping now. I am not sure what to do now. I just want to understand what is happening in my body. We are thinking that we may reach out to different groups like Conquer Chiari and Chiari Project or reach out to groups on Facebook to see if they have any recommendations.
In the meantime, I am still getting weekly infusions and I am going to try a monthly injection that is supposed to block the pain receptors in the brain stem. My brain stem was compressed by my skull, so this injection (Emgality) could help with that.
I hope this helps because I have more days with a migraine than I do without during a month and head pain daily.
I did the first injection today. It takes 10 seconds to do, but with my nerves it took me about 40 minutes. It felt like a wasp sting and burned. Since it was the first initial dose, I had to do two doses. The second time I was able to work through my nerves a little faster, but it did not help that I knew what was coming. I will try it for three months before it is consider a failed medication and I try something else.
Still waiting and still praying,
“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12
There was a HUGE answer to prayer today!! I finally got an appointment with a Neurologist after a year-long wait! I have only been able to see a neurologist twice since I was diagnosed with Chiari Malformation two years ago, and that was after I had brain surgery. Once Chiari was the diagnosis I was sent to a neurosurgeon.
I had my appointment with my doctor today and we discussed the issues with referral, all the systemic issues, and not being able to get an appointment with a neurologist until March. He told me that he was going to reach out and talk with two neurologists at OHSU that were recommended to him by the pediatric neurologist. He was also going to reach out to other neurologists too.
Before I had surgery none of the migraine medications I tried helped because my headache and pain were physically caused by my brain stem being compressed and squished by my skull. My brain decompression surgery fixed that. Post-surgery I am feeling other types of headaches that were probably overshadowed before.
My neurosurgeon and a neurologist both agreed that I have at least three different types of headaches/migraines. While my brain has been healing, I have not tried many headache medications, just one and it didn’t do much, it just left me groggy and irritable. Today, I asked my doctor if he thought there was a medication I could try for my constant headaches.
Since I have had brain surgery my blood pressure has been on the lower side. I have always been on the lower side of normal, but now I am just a few numbers off from it being a concern (my last reading was 97/56). Beta-blockers are usually what is used for migraine prevention, but my doctor said that a side effect they have is dropping blood pressure and heart rate, which makes him nervous. He did put me on a different kind of preventative medication, and I should know if it is helping in a month. It is not supposed to stop the migraines completely. It is just supposed to lower the pain down a notch and cut down how many migraines I get.
We also discussed getting a patient advocate to help navigate everything. We left the appointment and then about an hour later a manager from the office called and said that my doctor had talked in depth with her about the issues and she wanted to talk them through with us. After we talked, she asked if she could make a few calls and then call us back.
Five minutes later she called back with an appointment NEXT MONTH, on the 20th, with a neurologist at Good Samaritan Hospital in Portland. She said the neurologist said that he wants to go over everything and help find a root cause. Praise the Lord!! Thank you to everyone who prayed with me!!
I also had a great weekend! Yesterday, I went up north to a concert in Chehalis, WA with my best friend, Mercedes, to see Mac Powell and We Are Messengers. It was such a fun day and so refreshing and needed time with my friend. We have been friends since we were twelve when we met at Bible camp, the same week I gave my life to Christ. I have always been grateful for our friendship, but these last couple of years I see what a treasure it is from the Lord. She took good care of me.
The concert was amazing! There was this moment when I was standing singing songs that I listened to while I was waiting for surgery, hospital stays, and the times I could not make it out of bed or off the couch. There I stood in a crowd of believers worshiping the Lord for all He has done for me. He has been so faithful to me and steadfast in his love.
At the concert, a woman came up to me and said she felt the Holy Spirit wanted her to ask me about my health and to pray with me. It turned out that she also has a chronic neurological condition. The three of us ended up talking and praying together for two hours after the concert. It was beautiful.
We were also able to meet the lead singer of We Are Messengers, Darren Mulligan, which was amazing. We talked together for a few minutes, and I felt encouraged and hopeful afterward.
There were moments yesterday at the fair that were hard on me physically. I had a lot of nerve pain, headache, weakness, and numbness, but I was determined to have a good time and Mercedes was a great help to me. I even went on two rides which is something I did not think would happen. We spent a long-time walking lap around the rides trying to find the ones that would be gentle and less likely to trigger an episode. We went on the Ferris Wheel and a swing.
