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?  

[youngwife]

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

[Shane99]

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.

[2GApeachy]

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!

[2GApeachy]

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!

[Shane99]

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.

[PrincessBratt09]

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

[selmaS]

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"

[mama2twobabies]

Have you found a Chiari specialist in Geogia?

[bub007]

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

[bub007]

Does anyone know of a chiari ns or specialist in New Zealand!!

[rod44]

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

[selmaS]

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"

[neava]

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 (symptoms) 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

[2GApeachy]

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

[selmaS]

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"

[2GApeachy]

Thanks much!!!

[TammyRSZ]

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??

[rod44]

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

[selmaS]

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"

[robyn6]

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

[shanmomof3]

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

[robyn6]

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

[shanmomof3]

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

[RosieAngel]

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

[selmaS]

Hi and welcome to the Chiari forum.

Many drs r lost and do not know enuff about chiari to explain to their patients what to expect or what is going on, and rely on a specialist to do so.
I am so sorry u have more than one issue health wise to deal with...many of us here do as well.....and have learned, u need a true chiari specialist in order to get the help u need.

U may be able to get ur PCP to order more testing....a CINE MRI to look for a CSF blockage and overcrowding, Full spine MRI's to rule out a syrinx and tethered cord.

Once u know if u have a CSF blockage or not it helps u move forward with the drs.

We do have a thread on here that has a list of drs names of the members here...u must do ur own research and u may have to travel to get to a chiari dr......but u have to find which dr is right for u.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

"selma"

[RosieAngel]

Dear Selma,
Thank you for responding, I am very unsure of how things will go with the neurologist.  They didn't have an opening until Dec 8 and they were very vague about information they specialize in. Is it common to be told over the phone about having this diagnoses?
I am new to the area and new to the PCP, haven't had good experiences with asking doctors for tests... CINE MRI is that what I already had?  I was about an hour an half in the MRI machine last Friday.  I will try to ask the PCP about more MRI tests and go from there.
Thank you very much for your help,
Rose

[selmaS]

Hi Rose-
No worries ......

A CINE MRI is similar to a reg MRI, but they use a contrast for the second part as well as a clip on ur finger to monitor ur BP to see if u have a CSF blockage.

The brain MRI u had should also have been done with a contrast.

This can be a frustrating and very confusing journey....but hang in there......
All drs r diff as to what they will or not not tell u over the phone...so not sure about the one u r seeing.

Do be sure to ask for copies of all MRI's and other testing as well as reports, this makes it easier to get other opinions.

"selma"

[SchwickLA]

Hi there! I am so glad to find this site tonight. We just got back from UofIA Neurosurgery with our 15 yr old son and I am sad and angry that his condition is worsened. He was diagnosed last year with CM at 4mm - then his followup MRI this Oct found him at 6mm - we just had his MRI today that diagnosed his syrinx, and now he is at 10mm. His neurosurgeon is recommending surgery but is booked until March.

Right now his symptoms are headaches during football, weightlifting, & other sports activities, lightheadedness sometimes when standing...then surprisingly our Dr found that our son lost his gag reflex since he saw him in Oct. We don't know what to think - it seems like we should do the surgery now instead of in the summer - but missing 1 month of school will be tough...He even restricted his lifting to15 pounds now!!! He can't lift his homework!! This whole thing is scary and out of the blue (the original find was incidental - we thought he had a concussion from football game).
I have read the other posts and we don't even know the name of the "surgery" he will have. Doc says that they will make room for the cerebellum and not open the spinal "tissue papers" unless necessary...4-6 days recovery at hospital and then a month at home...I am looking for someone to say he will recover and his symptoms will be relieved and the syrinx will be reabsorbed...Any thoughts are greatly appreciated -my prayers go out to everyone's battles. -Laura

[selmaS]

If u find someone to tell u that...run in the other direction cuz it will be a lie....no one can know for sure, and ur DS may have to avoid sports and lifting for a good yr or more.....it takes time to heal.....

Be sure the dr that does the surgery is a true chiari specialist....U r right the surgery should not wait if he has a syrinx....as it can only get larger...but do try to see a dr that does nothing but chiari and chiari related surgeries....

The drs should not have allowed him to play football with a syrinx and chiari in MHO....but, many like u said consider the finding incidental..when it is not....

May we ask who the dr is?....where r u taking ur son and have u gotten a second opinion?

