Is my chiari really causing my symptoms?

Hi everyone

I am a 34 year old mum of 1 from the UK.

I was diagnosed with chiari 1 in february this year after suffering from dizziness and eye movement problems since last summer.

I had an MRI on the nhs and the chiari was missed, but I then went private and it was quickly picked up. The NL was certain the chiari was causing my symptoms

I then saw a NS who arranged more MRI scans to rule out syrinx, tethered void etc. He did not recommend surgery at the moment due to the minimal symptoms but will see me again in a year.

My MRI report says there is overcrowding and restricted flow, and the herniation goes to C2. The NS said he was not sure how accurate the csf flow test was so was not concerned. I don't have any headaches, not even with coughing or bending, and not even when I was in labour!

The reason I question the chiari as a cause of my symptoms I'd because I don't have headaches, or any neurological signs apart from my weird eyes, which only effects me when I look to the right, the left side is perfect. Also, at the exact same time my dizziness started, my son had chicken pox, which I know the same virus can attack and damage the inner ear. My symptoms seem to be inner ear related, the NL wad very interested in this fact until he saw the chiari and then dismissed the inner ear theory,

I would just like to know if anyone else had similar symptoms to mine? I know I am lucky they are not worse, and I know they can progress, but I am still unsure that chiari is the cause of what's going on with me

Sorry this is so long!
Thank you
x

[itsy1]

I'm not sure what to tell you about the Chari diagnoses.  I think you're trying to be a educated patient and that's always a good thing.

I've had a variety of issues with my Chiari condition including nystagmus (shaky eyes when looking to the side) and a fistula (hole) in my inner ear.  The fistula really aggrivated my ballance.  In my case my high csf "blew out" my inner ear, like a balloon pops when blown up too much.  It took about 4 months of following by the neuro - ENT before that healed up.

I have a very pronounced Chiari condition though; even as a English major I can look and tell you where it is and what's going on.  This might not be the case for you.  Perhapse you're on the right track with your chicken pox hypothesis.

Have you seen a Ear Nose and Throught specialist?  Have any tests for evidence of viral infection in your ears been done?  I'd check up on that as well.

I hope this helps a little.

[Natasha42]

Yes it does help, thanks so much for replying.

I was sent to an ENT consultant when I first saw my GP as they suspected an inner ear problem. The ENT was useless, didn't order any tests apart a brain MRI which he then said was normal, and that I was suffering from migraine.

Oh well, I suppose if I have got inner ear damage causing my eye problems, it shouldn't get worse, if it's chiari, it might!

Thanks again for replying

[itsy1]

They won't let you try another ENT for a 2nd opinion?  

The first ENT I went to was useless too.  He had all these fancy credentials,  looked to be really knowlegeable.  Then he told me, "Oh,I see you have a history of ear infections and ear tubes.  You know, this is probably Menier's" gave me some diuretics and sent me on my way.

The next ENT was so much better.  His specialty was neurological issues and the ear, nose,and throat.  He worked with a neurologist.  He sent my immages to the neurologist and discussed my case with him.  Then he told me my CMI was causing issues and started testing to find out what shape my inner ears were in.

By taking care of my inner ear problems, I aleviated some of my symptoms while I sought help for my Chiari.

For what it's worth:  Don't assume just because you have Chiari that things will progress.  They very well might.  However, this is a very individual condition.  I'm almost positive no two Chiarians have the same set of expereinces and conditions (aside from our Chiari Malformations).  Some people suffer no ill effects, others mild ones, still others severe ones; sometimes it's a gradual thing sometimes a quick thing.  I know that's of no help, but I just wanted you to know to take this diagnoses one step at a time.

[*Stormy*]

Hello and Welcome,

I can't tell you how many times that I have questioned the fact on whether Chiari was really causing all my symptoms or not. In my case it is because I had to so many and some of them so weird that I thought that there must be more than one thing going on. I even felt more that way after surgery b/c many things didn't disappear and I had a hard time accepting that they could be permanent.

