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Newly diagnosed with Chiari I
I just got a diagnosis.  When the doctor told me, I was so nonchalant; however, having done more research, this is rather serious, right?  I have seen Chiari support groups, etc., so that got me rather scared.  Also, I was reading some of the posts that said that their cerebellar tonsils extended 8 or 10 mm into the foramen magnum.  Well, mine says that it's 1 cm.  How bad is this?  What should I expect?  
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1834803 tn?1318224638
I am 34 and was just informed over the phone by my dr. that I have Chiari 1. He referred me to a neurologist, which I thought was going to take time to explain things to me and tell me what is going on. However, he spent about 20 minutes with me and told me he was sending me to a neurosurgeon. He showed me my brain mri, but I felt like I was in a time warp so I don't think it sunk in and I didn't hear a thing he said, due to him going so quickly through everything. I am very confused and wanting to know what questions I should be asking the neurosurgeon?  I was also diagnosed with fibromyalgia about 8 years ago, so I wonder if any of those symptoms could actually be chiari? My reason for the brain mri was; sharp pains in my head, nausea, dizziness, blurry vision, ringing in my ears, etc..I always put my headaches and other issues off as my fibro...Could use some advice on how to deal with all this? Thanks!
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

Many of us do get a fibro dx...and not all that get the dx really have it...I found that I have a condition related to chiari called Ehlers-Danlos.....

What u need to know b4 u go to a NS is, did u have all the testing done to know all that is going on, and is the NS a chiari specialist?...It is very important that ur NS is well experienced with chiari, and that u r comfortable with him/her as well.

Chiari is the malformation of the skull  that causes the skull to be too small for the cerebellum and it forces a part of it, the cerebral tonsils out of the foreman magmum which is where the spinal cord and brain stem join....
The width of the tonsils is more important than the length, which is usually the measurement given in mm's....the reason the width is more important is bcuz the wider it is it may obstruct CSF flow...and that is what causes the problems....
.....Not everyone with chiari is a surgical candidate, and not all that  have surgery find relief.

Finding the right Dr is not easy, we do have a list of Drs names compiled by the members of their own drs, the list is not however a referral, u do NEED to research all Drs u consider seeing-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Surgery is not a cure or a fix for chiari, but a means to slow progression and restore CSF flow.

If u do not have copies of the MRI and the report, request them from the facility that did the studies ...and do so going forward...always get and keep a copy of all tests and the reports making the process of second and third opinions easier on u.

The best way to deal with it all, do things in moderation....know ur limits and rest when u need to...save up energy for when u know u will need more....and avoid activities that trigger ur symptoms.

http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

Know that these symptoms do cycle...and most meds do not really help.

  ....and u r not alone.

   "selma"
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Hi - did anyone find an NZ specialist?
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Hi neava I am in Auckland New Zealand and would appreciate having a chat with you if you are interested?
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Selma that is amazing as I have just been diagnosed with Chiari 1 and I have thyroid disease etc.
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620923 tn?1452919248

  Hi we do have a member from NZ....unfortunately she lost her son.....she was doing some awareness over there, if u can get in touch with her, she would be the one to talk to in regards to Drs. - clintsmum she is not very active, but I am sure if u send her a PM she will respond to u-
http://www.medhelp.org/personal_pages/user/910969
That is a link to her profile page.

Many with Chiari tend to have an auto immune thyroid condition called Hashimoto's....is  that the same thyroid issue u have?
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I was diagnosed a month ago i am waiting to see the nuerologist and the ent consultant looking back over the years i think this has affected me in other ways iv had balance problems for years i have had 4 lots of surgery on my ankle that has left me disabled iv had the bones taken out of my ears which may be a conected the last year iv been feeling terrible i have had numb hands and arms in bed iv had to get up in the night and move around before the circalation comes back iv had bad pains the left side of my head that have frightened me iv had the shakes bad neck pain pressure in my head and funny feeling in my legs where i cannot stand up and a sticky feeling in my throat that makes me cough and before i was diagnosed i though what is going on with my body i was popping up new simptons every day
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Hello Selma!, in a post in 2011 you stated you found help for those without health insurance and would post this at a later date. Is that help still available and what is it?
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

If u had a link to that post I might be able to refresh my memory, for those of us with chiari  we tend to have short term memory issues and I am not sure what exactly u mean.

