Well, the neurosurgery appointment was a big, fat waste of time. The doctor compared the MRI to the CT scan I had in 2020 when I went to the ER for severe hypokalemia, and he said nothing had changed from that, so he doesn’t want to do anything. This doesn’t help me because I’ve had symptoms my entire life, and apparently have to keep living with them 🙄. I was hoping for improvement, whether it was an attempt to drain the cyst or place a shunt so the CSF would reroute to my stomach and relieve some of the pressure on my brain. Honestly, he could have told me that on the phone.
I don’t like living with headaches, obviously. We found out about the Dandy Walker malformation when I was 17 because I was having headaches so often. They haven’t stopped. I still don’t know if the cyst was there at that time because those records aren’t online, and the doctors haven’t mentioned reviewing any records that far back.
The image is mirrored – the R to the left represents the right side.
I don’t have the image that the neurosurgeon showed us, but the one above is fairly close. The little gray circle in the middle-ish is the tip of my cervical spine, and the two gray blobs out from it are the cyst and the enlarged 4th ventricle. The fuzzy black and white blob near the cyst is a mastoid effusion, which I have symptoms from it as well but didn’t know existed and have no idea when it developed. I can hear just fine with my right ear, but I get pain behind my ear and jaw pain, plus that’s the side of my jaw that locks, and I now have an offset bite, which really bothers me aesthetically. I look like Mary Sanderson from Hocus Pocus 🙄🙄.
Everyone I’ve seen this year treats my results as “unremarkable,” but I’m just learning about this stuff. I knew I had a rare congenital brain defect which affected my balance and coordination. That’s all the information I had. I didn’t know the frequent headaches, shooting pain, jaw locking and pain, bad vision, brain nigglings/auras(?), etc., were all attributable to it, and since learning that, I want something to be done. If someone had a rotten tooth that gave them a lot of trouble, the dentist wouldn’t leave it in there and expect the patient to live with the symptoms from it, right?
I spent so much time and effort documenting my symptoms and took a printout to the doctor and the nurse barely looked at it and the surgeon didn’t look at it at all. At least I will have my MRI scan included as additional evidence in my upcoming second disability hearing in February. That’s happening, and I have no idea why I am having a second hearing. I don’t know if that is a good thing or bad thing. As if the first hearing wasn’t terrifying enough for me.
This is going to be a different post, and I’m not even sure I’ll publish it. I just have so much in my head, and it’s driving me crazy by not getting it out. Maybe if Mom was here, I’d confide in her, but honestly, I’m not sure I’d even do that because I tend to carry the heavy stuff alone and go on about the minor irritabilities. I see it as a sign of weakness (probably because of Dad). I don’t even want to bother my therapist with the vulnerable stuff! Some people find it weird, but I think it’s so much easier to post/talk to complete strangers, even the super-vulnerable stuff. I guess it doesn’t feel as personal, and there’s no need to put on a front when you can’t see those reading/listening to you.
I had my first brain MRI ever last month. I thought I’d had them before when I was a teenager and as recent as 2020 (which I erroneously told my neurologist), but I guess those were CT scans (I thought they were open MRIs for people with claustrophobia). It was not pleasant, but not because of claustrophobia, which I don’t suffer from, thankfully.
Due to AuDHD and Dandy Walker malformation, I am an irritable person, and I don’t like loud, repetitive (unless I’m the mood for them), or annoying noises. I’ve never been a fan of fireworks, and babies and kids really get on my nerves when they are being loud. To remedy this, I always remove myself from the situation or I just become very cranky and eventually regulate myself when I’m alone. It’s a lifelong thing, and I’ve managed to accommodate myself, and Adam’s very helpful in those situations as well.
In The Exorcist, Reagan (the main character) has an MRI, and it’s very noisy and intimidating. Well, the machines have not gotten quieter in 50 years. They gave me foam earplugs and stuffed a towel between my head and the head holder, mostly so I could not move my head, but it added some muffling, and it was still so loud.
