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louloutinks

Diagnosed With Chiari 1 - Is This The Cause Of My Dysautonomia

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this is going to be short as am in a bit of a state but have been told that I have chiari 1 this morning - could this be the cause of my dysautonomia?

many thanks

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I am not sure it is your cause, but from what I've read, Chiari can cause POTS in some that have Chiari. It sounds promising for you to have a chance to have it fixed and see what the difference it is. Keep us posted!

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WOW Tinks! that's a lot to take in isn't it? I am also being checked for this.....just had my MRI last week. My specialist told me that it can cause dysautonomia so now I am just waiting to hear about the results. Have they told you anything other than you have Chiari 1? I have read about patients who have had the surgery and their symptoms completely resolved after so that is promising. Hang in there.....big hugs <3 I know you must be feeling overwhelmed ;(

Bren

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agree with the above, It sounds like u may be overwhelmed by this news. I was just reading a study link through dinet under causes..chiari, about a lady who had decompression surgery and her symptoms dissappeared. This could be wonderful news in disguise? I hope it is for you, Ive also read there are therapies that are noninvasive to help with chiari if surgery isnt required. Im curious if you had alot of neck /headache symptoms? Good luck and take care- sarah

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Hi everyone. Sorry I didn't reply yesterday but it all felt a bit surreal!!

I got my results over the phone and they have booked urgent appointment for today so until then, all I know is that I have CM1.

I have had the worst headaches ever-a lot of which are orthostatic and that makes sense as chiari affects the CSF. I have been getting really bad neck pain and only 2 weeks ago booked in with a chiropractor as it got to the point that if I slept on my stomach with head turned to side I would wake up and couldn't move.

I have been having lots of hearing problems so my neuro sent me to an ENT to look for an acoustic neuroma. He didn't find that but found CM1.

Bren I hope your results come back ok of your MRI and you and your son have been well? Let us know what your results are and I hope it's ok.

Got an hour or so before I leave for my appointment to find out what is going to happen.

The NHS in the UK keep you waiting for weeks for appointments usually, so as I got an appointment the next day it has made me worry more!!

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Just thinking about u and praying u found hope through ur appointment today..tc-sarah

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Just thinking about u and praying u found hope through ur appointment today..tc-sarah

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Hi everyone I had the appointment and the neuro told me a year or so ago that all my symptoms were functional and caused by stress. He is the neuro I saw the other day and he cannot believe he missed it on the mri a year or so ago and he apologised. He is going to go back to the other hospital and check the mri and speak to the staff to teach both them and himself. This has given me no faith in what he has said and so I have left a message with the neurosurgeon I saw at NHNN London about what has happened and am waiting to hear from them.

So for the past year because I was told my symptoms were stress related, I have had all the symptoms but have just put up with them, not mentioned them to my family, had no support, felt like I must be going crazy etc when all along there was a reason for it all.

I am relieved but scared at the same time. Relieved to know I am not imagining the symptoms!!

The local neuro said that he wants to compare the last two scans to see if there has been a rapid progression and that I need another mri in 6 months.

So at last I have an answer. He doesnt think it is causing the autonomic symptoms yet he believes it is affecting my crossed acoustic reflex - this makes no sense as that means it should affect both if the cerrebellum is pushing on the brainstem.

I hope that NHNN call back soon. :)

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Hi sue. About a year and a half ago I noticed that certain sounds would make my left ear thump like crazy and it felt uncomfortable. Couldn't work out why it seemed when I turned my neck to the left it would stop. Then one day I had headphones on and my ear on left went crazy so I took out the left ear piece but it carried on thumping, and it only stopped when I took out the right one. I told the ENT guy and he said I had an abnormal contralateral acoustic reflex. He said that something was awry in my brain. I have to go to see an audiological scientist for further testing on this to try and find what part of the reflex or where in my brain it is 'faulty'.

Have you got problems like this too sue?

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I have Chiari 0 and cervical spine instability. Since I also have EDS - that explains some of the spine instability. But, none of the doctors think that the small amount of drop that I have is causing issues. However, if you research this - there have been some who feel that even a small drop can cause autonomic dysfunctions. I don't have enough issues with mine to go for surgery. But, depending on what your symptoms are - some have found that surgery makes a huge difference. There are many forums for Chiari people and you can get more info on one of those forums. I think this may be some peoples answer for their POTS symptoms. If there is brain stem compression - it will affect function.

Issie

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Tinks, I do have ear issues. I don't have any definitive diagnosis yet, but am going to see a neuro-otologist soon. I saw one a couple of years ago, but he said everything was "fine". Yea, tell that to the person that quit driving 10 years ago because the eyes would not stay on the road! I have some kind of inner ear problem that has never been pinned down. I am extremely sensitive to sound in one ear, and loud noises or alot of noise in general make me feel awful. I am thinking of a specific ear problem, but want to go through my appt. to see if it is the problem.