I felt it afterward, but it was not the overwhelming, sending me to the ER kind of pain. This afternoon I went for my weekly infusion and now I am going to rest and have a quiet week. God is good. His mercies are new every morning.
I know it has been a while since I have posted an update. It is still a challenge to keep up with messages and reaching out, being social, but I do read everything, and I appreciate and love all of you. It can still feel overwhelming, and I tend to need long breaks from my phone because of the headaches and nausea.
I went as a leader to the YoungLives camp recently. It was an amazing week! I did a whole lot better than I thought I would. I did have a weird “neurological episode” the last two days I was there, but I was able to get an IV infusion there with my usual meds and that helped. I came home and slept for a solid two days, but then was able to slowly start getting back to my normal routine. Which is huge progress!
The appointment with my doctor a few weeks back went well. I have been waiting for an appointment with a neurologist and have not gotten anywhere, so my doctor had the idea to refer me to a pediatric neurologist (because I am under 25) he has worked with who he thought might be a good fit. He thought that if she was not able to see me because I am out of her age range at 23, she would know who to refer me to instead.
So, it gets a little complicated but here is what happened. The neurologist I had at Legacy retired last year so I was referred to another one who also ended up leaving but he referred me to a different neurologist who I have been waiting to hear from. I got a letter in the mail this week from the second neurologist, who I already knew was leaving, telling me that he was leaving and that I need to find a new neurologist. I was confused about why I was receiving that letter if that is not who my referral went to in the first place.
My doctor called me this morning to tell me that the pediatric neurologist only sees patients under eighteen, but that the referral to the neurologist (the one I thought I was waiting on) was approved, but it was odd because it says in their system that they are waiting on me to call them.
We have been waiting on them to call us. We have called my doctor’s office several times to check on the referral and called the neurologist’s office, who told us they are not scheduling for two months and would call us.
So, we called the neurologist today and they said they are unable to schedule me because I do not have a referral. We were so confused because my doctors said the referral was approved and to call. The neurologist’s office said they could see that a referral from my doctor was placed on 7/16 at 12:45 pm but that immediately after at 12:50 pm someone in my doctor’s office wrote “do not schedule” on the referral. The neurologist’s office explained that that moved my file to a “canceled” area and so there is no current referral.
We immediately called my doctor’s office who said they could see that it was “accidentally switched” to “do not schedule” in their system. They said that my doctor needs to write me a new referral now. This is so beyond frustrating.
It is mind-boggling to think that I had brain surgery over a year ago and have only been able to see a neurologist twice. Who so causally misdiagnosed me with ALS and even then, was only able to talk about two symptoms with me.
I am lost in the healthcare system.
My doctor’s office scheduled an appointment for me with the doctor on Monday to talk through all of this and we are waiting for a manager to call about a “break in the system”.
In the meantime, I am still having headaches/migraines and a ton of neurological symptoms some of which are progressing and some new ones. The infusions have been helping, but that is not a long-term plan. My physical therapist thinks that because the infusions give me some relief, I can be a little more active and work on physical therapy exercises at home. Which helps to keep my pain and nausea down enough for me to be able to do things like physical therapy. A bright spot in all of this has been my physical therapist. She has been amazing, understanding, and caring. I am grateful for her.
Fatigue is still a big struggle for me, and I must constantly balance what I do and where I put my energy. It is hard not to feel the pressure to want to do everything and not miss out. There are so many people who seem to try to understand, but don’t really get it. They say I look well and do not get past that. There are also people who believe if I prayed more or was more something somehow that God would heal me. Amid all of this, I still know I am enough for God exactly the way I am. His love for me is not measured by my current disability. I am working on letting myself rest and knowing it is okay to take breaks. I also know that my condition is not a reflection of how much faith I have.
There are these moments where I feel this overwhelming stress and panic when I think about all the unanswered questions like, what is causing all these symptoms? Then dealing with my symptoms and all the appointments that need to happen and are not happening. Everything is a complete mess, and I am lost in the healthcare system.
