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Chiari Malformation Community
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Avatar universal

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?  
91 Responses
570413 tn?1299536261
Hey!

Chiari malformation is not considered a life-threatening condition.  It can be, however, life-altering.  

First, are you having symptoms?  This is really more important than the degree of your herniation in determining what you can expect or how "bad" it is.  How "bad" do you feel?

Some Chiarians have large herniations, and mild-to-none symptoms, while conversely, some with small herniations have debilitating symptoms.

So, the size of your herniation is not an indication of the " seriousness" of your Chiari.

Have you had a full spine MRI done, yet?  Do you have any syrinx (or Syringomyelia)?  This is also an important factor in determining what your treatment (if any) should be.

I think you are on the right track by doing your research and gaining as much knowledge as you can.  If you have doubts about your doctor's approach, seek a second opinion or third if necessary.

HTH,
Rebecca

555358 tn?1292535661
Hi,

Yes, this is a very serious condition, but it's nothing to panic over. I think Youngwife's discription is spot-on; this isn't necessarily life threatening, but it is life altering.

Not trying to scare you or anything, but it's important that you understand there is no cure for Chiari. You can take medicines for different symptoms and sometimes, if it starts causing serious problems, they may think it important to operate. But either with or without an operation, you'll need to take care of yourself and get regular MRI's. I understand that an MRI every 2 or 3 years is normal. Ask your doctor though - I'm not an expert or in the medical field, just a fellow Chiarian.

As for what to expect. That really depends on a lot of factors. Like Youngwife asked, have they said anything about a syrinx or Syringomyelia?  Syringomyelia is basically a build up of spinal fluid in your spinal cord that often accompanies Chiari and is sometimes the worse part. That's one of the main reasons why I had to have the surgery; because my blockage was starting to cause paralysis.  

What are your symptoms? Chiari and Syringomyelia can cause a ton of problems, in fact the symptoms are so numerous that it's hard for a doctor to diagnose this at all.

I would say the most important thing you can do right now is make sure you have a Chiari specialist! Not all neurologists and neurosurgeons are specialists in Chiari Malformations. Make sure yours is.

I recommend to everyone on these boards to get a notebook and carry it with you. Whenever you feel bad or odd, write it down. It may not mean anything, but then again it may be important. Any questions you think about, write down. That way, when you see the doctor, pull out the notebook and ask away. You don't have to rely on memory and realize you forgot to ask something important later. Also write down his answers and get him to spell things - doctors like using big words :) - so you can research on your own.

FYI: 1 cm is 10 mm.

Good luck and keep us posted.
Avatar universal
Thanks so much for responding.  I had headaches and nagging in the back of my head.  I also have been having issues with my vision, feeling dizzy.  I noticed that I was having difficulty comprehending what I read and staying focused, but I attributed that to getting older.  Geez!  As I read more and more of the symptoms, I could relate to several.  I am going to talk to the neurologist to see if he's a Chiari specialist.  Right now I'm in physical therapy and am supposed to continue until the 23rd.  We'll see!  Again, thanks for your response!
Avatar universal
Hi, I thought that my responses would go directly to you and Shane 99.  Anyway, I have not had my spinal fluid checked, but as I told Shane, I am going to quiz my doctor even more since I have done this research.  The paralysis issue was the thing that got me stressed!   Thanks for responding!
555358 tn?1292535661
I hate that I stressed you out.

They'll need to do an MRI of your spine to detect the Syringomyelia.

I have/had a lot of the same symptoms you've mentioned; Headaches, dizziness, trouble concentrationg, vision issues as well as others, like numbness in extremities etc.

Just stay on top of things. Good luck.
906148 tn?1306246074
I am already finding some comfort in reading the many posts from people all around going through similar situation and symptoms as my self. Yet i still find myself so confused with alot of this. maybe someone can help me even if just a little bit.
I had a ct head in the ER post MVA in november 09.this suggested tonsillar ectopia or chiari 1 malformation. i was experiencing head pain, extremity parasthesias, ringing in ears, loss for words, trouble with speech, balance, nausea etc etc i was sent for an MRI of brain whereas the findings were 2 or 3 small nonenhancing bifrontal foci noted, non specific findings (whatever all that means, noone explained or so much as mentioned to me) AND mild cerebellar tonsillar ectopia projecting 3-4 mm below magnum HOWEVER NOT REACHING CRITERIA FOR CHIARI ONE MALFORMATION.
does anyone know what so called criteria is for c1m ? apparently isnt measured by symptoms or pain suffered. i was told my mri is considered normal with no meds given no further consideration anticipated and no further followups or drs to see other than possibly PT for headache relief?? i dont have headaches persay, i have head pain, constant and worsens thru day by night time i cant hold head up but yet it also hurts to lay it down.
i once read that normal cerebellar tonsillar to be considered "normal" would lay 3-5 mm ABOVE the foramen and if mine are 3-4 below wouldnt that already make them 6-9mm below "normal" position.
i dont know whre to go from here. ive been told nowhere. but the pain and altering in my life is horrible and the stress on top of it has made matters even worse. i am self employed which my work has greatly been affected. i do not have medical insurance but have since applied for state insurance assistance with the hopes of someone helping me knowing they might get paid for it since maybe im being ignored or pushed away becuz i have no coverage and we all know that follow up mris etc are so outrageously pricey. i dont know what to do next.
any thoughts or input is so greatly appreciated. please someone help me.im a single mom of 2 and life is getting harder for all 3 of us because of all of this.
thank you in advance to all!! and have a blessed day!
xoxo ~tracy
620923 tn?1452919248
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

