Neurologist Visit

[Missy131197]

Went to see the Neurologist today.  He was very nice. He is not sure my symtoms are from the Chiari Malformation since the dizziness, trouble swallowing and numbness in fingers, tongue and lips have just been recent. I have always had headaches/migraines, restless legs, slight hearing loss.  He says since I would have had this since birth what changed now. So he is running some visual test for my eyes and one for my ears (they blow air in it).  I am just very frustrated.  Does anyone know of any Chiari Specialist in Florida??

[Missy131197]

That is the same as me.  I turned 40 and I am falling apart. I have always had headaches, just like SelmaS said "oh I should not have pain in my head when I have a BM or jump or shout, laugh or cry" always thought that was normal. when I found out about the Chiari it just expained so many of the things that I have struggled with my whole life and always thought they were normal.

[linnielou232]

I feel your flustration with doctor's.  I had doctor's say the same thing.  I never had symptoms of chairi until I was in my 40's acturally.  My life was acturally normal I thought, then the symptom's started with pain behind my eye, neck, etc.  Every time I went to a doctor I was dx's with something different until I found the right doctor to acturally see I had Chairi.  I felt like I was going crazy also because I know my body and I never was sick in my life.  I had a friend that told me to be persistant and I am so grateful for that advise, and also keeping a journal.  It does help in your long road.  After finding the doc that dx me he explain that we might be born with Chairi but as our body ages our bones get weaker so our skull can't hold up our big brain. LOL.  I told my grand kid's I was so smart my brain no longer fit in my head LOL.  It's not funny but it was a way for them to understand it.  When you find that doctor that is right for you your heart wll know it.  Having Chairi is a long and flustrating journey, but always remember you are not alone and your not crazy.  Not to many people can relate to Chairi because they don't know what it is.  Even explaining it to people they look at me at times like I'm nut's until I let them feel the back of my head and explain to them what has gone on.  Our outside's look good, but our inside's are in so much pain we don't know how to think sometimes.  That is why it is important to write thing's down so when you do go to the doctor you will be more prepared.  Also bringing a family member with you help's too.  There was was many times that they absorbed more than I did.  After I heard the word surgery My brain went some place else and I am thankful I had my daughter and husband there to hear what I didn't.  They also can help with the explanation's of what you are going through.  They see thing's you don't.  Your in our prayer's and good luck with your appt.

[murryj]

I am trying to keep a diary because everything comes and goes. I realized after NS appointment that I forgot so much. Of course I have to remember that I am supposed to write symptoms down and remember where I left the notebook, but I am trying LOL
Like Selma said you have lived so long with things you just adjust and go on. At some point I broke my neck in 2 places and it never occured to me. ER doc said my brain is not registering the pain as pain. Once they gave me the pain shot and I didn't have pain I sure noticed the difference though!
So maybe try writing down syptoms and what you did that day. Even if the doc doesn't care you might find it helpful.

[Missy131197]

Again, I need to hear that.  I am going to set up an appointment with one of the doctor's on the list. hopefully they can help.

[selmaS]

  It is...the problem with having something from birth, u grow accustomed to certain pains and symptoms and consider them "normal" bcuz u always had them....and do not report them.....and Chiari symptoms cycle, so we write much of them off to over doing it, the flu u name it...it is hard to connect the dots...but once we have it is  one of those, and the light goes off moments when we figure out ...oh I should not have pain in my head when I have a BM or jump or shout, laugh or cry....how would u know if u always had it???? These Drs fail to realize that part of this and that with gravity at work, and getting bumped around in daily life things can get worse.

  U will find on the web that Chiari is rare- it's not, Drs that understand and know how to treat it are!

     "selma"

[Missy131197]

Thanks for that, I just feel like I am losing my mind. I need to hear from other people that this is normal.

[selmaS]

  Hi...well it is painfuly obvious u were seen by a NL that has no idea how a fall, a MVA, or even stress can trigger Chiari symptoms to change and get worse.

There is a Chiari NS in Miami.....and we do have a list of drs of the members here, u have to research the drs to find one u r comfortable with....do not assume bcuz they are on the list u will like the dr.....or that they are the best for u....see a few, compare and go with ur gut,BUT educate urself on Chiari as u go so u know what to ask and what ur Dr should be asking u.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  "selma"


http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186