There is a link I post to where u can get affordable ins if u have a pre existing condition...not sure if this is what u mean?
http://www.pciplan.com/
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I recently received the Chiari Diagnosis and have just joined this group.  I want to say that your's and Shane99's response to this question were spot on.  Extermely helpful
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I recently received the Chiari Diagnosis and have just joined this group.  I want to say that your's and youngwife's response to this question were spot on.  Extermely helpful
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4076332 tn?1371863632
I am happy to see this group is still up to date. My son at age 8 yrs had his first of four surgery's for Chiari malformation. My oldest son was diagnosed with Chiari yet has been lucky not to have surgery. I too have Chiari and had surgery in 2004. Testimony, yes Chiari malformation is inherited,and also can be indued from a dramatic brain trauma. Realize if you have 0cm or 22 cm the size of the herniation means nothing. What is important is how it is blocking the fluid that.a portion of the cerebellum called the cerebellar tonsils protrudes out of the base of the skull into the spinal canal. This protrusion causes pressure in the brain, no matter what size. At time I have witness smaller herniation cause more blockage of the spinal fluid, in which caused more symptoms, and great disability.
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4076332 tn?1371863632
Just asking, PRE condition. this insurance is willing to cover you. How and why?
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I was recently diagnosed with Chiari 1 Malformation. I have always had migraines but they have gotten severely worse with double/blurred vision. Tinnitus•difficulty swallowing•neck pain and stiffness. Shoulder pain and severe pressure when I cough or sneeze or anything. So the neurologists did the MRI and they found a 5mm protrusion.  I am scheduled to see the neurosurgeon on 11/6/12. I'm nervous but I must say it's nice to Finally have a diagnosis!!
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

I am sorry I am not sure I understand ur question?

  I see u and ur children were dx'd with Chiari...and u r so right the size of the herniation does not mean much, it is the obstruction of CSF flow.The wider the tonsil the more likely it is to block flow, it can be long and thin and still allow flow....

  Most herniation's r measured at the mm's few r in the cm's  but far too many Drs react to the size bcuz they do not understand this condition,

it is Drs that know and understand this condition that is rare not Chiari itself.

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Hi everyone I've been looking through this info and am pretty scared.  A family member was just diagnosed.  He has had a few bouts of severe vertigo with nausea.  How effective is the treatment for chiari 1 malformation? And with severe intermittent vertigo would they possibly do surgery?
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620923 tn?1452919248

Hi and welcome to the Chiari forum.

Ur family member is lucky to have u to advocate for them....thank u for doing this for them...far too many chiarians do not have family or friends that take time to understand  Chiari and it's effects.

That said, having a Chiari Dx and symptoms doesn't = surgery....

More testing will need to be done to see if there is a CSF obstruction and overcrowding...a CINE MRI is usually done...then MRI;'s of the thoracic and lumbar spine to look at disk issues, syrinx's, scoliosis, tethered cord, and testing for sleep apnea, ICP, POTS, Ehlers-Danlos*, thyroid issues, and low levels of vitamins and minerals all should be looked at closely.

It could very well be  a related issue and not the Chiari causing some of the symptoms this is y it is important to find out as well as related conditions like EDS* can affect how u feel and heal post op...so u want to know b4 surgery so u can help prevent some of the post op set backs that may occur.

We do have a list of Drs the members here have been to and liked....it is here only as a means to help u research Drs, it is NOT a referral....as not all Drs on the list may be true Chiari specialists and not all may work with ur ins, or u just may not like the Drs personality and that is important.

  It is also helpful to those with this condition to know they r not alone, please ask ur family member to join us here, just chatting with others is such a big help.