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I also have issues with nystagmus, imbalance, sensitive hearing, vertigo and central sleep apnea. What was the official diagnosis of your MRI? I know the definition of Chiari says you need to have a tonsillar ectopia of greater than 3mm. Mine is only 2.4mm so not sure that's of any significance.

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Tinks

You are the only other person I've heard describe thumping (I have been calling it fluttering) in their ear. It sounds like my ear drum is fluttering and that's what it feels like too. Is that what you experience? Almost like an eye twitch in your ear except you also get the sound?? I have been telling and telling docs this for the last 6 yrs and no one has done anything but look at me funny except for the EDS geneticist who is sending me to a neurosurgeon. The report from the upright MRI of my brain and c-spine says no chiari but stenosis from 2-3 all the way through 6-7 and three discs impinging on my spinal cord. But the neurosurgeon assistant said he.never trusts the reports and reviews the films himself because most radiologists aren't trained properly to detect chiari. So I was sent 30 pages of stuff to fill out on Friday and the list of things to send back. Then the doc will review, order any more tests he wants before he meets me, and then I set up the appt once I've had the additional tests done.

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Katybug, how did you get an upright MRI?? Is it something they do routinely in places now?

I have that ear fluttering occasionally, like the pressure is equalizing or something. I don't have it often though.

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Because I get swelling and drooping of the right side of my face with my migraines and I had a VERY positive Romberg test (when they make you close your eyes with feet together and sometimes tilt head back to see if you sway...I sway all over the place), the geneticist ordered the upright MRI for my brain and c-spine because she suspects either chiari or some other spinal fluid pressure issues. Then I told her about the ear fluttering and that sealed the deal. Regular MRI places don't do the uprights. In the Baltimore /Washington area, there is a company called Washington Open MRI that has the upright equipment. She knew the neurosurgeon would want me to have it already done for the appt. She also wants me to have a CT angiogram to check for proper blood flow in head and neck. This is to be done at Hopkins with a radiologist that actually works closely with said neurosurgeon.

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Sue that's how my ear problem started off was sensitivity to loud noise. I can actually feel the thumping and reverb in the back of my head. I also get left facial twitches to noise in right ear. Are you in the UK sue?

Lukgar mine is 5mm CM1. I have ordered a copy of the 2 last scans as I want to see how the neuro missed it on the first scan. I have found a very interesting PowerPoint about the changes in definitions to chiari. There is a good wealth of info on there too. On it I noticed it says babinski's (plantar response), hyper and hypo-reflexia which is what my neuro found over a year ago. I think they are going to classify chiari as C1, C2 and so forth. I shall try dig it out and post it.

How do you know if you have sleep apnea?

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I have Chiari 0 as well. Did they check the rest of your spine to see if you have a syrinx? I need to have the rest of mine checked but my copay for the other 2 areas is expensive. When I finish paying off the head and neck I'll have them done.

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Also here are some good sites to check out for Chiari information:

http://www.conquerchiari.org/index.html

http://www.chiarisupport.org/

I do personally think Chiari brings on and is the root cause for many with dysautonomia. On the first link it states a high percentage of miss read MRI's. POTS is just a collection of symptoms and has no true diagnosis code. Chiari does.

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Thanks for the links monstrosity. I will check them out.

I don't have much faith in my neuro as he didn't even see it and said it is only 5mm so mild and needs nothing further. He even said only take pain meds for excruciating head pain twice a week max (like to see him suffer this). I have contacted the London neurological hospital where I saw a neurosurgeon and left a message with his secretary. I have read I should be checked for both a syrinx and cranio cervical instabilty due to my eds. the instabilty would make sense as I get orthostatic headaches. So when I stand. The cerebellum drops further,blocking off the CSF causing orthostatic headaches. Am hoping to hear from london soon.

Are you having symptoms with yours too?

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Sorry Katybug but for some reason your post didn't show on the iphone. Yes I can feel the thumping both in my ear and under the skull base as movement. Have you been seen by an audiological scientist? They check your acoustic reflexes and brain responses amongst other things. Is it your contralateral or ipsilateral response? If you put in headphones you can check by removing the ear pieces one by one and see when the thumping stops in response to noise - that's how they know that it is my contralateral acoustic reflex that is awry. I can set mine off very easy by doing that but I get thumping every day and it drives me batty. From the moment my alarm goes off, the noise sets it off. Then my son speaks and it starts again. If my ear doesn't thump, my face twitches to the noise instead - very wierd but they said that the sound response goes round in a figure of 8, trough your ear, to the brainstem, out through the opposite facial nerve then on to the stapedius. Makes sense to me by what I get.

The good thing is is that they have found the stenosis and that you are under a neurosurgeon.

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Tinks you need to see a good Neuro Surgeon that is familiar with Chiari. Unfortunately most neurologists are clueless and dont seem interested in Chiari unless its a huge herniation. I cant stress enough read up on Chiari and the dr's that perform the surgery. I would be very cautious on who I would trust with treatment.

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