It sounds like he is not going to open the dura....and many times this type of surgery needs to be redone as it is usually done for kids, but does not restore the CSF flow.....

The month at home may be longer...trust me...I had surgery....and I understand ur DS is younger than myself, but...even a few of the younger ones on here have had set backs..and u can not know who will have those until u do.....so do not count ur days and plan the time....wait and see how things go and  give him all the time he needs to take it slow.

"selma"

[SchwickLA]

His Neurosurgeon is Dr. Arnold Menezes at the Univ of Iowa - Neurosurgery Clinic - Children's Hospital. He is on the editorial board of 5 medical journals - he as performed over 1000 chiari surgeries. Have you heard of him? I am really scared that we are rushing into surgery - how do you know when it is time? Our Waterloo, IA family doc didn't even send us to a Neurosurgeon - they just looked at the mri and conferenced in on a call and said since my son was asymptomatic at the time, just watch it.
My Dr. said that he takes his time to make a decision, but he never goes back on it. Since diagnosis, it has gone from 4mm to 10mm, and now no gag reflex. This weekend he developed a tremor in his right middle finger...chiari related maybe? We are just freaking out! We are waiting to hear from him on surgery date now. As far as the dura goes - he said he would wait until he got in there to see if they could get enough room - The doc said that he always opened the dura until recently when they found success and faster recovery for SOME - it would just depend. Thank you for responding!! I REALLY appreciate it - I saw your pics - thank you also for sharing!
Laura

[selmaS]

I actually had the pleasure to hear him speak at a conference...I found him to be amusing and quite informative...he is a specialist in cranial instability......and uses a pumpkin on a stick analogy.....I think as far as having a well respected chiari dr u have one...it is now ur choice as to if u feel comfortable with him and how he explains the need for surgery.

Most chiari drs leave the choice of surgery up to the patient...and only suggest it if the benefits out weight the risks..and there r risks as with ne major surgery.

No worries Laura...if there is a way I can help, let me know.....

"selma"

[Mache78]

Hi there, I was diagnosed with Chiari  2 years ago. I was having headaches, migraines, tingling in the hands and feet, ringing in ears, poor circulation, balance problems, etc. My MRI showed Chiari and my doctor sent me to a local neurosurgeon. He walked into my room took one look at my three kids and said " No wonder you have headaches all the time". He told my that I had a mild case and that was it. I asked him what to do about all the issues i was having and he sent me to a neurologist. This doctor has tried several meds to help with headaches (which have not helped) and ignored all other symptons. I lost my medical insurance after that and stop going. Honestly I feel like they didnt even listen to me. But now my symptons have gotten worse. Neither doctor ever said anything about doing regular MRI. I did have a MRI of my back and everything was clear.  Is it possible for the Chiari to progress? And I now have medical insurance again, so if anyone knows a specialist near Knoxville, TN, Please let me know.  Thanks!
Christie

[selmaS]

  Hi and welcome to the Chiari forum.

We do have  a list of drs for u to use to research drs....u may have to travel as u may not find a dr as close to home as u might like....u need a true chiari specialist and not just a NS...it is very important that u find the dr that is right for u.http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Chiari symptoms can progress especially if u have a CSF obstruction.....it can lead to the development of a syrinx which can put pressure on nerves and possibly cause nerve damage if left untreated for too long....

I hope u find a dr on the list to research close enuff to ur home.

"selma"

[cheygurl]

I'm 20 and was diagnosed with syringomyelia about 10 weeks ago. But my neurologist didn't tell me anything about it. All I know is it's about 7cm long. I've been doing research online for information that he didn't give me and that's just scary. I haven't even seen my neurologist or heard from him since the diagnosis. I tried making another appointment with him but the secretary in his office says he doesn't want to see me again until September. I don't really think this is right. Considering I wasn't even in his office 10 minutes when he told me and showed me the MRI results. I live in Maine so finding Dr's is hard without traveling, should I just sort of suck it up and find a new one? And any info is nice. I've read up on it, but I know there's differences between size, location, cause, etc. And it's something I'm having a hard time just googling.

[selmaS]

Hi and welcome to the Chiari and syringomyelia forum.

  Finding a dr is tough...finding one that is well experienced and informed even more difficult...and one close to home...well many of us do need to travel...and IMHO it is best to find a dr u feel comfortable with and can help u understand what is going on, than just go to whom is close....or supposed to be good....if it doesn't feel right, find another one u feel better about.