Earlier today, I teared up listening to this part from We Are Messengers’ song, Close.
God, You know the the tears I’ve cried And the times I couldn’t breathe Oh, You never left my side So I rest here at Your feet
I know You’re working all things for my good In the way that only You could
Maybe the why just don’t matter What if it’s not for me to know Maybe the point is just to trust You Find the faith to let it go
Cause sometimes falling feels like flying It’s the only way I know So I won’t hurry through the heartache If it’s what it takes To draw me close To draw me close
Thank you all for hanging in there with me on this journey. Your prayers are impactful, and I am grateful for them. I feel God’s hand on me every day.
I know God has a plan for me, but I feel so overwhelmed. There are all these unknowns and unfinished pieces spinning around me that just won’t come to a rest.
It has been a while since I posted an update because I was waiting to have some more answers. We don’t know why or what is going on with my body, but my baseline is lower than it was. I am still going to physical therapy and I am getting weekly infusions, which I think has been helping. The infusions are designed to keep my head pain and nausea from escalating. They also help improve my sleep and increase my appetite, I often don’t feel hungry because of constant low level nausea.
Last month, I went to the ER because I had a weird episode. I was out with my mom and I started to get what felt like a migraine. It began with head pain, chills, nausea, and then I felt like I had gone to the eye doctor and had my eyes dilated. I was texting with a friend and started to get very confused. It felt like words were not real and I could not remember my friend’s name. I knew her name, but it didn’t feel like it was a word. My mom said that my speech was altered, and my words were breaking in the middle, kind of like broken glass. Then it progressed quickly to where I could not speak at all. The confusion and inability to talk only lasted a few minutes and most of my symptoms passed in about an hour and a half.
I went home, took some of my rescue meds and went to bed. I wanted to try and sleep it off before I went to the hospital. The ER is not always friendly, so I was trying to avoid that. I called my doctor the next day and he sent me to the ER to get an MRI and an EKG. Everything came back with normal results, and they gave me two rounds of a migraine cocktail to break the headache. It didn’t break completely but it was enough for me to go home. The ER doctor asked me if I have ever been diagnosed with Epilepsy or have a history of seizures, which has never come up before.
When I called my neurosurgeon’s office about that episode, they recommended that I be monitored for seizures. My primary care doctor agreed and said that he could order the monitoring, but that he thought it would be better to have a neurologist order it because of all the nuances. The problem is that there is a neurologist shortage and I have not been able to get in with one who understands (is comfortable treating someone with) Chiari Malformation. In the last couple of months my local neurologist retired and recommended replacement is moving The doctor he suggested is even not calling to schedule appointments for two months and they are scheduling appointments for December/January. It’s very frustrating. Much of the difficulties I’m encountering are systemic. Overwhelmed systems, lots of job shifting, and overall staffing shortages, along with an uncommon condition.
My case was up for review with the Mayo Clinic a few months ago. It was a process to collect all my MRIs and all the notes from every doctor’s appointment from the last two years. My doctor had to write a one-page letter stating why he thought I should be seen at the Mayo. It was submitted on a Friday and the following Monday I received a rejection email from the department of neurosurgery telling me to seek local medical care. The problem with that is my case was supposed to go to the neurology department not neurosurgery and I have already exhausted the specialists here.
We called Mayo and explained that I already had neurosurgery and needed to see a neurologist not a neurosurgeon. If I needed neurosurgery I would just go back to Colorado. The Mayo said they would resubmit it and that once it was reviewed, they would decide if there was another department that would be better equipped to treat me. They said they would call us in three days.
Two days ago, I received another rejection letter in the mail for neurosurgery. Which I was already suspecting because they never called back. It was so frustrating because we had been discussing with them that it was not supposed to go to neurosurgery. We called them today and explained that we were worried that the right team of people had not reviewed it because of it being sent to the wrong department. They told us that Chiari Malformation goes to neurosurgery and since I already had surgery it was not a fit. They said that once it was moved out of neurosurgery there were two neurologists that reviewed my case and denied it.
The Mayo Clinic said that I should have my doctor diagnose me with whatever he thinks is happening with me and then he writes them a new letter with his recommended treatment plan and his desired outcome. If my doctor knew what was happening with me, he would treat me here. We need help with the diagnosis.
