Chiari Malformation Community
Is this Chiari 1
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Is this Chiari 1

I have been having numbness and tingleing in  my arms, hands, legs, and feet, sometimes they even turn blue
I also have a burning pain in my upper back and accross my shoulders that  also goes down to my arms and hands and then it goes from my hip down my leg to my feet .  The migraine headaces are horrible and I  have a constant pressure in the back of my head and neck.  The pain seems to be worse on the right side of my body and it somtimes feels like my head could explode frome the pressuse and pain behind my right eye. Also my lab test showed my body was not producing any b-12.   I had an mri where my dr was checking for somthing else in my neck and the malformation was found but he says that it is nothing to worry about and is very common.  He wanted to  send me to a pain management dr.  I don't really think he belives me about the symptoms. Please help!!

PS.  This Has been going on since 1998
  
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

It does sound like ur issues can be chiari and chiari related issues.....u will want to get copies of those old MRI's and get some new ones done to see if there have been changes...but, u really need to know if u have a CSF obstruction...and if a syrinx has developed....that can be something to be concerned about and needs attention.

The fact ur body is not properly absorbing vitamins could indicate a related condition Ehlers-Danlos....so do get a full check up.

We do have a list of Chiari drs...but u do need to get those MRi's and see if ur PCP can order new ones to see if there r changes.Once u have the dx, u should be able to get into see a chiari NS.
http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Research all Drs on the list, as it is not a referral, only a list compiled by the members of their drs.

   "selma"
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

It does sound like ur issues can be chiari and chiari related issues.....u will want to get copies of those old MRI's and get some new ones done to see if there have been changes...but, u really need to know if u have a CSF obstruction...and if a syrinx has developed....that can be something to be concerned about and needs attention.

The fact ur body is not properly absorbing vitamins could indicate a related condition Ehlers-Danlos....so do get a full check up.

We do have a list of Chiari drs...but u do need to get those MRi's and see if ur PCP can order new ones to see if there r changes.Once u have the dx, u should be able to get into see a chiari NS.
http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Research all Drs on the list, as it is not a referral, only a list compiled by the members of their drs.

   "selma"
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1674412_tn?1318872468
I do have copies of the mri and its not that old only a couple of months but it was not to check for chiari  it was for somthing else  
Thank you so much for your info
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620923_tn?1416285879

  That is good u have that and they r not old, since u said this was going on since 1998 I was not sure how old the MRI was.

If u had an MRI done then, u should also have a copy of that one too, as changes most likely took place.

  Please keep us posted on ur progress

    "selma"
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1306714_tn?1327260680
It's it awful when you doctor doesn't  believe you.  I have had that problem too.  It was very helpful for me to have a family member go with me to all my doctor's appt. because they can also speak up for you and your condition's.  I have a folder with all Mri's and other doctor report's so you can take it with you to all doctor's visit's if you seek other opinion's.  I know this has helped me and also save's time.  Just keep being persistant  because you will find a doctor out there that will understand your issue's.  By reading your symptom's it was as you were describing me and my symptom's.  That is why every time I went to a doctor they diaganois me with something else  because Chairi is had to find unless they are acctually looking for it.   My headaches got so bad that I would acturally cry just to release some of the pressure.  I hope you will find your answer's.  Let us know.
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1674412_tn?1318872468
No I have only had one mri in 98 they just called it a pinched nerve and let it go nothing else was ever done untill the pain started progressing
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1674412_tn?1318872468
Thank you , and my mom has been going with me but we really don't know what to say any more whenever he says the malformation is very common and he does not think my headaches are related
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620923_tn?1416285879

  Get copies of that old MRI and find a Dr that is well experienced with chiari to give u another opinion....ur Drs obviously do not know how it can affect us.


   Use this list to research drs- this list is not a referral but a means to help u with researching drs-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

      "selma"
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1674412_tn?1318872468
ok Thank you I have been looking into a couple of those drs
I am go to have to do something with pain getting worse and worse
again  thank you so much
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620923_tn?1416285879

  Not sure u r aware, but chiari symptoms do cycle...so at times u may feel I am better and then u back off getting answers, this is typical chiari and how it goes...so do not think it went away...it may calm down, but depending on what u do activity wise u can cause it to flare up too!

   "selma"
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1674412_tn?1318872468
well my dr finally ordered a brain mri and now he is saying after he has reviewed my case he now thinks the chiari is causing all of the symptoms and I am trying to get a apt with Dr **** Kim in Houston

also including a link for some info about chiari from Dr **** Kim
http://www.mhmni.com/MedicalProfessionals/content_tertiary.aspx?id=112
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1674412_tn?1318872468
https://memorialhermann.adobeconnect.com/_a976765836/p98w2t7l8ho/?launcher=false&fcsContent=true&pbMode=normal

Better link to Dr.Kim's Info
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620923_tn?1416285879

   Hi...thanks for sharing the link...it is quite interesting how detailed the Dr is ....

  Let me know if u get in with Dr Kim

      "selma'
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Avatar_f_tn
I have had this illness for a while now my first diagnosis was maniers disease then ad i continued to ge worse they found the malformation which was actually on the original mri.  It took a long time for me to convince the doxtors my syptoms (symptoms) were real. They said all this things shouldnt happen but they do. It seems to me they dont really kbow about this disorder.  This illness has robbed me of my life i am sick more then im not and all they want to do is give me nacotics. They say i could get a surgery but the risk is highr then thr benifit. I cant see a doctor outside my health plan so i am trying a holistic approch my synptoms are better but there are so many things that i cnt do any more it is sad my life has become this way
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

It is very true that there are many Drs not well informed or experienced with Chiari and the related conditions.

May I ask what tests and MRI's u have had to this point?

Is it possible for u to send ur MRI's and results to a Chiari specialist for a consult?
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