We do have a list of drs names compiled by the members here for u to research, it is to help u get started on ur research, not meant as a referral.http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

  There r several members here that can offer support as they have the same issues as u...
not all of us here have a syrinx...and not all that have a syrinx have chiari...but the drs that treat one r the same for the other : )

  Glad to have u here, sorry for the reasons that brought u.

     "selma"

[steph52497]

i was diagnosed with chiari 1 in may, and all the research i have done is really informative, but really scary sometimes. i am 14 and i do softball and volleyball. i have symptoms like: seeing "orbs"/ flittery things, sometimes they arent bad, but other times they fill all my vision to where i cant see at all... neck pain, difficulty understanding what i read, memory loss, sometimes i get a numb sensation in my arms, very bad migraines etc.; etc.; my doctor gave me meds. to take everyday to help the headaches, and told me to get a pediatric neurologist, she said she would try to find some near us, but im kinda getting tired of waiting. are there any that specialize in chiari in TX? And, is it okay for me to play softball and volleyball??

[selmaS]

  Hi and welcome to the Chiari forum.

U r so right it is a scary thing to look online and read what is out there on chiari.....but, it is also good to be ur own advocate and know about ur condition so u will know when u have the right Dr.
U will want a true chiari specialist...and ask them for a NL that they work with or know of that is close to ur home, as the Chiari specialist may not be.Many of us do need to travel to get to a good well informed and experienced NS.

We do have a list of Drs that we compiled of the members Drs, it is not a referral, and it does not indicate pediatric either...so u do have to do research on the drs.-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Only u know if when playing these sports how u feel afterward, and if u run the risk of getting hit in the head and neck area...I would avoid nething that can put u at risk or cause u more pain.....we r all diff and diff activities will affect us all in diff ways.We do have a list of activities to avoid, but not all activities may be listed -http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

  We r happy that u have joined us, but sorry for the reasons that brought u.

        "selma"

[steph52497]

thanks for the info! Do you know if any of these will see me since i am only 14?

[selmaS]

  Sorry...I have no idea what age  the drs will or will not see.....that is the part of the research u will need to do as well as check with ur insurance to see if they will cover  u .

I wish we had earmarked the Drs that will see pediatrics and hope that those that have been treated will let us know so we can start to mark the list as such.

  "selma"

[lucylu51]

I discovered my 34 y.o. daughter had Chiari after returning from the ER and reading the brain scan report after a seizure on Sept.2011.   I have spent all of 34 yrs. trying to figure out the many changing symptoms that has had our family so puzzled.  The brain scan never really defined the problem; just mentioned the tonsillar ectopia, foramen magnum swelling and middle posterior cranial fossa thinning.   Nothing was said during the drs. workup for the seizure.  And all clinical symptoms that she had been suffering with for the last 3 years, dizziness, nausea, severe sleep apnea, slurring, not to mention the head and neck pain, hearing and eye disturbances, leg weakness along with a profound mental fog and memory loss were just termed "she has seizures".   When we saw an epileptologest (seizure specialist), he said the report just mentioned things that were incidental and not significant.  That it being a rare malformation, you might see many who have it and no symptoms.  My daughter had been told following an auto accident in 1996 with mild head trauma and whiplash;  that she had fibromyalgia.  When at such an early age her back problems became so bad with sciatica and sacroiliitis she was diagnosed with degenerative disc disease.  Being only 20 y.o. and in severe pain, I took her to many Alabama doctors only to be told they saw nothing.  Finally, after trying every conservative therapy, she had a fusion at L5-S1 by a wonderful orthopedic dr. in AZ who proved to us she indeed had severe early degeneration of not only her low back but her neck.   The disc above this herniated, and we ended up in Germany two yrs. later and a renowned Dr. Zeegers implanted an artificial disc at L4-5.  My daughter's leg pain was finally relieved, and she started to live life again and was now married to a wonderful guy.  Four years later (2006) after delivering a baby boy, she could not hold him as he grew heavier.  The neck was hurting and the arms growing weaker.  More film sent to Germany, this time to Dr. Rudolph Bertagnoli diagnosed extreme degeneration at C3 thru C7.

