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4013221 tn?1349664044

chairi malformatiom

since 1996 i have had terrible headaches that continued to get worse i was refered to a neurologist said i had cluster headaches, i was put on medication didnt work then came the rebound headaches they said it was and then they treated me for migraines i have been on antidepressents topamax maxsalt  pain meds all diffrent types of medication nothing worked they have  been disabling me for two years now i have pains in my neck my spine lower back in my face i experience numbness impaired vision very unbalanced running into things everyday is terrible due to the pain it hurts to turn my head layon my head lay on back for certain period of times the pain is so intense i cry sometimes scream they started giving me shots in the head every month for one month and then every two weeks for 4 months it made it worse i have passed out not knowing if due to this the ER said it was neuropathy/ peripheral im so concerned and upset that no one can help me or give me a correct diagnosis the quality of life is poor and i need to know what needs to be done or what it could be



This discussion is related to Chiari Malformation.
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Avatar universal
Hi! I'm new to this forum but not new to Chiari Malformation! Sometimes I wish I was but then I wouldn't have had the opportunities to meet some amazing people, new friends, and make mistakes so that my boys won't make them when their Chiari become symptomatic! I noticed that you are from Shelbyville, TN. I live in Lawrenceburg. I know that this discussion has been a lot about drs. I've gone to so many from here, to Birmingham, to the West coast & the East Coast. I've learned that in order for me to be a mom that fights the pain of childhood physical sexual abuse, depression, and so many syndromes, diseases & disorders that I use the whole alphabet when filling out my medical history sheet; I have to have the best of the best to attempt to figure me out! And they haven't succeeded in that yet but they now finally believe me that anything they were taught in med school doesn't apply to me because if a medication should knock you out then I'm wide awake! If a bone is supposed to be small then mine is large or there may be two. If an area is supposed to be cartiledge then mine is bone! I've finally cried out all the tears of embarrassment of being different & them asking if they could show this to another dr or use it in a study. Now I'm mad, well that's not the word, I'm frustrated! I just want to be fixed!! So I refuse to waste anymore of God's money that He has entrusted us with on drs around here. I went to TCI in NY and unfortunately had a horrible experience. I believe that they are great drs, very disorganized, money & surgery happy. I felt very mistreated after my surgery. I was actually contacted by a lawyer to be a part of a class action suit against them. Although I know that they mess my body up more than it already was, I did sign the dotted line agreeing to have the surgery even though it was supposed to be done by my surgeon it was instead done by a surgeon I've never met to this day. I'm not someone who will sue but all trust is broken so I won't go nor recommend anyone to go there. I'm currently seeing Dr Fraser Henderson in MD and thinking about seeing Dr. John Oro in CO for a 2nd opinion. I won't be operated on w/o a 2nd opinion & he is the next best in my opinion. I hope that you are feeling better & have gotten some help!!!
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Avatar universal
I was trying to say that she might have CSF leak just like me; all kinds of headaches.  I have very high tolerance for pains, so I never realized that the headaches were positional and that might have "helped" to damage my hearing.  

Her symptoms started quite sudden, it can not be CM.
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620923 tn?1452915648
COMMUNITY LEADER


  I am not sure I understand what u r trying to say...???? Or ask.
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Avatar universal
It is very disturbing that some doctors think that a minor trauma can trigger symptoms of preexisting Chiari.  If the brain sags because of CSF leak, the decomp. surgery will sag it more and more miseries.  I had been through similar pains after an auto accident.  My brain did not sag much, but I am deaf on one side and the other side has nerves in poor shape.  It is low pressure in central nervous system because of leak.
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4186651 tn?1357830957
There is a Chiari Institute in Great Neck NY.
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620923 tn?1452915648
COMMUNITY LEADER

  The ER Drs r not the ones that can help u.....u need to find a true Chiari specialist......

  Make sure u r getting copies of all ur MRI's and the reports, if u do not have them, call the facility where the studies were done and request them...and make copies and send out for review.

We have a list of Drs for ur use to research Drs, it is not a referral and u do need to research all Drs on the list as all may not be true chiari specialists but did treat a member here. The list is posted as a thread on this forum and as a list in the Health Pages-http://www.medhelp.org/health_pages/list?cid=186

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4013221 tn?1349664044
i have been in emergency department 3 times in a week i have had ct scan mri of brain and neck still no answers so frustrated the symptoms are so bad its disabling now idk what else to do no Dr. will listen and now numbess and tingling is eveyday  like stroke symptoms what dr says but nothing they can find out the pain is unbarriable and disruptive to me everyday so scared somethings going to happen before i truely get answers not sure on what other steps to take all test come back ok
Helpful - 0
4013221 tn?1349664044
shelbyville tn
Helpful - 0
1306714 tn?1327257080
I feel your flustation when getting the right dx'd.  I went to 3 NS all together and 1 said. "I could operated, but I'll give you a 50/50 chance of it getting better, 2nd said. "I was a candidate for surgery".  Each time I left these places I was in total tear's because I knew I couldn't keep living like I was. Finally my 3rd most dear NS told me my hernination was due to the shape of a cone and it was blocking my CSF.  He listented to me and he did operate which I have no regrets in having done.  Just keep bein perisistant and you will find a Dr. out there that you will find that can help you.  It's hard to get this run around when you know something is wrong and we ususally get pushed away.  Know we are with you and will help you get through this.  Best of wishes.
Linda :)
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1994417 tn?1328002069
Hi Where are you located?  I'm in Melb :-)
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