So, we got off the phone with the Mayo Clinic and called the Barrows Neurological Institute, in Arizona. They were also recommended to me by my neurosurgeon’s office. They told us that they are a sub clinic, which means they treat conditions they do not diagnose and based on what I said I would probably need to be seen in at least six of their sub clinics. I could probably get in for the Chiari Malformation/Migraine clinic, but they would only treat that symptom. They could refer me to another one of their sub clinics, but they would not diagnose anything or look for a greater cause.
I am meeting with my doctor on Tuesday to update him and hopefully come up with a new plan. I agree that I should be monitored by a neurologist for seizure activity. We are considering reaching out to neurologists all over Oregon to try to find one. I am an established patient at OHSU, but I lost confidence with them after the neurologist there so casually misdiagnosed me with developing ALS and told me he would only discuss two of my symptoms and not an underlying cause. I am considering requesting a transfer of care and trying a new neurologist there.
Please pray with me that God will give us guidance and show us the way.
Pray for my appointment on Tuesday, for my doctor to have wisdom.
Pray that I would be able to get in with a neurologist.
Please pray for my family, this is putting so much stress on everyone, and we are all feeling weary and discouraged.
Grace to you,
And I will lead the blind in a way that they do not know, in paths that they have not known I will guide them. I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I do not forsake them.
Today I started weekly IV infusions for preventative measures against the horrible migraines I keep getting. Hopefully these infusions help. It is a migraine cocktail for pain, nausea and hydration.
This morning I got an email from the Mayo Clinic telling me that they received a request for an appointment with their neurological clinic. They gave a phone number to call so we could “proceed”. I thought that I was accepted and was calling to schedule an appointment. I felt so happy and relieved. When we called and talked with them they said that my case is still in review and that they are waiting on a one page letter from my doctor stating the reasons why he thinks I should be seen at the Mayo Clinic.
Please be praying with me. It’s very discouraging and stressful. The waiting to know what’s going to happen is so hard. I just want to know if I am going to the Mayo and I want some answers. The waiting in the unknown is hard.
Thank you all,
But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. 🤍
It is hard to believe today is the one-year anniversary of when I had brain surgery. On one hand it feels like it was only yesterday that I was in a hospital in Colorado, and on the other hand time has felt like it has slowed, and the months have drag on endlessly.
I went out to dinner with my family to celebrate how far I have come in a year! We went around the table, and everyone told a story from that day in Colorado. My parents shared how intense it was for them waiting in the waiting room for seven hours. Its funny to me because from the time I was taken into the surgical room to waking up in recovery it felt like ten minutes. When I woke up in recovery, I think that was probably one of the funniest moments of my life. I woke up because someone was talking, after a few minutes I realized it was me who was talking to a nurse sitting by my bed. Once I realized I was the one talking, I still couldn’t stop myself from talking. I have never had that in my life where you feel like you’re watching someone else speak through you. The nurse was so patient, but he also seemed a bit exasperated. I was going on and on about how my head was falling off and someone needed to do something about it. The nurse kept telling me that my head was fine, it was still attached to my body and if it did fall off, they would call the neurosurgeon to come sew it back on. I countered with the fact that the neurosurgeon lived in West Virginia (I have no idea why that state was floating in my mind) and because of that he wouldn’t be able to come. I remember I kept thinking, “why am I saying that?” and “stop talking.” Thinking back to his facial expressions I wonder how long I had been talking before I started waking up.
This past year has been the hardest year of my life. I was diagnosed with a rare neurological condition, had endless appointments and tests with different doctors and specialist, underwent brain decompression surgery, had most of C1 removed, and was misdiagnosed with ALS. It’s been surreal and a whirlwind of emotions.
Through it all though there has been countless blessings and answered prayers. I connected to the right neurosurgeon, Then I fit the criteria for surgery. Finally, I was able to go to Colorado to have the surgery because my family, friends, and people I have never met came together and helped me get there.
Currently, I go to physical therapy once a week, I am still working on strengthening my neck and overall strength and balance. Before I had surgery my symptoms were so bad, I couldn’t do much and so I became deconditioned. I am working on building up my stamina, endurance, and just overall strength.
