Chiari 1 malformation

[Cathie9696]

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.

[selmaS]

  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.

[mel34948851]

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.

[selmaS]

  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?

[capebretongal]

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

[selmaS]

  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 : )

[red2553]

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?