For a lot of us, by the time the Chiari is caught we are so far along that we forget the issues we many have had in the beginning and don't connect them right away. Years before I was diagnosed I had dizziness that would come and go, I was told it was Vertigo like that was a real diagnosis! I had headaches that would stay for weeks at a time but they were functional ones, not like the typical Chiari headaches. It wasn't until I started having problems with my arms,neck, back and legs that I started to get somewhere. Still It took me a  long time to get dx'd because the headache was not at the top of my symptom list (the affected gait was- which is not nearly as common). So what I am saying is that even if you are not sure it's Chiari you owe it to yourself to follow up and get some more testing done. Both your symptoms, dizziness and the shaky eyes are a common symptoms and I have both except my eye shakiness happens when I look to the left.

The positive out of all this is that you know that you have the herniation and it can be watched closely. One that reaches the C2 level is quite large however that doesn't necessarily mean that you symptoms will be worse...it's all about the blockage you may have.

I would recommend having regular follow ups with you NS so that you can be monitored. Having surgery for me was extremely hard to recover from and quite painful. I view it as something that should be done if there are no other options but at the same time you don't want to let it progress to permanent damage. It is a fine line that we all balance on!!

Good luck!
Stormy

[selmaS]

  Hi and welcome to the Chiari forum.

HI yes, ur symptoms could be from chiari, and not everyone will have the HA's...that is a misconception.

And Chiari symptoms cycle...they come and go...I had yrs where I thought I could not go further with them and then they stopped or calmed down to a bearable level....plus, since we have had this from birth, we have adapted and compensate with everything we do and have more symptoms then we even realize.

The fact u have a possible obstruction or restricted flow makes me wonder y the dr would wait a yr b4 doing another MRI?

In all I have heard it should be 6 months unless u experience new symptoms.

As itsy mentioned it is highly possible that u will never be a surgical candidate as ur symptoms or chiari may not progress....but, it is something that should be monitored and u should be well informed to know what to look for.

  I hope this is helpful : )

   "selma"

[actressmouse]

I am interested to know what tests your ENT (the 2nd one!) did to check the function of your ears.  So far, I have a significant loss of hearing in my left ear and have a hearing aide in that ear.  I'm being monitored for any more hearing loss...but I am curious...the Neuro-otologist I went to only did blood work.  Did yours do additional tests beyond audiometry and blood work?

[itsy1]

He did a full work up on me.  (Later I found out he'd had other Chiari patients with similar troubles.)  He examined my cranial nerves and hearing with a tuning fork and the audiometery.  We did the Dix-Halpe manuver (hated this).  We did the "head shaking test", but with Frensel lenses since shaking my head would aggrivate my symptoms.  We did VNG and rotary chair testing.posturography (a type of step testing) and SVVT testing.  That's just what I can remember.

Here's a link that kind of describes these tests.  My neuro-otologist is the Dr. James Soulieau mentioned in this article.    http://www.enttoday.org/details/article/531813/Vestibular_Testing_Modalities_Enter_the_Digital_Age.html

The chair pictured in that article is not a test he used on me, because with my Chiari it would've possibly harmed me.

I've always asked him if I can get hearing aids because of my hearing.  However, he told me that because my hearing fluctuates so much with my csf pressure and CMI issues it wouldn't be possible.  First I would constantly need to have my aids adjusted, second there's no guarantee they'd work for fluctuating hearing loss.

I hope this helped.

[itsy1]

Oops!  I meant to address the last post to you!  :P

[actressmouse]

Thanks...just confirms what I suspected.  My guy didn't take me seriously, just did a lot of blood work.  I won't be going back to him.

[itsy1]

I agree.  Your doc made me angry for you.

I just nioticed you're in NY.  Are you a TCI patient?  (...I'm sorry if you've already mentioned this, my memory is acting up todaty).  

If you are ask Dr. Kula for a referral to a neuro-otologist.  He's offered to help me before with NY area referrals.

[2009Zipperhead2009]

CT scan is what diagnosed my Chiari. Post op visits they always checked for leakage through CT scans. I had 3 surgeries.

Research!