The surgery itself was a success and did what we wanted it to! The biggest thing surgery helped was constant pressure headache that would not relent. They physically removed part of my skull and C1 to take the pressure off and make more room for my brain. That helped a lot of my symptoms and did what we wanted it to do.
When I first met with the neurosurgeon in Colorado, he discussed with me that some of my symptoms were not caused by Chiari Malformation. Which is why the previous neurosurgeon didn’t think Chiari was causing my symptoms and that surgery wouldn’t help. The neurosurgeon in CO said that these symptoms wouldn’t be helped by surgery because they were unrelated to Chiari. That is why I saw a neurologist at OHSU and was wrongly diagnosed with ALS. There is some neurological thing going on that is puzzling the doctors. The left side of my body is weaker than my right and my left hip sometimes isn’t stabilizing. I continue to have headaches/migraines, visual distortions, nerve shocks in my limbs, numbness, and I still am not sleeping well. There are a lot of other weird symptoms that shift around.
My doctor and neurosurgeon have decided to send me to the Mayo Clinic in Minnesota. They said that I have exhausted the specialists in this area (OHSU and UW) and have been trying to determine which Mayo Clinic, Harvard, Sandford, or the Cleveland Clinic to send me to. My primary care doctor suggested I reach out to all of them to see which of them thought they could help me. My neurosurgeon was able to narrow it down to the Mayo Clinic in MN. He says that would be the best place to go for a “neuromuscular disorder”. I am relieved because all the paperwork and talking to so many different places felt so overwhelming, and we hadn’t even started yet.
The next step is to meet with my doctor and then he will write the referral letter to the Mayo Clinic.
This year has been an emotional roller-coaster. There has been moments of pain and sorrow and joy and relief. There has been periods of isolation, loneliness, heartache, and anger mixed with peace and rest. I am learning to look and cling to the joy and the moments of happiness in the chaos as opposed to waiting for the storm to pass to find it. It does not always feel like a storm because I’m passed the worst of it, but it sometimes feels like I’m in a desert. I still don’t have the answers and they seem like they are just off in the distance, like a shimmering mirage that is just out of focus. Hopefully going to the Mayo Clinic will be getting closer to some of those answers.
Thank you to everyone who has helped me throughout this last year. I am so thankful for all the support I received and the love I have felt.
God bless you all,
“The steadfast love of the LORD never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness.” Lamentations 3:22-23
Yesterday, at my OHSU Neurology appointment there was a HUGE answer to prayer. The neurologist took ALS off the table! He said that theoretically I could develop ALS down the road, but that he would be shocked if that happened. Benign Fasciculation Syndrome (what they diagnosed me with there a few months ago) and ALS do overlap. but they are completely different conditions. I have gained strength and if I was developing ALS I would be weaker. We think the ALS scare happened because they were not looking at me before through the lens of someone who was only two months out from brain surgery. Also, this time many of my responses to the neuro tests were improved. Last time I saw them, I was still so weak from surgery and barely past only walking to the mailbox and back.
I’m so grateful and feel relief over that.
There are still some symptoms that do not have any answers yet, but he will know more are he reviews my upcoming brain and cervical spine MRIs. We will and go from there, the same response as my neurosurgery team. They need more information first. I don’t have reflexes in my legs. I asked the neurologist why that was, he laughed and said that was a good question.
We came up with a new rescue plan for migraines and headaches and adjusted my medication. It’s been a challenge because I struggle with multiple types of headaches. Medication will not help with Chiari headaches, but sometimes it’s hard to know what kind of headache I am having. I don’t always recognize the migraine symptoms as migraine symptoms.
Thank you everyone for praying for me. God answered our prayers yesterday. It took a bit to sink in. It was a really stressful morning. Just preparing for that appointment I was not sure what to expect. There have been so many different disappointing neurology appointments over the last several years, but I think it went well.
While I still wish I had more of an answer about some symptoms I think there is a good plan in place. We told him everything my therapists have been saying and he placed an order for a neuro-rehab at OHSU to help with the cognitive issues. We also told him how everyone in my medical team is deferring to the neurosurgeon, but that the neurosurgeon did the surgery and does not do the aftercare. He said that he would take over and manage all the ongoing neurological issues. Which was a huge relief and another answer to pray.
