Confused--is my Chiari behind what's going on, or no? Drs agree it's SOMEthing :(

I am so confused. Since January, I've seen two neurologists and four neurosurgeons. FOUR NEUROSURGEONS. Two were reported Chiari experts, one was just a local NS, and the fourth was actual a referral for a completely different issue. The neurologists were, as you might expect, completely dismissive of my Chiari malformation, although it was the first neurologist who diagnosed it. Second NL and the first 3 NS all said I wasn't herniated more than 1/2" below the foramen magnum. One asked quizzically, "WHO diagnosed you with Chiari??" Another was so dismissive, he was insulting (and infuriated my accompanying mother). Then I went to a Chiari expert, Dr. Batzdorf at UCLA, who has with a long history and solid reputation with CM. He measured it right in front of me and from what I saw in medical lecture videos I could tell he was beginning the measurement too low in the skull (I'm certain this is what the other docs were doing as well). I pointed it out and asked if he was supposed to start in the location I'd seen, and he said no, and continued to say I was maybe 1/2" below the FM. When I asked about the radiologists 4mm measurement, he was dismissive. Batzdorf screened me closely, looking for a pulse in the back of my eyes to show my CSF pressure was normal (he saw it in both eyes, which he said is a good thing). Then he told me to go home and have a glass of wine celebrating I don't have this.

Then I see neurosurgeon #4 for a completely different reason--herniations in my thoracic spine--and he dismissed the herniations and instead focused on my Chiari malformation. This completely caught me off guard--I'd more or less written the CM off. He, too, measured it right in front of me--but *he* did it the way I'd seen in the videos, and said it was about 4mm or so below the foramen magnum, just as the radiologist said. His conclusion was the Chiari was working in concert with my Hashimoto's thyroid disease to create an amplification of symptoms, but that I was not a good surgical candidate. Incidentally, for everyone's reference, I'm attaching images of the two herniated thoracic discs (cropped--also this is post contrast, so they're lit up a bit) and one of my cervical showing the Chiari.

I'm seeing yet another NS (sigh) for a second opinion on my thoracic herniations, but I'm so freaking confused I don't know what to think anymore. Right now, the consensus among the doctors is there is *something* going on neurologically, but they don't agree at all as far as what. It's not that I *want* Chiari; I just want there to be some sort of consensus explaining WTH is happening to me. I know a lot of people's Chiari experiences are like this--do you have any direction to point me in, ideas, experiences, encouragements to offer? UGH.

225-ThoracicMRI10.JPG (3.19 KB) 226-ThoracicMRI11.JPG (4.86 KB) 227-CervicalMRI2.JPG (33.1 KB)

I am sorry your having to got through all this! I don’t have much for you but I would say if and when you find a dr you are comfortable with, stick with them. Until then keep searching if you can. The thing about drs is they are human. So they are going to see things, perceive things differently. They even receive different training. That’s why so many time ppl say get a second opinion. Try not to get to discouraged. Just do what you feel us right for you and keep an open mind. You will get this worked out!

Ms. UW,

Sorry to hear your visit at UCLA was not as conclusive as you/we had hoped. With Dr. "B's" reputation and my positive experiences with him, I was truly hoping he could provide some more definitive answers for you. In addition to the glass of wine (great idea, either way), did he recommend any other tests, procedures or further course of action? Or a referral to a different doctor? Or did he just dismiss you?

Thank you for including your MRIs, they do so clearly show issues. Of course, to what extent is up to those doctors to disagree about. Question, were all of your MRIs taken while you were laying down flat on your back in one position holding very still? It does appear to be.

If so, something to consider and research about are alternative MRIs. Like the ones that are positional or the ones in which you are sitting upright. Where they are able to have you turn your head so they can get different views. I have heard that these new ways can really help lead to the correct root of the problems for many of us with "special cases". I know there availability is limited across the country and many insurance companies don't like to pay for them (even read one guy in the Seattle area, does them for the same price, just to help the patient out). It might be something for you to look into.

Good Luck, and I sure hope you are able to get some answers.

G'Pa Jack

Thank you, both of you. Grandpa Jack, I did put a lot of trust in Dr. Batzdorf, and after the appointment accepted what he said--the Chiari was written off--but it always bothered me he measured the Chiari in the wrong place. And, to be fair, he is 85 years old...certainly sharp for his age, but the possibility remains that perhaps he's not as sharp or on top of things as he once was.