  Please ask questions, we will do the best we can to answer : )
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Hello.  My daughter is in the hospital with all of the symptoms that have been mentioned.  This has been going on for 3 weeks now and it just gets worse and worse.  My daughter has been bed ridden and was finally put in the hospital on Monday.  She has been extremely fatigued, headache level of a 20 that is all over the head not a specific area, dizzy, nauseous, she has the feeling of burning up when she goes to stand up, numbness in her legs and alot of neck pain and back pain.  A MRI was done on her head.  If she has Chiari, would that have been detected in the MRI?  For right now, they are just treating her with DEH pain medication.  No real answers yet.
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

I am so sorry ur DD is going thru so much pain and discomfort...and u as a mom are so frustrated and scared.

A Brain MRI should be able to show if there is Chiari....a CINE MRI would be next to determine a CSF obstruction....and then MRI's of the cervical, thoracic and lumbar spine to rule out tethered cord, syringomyelia,ICP, POTS,disk issues, lab work to check vitamin and thyroid levels, neuro exam for ehlers-danlos....

I know it is a lot of info, but it is important that all related issues be checked as well as just looking and finding chiari.

I pray u find answers as there are many conditions with similar symptoms.

Do keep us posted on ur DD's progress and know u r not alone, we r here

   ((Hugs))
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4449394 tn?1354797102
My hands are shaking as I write this message, not from a physical condition, but from nervousness and yes, fear.  

First, thank you for continuing this forum since 2008, I found comfort and encouragement just seeing that I am not alone...

I am active duty and have been suffering with symptoms since my return from Iraq, treated under the PTSD umbrella with short term memory loss, blackouts, severe headaches.  Then in 2010 I was in a car accident that started to cause multiple areas of pain and was simultaneously diagnosed with hypothryroid, fibromyalsia, and a sleep disorder.

I just returned home from another deployment and was being seen for frequent migraines, vision and now speech impairment.  But the results of my MRI was Chiari 1 Malformation due to "cerebellar tonsils extending 6mm below the foramen magnum due to decreased size of the posterior fossa".  I have almost every symptom listed and have been asking my doctors to look for a root cause that identifies the reason my body is just "falling apart" on me, I am only 34.

I am waiting to see a neurologist now, but I just wanted to say thank you for having a place to go were I feel connected and can share and read and find information.
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

First, I have to say Thank you for your service to our country, I truly appreciate all the men and women in the armed forces.

Most Drs do not understand how and y Chiari affects us....many of us have had symptoms all our lives but when u live with something all that time it is "normal" and u do not see it as a symptom and u adjust to it, and move forward, the more u learn about Chiari u may find u have more symptoms then u think u do now.

The MVA can be a trigger to set in motion a flare up of symptoms....sometimes it can be a fall, a sneeze or a cough....even stress can trigger it....

Chiari also cycles so u may be in a flare, and if u relax u may be able to get out of it, but with the stress of the dx many times that does not happen like prior ro getting a dx....we may have had flares but not knowing what the issue was we r able to relax and feel better...

Once u have a DX of Chiari u need to find out how it is affecting ur overall health....a CINE MRI is needed to see if u have a CSF obstruction, then MRI's of ur thoracic, and lumbar as well as the cervical spine to rule out syrinx's,. disk issues,tethered cord, scoliosis..etc...

Then u need other tests to rule out related issues like sleep apnea, ICP, POTS, ehlers-danlos, vitamin and mineral issues and u already know about the thyroid,,..that is linked to Chiari.,....and that fibro dx may be EDS instead....so many of us get a misdx of that....

Do look for a true Chiari specialist, I know being in the military it may be difficult as they want u to see their Drs, but not too many members here that have been military have found the Drs in the system well informed on this condition.,

Always glad to welcome a newbie, but so sorry for the reasons that bring u.
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hello I am new here really need help the last time i seen a doctor he told me there was no need of surgery, and it was just probaly found on mistake.
i have bad sinus problems so really hard to tell which is affecting me! cause apparently sinus issues can have you off balanced as well. so is there any tips to get the days better?
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

many of us r told that it is an incidental finding...bcuz the Drs do not know much about Chiari and how it can affect us...even our sinuses ....there r some many issues and Drs look at them individually instead of connecting them.