I also have a lot more strength than I realized. He said while I’m having some weird neurological symptoms, he’s not too concerned and that the therapists can calm down a bit and continue on with treatment. He said to assure them all that I am still healing from brain surgery and to continue with my treatment plans.
One of the therapists told me, the last time I saw her, that I was the first person she has worked with that has had this kind of surgery and C1 messed with to any extent. Most of my C1 is gone, so my neck must feel very strange to her, with such a large soft area. I’m not going to lie, that was a little unnerving. I think it’s just complicated because Chiari Malformation is not really heard of or understood that much, even in the medical community.
Thank you again for all your prayers and for walking with me through this. I am so grateful for all of you and your prayers, love and support. I am so thankful for all of you!
“Wrong will be rightwhen Aslan comes in sight, at the sound of his roar,sorrows will be no more. When he bares his teeth, winter meets its death and when he shakes his mane, we shall have spring again”
C.S. Lewis – The Lion, the Witch, and the Wardrobe
It has been six months since I had brain surgery. Sometimes it feels like it has been so much longer, other times it feels like it happened yesterday. I’m grateful for the surgery, for all the symptoms it has relived. Mainly the horrible head pain in the back of my head. The symptoms are still there, they come and go, but it’s bearable now. There are some days though, when the symptoms are bad, but I’m still in the year of healing.
There are still many sleepless nights. Last week, I had one of my worst nights since surgery. I could not get comfortable because of neck pain and just felt restless. Before surgery, I had an in-lab sleep study done. The sleep clinic determined that it took longer for me to reach the different stages of sleep and that my brain would wake itself up for no reason. I am going to do another in-lab sleep study in the coming weeks. The sleep clinic wants to make sure that I don’t have central sleep apnea, which is a risk with anyone who has had a brain infection, or their skull broken.
I’m still working with my physical therapist for my neck. I am mostly just doing a few stretches to help loosen my neck and a few sets of exercises to help strengthen my neck. Usually when I go there though, the therapist massages my neck to break up the scar tissue. Sometimes, the massages feel nice and help me relax and other times it is a little uncomfortable and I’m really sore for quite awhile. After I have physical therapy, I am supposed to just rest with no brain stimulation. That means laying down and not watching tv or reading a book, I can listen to music though, for an hour after my session. Last week, I had an x-ray done of my skull, so the therapist could see exactly what was done with C1. You can see the titanium plate that was put over my dura after they sealed it with some of my scalp tissue. That x-ray was taken with my mouth open, looking through my throat.
I have also started swim therapy in the pool. I mostly just walk laps around the pool and then do a few exercises, like squats or leaning against the wall and pushing a small weight around underwater. The physical therapist, who is helping me with the swim therapy, has identified some spatial awareness issues and some balance problems. For example, I don’t always know where my arms and legs are in the pool. She had me stand on one leg, which I thought I did fine for someone who had brain surgery. Then she had me stand on one leg again, only this time counting backwards from twenty. I could feel myself swaying a little bit more and I had a harder time saying the numbers. I knew what the number was, it was just harder to grasp. The therapist explained that there was a very noticeable difference and that what was happening was my brain was getting overwhelmed and switched its focus from balancing to counting. It let go of its awareness of itself to concentrate on the numbers. She used the analogy of walking and chewing gum. I can walk and I can chew gum, but I can’t walk and chew gum and the same time. My brain gets overstimulated. The therapist both think that because I was deconditioned before surgery, I am having a harder time now. I feel so weak sometimes.
I did not know that pool noodles could be used for anything other than hitting your siblings!
I spend a lot of time walking laps around the pool. Forward walking, side stepping, and backwards. Afterwards, I am ready to nap for days!
The pool therapist recommended that I meet with a neuro therapist to help me with the balance issues, spatial awareness, overstimulation, postural awareness (my brain does not know how to hold my body), and other neurological symptoms. The only neuro-therapist is at OHSU, so we are going to discuss it at my next appointment with them tomorrow.
