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Old 02-03-2008, 02:39 PM   #1
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Chiari Malformation Information

I posted this on an existing thread by mistake. My opologies!!

I have recently been told by my neorologist that I have a 6mm herniation. I have sent off all my tests and symptoms list to the Chiari Institute in New york. I have heard they are the best in my area.

This has been a very long journey to even get to this point. Doctors thought I had MS, when all the tests showed that it wasn't, they were starting to write my symptoms off as depression and anxiety.

I finally found a dr to listen and he had radiology reread my MRI and confirmed the herniation. Not being a Chiari specialist, he wasn't certain if my symptoms were being caused by this.

But he encouraged me to seek out a specialist and asked me to keep him informed of my findings. So there's light at the end of the tunnel for me.

Has anyone had decompression surgury that can shed some light? My quality of life is affected serverely, walking is an effort and I am continuing my job which takes all of my energy to make it through the day. I am unsure of what lies ahead. What will happen to me with my job if I have to go through surgery. Just so many uncertainties.

I know I can't think too far ahead but I can't help trying to plan if it is necessary.

Any help is appreciated!!

Cindy

 
Old 02-04-2008, 04:57 PM   #2
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Re: Chiari Malformation Information

my sister had this for 1 year before her ENT told her what she had. the minute he saw her xray, he knew. She had surgery and is good as new......she had bad headaches, could not bend over or she would hurt and she couldn't even cough! the surgery was major, but she did great and hasn't felt better...............she's so glad she had the surgery!
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Old 02-04-2008, 04:59 PM   #3
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Re: Chiari Malformation Information

BTW: It is a congenital defect........hereditary
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Old 03-12-2008, 06:13 PM   #4
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Re: Chiari Malformation Information

Hi
I was diagnosed with a chiari I malformation last year via MRI. Initially, when I had the MRI done in Aug 2006, I had severe headaches and double vision. My eye doctor thought it was a brain tumor, given the location of my headaches and severity. The MRI did not show a brain tumor, thank goodness. However, it did show a pituitary enlargement AND a chiari I malformation. No one said too much about the chiari on the initial MRI, and on the second, which was ordered to monitor the pituitary, the neurologist I consulted with said most of these are discovered by accident and not to worry.

I had eye surgery last June and that seemed to take care of the double vision and headaches. It was a muscle imbalance in the eye. I also have a history of vertigo and now have had pretty significant hearing loss in my R ear.

Well, my ENT ordered an MRI to rule out tumors on the auditory nerve given the asymmetrical hearing loss in a short time (My last hearing test was a few years ago). The MRI came back ok for the nerve tumors, but I learned from the MRI report that my right tonsil (where a tonsil here means part of brain) extends almost 7 mm below the foramen magnum, which is consistent with a CIM.

I am trying to figure out if this is significant, especially about the 7 mm. Either it was not that noticeable on the first MRI, or it grew. Is that possible? I feel kind of alone in wondering what course of action is necessary

Any input is welcome!
Thanks!

Prisc1125

Last edited by prisc1125; 03-12-2008 at 06:15 PM. Reason: clarification of a term

 
Old 03-22-2008, 09:16 AM   #5
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Re: Chiari Malformation Information

Yes this is significant. It can be what is continuing to cause your symptoms. But maybe not. Consult a NS who is a Chiari Specialist. Not just a NS. There is a big difference when it comes to the possibility of CM1. Join some of the CM1 message boards, they are a great source of information.

 
Old 03-24-2008, 09:45 AM   #6
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Re: Chiari Malformation Information

Hi
Thanks for writing!

It is hard to tell lately what might be attributable to Chiari or not. I read that if there are symptoms, they begin in the 30s or 40s, which is about where I am. I have started w gagging episodes, involuntarily during the night and mornings, nausea, concentration and focus problems, as well as dizziness and the other symptoms I listed. I have had decreased appetite , temperature imbalances, and sleep issues, but that could be attributed to dehydration.

I assume a NS is a neuro surgeon? I know there is an institute dedicated to this in NYC. Trying to decide how to pursue this.

Thanks for the information!

Prisc1125

 
Old 03-24-2008, 04:26 PM   #7
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Re: Chiari Malformation Information

I have posted some of the symptoms below. My daughter has had 2 of them consistently for the last year. In the last six months, it has really increased in speed and has had at least half of these symptoms off and on. CM1 is crazy in that it comes and goes, which makes it more difficult to diagnosis.

You are correct that adolesants (my dd) and 30's/40's are common ages for it to be seen clearly.

I would research, research, research. If I had taken my local Ped NS's word, I would have waited until she was having drop attacks and failing to thrive before thinking about surgery. Thru the beauty of the internet, I found families/individuals with CM1, listened to their stories and asked for Dr. referrals. We travel 2 hrs one way to see her doc but worth every dime. He knows what to look for, does not throw it off to puberity or depression, and understands her longing to have a normal life. Don't stop until you have seen the Chiari specialist in your state.