Do u have or can u get copies of ur MRI and the report? This will help u get the 2nd and 3rd opinions from Drs more experienced....having the right Dr is key....

We do have a list of Chiari drs, these r names of Drs the members went to and liked...u still NEED to research them the list is NOT a refferal.

What u do in ur daily activities can affect how u feel...listen to ur body and do not push when u r tired or sore.

Chiari cycles...and until u know just how urs is affecting u and ur overall health it is hard to say what might work, except do not over do...we have a list of activities to avoid with this dx.,..that can help some.
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Hi, I was recently in a traumatic snowboarding accident in which I broke both of my ankles and received a concussion. As an avid snowboarder, this is not my first concussion though. I have had horrible neck/shoulder/back pain dating back about two years, with no successful meds or therapies. I also increasingly was becoming more and more fatigued. About a week after I began to start walking again after the snowboarding accident, my symptoms began progressing very quickly and new ones (numbing and cognitive symptoms). I got cervical and thoracic MRI that just showed degeneration on the thoracic and slight herniation in the cervical. With no relief with therapy I went back for an EMG test which was positive for nerve damage on the right side. A couple days later I ended up in the ER after I lost sensation in the left side of my upper body...even my tounge and throat. They did an MRI and found the chiari malformation 1, tonsillar ectopia, tonsils decending 22mm. While I know everything I've read says length doesn't matter, I have yet to find anything as large as mine...it's also says the tonsils are pointed? And no evidence of syrinx (which would have explained my symptoms). It also says distortion of the medulla with clava being displaced inferiorly. With prominent encroachment upon the formen magnum with marked impaction. THEN It says the report was later read by an additional NL and notes that with contrast, there is an active lesion of 7mm on my pituitary gland. I am a 26 year old female that has gone from the picture of health to basically a total body and mind deterioration (not an exageration this is really how i feel) with a brain tumor?? I feel it in my gut that this is not the full story, I can't explain it but I know something is not right. I was referred to a neurosurgeon, who (shockingly) said I need surgery after he tests my blood for the brain tumor. I have no doubt that I am past the stage of having a non surgical option, given the fact that I've been in therapy for months now and on several medications, with no pain relief...the cognitive issues are progressing every single day and I'm getting so scared that my surgeon is missing something. I feel helpless and hopeless at this point....I can barely even make it into work anymore. I don't know where to turn :( please help.
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

I am so sorry u have this condition and for someone as active as u have been I am sure it is not easy to deal with...not that ne of us find Chiari easy to deal with.....

Have u had a CINE MRI to see if u have a CSF obstruction? Checked for related conditions?

Do u know if the NS is a Chiari specialist? Did they tell u if ur Chiari is congenital or acquired? Many times those with Chiari deal with the symptoms as they cycle and we r so use to them we r not aware how we feel is not "normal"...so, u need to know is this acquired from ur accident or just triggered it from it.

Length is not as much an issue as the obstruction of CSF, long thin tonsils do not block the flow, but a short wider one can....so flow is more the issue as well as related conditions.
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Hi, thank you for responding so quickly, as this as been one of my hardest days by far. They have not done a CINE MRI and I can't tell if my neurosurgeon is a specialist. It says he performs these surgeries along with many others, which makes me uneasy. I know there is a center an hour from here though and am wondering if I go there instead. The only other diagnosed issues I have is the the nerve damage and the brain tumor. I've had extensive blood work done and I know he ran more today but just for the tumor. However, for the past month every doctor has been attributing my pain and increasing symptoms to the stress of the trauma or being unable to to walk for two months and this is the first time a doctor looked at it from the opposite perspective...as if my ankles both breaking were a symptom. I don't know much about any other related disorders and by now I have so many confusing symptoms I feel like I'm crazy. They believe mine is congenial, and if I'm honest with myself, I've definitely had all of these symptoms but they came and went and when they came no one could find a reason or relief for me so I figured this was just something I had to live with or that it's normal and everyone feels this way...are there specific symptoms i should try to be mindful of? I have a hard time deciphering what's normal and what's not and frankly I've had SO many symptoms that I've almost convinced myself that it has to be in my head. I struggle with intangible symptoms outside of pain...my brain feels like mush, I'm confused 95% of the time. And I've grown to really dislike and not trust doctors through all of this...
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620923 tn?1452919248

  So is the surgery they r suggesting for the tumor or the Chiari?