OSHU Neurology: Tomorrow’s appointment is my three month follow up, although it took four months to get the appointment, with the neurologist. I am not really looking forward to that appointment. I’m actually dreading it. The last OHSU appointment was a hard blow. After coming home from my very positive, two-month surgery follow up, with the Neurosurgery team in Colorado, OHSU had a whole different take on my health. They are concerned I may develop ALS. They diagnosed me with Benign Fasciculations Syndrome. The neurologist said that it could just stay Benign Fasciculation Syndrome or rapidly progress to ALS. It’s hard to be working so hard with physical therapy and then just have that burden thrusted on top of everything. Sometimes it feels like a weight pulling me down, a mental block.
There are moments where it all feels so overwhelming. I cannot really imagine what my future looks like beyond where I am at right now. There are still so many sleepless nights, deep fatigue, neck pain, and so many unanswered symptoms.
I am having new symptoms which I didn’t have before surgery. My primary care doctor, physical therapist, and neurologist all recommended that I call the neurosurgeon and get some feedback on where I should be and what I should be expecting at this stage of healing. We spoke with them today, they said they don’t think my symptoms are neurosurgical, they think they are more neurological. So, not caused by Chiari Malformation, but something more neurological. We decided the next step would be to have a brain MRI-with and without contrast, along with a cervical spine MRI-with and without contrast. Once we get the MRIs back, we will regroup and go from there.
Please pray for this appointment with the neurologist at OHSU tomorrow. That God would give the neurologist wisdom and insight. That there would be answers. Pray also for me as I continue to go forward with the recovery. I am tired of all these appointments and unanswered questions that continue to hang over me. It is still so hard and discouraging at times, my heart feels heavy, and I feel weary.
There are days where I’ve had enough. Enough with the pain.
Enough with the symptoms.
Enough with the fatigue and sleepless nights.
Enough with doctors’ appointments and physical therapy.
Enough with always feeling sick and worn out.
Sometimes, I think about the life I had and the life I want compared to where I am, and I feel so much despair. I am so far from where I want to be, from where I thought I would be. My mind will drift sometimes to a bunch of “if only” and “what ifs” and I ask the question, why? Why did was this diagnosis not caught sooner? Why did it have to happen when it did? Why is it still happening?
Well, I don’t know. What I do know is that I don’t need to have it all figured out and everything right for God to love me. I don’t need to have my life all “perfect” for God to use me where I am. There is not a checklist of accomplishments and requirements of where I need to be in life. I long for better days to come, but I am enough for God where I am right now. Taking one day at a time, trusting God and walking with Him through this valley and resting by still waters.
“The Lord is my Shepherd; I shall not want. He makes me to lie down in green pastures; He leads me besides the still waters. He restores my soul.”
– Psalm 23:1-3
My Chiari Bear doesn’t have a name yet. Any suggestions???
Than you all, again, for your continued prayers and support.
Last month, I had my two month follow up in Colorado, with the neurosurgeon. I had another MRI and then met with the neurosurgeon to review where I was at in my recovery. The neurosurgeon said the MRI looked really good and that my healing was ahead of where he thought I would be in my recovery. He said that it will still be a full year until I am fully recovered, but that I am headed in the right direction.
The surgery did exactly what we wanted, it was a success!! I am so thankful for all the people praying and supporting me throughout this journey and everyone that helped make it happen! God has clearly had His hand on me and was working in the details.
A week after I returned from the appointment, I had a neurology appointment at OHSU.
Originally that appointment was to rule out MS, but since I made that appointment, six months ago, I was directed to CO and had the surgery. We decided to keep that appointment because the neurosurgeon said that he thought I was having migraines with the Chiari headaches. The neurosurgeon also believes that some of my symptoms are not caused by Chiari. So, I went to OHSU to become an established patient and to discuss migraines.
My mom and I spent two hours going over all my neurological symptoms that don’t fit with Chiari. The neurologist asked a ton of questions and did some test and then brought another doctor into the room, who redid the same tests and some more followed by more questions. The tests showed that I don’t have any reflexes, which we already knew and is one of the symptoms not caused by Chiari. I have no tickle reflexes in my feet and weakness in my arms, legs, grip, feet, and significantly more on the right side of my body. I showed videos on my phone that I took of muscle spasms that I have been having for a year now. They went through all my videos and asked questions.
