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Chiari Malformation Community
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Avatar universal

NEUROLOGISTS...im at my whits end now !!

hi everyone
i was back at the neurologists yesterday and she is now denying diagnosing me with mild/borderline chiari.
she also told me i look fine therefore theres nothing wrong with me :O

she said "i know theres nothing actually wrong, its not like you have brain tumor but we'll do another CT just to prove theres nothing there."

im ready to break down im in agony 24/7 most mornings i cant use my left arm for the pain and numbness but she seems to think its all psychological.
im yet to speak to my GP about seeing a chiari specialist as i havent got the time to breath at the moment let alone go to the GP is there any point in seeing a chiari specialist now that my neurologist is denying the diagnosis ???

i have no clue what to do any more i also suffer from a form of Borderline Personality Disorder so  as a result of all of this my depression is getting worse and anxiety has come back i feel physically and mentally ill and theres nothing i can do about it ?!?!?!?!
7 Responses
12573102 tn?1431705217
Wow sorry that you are having to experience the crazy doctor "rollercoaster"!!!  Whatever you do don't stop pushing, even if it means going to multiple doctors.  You are the only one that knows your body the best.  My neurosurgeon told me last week that the average time line for accurate Chiari diagnosis in today's world is 22 months (because so many doctors really have no knowledge on new research)!!  Obviously your may be one of them since there is such a thing called Chiari 0.......however doctors seem to use this term very cautiously!

Do as much research as you can........this way you will know if the doctor is knowledgeable of Chiari or any other issue you may be having.  Have you had MRI of brain or cervical region??  I would request that since you are having numbness to left arm.   You could even have disc problems in the cervical region of the neck.   Just educate yourself so that you can be armed with information & DO NOT allow yourself to sink into some deeper depression.  Think positive thoughts!!!!  I will definitely keep you in my prayers & pray that you will find the right doctor to diagnose you with the right diagnosis!!
9432311 tn?1432828685
I am reading your post and Lottida's kind words of reassurance. I am very sorry to hear that you are really struggling. One thing I can tell you to support what Lottida said is that so many neurologists do not have any knowledge of chiari malformation. My neurologist (and the neurosurgeon she referred me to) both rather dismissed me as imagining my pain. I was as angry as you are and it is very sad to see someone else struggling. The thing to know is that you have to get to a chiari specialist. And I do not think you need to wait as long as your doctor told you. Where do you live? There is a list of specialists on this forum listed by geographical region. I live just north of the SC state line and I went to New York to see a surgeon who did surgery 2 months after our first meeting. I am recovering steadily. Do lots of homework. Try to find some level of stress relief so you do not aggravate your psychological well-being. And, please keep current on this forum so you can get encouragement and support. You are not alone anymore. We want to help you in any way possible. I hope you are having a better day than you did yesterday.
620923 tn?1452919248
COMMUNITY LEADER

  Deff push for some answers as you are in pain and there is a reason...even if you may not be a surgical candidate now, it does not mean you are not in pain or that it could be from a related condition to Chiari which could be treated.....

If you do not have copies of your MRI and report, get them and ALL tests going forward request copies when you sign in for the test, this will make getting a 2nd or 3rd opinion easier.

Many of the Chiari specialists will review  your MRI and will only schedule to see you if they feel they can be of help...so worth sending those copies out to get some more opinions.
Avatar universal
Thank you so much everyone in being sent for another ct so will ask for a copy when I'm there.
Only reason I cant have mri is I'm extremely claustrophobic and cannot be in the machine for more than 10seconds without going into full hyperventilation and end up passing out I did have an open mri but they wont send me for another one as it costs the nhs too much and I cant afford to go private.

I'm gonna go back to my doctors next week to see what concoction of meds I'm being put on now and see if she can refer me to a specialist or another neurologist

Thanks again
620923 tn?1452919248
COMMUNITY LEADER

  Can they medicate you to help you have a full MRI? Just wondering if that was tried....I know being inside is not easy and sometimes they want us in there for a very long time.....it helped me to keep my eyes closed ....b4 even going in....it helped me, but I do not have claustrophobia. These tests are very important and the better the machine you are in the better info they get...


Let us know what the CT revels....
9432311 tn?1432828685
I am just checking in to see what your progress is with doctors, medication, referrals, and MRIs. I noticed that you wrote on March 28th that you will be returning to your doctor. Have you yet. Please let me know about anything she has suggested. And, keep in mind what Selma says above about medication to help you cope with the MRI. I also keep my eyes closed and have a white cloth put over my eyes in case I do open my eyes.
Avatar universal
I see your original post is over two years old but I am curious how you are doing now and if you were able to get the help you need?  I was just diagnosed this year with Chiari and you were right that doctors, neurologists and even neurosurgeons don't know much about it. I am looking into seeing a Chiari specialist because I am getting no where with the doctors in my area.  
I sincerely hope that you've found a specialist that has helped you!
1 Comments
Hi and welcome to the Chiari forum.

Many of the older threads do not have current posts since the members may only troll the site...to get the attention of a certain member you may want to PM ( private message) them.
What area are you in and do you need any help in locating a Chiari specialist?
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