Well the symptoms coming and going is typical for Chiari, they cycle....

So many with Chiari can relate to ur distrust and dislike of Drs....it can get very over whelming....but to take it a day at a time and educate urself so u know u have the right Dr for u.

What reasons did ur Dr give for suggesting surgery, this may indicate his experience of lack there of...

I saw a few diff Drs and the ones I went to for the surgery tested me for ALL related conditions as well as ruled out others with similar symptoms.

They explained y testing was being done and showed me on my MRI y I needed surgery.

We r all diff as to how we r affected  one bcuz we r diff and 2 bcuz some of us also do have other conditions as well as chiari...so we can not look to see if our symptoms match....but it is how it affects ur overall health.

Some with sleep disturbances should be tested for sleep apnea...and IMHO we all should rule out EDS b4 we consider surgery as it can affect how we feel and heal post op.

There are certain activities we should avoid, see the list in the Health Pages....

Can u list some of ur symptoms, even if u feel they may not be from Chiari list them, u never know.
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Also has anyone ever had a cycled sweating symptom? About 6 months ago, for about one week, I would wake up in the middle of the night almost soaking wet, for absolutely no reason. I'd go to bed cold enough to warrant a blanket and I'd either wake up completely wet and remove all clothing or I would kind of wake up as I was removing my clothing. Either way this sweating was extreme and one of the few I actually mentioned to my mother. But then, per usual, it of course went away. Once again leaving me feeling crazy. I also feel like my symptoms utterly debilitate me in warm weather. New symptoms keep appearing and old ones just keep getting worse, I feel like something is progressing and it's happening quickly. Is this even possible? If so am I doing something to potentially worsen it? Obviously I know to "avoid head or neck trauma"...as if anyone actively seeks it out :/ until I find a new surgeon I don't know what to do...sit idly by and suffer? Hoping for some temporary relief tricks aside from ibuprofen, especially to counter the extreme fatigue and mental hell i feel like im in :(
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620923 tn?1452919248

  Yup, I do have issues like that my Dr said it was due to having a neurogenic bladder....do u have ne bladder issues u r aware of?

If I have to evacuate my bladder, but have to wait, I get very hot....to the point of sweating....I do not always wake up until I am all perspired....
It is possible for symptoms to flare and to increase...it can be rapid or slowly...since Chiari symptoms cycle it is possible for this to happen as u said.

Keep a journal and see what triggers ur symptoms...u may have certain activities that affect u that may not have affected me....the best advise is listen to ur body....

Take a look at the list on the Health Pages....

Just recently I have reduced the amount of fatigue I suffer from,.much of it can be from pain, the rest for me was I had IBS and other issues, with the RX of probiotics and magnesium and Vit D, and the addition of a antihistamine b4 bed,  I am feeling better on that as well as sleeping better too.
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Yes, I do have bladders. I use to think I was getting UTIs but then it would go away. This feeling keeps happening (and going away).  I know the location of the tumor or my nerve damage could also be causing these things but its very hard to sit back and just wait and suffer. I no longer go to work because of the cognitive and fatigue symptoms that have become unbearable. The more I move the worse the pain gets, and doing nothing while I wait for the results of my tumor and chiari surgery just kills me. I will take a look at that site. Feels better just knowing I'm not alone and not going crazy. :)
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620923 tn?1452919248


U deff r not alone....and not crazy either !

A urodynamics test can help see what issue is going on with ur bladder, I had one and now know I have a nerutogenic bladder as a result of tethered cord.

