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Chiari 1 malformation

Is their such thing as mild chiari malformation.  my husbands MRI just came back and said he has right sided assymetrical chiari malformation 7mm below.  His Dr. does not seem to concern however his symptoms (constand ringing in right ear, weakness in limbs, shorterm memory loss, hands swelling, dizziness etc.) have all come about  withing the last two months but slowing coming togeather over the past two years and progressively getting worse.  Whata do I do.

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620923 tn?1452915648
COMMUNITY LEADER

  There are more tests to be done.....CINE MRI  and MRI's of the thoracic and lumbar spine....

And then testing for related conditions.....EDS, ICP, POTS (which can affect heart rate and BP)....

Use the link above to look for Drs ...keeping in mind the list is not a referral nor an endorsement for those listed on it....use it to research the Drs to find the right one.
Helpful - 0
Avatar universal
No, they did an MRI and found it when he went to the hospital ER for passing out and headache with high b/p and very low heart rate.
Since then he has seen neurologist , did EEG, and now a neurosurgeon.
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620923 tn?1452915648
COMMUNITY LEADER
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum,

We do have a list of Drs for you to use in researching Drs.....the list is not a referral nor an endorsement for those listed on it....

Also keep in mind you may need to travel as many of us do go out of state to get to a true Chiari specialist.

May I ask did they do testing to see if he has a CSF obstruction  or any of the related conditions?
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Avatar universal
My son is 37yr old and has just been diagnosed with Chiari 1 with a tail of 4.6cm.He has all the classical symptoms and is getting worse.  The neurosurgeon here has done mostly children and teenagers. He is willing to do the surgery but he has not done adults. We are looking for someone in Oregon area that has done allot of Chiari 1 surgeries for adults. Does anyone have any idea who?
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620923 tn?1452915648
COMMUNITY LEADER

  I forgot to mention that there is a well respected Dr in the Baltimore, MD area that does clinical studies and will do testing and surgery at no cost to u again if u qualify for the the current study going on.....

We do have an older thread with a link to check what they are looking for in the next study.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Have u looked into state covered medical INS?...I know there is also emergency INS for those that need it.....something to look into, contact ur state representatives office and ask how u may qualify.

I use to have the heavy arm/hand in the AM too....I felt I was dragging it it about....I have not had the issue since my surgery.

Do check into what INS u  may be eligible for.
Helpful - 0
Avatar universal
I got an MRI in 2008 that showed I was born with Arnold Chiari Malformation 1. Since 1994 my doctors simply believed I had a pinched nerve (tingling/numbess in right hand). I was going to have surgery but lost my job in 2009 and haven't had health insurance since. Lately, it seems the numbness has gotten worse. I've woken up sometimes to discover that my hand is numb to the point of being unresponsive. Sometimes it takes a few minutes of "willing" my hand to move in order for my feeling and dexterity to return. Has anyone experienced anything like this?
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Thank u for sharing a Drs name, if u wouldn't mind, please add the name to our Drs list thread....it will make it easier for members to locate.

May I ask does this Dr treat both adults and children?
Helpful - 0
Avatar universal
I know this might be late but just in case it's not and you are still looking or to help anyone else, there is a wonderful Neurosurgeon Dr in Springfield Missouri who treats and specializes in Chiari. His name is Dr Sami Khoshyomn
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and we,come to the Chiari forum.

Meds generally do not help with Chiari HA pain, and more testing should be done to see how ur chiari is affecting ur overall health and what other related conditions may be underlying.

Finding the right Dr is key, u need one well experienced with Chiari...not all are...so u also need to educate urself on Chiari.

Helpful - 0
Avatar universal
I have chiari type one and have been put on fifty mg of amytryptline a night which is rubbish, I have constant headaces, blurred vision and dizzyness. Has anyone got any suggesions please
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Not all of us will have a Dr well experienced in Chiari close to home....
We do have a list of Drs other members here have been to and liked it is here for u to use as a tool to research them, it is NOT a referral or endorsement.

Please find the list in the health Pages- http://www.medhelp.org/health_pages/list?cid=186

The DX of borderline Chiari is just hogwash, as u said u know U and u know u do not feel right....keep pushing  to get answers and getting the right Dr is key.
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Avatar universal
Hello,

So I too have been doing loads of research. In 2011 by accident when I had MRI for shoulder and neck, it was found I have Chiari 1 as well cerabellum tonsils 4mm-7mm. I was only told needed surgery for the tear never heard mention of Chiari. 1 mth ago went to a new MD for headaches, she read MRI told me what it said, sent me to NS, he ordered new MRI, went in today was told I have "borderline Chiari, wants me to come back to see his partner associate for 2nd opinion as he believes I could go w/out surgery. My syptoms since I was 14, (now 43) daily, chronic headaches, never a cold always right to phenomia,many migraines (keep Imitrex with me) bad neck pain, arms and legs always numb, horrible sleep apnea. Went to Chiropractors, allergists, pain clinics, you name it. Any one know of a DR that is in Michigan ( I live between Grand rapids and Lansing). I know ME and know there is more going on and want a chance at a better life and to get off all these various pain meds.
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Thank u so much for sharing this with the members here.....I am sure it may help a few of them.

