Hey everyone! I haven’t written a health update in a while (here’s the last one) because I didn’t have any news to share.
I know I have a lot of messages I haven’t responded to. I’ll get to those as soon as I feel up to it, but know that I see and read your messages and I appreciate them.
Every time I sat down to write about my health, whether it was a post or a message, it came out angry and unlike me. The frustration was so great with making no progress that I couldn’t even talk about it.
The pain in my head, neck and ear was so excruciating that it was hard for me to think of anything else. I can normally write at least 10,000 words in a day and I have been lucky to write 500-1000 lately. The pain was that crippling.
I have been taking a Percocet every other day to get a short reprieve from the pain. I normally don’t even take ibuprofen, so you know the pain has to be intense for me to take narcotic pain killers.
Last week Brian gave me a deep tissue neck massage and it alleviated my headache for a short time, so we decided to go see the chiropractor that helped Brian with his neck injury last year to get his input.
The Chiropractor had a lot to add to the conversation about my health.
After evaluating me, he diagnosed my head pain as a Cervicogenic Headache. It’s essentially a headache that hurts every bit as much as a migraine, but it originates in your neck rather than your brain.
It’s caused by a pinched suboccipital nerve in my neck. He said my vertebra were moved out of place. I actually think the lump on the left side of my neck was part of this misalignment because it’s gone.
He adjusted my neck and moved everything back in place. I had instant relief. He let me know it probably wouldn’t stay because of the muscle weakness and the muscles contracting from the atrophy. My muscles need to gain strength to hold my joints in place.
The adjustment kept the pain away for a couple hours, and it has slowly crept back. It hasn’t gotten nearly as intense as it was, so I do believe we’ve found the answer to my head, neck and ear pain!
Losing the intense neck, head and ear pain has made me realize just how sore the rest of my body is. The pain was so intense that it was masking the muscle pain I have in my legs and arms. I had no idea my arms even hurt until he adjusted me!
I have a follow up appointment with him again on Wednesday.
What caused the Cervicogenic Headache?
The Chiropractor says the Cervicogenic Headache was caused by the rapid weight loss and muscle atrophy.
I’ve lost so much muscle that my neck muscles can’t hold everything in place. They’re spasming and contracting, which has caused my vertebrae to slip around and pinch my suboccipital nerve.
The Chiropractor said that working on me was like working on a 12-year old. That’s how much muscle mass I’ve lost. My body fat percentage is down to around 5% so I only have muscle to lose.
We also talked about my difficulty breathing. I have become a total mouth breather. I have breathed exclusively through my nose since I had braces as a teen – yes I was that vain – so this is a big change. I never feel like I can get enough air even though I have good oxygen saturation.
He said that is also due to muscle atrophy. The muscles around my ribs are so wasted that they have trouble expanding in and out and are not strong enough for me to take an entire breath through my nose.
I breathe very shallowly and have a higher than normal respiration rate because of it. That’s super concerning to think that my breathing could continue to decline if we can’t stop the muscle loss.
The other startling thing he talked to us about was about my BMI. I’m 5′ 6.5″ and weigh about 108 pounds. My BMI is hovering just over 17 at 17.2-17.4.
He told us that when my BMI drops under 17, I am at an increased risk of having multiple organs shut down because I’m not in shape. My weight loss isn’t because I’m training to be an athlete.
My BMI dropped all the way down to barely over 16 when I was in the hospital before climbing back up over 17 over the last few weeks. I’ve lost more than a third of my body weight this year.
We knew that getting a ton of calories in me was important, and this talk reinforced that. I was eating around 5,000 calories a day until about 4 days ago. Then I took a few days where I went down to 2,500-3,000 calories because that much food was making me really nauseous. We’re working back up to closer to 4,000-5,000 again. I eat twice as much as Brian does.
I eat so much food and and drink so many protein shakes it’s crazy. I’m under advisement from the doctor to increase my protein intake as my kidneys are functioning extremely well and they can handle it.
So what does this all mean?
It means that my thyroid isn’t the source of the head pain, and I don’t have to have it removed for that reason. That is huge news there.
I really didn’t want to have a partial thyroidectomy only to find out it wasn’t the cause of the pain. And that’s exactly what could have happened if this was missed.
The other positive of this visit is that we now have direction for physical therapy. Based on his evaluation, the Chiropractor recommends only passive treatment for me right now. All of my muscles are super tense because of the atrophy, so getting them loosened up may help with the pain? We hope so. I start physical therapy this week.
So now the focus is completely back on finding out what is causing the weight loss and why I’m eating so much and not absorbing any of it. We’re heavily focused on GI right now.
What’s up with the GI specialist?