The first question I noticed was what is criteria for chiari I....5 mm herniation...u have 3 to 4 mm which chiari specialists call chiari 0...but....it can be a result of the position u r in while having the MRI (lying down) that can cause this. But most important is the overcrowding and blockage of CSF flow.

Were u checked for other chiari related conditions? like syringomyelia...tethered cord...pusedo tumor cerebri?

Chiari for the most part is congentital ( from birth) and a MVA such as urs can trigger symptoms or agrivate that they r more frquent and thus more noticable.


The issues of where ur tonsiles lie and the opinion of the drs u r seeing depends on their experience with chiari.....there r many that follow older beliefs and concepts....find a dr that is a chiari specialist and u will find better treatment and understanding.

I recently found there is help for thos without insurance....I will get more info on it and post it here in the forum.

I hope u continue to post ur questions and concerns and share ur chiari experiences with us.

"selma"
624074 tn?1263877407
Have you found a Chiari specialist in Geogia?
Avatar universal
Hi, have just been diagnosed with chiari myself last week. The ns wrote this down "chiari malformation, cerebellar ectopia, syrinx and briefly told me it was 4mm and I have fluid in my spinal cord. I wasnt so worried about what he said but the onset of symptons I've had since March 09.   Since March I've had 2 MRI's then finally saw a ns last week to receive my news.  My symptoms have worsened and so has the pain in my head and neck, now I feel like my nerves are pinching down my right elbow, I thought it was because I've had aweful pain through my neck and back.  I couldnt even get hold of the ns for a week or his clinic. I want to push for help because I'm slowing feeling that pinching pain going into my right right wrist and hand.  Getting more numbness in my feel and it a horrible pinching in my shoulder blades, severe tiredness but at the same time I cant sleep...I finally get hold of ns clinic and they tell me there is nothing they can do to help but go to the hospital if my symptons gets worse, problem I have with that is that none of them seem to know much if anything about chiari, I just feel like an experiment for them
Avatar universal
Does anyone know of a chiari ns or specialist in New Zealand!!
999891 tn?1407279676
Hi bub007
I have had a similar experience as you.
I was diagnosed with a Syrinx earlier this year after being treated for a condition for the past two years  called Ménière’s Disease witch has similar symptoms to Chiari. The dx of a Syrinx was made by accident so to speak as I was having an MRI to rule in/out Ménière’s Disease.
The ENT Neurologist I was attending has stated that there is no Ménière’s and he knows nothing about Syringomyelia and has referred me to a neurologist and a ns.
I have done some research in the country where I live (Ireland) and we have an estimated 400 people with Chari, it is not known how many are symptomatic or the percentage with sm. We have nine Neuro surgeons in the country 5 in Dublin and 4 in Cork (where I live) per a population of 5 million people so to get a Chiari specialist is hard, I understand you live in New Zeeland so you may experience the same problems as I have.
Best of luck.
rod44
620923 tn?1452919248
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

We have a member clintsmum...she lost her son last Jan.......she is doing alot of research in NZ......try to send her a PM(private message)

AS rod44 mentioned it is possible for chiarians to get misdx'd  for sometimes yrs b4 they get their chiari dx.

Most of us do need to travel to get to the right dr.....it is possible for u to have issues other than chiari.Alot of chiarians have DDD, spinal stinosis, and bulging disks.
Autoimmune disorders like Hashimoto's thyroiditis is another common condition chiarians also have.

Let me know if u have trouble getting in touch with clintsmum.