We returned to Germany and artificial discs were implanted (4 level) in this region giving very good relief.  We had tried again in Alabama to get some kind of diagnosis as to the symptoms of spinal cord compression due to the symptoms she was having and could get no help.
My daughter's insurance never paid a penney for the European medical bills.  My husband and I run a small electrical business and used credit cards to help with my daughter's back surgeries.    It worked.
She had suffered so very much and for many years.  The German dr. said my daughter had spinal cord compression from severe degenerated discs and could have been paralyzed.
She was doing so well that she actually toured the city three days after surgery!

My daughter started living once again and trying to raise her son now 6 years old when
a pain at the base of her head (occipital) returned, but not at the prosthesis' site.  We visited three doctors across the country that specialize in artificial discs,  and they said the artificial discs were in perfect order and that the problem of dizziness, extreme constant headaches, weird eye and hearing problems all increasing when the barometric pressure would change with the weather or raising her head to look up had to be some vascular problem.  They could not find a reason.  The gran mal seizures before the neck surgeries, and the seizure in September, 2011 with that "incidental" not important mention of TONSILLAR ECTOPIA is
why I started reading your website and forum.

My daughter is scheduled for surgery on July 27th in Hendersonville, N.C. with Dr. Rosner.
He took such time to listen, examine and show us on the MRI that the tonsils were actually longer- 9mm when she was upright, and he said the backup fluid that causes the most symptoms and gets worse during the extreme weather changes here in AL might be helped by Diamox.  This doctor encouraged us to get a second opinion.  We did that and the diagnosis was the same.   She will probably need a laminectomy at C1 to enlarge the area and some shaving of the tonsils along with the decompression.  

We have had a very trying time these last 13 years, and she is aware of taking time to rest and give herself the best chance for recovery.  Relieving just some of the headache would be helpful along with the extreme pressure in her head.  The neuro deficits may or may not be amended but time will tell.  My son 37 y.o. is having questionable symptoms as is my daughter's son now 7 y.o.  The symptoms are not extreme but knowing what to watch for is terribly important if they
have the malformation.  My daughter has struggled with ADD, my son with ADHD and my grandson has been diagnosed with Dyslexia and like his mother ADD.  I actually have pinpointed the side of the family with the "migraines and even some with seizure activity.  Of course, most information from drs. and text do not seem to think seizure activity can be part of the Chiari diagnosis.  I am convinced through my research and reading that there is definitely
a connection.  My daughter has had many many neuro exams in the last 13 yrs.  The best I have ever witnessed were done in Germany or in Dr. Rosner's 3 hour visit.  What we need more of are good diagnosticians particularly in Alabama.


Thank you for a wonderful forum and invaluable information that has helped me to help my daughter!   I'm a little shy on the posting side but will try to communicate more as we go along.
I will make it shorter next time around!

  

[selmaS]

Hi and welcome to the Chiari forum.

Thank u for sharing ur DD's chiari journey thus far.....out side of hte European visits for the disk replacements it is an all too familiar story.

Many of us do have issues with our disks...

  And u r sooooo right is only there were more Drs that were better able to dx what was going on, we would not have to jump thru the hoops to get answers.

Then finding the right Dr for what ever condition u have is key!...and ur DD is lucky to have a mom that is also such a wonderful advocate for her.

     "selma"

[TaraD7]

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!

[selmaS]

  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"

[louise632]

Hi - did anyone find an NZ specialist?

[louise632]

Hi neava I am in Auckland New Zealand and would appreciate having a chat with you if you are interested?

[louise632]

Selma that is amazing as I have just been diagnosed with Chiari 1 and I have thyroid disease etc.

[selmaS]

  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?

[nanny61]

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

[pmspauly]

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?

[selmaS]

  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/

[ryssamac]

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

[ryssamac]

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

[Cure4chiari]

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.

[Cure4chiari]

Just asking, PRE condition. this insurance is willing to cover you. How and why?

[sheri444]

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!!

[selmaS]

  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.

[Ggirl75]

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?

[selmaS]

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 : )

[Danalynn68]

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.

[selmaS]

  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))

[PCK2012]

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 (fibromyalgia), 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.

[selmaS]

  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.

[imhisjoy]

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?

[selmaS]

  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.

[Ksand]

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.

[selmaS]

  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.

[Ksand]

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...

[selmaS]

  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.

[Ksand]

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 :(

[selmaS]

  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.

[Ksand]

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. :)

[selmaS]

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.

[Ksand]

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!

[selmaS]

  Good Luck <3