Chiari

Severe head and neck pain
Headaches brought on by coughing, sneezing or straining
Difficulty swallowing
Frequent gagging and choking
Dizziness and vertigo
Balance problems
Muscle weakness
Loss of fine motor skills
Poor hand coordination
Blurred or double vision
Hypersensitivity to bright lights
Nystagmus (involuntary eye movements)
Difficulty in tracking objects
Tinnitus (buzzing or ringing in the ear)
Hearing loss
Vocal cord paralysis
Sleep apnea

 
Old 04-03-2008, 04:38 AM   #8
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Re: Chiari Malformation Information

you can be born with Chiari too.

 
Old 04-12-2008, 09:48 AM   #9
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Re: Chiari Malformation Information

Hi
I was in to see a neuro otologist recently for the hearing loss (R asymmetrical) and vertigo. He did an exam for the vertigo and, based on it, could not discern any symptoms that would indicate a Chiari I. Yet, the films point it out and, recently, my symptoms have been such that I am beginning to wonder.

I am having the doctor take another look at the films with his radiologist and they are going to see if there is some compression on the spine. He is also having me go through vestibular testing.

Lately, I have been having severe pain right at the base of my skull that massage only barely helps. I get headaches on the R side of my head, and I have this strange sensation in my ears that feels like fullness but yet noise irritates them terribly (cell phones irritate my ears and I have to switch ears to hear anyone on the phone), nausea, vertigo, and a burning in my eyes (as well as twitching in my left). My double vision is returning as well.

Cognitively, I have no focus and I am easily distracted. I miss things in my work that I use to catch, have trouble figuring things out in my work, and I also find that my mind goes blank easily and I cannot retrieve words. It takes me a long time to get things started and done, and this is especially disturbing.

I have little patience with people lately, and I am either exhausted or have terrible mood swings. I am finding that I am not connecting with people as I hoped because I cannot seem to calm my mind or feel energized by much. It is like my mind goes blank while I am trying to be in the moment.

My husband thinks that some of my symptoms are due to the stress at my work place (very toxic work environment), but I am not sure if it can all be easily attributed.

Goodness knows I don't want to be looking for more problems, but my intuition tells me that this is not right. Yet, with the symptoms, I cannot tell whether Chiari I is what is causing this or something else.

I appreciate your input.

Prisc1125

Last edited by prisc1125; 04-12-2008 at 09:58 AM. Reason: added more

 
Old 04-15-2008, 07:41 PM   #10
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Unhappy Re: Chiari Malformation Information

Hello, My Mom Has Chiar I And Was Diagnosied Almost One Year Ago. She Has Ringing In The Ear (really Bad) And Can't Hardly Hear Out Of Her Right Ear. She Saw The Same Ns That Did Her Back Sugery About 5 1/2 Years Ago. She Has Not Done Much Research But I Am Extremely Concerned About Her. She Had 2 Surgeries On Her Neck, One To Remove The 1st Vertebrea And Redirect The Muscle Tissue And The 2d Was To Remove Fluid On Her Neck (which Was A Staph Inf). I Am Soooo Lost And Do Not Know What To Do. She Has Had These Surgiries But Has Not Had Any Success With Any Of Them. I Am Starting To Wonder If Her Ns If Even Knows What He Has Done. Her 4th Mri Showed No Chiari1, Now How Is That Possible. If She Had It A Year Ago And He Didnt Remove Her Brain Stem Then How Is It Not Detected Now??? Please Help Me. My Mom Is In Her 50's And Has Been Having Symptoms For About 4 Yrs. I Am Looking To You For Help And Advice

Steph

 
Old 05-26-2008, 07:24 PM   #11
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Re: Chiari Malformation Information

Prisc and Steph,
you both need to go to the asap.org website or look up the Chiari Institute....there are eduactional videos/article and support. Based on my experience with NLs and NSs, unless you're seeing a Chiari specialist you're wasting your time. My NL said no referral til my legs are numb!!!
In all the research I've done the sooner you get med. intervention the better.
University hospitals tend to have these kind of specialists. There are Institutes for Chiari (CM) in New York, Colorado and Florida (the biggies). There are CM/SM specialists in the west too but not like the places mentioned.
Get educated on this as much as you can, get a specialist and be your own advocated. It's your life and your mom's life. Read all aboout the symptoms, they do come and go but eventually they are with you the majority of the time. Take care and sending you blessings of peace and health.

 
Old 05-27-2008, 12:04 PM   #12
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Re: Chiari Malformation Information

Hi~

I just wanted to add to Sunny's post!! I went to The Chiari Institute on April 22nd and surgery is sceduled on June 16th for myself.