I’ve been on the GI waiting list since June. I called to follow up last week and was told that I’ll probably be able to get an appointment in January. They just don’t have the calendar yet. That’s three months from now and seven months from when I got the referral.
I completely lost it on the phone. Total meltdown. Crying and all.
I had to hang up and email my doctor. I think she got how dire I was feeling because I got a call from her office manager after some back and forth. Her office manager got to experience some of my crying too.
She told me on Friday that GI is reviewing my file and is going to double book me on the calendar. She should have an appointment scheduled for me by Tuesday.
I’m hoping that double booking me means that they’re fitting me in ASAP even though they don’t have appointments until January. I’m really hoping that it’ll be in the next couple weeks.
I’m so grateful that it looks like GI is moving forward. However, I’m frustrated that it had to come to me literally throwing temper tantrums on the phone and over email to make it happen.
My Doctor is Going on Maternity Leave
To top all of this off, my doctor is going on maternity leave in a couple weeks, so we needed to figure out a new primary care doctor that could keep all of this moving forward.
We decided to go see Brian’s primary for another opinion (5th? 6th?) since he already knows more about our family than any other doctor and we need someone that can hit the ground running.
Another factor in seeking an opinion specifically from Brian’s doctor is that we’re coming up against medical misogyny big time.
We decided going with a doctor that already trusts my husband would be the best. It’s sad that I need him there to back me up, but we’re finding it’s critical to me being taken seriously.
Having him there seems to mitigate some of the accusations of anorexia and drug use or insinuations that it’s all in my head.
And we’re realizing that Brian literally has to tell doctors right up front that it’s not all in my head to stop them from going there. It’s nuts.
So we saw Brian’s doctor on Saturday and went over everything with him. He reviewed my entire file of tests and symptoms for about an hour before coming into the room, then sat with us for an hour going over everything.
We talked in depth about Lyme, and given the timing (I started losing weight before the snow was gone) and the new information we have about the source of my head pain, we decided it’s not likely that we’re looking at Lyme, so we’re putting that to the side for now.
He ordered some food allergy tests to make sure I haven’t developed any new food allergies that could be complicating my digestion. We’re also checking my Vitamin D level and getting me caught up on my Pap.
We also discussed how my digestion improved when I was on antibiotics when we thought I had an ear infection, then declined again when the course was finished.
The doctor brought up something as a possibility that Brian and I had just been talking about from doing our own research – SIBO (small intestinal bacterial overgrowth).
He said that I did have a gut alteration last year when I had my gallbladder removed, and sometimes that can trigger SIBO.
The way to test for SIBO is by biopsy or breath test. More than likely they will want to do a biopsy when I see GI. Either way the treatment is antibiotics and herbal therapy.
He prescribed Augmentin. If I see an improvement on that, then we’re probably looking at an issue with SIBO. If that’s the case, I’ll need stronger antibiotics to combat it. If the weight loss can be stopped with antibiotics, that would be amazing.
My insurance won’t cover the antibiotics I will need if I have SIBO, but this doctor said he would argue my case to get it covered. Not once has another doctor offered to do that, so I think going to see him was a good decision.
He didn’t want to talk to us yet about any other possibilities because we’re at the point where it’s either something easy with my gut or it’s something very serious and hard to treat. Whatever it is, I just want to know what it is so we can make a plan and move forward.
What are the Next Steps?
We’re treating for SIBO, then we’ll see GI as soon as I can get an appointment and see what they have to say. I may be in for an endoscopy and colonoscopy with biopsies, but we won’t know until we see them.
I’m continuing with chiropractic care to manage the issue causing the Cervicogenic Headaches. And my first appointment with physical therapy is this week.
I have a dentist appointment this week to continue fixing the mess in my mouth from the overlooked tooth infection. I’m going to talk to her about taking out my other two wisdom teeth just in case they’re an issue.
I also have an endocrinology appointment next week. After we got most of the records we ordered, we found out my right side thyroid biopsy was inconclusive. Most likely I’ll be having my thyroid biopsied again.
I am also worried about osteoporosis at this point because of the degeneration of my neck and other joints – and all of the women in my family have osteoporosis. So I will ask the endocrinologist about that.
I also want to talk to them to see if this could be a residual hormone production or utilization problem from having acute pancreatitis last year. I want to make sure we’re covering all bases so that we get answers as soon as possible.
I am willing to talk to any and every doctor that might have input to get us some answers or rule things out. Every bit of info we get moves us one step closer to a diagnosis and a treatment plan. I finally feel like we’re moving forward again.
So that was a lot of information, right? We got it all in the last few days and I’m hoping that information keeps coming quickly. Either Brian or I will be sure to keep you updated as we know more.
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Chrystal’s Symptoms & Test Results