Have u had surgery ? Do u have Chiari as well as a syrinx?
Helpful - 0
Avatar universal
Hi Everyone!   I have a syrinx at T2-T7 that causes joint pain sensitive skin...(sunburn like )headaches and a lot of other symptoms. My neurologist suggested I get a cream that was originally designed to treat a lady who had a tumor in her face and when she had it removed she suffered from severe nerve pain that was  unbearable.  The cream has an agent in it that makes it quickly go deep into the tissue and gives lasting relief. You apply it 2 times a day and it has made a remarkable difference in my quality of life. Bobby Orr the hockey player endorsed it and from what I heard help fund the research for it. Their are a variety of types  LivRelief for pain LiveRelief for nerve pain etc. if you guys are like me I figured I'll try anything !!!!!! once. I was amazed at the results. I hope this will help some of you get by day to day as it has me. LivRelief is sold at shoppers drug mart and quite a few other mainstream drug stores. Good luck everyone  Capebretongal
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

  I know, it does not matter how BIG the name of the hospital if they r not doing research in Chiari they will not be of help to u....and too many fall for the BIG name thinking that is the best place to go, and usually it is not.

It is like u have a foreign car with transmission issues...do u go to a well know chain that does repairs, or to the local mechanic that specializes in foreign transmissions?

We do have a list of Drs in the Health Pages and also listed here as a thread.....the list may not all be true chiari specialists, but it is a place to start with ur research.,....and be advised u may have to travel to get to one as u may not find one close to home....and it is well worth it to travel then continue with Drs that do not have a clue.

  Dr Di left for "health" reasons...or so I read somewhere, I am not really sure of what really happened as so many stories went around, but suffice it to say he is no longer practicing.... There r other Drs at CC, and inbtwn Ohio and CA....there is a Dr Frim in Chicago, and  Dr Menzes  in Iowa, and Dr Oro in CO, -http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Be advised this list is not a referral, just a means to help u research Drs.

If u have ne other questions, please ask : )
Helpful - 0
Avatar universal
Hi.  My son's Chiari Type 1  is 7mm.  His symptoms started 12 years ago at age 13, but no one would listen.  He had dizziness, vision problems that have gotten progressively worse...blind spots, flashing, and now balance issues that doctors  attribute to silent migraines.  We have been to several optho and neural opthomologists. I suggested we go to a neurologist, who diagnosed the Chiari.  They are all in lala land.  No one suggested anything, and we are talking Stanford!!!!  They all said his eyes were fine, but suggested nothing,... didn't even say that may be he should see a nuerologist,...and I can see time is of the essence.  Does anyone know of a doctor in Northern California? They all seem to be in the mid-west or east coast. No one really seems to understand the whole gamut of symptoms except the people suffering.  How many people have it.  Wjere did this Dr. Di of the Cleveland Clinic go?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I am so sorry both u and ur DS have to deal with these issues....

It is diff to locate Chiari specialists near home and some may have to travel to get to one...we do have a list of Drs that members here have been to and liked, it does not mean all Drs on the list r true Chiari specialists u need to research all the Drs on the list as it is also not meant as a referral.

Please feel free to share some of ur symptoms with us as we can share what we did to help with them...and know u r not alone : )
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Avatar universal
I have a chiari and my son was just diagnosed with one last week. Both are 5mm. Our doctor doesn't believe they cause real issies, but we both suffer terribly. I would like help findjng a specialist in bay area California if anyone has resources. Tha ks so much. My quality of life is crap and I feel really alone. Gia
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Until u have further testing there is no way to say u can post pone treatment...I deff would have the testing to see just how ur Chiari is affecting ur overall health...so u have a CSF obstruction etc.....

If ins is an issue look into the clinical trials....we do have a link, just use the search this community to find other threads on the topic.
Helpful - 0
3199560 tn?1345345232
I had ct scan (w and wo contrast), for headaches and double vision and dizziness  and probs with balance.  I have occasionally experienced little problems with fine motor skills, high pitch ringing in ears, and a few other symptoms that may or may not be related. My doctor said she doesnt know anything about chiari I (which is what ct report said was probleme.  Report also recommends mri.)  My question is this: I dont have insurance (to speak of... It ONLY covers office visits and some lab work) Is this a condition that I can ignore?  I cant afford treatment (currrently unemployed and therefore no real insurance).  I had to scrape and scrounge just to get the ct scan, because that isnt covered either. SO  is this really something I can not worry about.    I did go to doc because of dizziness and balance issues.  
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

We do have a list of activities to avoid....http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

  It is not that u should not play an instrument, it is just the position may be difficult on ur shoulder and neck area depending on which one it is....

As for singing some of us have had our voices affected  so singing may be difficult....

But it is not something u should not do....

U have to listen to ur body as to what u have effects from after doing the activity....
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Avatar universal
If you have chiari, what are you not supposed to do.  Example:  Jump up and down , do heavy lifting , boxing, running.bounceing around, playing a musical instrument ,singing.
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