After having a discussion in the hall they came in and said they agree that some of the symptoms I am having are completely outside of Chiari. For example, the loss of reflexes, if it was caused by Chiari they would be hyper reflexes, not absent.
OHSU diagnosed me with “Benign Fasciculation Syndrome”. Which is persistent muscle twitching, tingling, or numbness in muscles. They made it very clear to me that it could just stay that and be that forever. They also laid out for me that it could progress into ALS. They said they want to see me every three months to monitor the diagnosis. They said I need to monitor my symptoms and if anything changes or I have any new symptoms I need to let them know immediately, because it could rapidly change.
It was shocking and scary. I met with my primary care doctor after that appointment to review everything with him. My primary care said if they were really that concerned then they probably would’ve done a nerve conductivity test in that appointment instead of waiting three months for my next appointment.
Another thing is: while there are still symptoms that are not caused by Chiari, I’m also still recovering from brain surgery, so that could be causing the weakness. My neurosurgery team also said they have never had a patient with Chiari and ALS.
In the meantime, the plan is for me to continue physical therapy and add in occupational therapy and swim therapy. My doctor said if there is a neuromuscular disorder the best thing to do is build up muscle.
I’m still struggling a lot with fatigue and Neuro fatigue. After I do physical therapy, I lay in a dark room with no visual stimulation for an hour. At first I was really annoyed that I have to do this, but now I’m grateful for the rest. The physical therapy feels like a full time job, it is hard and exhausting. I feel frustrated at how weak I feel afterwards.
It was hard to receive such great news from the neurosurgeon and then have it stomped out by this recent diagnosis. I keep needing to remind myself of how far God’s already brought me. Honestly, I just felt so defeated after that appointment and I’m still struggling with that feeling.
Please continue to pray for me and my family as I continue to navigate these rough waters and pray for some wisdom for the doctors. God had already brought me so far and I know He will continue to guide me through whatever comes.
It is hard to believe it has already been almost two months since I had brain decompression surgery.
A few weeks ago I started physical therapy for my neck, it’s still super stiff and sore. I still cannot move my head up or down. I will not be cleared for that motion until I meet with the neurosurgeon in CO next week. My mom and I are leaving on Monday for my eight week follow up.
I have come a long way. Still a long way to go until I am a hundred percent, but I’m grateful for the progress I have already made. My hair has grown back in so much that you cannot really even see the bottom incision. There is a small part of the incision on the very top of my neck you can see, if you look closely. There is a larger bald spot where the top incision is, the part where they “harvested” the muscle tissue.
At the hospital they told me not to feel discouraged with physical therapy, because I would not be doing much. The exercises I am doing is just moving my head to the side and then to look straight ahead again, and then repeat with the other side going back and forth for a few times. Then I tilt my head slowly to the side and then hold it straight again. I am working on doing them a few times a day. I am also working on walking short walks around the neighborhood.
I had a conversation with the Chiari Institute last week because of the high level of pain I was having. I am still having some incision pain and a super stiff neck that is sore. The Chiari Institute thought the physical therapy was moving too fast and that I was doing too much, so we slowed that down. Even though I was just going for car rides and puttering around the house, they said that was using up a lot of my energy. They told me to keep in mind that I am recovering from major surgery and that the healing is slow. Another thing we talked about is now because of the symptoms I was having before surgery; I was not very active. That is coming into play now as I have been “deconditioned”, so I am having to slowly get reconditioned.
I have been having some of the weird symptoms I was having before surgery, but I think that is to be expected while I continue to heal. They are unsettling to me and I am eager for them to stop. It is hard sometimes to not feel discouraged with how my body feels and the healing that stills needs to happen. I have to take my thoughts captive and remember that it will take a while for healing and not to rush it. The neurosurgeon said it would be a full year to recover. I need to have patience and hold on to hope for this next year.
Last weekend we went to Spokane to help move Genna home for the summer. I was only able to see a few people while we were there, but it felt so good to be out and see people who are so encouraging to me. I am so appreciative of the friends and family that have reached out to support me. This is a lonely season; I miss seeing my friends and family.