Also since being decompressed I do not have the same issues like UTI's have decreased dramatically.U may want to see a urologist and ask about testing to see y u r having these issues.....it may be linked to Chiari, but it may not so it is always best to report all symptoms to ur Dr and seek out Drs that can test to see what is going on.
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Thank you :) ill be taking my mom and a list of questions with us to my next appt. ill be finding out the results of the tumor tests as well. After that, I will be getting a second opinion on everything. Thanks for your help, keep you posted!
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620923 tn?1452919248

  Good Luck <3
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http://www.conquerchiari.org/documents/presentations/SYMPTOMS Presentation.pdf

I found this site to be very helpful please take the time to check it out.
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Hi ive jjust come across your post on chairi im still not sure if i have chairi or not but im trying to get as much info as i can as i do have all of these sympthoms and i live in cork also i would be greatful for any information you could give me.

Thanks
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620923 tn?1452919248

  Hi you can send rod a PM (private message ) or a note so he knows you are  trying to make contact as he is not on here all the time and may miss this due to it being an older thread and not one he generated....

I will also send him a note. : )
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999891 tn?1407279676
Hi. I sent you a PM :)
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Hello, I just read your post and I would love for your input. My son who is 12 years old just went for a mri to check his pituitary glands. Well is pituitary glands checked out all good. The problem is while doing the test they found there was a downward displacement of the cerebellar tonsils, particularly on the right by approximately 9 mm with a pointed configuration. My son has not had any problems yet. What does this mean? He was being checked for growth issues and this is what they find? We are having a specialist look at this but no reply back at this point yet. I am scared and not sure what all this means.
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

The comment you made that your son has not had any problems yet...does not mean he is not having symptoms....for those of us that have Chiari can  confirm most of us have had issues/symptoms our entire life but did not consider them issues or symptoms...bcuz we considered how we felt to be normal..and for us is was...if you constantly feel a certain way it is normal...and how would you know it's not...so not until it gets worse do we know something is going on....

Chiari symptoms also cycle so they could flare when he is sick and then the symptoms are considered part of the flu or what ever...and not connected to anything else....

The best thing I can suggest is more testing...find out if he has a CSF obstruction and how his Chiari is affecting him and his overall health....

I know I had issues when I was a kid....but no answers until I was 48...surgery at 49.....so it is not always a rush to surgery....try to relax and educate yourself as much as you can on this condition and research Drs to find the best one for your DS.
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I used to have those episodes of sweating a lot at night. Not real often, but once in a while. I'd wake up hot as hell and sweaty for no reason.

Haven't had one post-surgery.
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Hi Everyone, I have a problem. My 19 year old daughter was having chest pain and was short of breath. She was taken to ER. Where she also had a convolution in front of me. She is 120 lbs. Her doctor had given her an Rx for concerta. 108 mg a day. The Nerologist and cardologist both said she had been overdosed. But they could not diagnos her as an over dose due to the insurance would not cover her stay at the hospital so now they are saying she has Chiari Malformation type 1. and the toncials are 1cm. I dont know if this is really moral. After the seizue she is having problems with her left side hand numb and left foot is weak. Any suggestions? Thanks Hilda
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

I am so sorry your DD is having these issues and it is possible to have a plethora of symptoms and be treated for one as a separate issue only to find later that is not the problem.

Get copies of her MRI and the  report....go to where the studies were done and request them.....and then locate a true Chiari specialist.

Numbness and weakness in limbs as well as facial numbness is common in those with Chiari,....the seizures can be related to the meds she was given or to the Chiari itself,.

More testing will need to be done....CINE MRI to see if there is a CSF  obstruction, MRI's of the thoracic and lumbar spine to check for disk issues , syrinx, tethred cord.....then testing for ICP, POTS, sleep apnea, ehlers-danlos should be done, blood labs to look at vitamin and mineral levels....

I know this can be overwhelming, but take them one at a time....research and educate yourself on Chiari and finding a Dr....having the right Dr is key to helping your DD.....

Know you are not alone.
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My 16 yr old son was just diagnosed with chairi 1 malformation 2 weeks ago.