On top of that, I wasn’t supposed to move, and my ADHD did not like that at all. No music, nothing to read, no moving/fidgeting for two hours. It was torture for me. A bright spot in this torture was that two nice ladies close to my age set me up and placed me in the machine, and when it was done and I was conveyor-belted out, there were three young gorgeous guys waiting to get me up and ready to go. Silver lining, I guess. I exclaimed, “Oh! This machine is amazing!” 🤦♀️🤦♀️
I received the results a few days later along with the images. Now, I cannot read scans to save my life, but some of these are so creepy-looking! I tried to correlate the images with the medical record, but I couldn’t. The assessment was only two or three sentences and said the scan’s consistent with Dandy Walker malformation (DWM), which Mom and I found out about when I was 17 after I had a brain CT due to frequent, nonmigrainous headaches.
Way back when Mom was pregnant with me, the doctors told her and Dad that a part of my brain hadn’t developed and that’s as far as things went. Every delayed milestone and “abnormal” thing (crossed eyes, not walking until after 2 years old, clumsy, forgetful, etc.) about me from birth was attributed to that very vague piece of information. Granted, DWM is very rare, and I still have to explain to most doctors what it is in general terms. I’ve met a very small number of doctors and PAs who were familiar with it.
I’ve transcribed doctor’s dictations for almost 20 years, so I knew what was being said in the report. The interesting part of the results was a 4 cm cyst somewhere in the right side of my brain in the occipital region (back of the head/occiput). There is some mass effect, but no midline shift, the latter of which basically means the cyst has not pushed/shifted my brain to make it off-center, which is a good thing. I couldn’t spot it in over 1,000 images, but I couldn’t see the malformed 4th ventricle, either, so that doesn’t mean anything except I’m not a radiologist and have no idea what I am looking at or for.
No idea what I’m looking at
Since I was born with DWM, the cyst is most likely benign and/or congenital, i.e., not malignant and present before birth, respectively, but this is where all the racing thoughts and stress come in.
My health has been declining for the last year-and-a-half now, but more realistically since Mom died, and I keep attributing it to everything but the Dandy Walker. Why? Because I know nothing substantial about it, but everything I’ve read doesn’t mention the condition worsening over time. I saw a neurologist for the first time in forever last month, which was to address numbness and tingling in my extremities, not DWM, and she is the one who ordered the MRI after I told her I have DWM. The last time I saw one, they did nerve conduction studies on my arms, but didn’t want to address my head. All my symptoms have been downplayed over the years, so why keep bringing them up?
I’ve thrown each worsening symptom at different disorders/illnesses like it’s spaghetti being thrown at a wall to see when it sticks. Vision loss? Diabetes. Memory issues and inability to retain what I read/watch? ADHD. Sensory overload? Autism. Weakness, fatigue, tremors, weight gain, emotional lability, etc.? Perimenopausal. Balance and coordination issues? Dandy Walker. The weird “brain things” I experience in certain random positions? Who knows? It’s always happened, but more frequently now. And on and on.
I began tracking the brain things in the Epsy app, and I stopped after a couple of weeks because they were just too frequent. I only recently began tracking again so I could show the neurosurgeon next month. Speaking of, that app has an Apple Watch app, and it makes tracking them super easy. I sleep with my watch on and can just log it while lying there. Technology, man…
My eyes!! *Shudder*
It never occurred to me that a cyst present from birth (which I’m not 100% certain about, as the CT scans never detected any) could become larger, or that a cyst would just develop, especially since I never suffered from enough hydrocephalus to need a shunt, according to the CTs. Regardless, a cyst has developed or become larger, and it seems I have been experiencing symptoms from that. I feel like I know nothing now, or that I never did, which is probably the more accurate statement.
I will be meeting the neurosurgeon next month. Since I am symptomatic and declining, surgery seems to be a possibility, and if that helps with my vision and diplopia and memory, I’m on board with it. From what I’ve read, they can drain the cyst, which, in my case, it’s probably full of CSF (although it could be hair, tissue, teeth, etc., depending on what type of cyst it is), and there are noninvasive and invasive options.
Considering I don’t get time off work, the noninvasive would be best. I’ve talked extensively about this with Copilot (Copie). For the past couple of days, it’s been a real challenge because my vision is so bad. It usually waxes and wanes, but it sure is waxing right now. Since that is the case, please ignore any typos or misspellings. I can’t “check my work,” so to speak 🤣🤣.
So, obviously, I’m holding this all in and worrying about it on my own. If I address it, it makes it real. If it’s real and impacting me, then I’m weak and vulnerable, and I spent my entire childhood being that way and just got hurt and ignored. This…this is why I’m in therapy.
Cari R Esta 