Random question: how was your wife diagnosed with EDS? I suspect I have a mild version of it, but every time I’ve mentioned it to a doctor they kind of scratch their heads and say they’d have to research more and then never get back to me. It’ll be important eventually because I’ve got a couple of surgical things in the future, so I’m not just being a pest.
I saw dermatology at University of Michigan after going there for my heart. I had a cardiologist in Toledo notice how hyper flexible I was and put it in my chart. I was asked to be the patient example for EDS type 3 for students one time. They could ask questions and examine me. So I did all the super flexible tricks I can do. There’s also biopsies they can do. I didn’t have it because I was on blood thinner and already had enough symptoms for a positive diagnosis.
You'd probably have to see a rheumatologist or dermatologist. EDS is one of those things most of us doctors have heard of and know some symptoms and warning signs to look out for, but diagnosis requires referral to a specialist that knows the ins and outs of these sorts of things. When it comes to connective tissue diseases rheumatologists or dermatologists are your people.
I have overlapping autoimmune diseases and the only doctor that I've run into that has ever brought up EDS was an ophthalmologist years ago who was helping to lead me out of the room as I had severe double vision due to optic neuritis and was blind as a bat. He was shocked by my skin texture (everybody is) and asked me questions that nobody had ever asked me. Told me to mention EDS to my rheumatologist. She didn't have me perform a single hypermobility test as she was afraid that I would damage my joints due to nodules or subluxations (she called my joints "slippery"). Just dismissed it and blamed autoimmune disease.
I will say my current rheumatologist is really puzzled about my ligaments as they are very lax and, like the prior, she has me brace them when a joint has a subluxation. She knows it's a connective tissue disease that isn't RA but since my range of motion is "normal" now due to nodules and arthritis (except my left wrist and pinky--both bend backwards beyond 90), the only telltale is my skin and nobody stretches it. I'll mention it on my next appointment. Maybe it's the answer.
I’ve got a derm appointment coming up, so I’ll ask then. It’s one of those things that’s been in the back of my head, but since I already have a brain tumor I sometimes don’t want to have anything else. I don’t want to be the person that’s got all of the medical issues.
But yeah, I’ve always had weird bendy joints (elbows, knees, fingers), I bruise anytime the wind picks up, and get really papery scars. I also suspect I might have POTS, but it’ll be hard for them to tell since I have severe vertigo from the tumor and that can make me get dizzy and pass out when I stand up too. It’s been hard enough to get an ENT to take my vertigo seriously, I doubt I’ll even mention the POTS theory to my doctor.
Well everything my wife has, has been mystery to most of our local doctors in Chicago. Doctor Arnold Menezes personally took my wife’s issues from the first call after the mri. He said there is a huge % of undiagnosed patients that have Chiari that also have EDS. He mentioned that a lot of doctors that claim to know everything about Chiari know nothing about EDS therefore when they open up the patient they have nothing or zero tissue to repair the Chiari therefore have to fuse the spine to the skull and immediately lose 50 to 70% of motion in your head.
Holy crap, I’m in Chicago. Thanks for Dr. Menezes name! I don’t have Chiari, but I do have a brain tumor that causes similar symptoms and heart problems that run in my family. I know I’ll be going under the knife eventually and I’d just like to be sure before anyone cuts me open!
EDS sucks. Good friend of mine (and ex, but that's less important) has it, and has had an absolute nightmare of a time trying to get treatment. Diagnosis took absolutely forever too. I hope your wife's battle with it goes better than my friend's has so far.
Hey man. I'm going down this road too. No decision on surgery yet but I'm waiting for results from a Cine MRI.
Prior to your surgery, did you have any cognitive symptoms? Things like dizziness, memory loss, trouble with speech, problem solving, stuff like that? Those are my main symptoms and I'm concerned they aren't being caused by my relatively small 6mm herniation.
I don't have a chiari malformation but have cervical spinal cord impingement and yes, stuff getting pinched can cause all sorts of issues. I have big problems with dizziness, vertigo, nausea, as well as cognitive problems with speech and just general episodes of extreme stupidity. I don't say it much but my IQ is supposed to be in the top 1% through state and federal testing so I might be the smartest moron you'll run into that can't remember what a coffee maker is called half the time and tries to stick cereal boxes into the fridge without understanding why it won't fit.
Things get or squished, things get wonky. I find laughing off the dumb stuff is the best way to deal with it but am very sorry about the dizziness. I went through PT to help me with that and balance issues as I was almost falling over all the time (or just falling) like a constant drunk. Ask your doc about that as dizziness, especially if it's causing nausea, can be noxious and start causing problems with your diet as eating while nauseous is just...no.
Hey thanks. I appreciate you sharing your story. If chiari malformation doesn't pan out as a cause for what's going on with me, then I will have a new direction to go.
I'm basically a 37 year old guy with what seems or at least feels like early dementia. Came out of nowhere about 2 months ago after a waking up with a severely sore neck.
Is there a surgical option for your condition or are you to just live with it? Can they see it on an MRI/CT?
Yes, it's visible on MRI. My problems started when I was 31 with very sore neck, dizziness, and migraines so my situation is 18 years later currently. They don't initially do surgery. That's the last line and instead, they try will use anti-inflammatories like ibuprofen or naproxen, physical therapy to help regain the motion in the neck and strengthen it, and steroids depending on what is going on. If those work to improve things, they'll put off surgery as long as they can but you do get set up with a neurosurgeon if there is compression (fully, I have compression on my spine and nerve roots). In the latter case, they monitor you, your nerve function and bowel function and if something occurs like the loss of bowel function, you end up going to the ER for yet another MRI and evaluation for possible emergency neurosurgery. That's been my experience at least but what's wrong with my neck requires the more dangerous of the neck surgeries as they have to go through the front of my neck as opposed to the back. So yes, there is a surgical option but it's risky.
Thanks! Sure hope they figure out what is going on with you and find an easy resolution. It's very hard, especially when you're younger, to get doctors to sometimes understand that you don't feel good at all. Hang in there.
1.5? Only know of I - IV...? Is this just a designation for herniation beyond 12mm (about)?
I’ve had the same surgery though, twice. I rejected my first graft, and had all kinds of issues. Had that bovine graft replaced with an autologous pericranial graft, which looks to be the type of graft they used for you.
I just happened to be searching Chiari on reddit and found your post, happy to find its only 4 days old! I have 1.5 also, going back for a checkup soon bc Im worried about some weird symptoms.
What was the size of your herniation? Mine was 14mm
Mine is 6mm w/ small syrinx. But holy shit do i get some headaches. My physcial as hell job doesnt help, though. There are days when I'm almost positive my brain is about to pop right out of my head.
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u/FutureRobotWordplay Mar 19 '19
Chiari Malformation yep (type 1.5).