Bless

[nativeplants]

I find the comment on the headaches quite interesting because my 40 year-old husband has experienced the sudden onset of a number of disturbing neurological symptoms in addition to some minor things that have been going on for years that we assumed were related to his severe scholiosis.  A little over a month ago he had an MRI of the brain and cervical spine.  The first neurologist who looked at it noted that he has a Chiari type 1 herniation of 3-4 mm but neither he nor the movement specialist believe that any of his symptoms could be caused by the Chiari.  The movement specialist specifically told us that if there is no headache then Chiari cannot be the problem period.  Since all of this began he has has headaches more frequently but they are minor and were worst when he was trialed on a drug for one of his symptoms.  He consistently fails the Rhomberg balance test even with his eyes open and is having an atypical problem with his gate related to intermittent reduced sensation in his right leg.  The leg was really the first symptom about 12 years ago, he had what we finally decided was a pinched nerve that resolved on its own because nothing showed up on the x-ray or MRI done at the time (spine but not cervical spine) and by the time the testing was completed the problem had mostly resolved but has recurred for short periods of 5-30 minutes since but not with the original severity until everything else started and now it has been mostly on but not as bad as the original episode.  He also has difficulty with occaisional "grey-outs" when moving his head, especially if he is bent over, but side to side with trigger this as well.  He has suffered from some form of insomnia for over 10 years and in the last 2 months since everything else began it has become much worse and is now including movements in his sleep which I was not aware of before.  The one symptom that does not completely fit is the fact that he has developed a tremor in his right arm that is somewhat Parkinsonian in nature but as of right now we are being told that it is definately not Parkinson's and that that description does not even really describe what is going on it is just the closest they can come within standard definitions.  We are getting nowhere fast with our search for answers and it is wearing on both of us and our relationship, not to mention our 5 and 9 year-old children.  Does anyone believe the Chiari angle is something we should push to have investigated more?

[selmaS]

  Hi and welcome to the Chiari forum.

Those of us with chiari can have tremors...I have had them in my arm that are visible to others..and at times only I can feel them and they r not visible.

The other thing is Chiari symptoms do cycle and that could explain the fact he has a symptom and then it goes away and then he has it again....

I am certain most with chiari have headaches, but do not recognize them as such bcuz they have them daily and all their lives they r used to them, so when asked...they will say they do not have them. Not all will have severe HA's and that is what I meant in this thread.

The problem ur DH is having , is he is seeing the wrong Drs...u deff need a true chiari specialist.

A CINE MRI to see if he has a CSF obstruction.....

HA's r not the only symptom we will have and to dismiss bcuz the patient does not have the typical chiari HA is ridiculous.....

I would get copies of all ur DH's MRI's and reports and find a few chiari drs after u do some research and see what they say after they review his info.

   But do push further and make sure..cuz right now u do not have answers

            "selma"

[nativeplants]

Thank you so much for the encouragement.  At this point unless something "sinister" shows up in the sleep study (central sleep apnea or REM behavior disorder) I believe they are going to label his symptoms as psycogenic and write him off as a nut case.  I can almost buy it for the tremor because of some of the the circumstances surrounding the start of it but for the rest it really does not make sense.  No one (including a physician friend) who knows him believes that this it is entirely a mental illness based upon his personality, he is too laid back and easy-going even with stress at work, etc., does not seek attention in any way (unless it is when he is in his element telling people about plants in a nursery), and he worries so little about health that he had not been to a Dr. since he had the leg issue 12 years ago.  He has delt with pretty severe back pain due to his scholiosis since he was a teenager but rarely complains unless he pulls something that causes spasms--the only way I know when he is hurting worse than normal is when I hear him in the medicine cabinet getting ibuprofen.

I will definately try to find someone who specializes in Chiari to look at the MRIs that have been done so far because aside from the way his tremor has been characterized every single symptom he has (including somethings that we have never been concerned about) show up on a list of possibly Chiari symptoms I found.  So far he has seen the nurse practitioner at a general neurology clinic and has had one visit with a movement specialist because his most obvious complaints are the tremor and gait disturbance.  I just want to get to the bottom of this so we can try to have a life again!

[selmaS]

  So many of us are told we have anxiety and need meds for that and nothing else...too many Drs dismiss chiari for that ...but, knowing chiari can affect us emotionally I think we all hold it together pretty well.

We may get depressed bcuz we r not listened to, but that is not the cause of our issues....

And I am sure is the same for ur DH...keep pushing for answers...when u research Drs...know that some will review copies of MRI's for free, and some will do it for a nominal fee....make sure they work with ur insurance  or u can afford to pay b4 u make arrangements to go.

   I am sure u will get answers, please keep us posted

             "selma"