I broke down crying leaving my appointment with him, though, because the appointment revealed more neurological symptoms and signs that surprised me and hadn't been revealed before. My right leg was numb to temperature, I start to fall if I stand with my eyes closed and feet together (positive Rhomberg text), and the right side of my face drooped subtly as the appointment went on and I grew fatigued. He wrote off the Chiari, told me to celebrate with wine, but had no answers for the other neurological symptoms.

Then the thoracic herniations show up in my MRI and my neurologist sends me on an urgent referral to a neurosurgeon. I think, oh, okay, that's what's behind my symptoms--though it doesn't explain my headaches, arm tingling, and that sort of weakness. This NS finds MORE things on my neuro exam not present just the month before--my right leg was hyperreflexive, and there was some test he did on my right hand that was positive, too--I forget the name of it, but he said it was another sign of hyperreflexia. *Edited to add I finally found the name for it--Hoffman's reflex. He completely dismissed my thoracic herniations and attibuted all of this to my Chiari combining with my thyroid disease. Here I'd written off the Chiari, gone in thinking the thoracic herniations were The Answer, and I get whipped right back to Chiari. Con. FUSED.

I'm going in for a second opinion on my thoracic herniations. I really did want one, but family and friends have urged me. So, sigh, I see NS #5 a week from today.

Unwritten, try not to pull your hair out while you are celebrating with your glass of wine.

My herniation was small- between 3 and 6mm. I was also turned away by a Chiari expert NS. I think you should keep going forward with what you know you have. I don’t understand why someone would say yes, your neurological symptoms are caused/ or exacerbated by Chiari, but then say the herniation is too small to operate …? Makes no sense.

Have you evaluated yourself for EDS? My advice is to go Dr Henderson. He has a long waiting list but he is thorough.

Jenn

This NS told me that when the herniations are as small as mine and thyroid disease is involved, in his experience, operating isn't that helpful. He said the people feel better for like a month or two, and then the symptoms slowly start to return. He told me there was no cure or treatment, really; nothing more to do than keep up the synthroid. :/

I've wondered about EDS--I have some symptoms, but not some of the hallmark ones like hyperflexibility, stretchy skin/scars, and bruising easily. But I do have a retroflexed odontoid and small pannus formation, and EVERY joint in my body snaps, crackles, and pops noisily (and has since puberty). I have wicked TMJ (always have), extremely flat feet, multiple herniated discs, and a pelvic prolapse (yaaaaay...groan) that occurred not long after my first son was born. As a 13yro kid and at my most flexible, I used to be able to accidentally pull my left hip out of the socket when I did certain stretches, but it always went back in. It was a really weird feeling.

So, all that considered, I have suspected a connective tissue issue for a while, but have no idea who I'd ask about that.

Who and where is Dr. Henderson?

Yes, you sound VERY EDS. Hashimotos (me too), prolapse, subluxed joints. A retroflexed odontoid IS a type if cranio cervical instability too. I’m sorry you have met a brick wall at every appointment- it’s so defeating :frowning: but I think you should trek forward.

Hoo boy. I have insurance, but would imagine anyone out of state won't be covered. Whee. How does that work? Is there hope with Blue Shield Point of Service HMO? The Chiari institute was also recommended to me--anyone have thoughts are experiences on that?

Who diagnoses EDS? What type of specialist? I can guarantee that my lack of hypermobility and the like will not impress my GP. Also, how is Hashimoto's connected to EDS? Would my ridiculous spine and the multiple herniations be part of it too?

Batzdorf did do one thing that seemed so conclusive--he looked long and carefully in each of my eyes, behind the pupil, looking for some sort of pulsing that suggests CSF flow is unobstructed (I don't remember what it's called). He said seeing the pulsing is a good thing--it means the pressure is good. NOT seeing it suggests something is impeding flow. He saw it in both, and was satisfied. It seemed pretty definitive to me. No?

He went over my MRI and said there was room for CSF flow all around my elongated tonsils, but made no mention of a standing or CINE MRI.

Incidentally, I'm attaching pics of how I understand Chiari malformations are measured, and how I think the docs have been doing it wrong.

228-Incorrectmeasurement.JPG (19.5 KB) 229-CorrectplacetomeasureChiari.JPG (20.4 KB)

See, that's the thing--I don't meet any of the major diagnostic criteria, and only a few of the minor ones. I know I don't have the vascular form. My symptoms (described in my earlier post) don't really fit in these categories, so that's why I'm confused on this one. How can I have EDS when none of the major criteria apply to me?

Yaaaaay, more confusion. :/ Sigh.