"selma"
1059090 tn?1254470401
hi there,

im in newzealand, rotorua and have an 8mm drop, my specialists told me all my scans were normal, for 12 years i have had problems of and on,, august 08  it told specialist to do a spinal mri as i thought i might have MS, they instead found a 4.1cm cyst compressing my spinal cord in T7, i had surgery in october for that, the problem was they then told me of the chiari malformation, and that its 8mm drop and that i need an op, i saw the surgions and they told me it was to dangerous to op and that they think I have MS, so back to specialist, he now it talking about early stages of MS, but nothing is mentioned about chiari, my symtoms have been getting worse over the last yr,
I understand what you are going though,  and how lonely and frastrating it is, but we carry on, I have 3 children and run 2 buisnesses, i decided this was not going to beat me, but sometimes it does, then i get back up and not let it beat me again,

i hope you have found your answers

neava
Avatar universal
Hi, Everyone!
    I'm glad to report that I had surgery in June which, according to my latest
MRI, was successful!  I am still stiff in the incision area, but happy to be able to sing, laugh, cough, strain, and sneeze without that awful headache.  Don't know how long it's going to last, but just thankful for feeling great right now!
Wishing you all the best!
Beverly
620923 tn?1452919248
COMMUNITY LEADER
Hi Peach...glad to hear from u!!

So glad ur surgery is giving u positive benefits.

I also hope, u r able to share ur experience with some of the new members...and don't bcome a stranger.

"selma"
Avatar universal
Thanks much!!!
Avatar universal
Our 9 yo daugher suffers from a chronic blood disorder called Langerhan;s Cell Histiocytosis. She takes small doses of chemo for this disease and it cures the LCH. LCH if a rare blood disorder in which the histios or white blood cells eat through her bones. Sometimes it can be multifocal our daughter's is only multi bone. By checking her for LCh in a CT scan of her spine they have told us twice now she shows that she has Chiari 1. AT first our onc ignored it now she is sending our daugher to a Neuro for more tests etc. We are very upset and scared. Our daughter did complain of chronic neck pain all last winter but it was put off to the chemo and prednisone she was taking. Now we are beginning to wonder if it was this Chiari 1. Does anyone have a child this young with this disorder??
999891 tn?1407279676
Hi and welcome to the CM community.

Chiari Malformation is a congenital disorder and I think can become symptomatic at any, Given that your DD had LCH and is receiving Chemo could have some baring on her CM.

For more information on CM and its associated illnesses visit the health pages here on MedHelp you will find a link on the top right hand side of this page...

ray
620923 tn?1452919248
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I am happy to have u here as a member of our chiari family, and I am sorry the reason u had to seek us out.

Yes there r many children this age and younger that have had the dx and surgery... children actually bounce back better than adults from most surgery.

There r other parents here on the forum as well as grandparents...I am sure they will post a comment. And like Ray said do try and check out the Health Pages here on MedHelp.

If u need help navigating just let us know : )

"selma"
Avatar universal
Hi new to this
but my Daughter was told she had chiari malformation, cerebellar ectopia, syrinx. On the 13Novmber 2009.  She her op on the 27Nov2009 in Hamilton.
Please feel free to contact me Patricia
1041839 tn?1278685446
Hi patricia and welcome to the forum! Did your daughter have the decompression surgery? What about a shunt for the syrinx? I hope she does well in her recovery! Shannon
Avatar universal
Yes my Daughter had a Foraman magnum decompression and expansive duraplasty for hindbrain herniation.  If that makes any sense  to you we still new to all this.

She did not have a shunt for the syrynx but in saying that we are back to the NS in two months and are having a MRI in one.

We are hopping that she will not need one but are also very awere that there is a hight chance that she will need to have one.

Patricia

1041839 tn?1278685446
Yes it makes sense and dont worry about having all the terms right we all learn as we go. Hopefully they can just monitor her syrinx! Did they check her for tethered cord or EDS (ehlers-danlos syndrome)? I'm sorry for all the questions but its always good to have the whole picture :) Blessings to you and your daughter ~Shannon
Avatar universal
Hello everyone,
I was just told over the phone that I have Chiari 1 Malformation based on evidence on the MRI and she also said migraine changes on the MRI, by my new PCP's assistant.  She said the PCP wants me to see a specialist who can better explain things to me.  Makes me nervous the doctor not wanting to explain things to me herself, and I've checked out Chiari 1 information on the internet. I've been sick for a long time, mostly negative experiences with specialists.  I do have kidney disease and thought the headaches and memory issues where related to that, but the BP has been very good so I was confused by the headaches and the memory issues have been going on for awhile just thought it was a part of having a chronic illness, I've had numbness and tingling in my right leg and right arm, lots of pain in various areas of the body that was/is chopped up to Fibromyalgia.
What do I need to know when I see the specialist?
What do I need to share with him or her?
What type of specialist should I be referred to?
Thank you for any help you can provided
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