He was at cross fit working out we it onset.  while doing a pull up hold he got a sharp pain in the back of his head followed by a throbbing continuous pain in the same area. I immediately took him to the ER where we were set home on 2 seperate days saying it was either a muscle pull or headache induce from working out. On our 3rd trip to the ER on day 5 they finally did a CT scan and found one tonsil to be lower then the other and told me to get him in to see a pediatric neurologist.

his pain level has reduced over the 2 weeks to currently a 1 out of 10 from a 10 initially and that is the only symptom he currently has.

My neurologist had Mri's of the Brain,  cervical spine, and CINE flow and all were clear of any issues. his right tonsil is slightly lower then the left (not sure of the actual number) and according to MRI results and therefore states he is within the realm of normalcy, and does not meet the chairi 1 criteria. My neurologist had said he could go back to all activity just no heavy lifting, straining, bearing down activity but I have yet to allow him to go back to anything.

Since I had never heard of this condition I went on line to find out all I could so I can make sure to do anything he needs in order to keep him safe.  I have to say all of the information out there scares me to death. I understand it is not a life threatening condition but rather a life altering condition.

He is a normal 16yr old active, athletic, adventurous kid whose loves to be physically active.  Has played Ice Hockey competitively all his life. and loves to do anything crazy and adventurous.

After reading all I have, I took all of his scans to the Chairi ! Institute in Great Neck, NY to have a team of specialists look into his case.  They contacted me after review his case and set up an appointment for him to see one of their neurologists who specialize in it but not until Jan 15th (2 months away)  

I am a nervous wreck. this is a long time to wait out to get a specialists to tell me exactly what is going on and what I should do for him.  

Its currently ice hockey season and Im not sure if I should let him go back. Im worried that the neurologist that I saw may not be familiar with this condition and be making the wrong call to allow him back to a contact sport.  

It is breaking my heart the thought of taking something away from him that he loves so much and is such a big part of him but I dont want to risk this condition progressing if it can be avoided. obviously I wont let him back to the gym or cross fit so that his doesnt lift any weights. but he is just a kid and loves roller coasters, sports, adventurous activities I hate to pull his whole love of life away if it is not necessary.  

does anyone have any opinion on this.  I am a single parent (my husband was a cop who died in the line of duty) so its just me to make these decisions. I have no one to bounce it off of to see if I am making the right call and cant handle the stress of waiting 2 months to get some information....

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246139 tn?1424375573
I would go back to the main chiari page and start your own question there. Copy and paste this. You will probably get more answers as this is an older thread.  :)
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10169340 tn?1415849761
I am not sure what to say to you about holding back your son from all the things he loves.. It is a difficult decision....but I can tell you that you picked a good place for your son to be checked out...  TCI  is very well known and it is worth the Waite!!!! I my self went there and got diagnosed by one of their doctors after see some many others... Good luck :) ...and try to do what  baccalynnwv suggested..I think she gave you very good advice!! Keep posting this is a good group...  My prayers will be with you & your son..
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Hi I was diagnosed with chiaria malformation last year and fell pegnant I had to have my baby under general anaesthetic im going into hospital for a probe in scull to check pressure and have to get a full mri of my spine has anyone had this its 1 cm down but that was 9 months ago xx
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

Did you have a CINE MRI to see if you have  a CSF obstruction? Did they rule out ALL related conditions? I know that some have had to have the pressure checked  using a  LP but I am not sure what you mean by  a probe into the skull???

Is this Dr  a true Chiari specialist?
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14136849 tn?1433084323
I was just wondering are there any specific pain meds for Chiari  I have the worlds worst headaches dispersable painkillers work to a point then back to square one any help would be nice thanks
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620923 tn?1452919248

  Hi and welcome to the Chiari forum..

No there is not a med that typically works long term for Chiari pain.....it is best to try and avoid activities that may trigger the symptoms and pain....and find ways to relax...listen to your body and do not over do things, these all may help in calming down pain and symptoms.
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I have been diagnosed with chiari nalformation since 2012 and my symptoms were terrible, I had brain freeze, tingling crawling sensation and numbness, combing my hair and washing my face was a task and still is, I refuse surgery because they would have to remove the three top vertebrae to place a shunt, I'm hanging on in there, no surgery yet.
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