I had an appointment with my local neurologist last week that I had sceduled months ago when no one could find what was wrong with me. This neuro had seen my 6mm herniation but told me that he wasn't sure this would cause my symptoms so I went of to New york, to TCI.

I figured I'd go to this appointment since it was already in place. one, to keep this neuro in the loop incase I needed someone to follow me closer to home, and two, I wanted to spread some Chiari awareness.

The neuro told me that I was going to a very reputable facility and I would be in good hands. But he also stated that I never would have gotten any local neurosurgeons to take my condition seriously because my herniation wasn't large enough. He was amazed that someone would take me on and try to help me.

This is a very common response from many in the medical field. They don't truly understand the impact Chiari I has on our bodies. Chiari specialists (such as TCI) looks at the whole picture to determine if treatment will be helpful.

My advice to anyone experiencing strange symptoms and discovering even a mild herniation, seek out a Chiari specialist!! There is a big difference on the success rate if there is intervention early on. data from literature indicated that the best outcomes are obtained
when surgery takes place within two years from the onset of severe
symptoms.

Dont let anyone send you away saying its not bad enough. This is a progressive disease and only a "true" chiari specialist will advocate for you!!

Good luck to all

Cindy

 
Old 05-30-2008, 11:15 AM   #13
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Re: Chiari Malformation Information

Hi
I have not been on the board for a bit and missed a few threads.

I was in to see my neuro-otologist yesterday to finish up some vestibular testing for the vertigo/R hearing loss. I do have manifestations of both per the tests. He also began entertaining further the possibility of the Chiari I exhibiting symptoms and is referring me to a neurosurgeon here in Boston for a consult. This neurosurgeon he referred me to specializes in CM as well. The MRI shows that the CM is 7mm and the neuro-otologist mentioned that if I don't take care of things now, the issues I am having can become permament.

I have the vertigo, hearing loss, speech issues, tight neck, nausea/gagging (involuntary), exhaustion, focus issues, headaches double vision -- to start. I also have spasticity in my legs which could be from CM or another dx I have.

I am in the age range when symptoms begin to manifest. This all gets pretty confusing. Really not ready for brain surgery!

Thanks
Prisc1125

Last edited by prisc1125; 05-30-2008 at 11:17 AM. Reason: grammatical

 
Old 05-30-2008, 01:09 PM   #14
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Re: Chiari Malformation Information

Hi Prisc~

Sorry to hear that you've begun to travel down the Chiari road. But it is crucial to have intervention early on so that symptoms don't get progressive and permanent.

I am from the boston area as well and was looking at 1st at a Boston Dr for my chiari. I decided against that route and decided to travel the 4 hours into New york to The Chiari Institute because this is all that they deal with there. My neurologist told me that I would have a hard time getting any local neurosurgeons to take my symptoms seriously.

I know brain surgery sounds so scary!! But let me just say, I'm 42 and have been on a fast decline for the last year. My quality of life is greatly affected and I have had to stop working.

So do alot of research!! If you are knowledgable about your condition, you can be your own best advocate. Most drs believe that surgery isn't necessary for a mild herniation. TCI doctors look at the whole picture to make that determination.

5mm or more is concidered Chiari and if your experiencing those symptoms, listen to your body!! If I can help in any way, feel free to shout out!!

Also, I'm curious about how the Boston Dr deals with all this. If you can give me an update, that would be great!!

Also, on one last note. Be very careful with your body. no lifting over 10 LBS, pushing or pulling and no sports or activities that can cause jerking of the neck to name a few.

I know this can be very overwhelming but once your educated, it will all start to come into place and make sense!!

Good luck to you and take care

Cindy

 
Old 05-31-2008, 07:08 AM   #15
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Re: Chiari Malformation Information

Hi Cindy,
I do have a Chiari on the MRI measured at 7mm but it is yet to be determined whether this is causing my symptoms. I researched the condition a bit back in the winter and wrote my doctor a note listing the possible correlations. He was not convinced at the time but now seems to be more so. Perhaps in the absence of other reasons.

You mentioned having to quit work. Was this because of concentration issues? (my MAJOR problem at the moment, due to headaches as well). I am concerned about this possibility for myself. I drive over an hour to work and it is a very chaotic environment. I have been on the slide for months now.


I am trying to research as much as I can, but I don't want to get too carried away just yet. I have other health issues and life issues needing my attention, too.

Interesting that there are so few doctors in our area that deal in this sort of thing. I am hoping this doctor I was referred to can shed light on what I might expect. I am not sure at this point which condition is causing symptoms: stress, my neuro issues, or this. Lots of gagging, nausea, sleep issues, temperature imbalances (esp during the night) plague me each day.

Thanks for your support and advice. I will look into this. Good luck to you as well. What is next for you?

I am 39 (40 soon) and I have not been able to start a family given all of this.

Prisc1125

 
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