Do I have symptoms of Chiari malformation?

[jerrydub]

Hi Everybody, this question is for SERIOUS people. I wanted to just say that I'm glad I came upon this forum..Please, I know this post it a little long, but If you can take time to read this post, I would greatly appreciate it.  I think I may have Chiari Malformation symptoms. I'll list what happened and my symptoms..so here goes,  One day..I was sitting on my friends trunk on his car..he was already sitting in the car.and being a prankster, he turned on the engine and drove away at about..15-20 miles per hour..My body fell off the car and the back of my head was the first to greet the concrete.  I was laying on the floor and immeditley sat up and then I fainted for about 8 seconds. Head started to hurt for about 1-2 days.  About 1-2 years after my head trauma accident, everytime i turn my head left to right..I hear this fizzing/pop rock/sandpaper like noise in the same place I had my concussion. Also, the fizzing noise can be heard sometimes when I dont turn left to right, and it would last about 5-8 seconds. Overtime, I have also had headaches (not normal), but like a keen/ sharp headache in the very same spot.  I also get a numbness/(EX. sitting on ur leg too long) in my face,body, and hands somtimes.  This terrifys me as I dont evenn know what this can be.  I have had CT scans, MRI scans, and MRA scans for what I thought to be a brain anuerysm, but nothing showed up on the scans.. Now that I came upon this site..I'm afraid I share alot of same symptoms here. Do you think I have Chiari?

Thanks...

[Jennyfoo]

Have you seen the reports from your MRI yourself? If not, get a copy of the report. It you have tonsilar herniation, it should be on there. I wouldn't trust a regular neurologist to tell you if it showed up, after all, mine told me my MRI was fine, normal. I'd ordered a copy of the report and my pcp had already gone over it with me too.

The MRI is the best way to tell if you do have Chiari. You obviously got knocked pretty well. You could have suffered brain damage that's causing your problems, messed up your neck, etc. Sounds like You need a head and cervical MRI.

[pamk5]

Jenny is right, dont rely on them to tell you that you have Chiari.  Get a copy of the report and your scans to take with you to a NS to review.  I was seen in the ER after a pretty severe rear end collision.  They told me I had a concussion.  Later when I had my results chiari had shown up on that scan but they hadnt told me.  "I dont see any abnormalities on your cat scan, must be post concussive syndrome"  Apparently, it can show up on the CT but  they cant tell the extent of the herniation like they can on an MRI.  Good luck to you!

[dkdean]

Yup, find a NS to review your MRI...the herniation will be the piece that tells you whether or not you have Chiari....it's not something just based on symptoms b/c the symptoms mirror so many other things.  GL!

[selmaS]

Hi ... is possible after an injury like that to awaken the symptoms or to have them increase that they r more noticeable.

Another issue is with an injury like this is the possibility that u may have developed a syrinx...when was ur last MRI?....and what area was studied?

Ask for copies for the MRI on disk form as well as the reports.

"selma"

[jerrydub]

my last MRI as about 2-3 years ago and the area that was studied was for a brainanuerysm..because i thought i had one..but apprantley not.

[selmaS]

Well u r over due if u r still having symptoms.....ne MRI older than 6 months with new symptoms is out dated.

"selma"

[jerrydub]

Thanks for the advice, do you know any Chiari NS in california that you would highly recommend?

[selmaS]

Well there is one that a few members have gone to, but since I did not, I can  not recommend him...I do suggest u research him to see if he  is right for u...not everyone meshes if u know what I mean.

In fact the dr I was thinking of isn't on our specialist list.....

CALIFORNIA

Dr. Jorge Lazareff, MD
  Specialty: Neurological Surgery; Director Pediatric Neurosurgery
  Ronald Reagan UCLA Medical Center
200 Medical Plaza, Suites 140
Peter Morton Medical Building
Los Angeles, CA 90095

Phone:
[phone] Patient Appointments

  Contact [phone]
Fax Number [phone]

Paul S. Jackson, M.D. , Ph.D.
Palo Alto Center
795 El Camino Real
Level 3, Lee Building
Palo Alto, California 94301
[phone]
Deputy Chief of Neurosurgery -- Stanford University School of Medicine
Assistant Professor-- Stanford University School of Medicine

[jerrydub]

Hi, Is chiari malformation the same as CSF leakage?

[selmaS]

No....chiari malformation is the malformation of the skull where the cerebellum is housed....the area is too small and it forces the cerebellum tonsils down onto the brain stem.

A CSF leak is where there is a tear in the dura and allows the CSF fluid to leak out...the HA's r severe.

Chiari can affect CSF flow.....

[jerrydub]

Thanks selma =]. By the way..If I go see a chiari specialist, but I have a CSF leakage. Can Chiari NS's still help me?  I ask this because I have no insurance..and it ***** because I'm on my own with coming up with the money for appointments and MRI scans.  ***** that I may have a high chance of Chiari's and I'm only 22..

[selmaS]

Yes, they should be able to help u...may I ask y u feel u may have a leak?

There r things u can do to help the leak seal on it's own....

[jerrydub]

Well..first of all..when I sit up at times, I get this..fizzing / pop rock sound in the back of my head for like 4-8 seconds.. it gets worse when im hungry and when im sleeping for some reason. It just..Sounds like something leaking you know? From your knowledge...what is the fizzing sound? I never had it before the head trauma...Thats why I feel like I may have a leakage..or more likely chiari.

[selmaS]

Well many times this sound can just be things settling inside ur neck....bones, CSF...whatever, but it is in close proximity to ur ears and why u hear it.....

A leak would be noticed more as fluid in ur ears, nose or mouth.......

If u do indeed have chiari, u may have a CSF blockage......

"selma"

[jerrydub]

Hi, does chiari malformation affect decisions, thinking, or personality?

[selmaS]

It can.....we get what many refer to as brain fog...it is diff to concentrate,think...remember....and we can get short tempered as we r in pain.

We also have to avoid certain activities to help avoid feeling worse, and deal with people that do not understand regardless of how many times we may explain it so we do seem to change in personality....we do tend to be more quiet, as being loud just plain hurts....

"selma"

[jerrydub]

Thanks Selma, the people on this forum are lucky to have you on here =]

[jerrydub]

hi Selma, I was wondering about the fizzing sound that I hear in my head, is it possible that it is Hydrocephalus? What are your opinions? Im planning to travel to see a chiari specialist in a few weeks...Thanks.

[selmaS]

HI...many feel it could be the CSF...but it can also be the nerves firing and mis firing......especially if close to the ear canal it would sound like fluid flowing or fizzing......

I pray ur appointment goes well...do post an update : )

"selma"

[jerrydub]

Hey there Selma, I was wondering about the CSF blockage you think I may have, After my head trauma, I have received an infection.. that originally started in my eyelid..but quickly spread into my bloodstream and now I have MRSA. In your experience and knowledge, do you think an infection can be caused by CSF blockage? By the way, I'm traveling to Taiwan on friday for the chiari specialist checkup and I will post an update when I get back.
God Bless =]

[jerrydub]

By the way, If i go to a chiari specialst, will he/she know if i have hydrocephalus? thanks.

[selmaS]

U r going to Taiwan??Sorry, I am not sure y  u r going there...what drs r there?....
MRSA is not something that will cause a CSF blockage or vise versa, but something u do not want that is for sure...it is hard to get rid of.

The drs if true chiari drs should know what issues u r dealing with be it Tethered cord, hydro, Ehlers-danlos, sleep apnea...a syrinx, and a CSF blockage they show be able to see it pick up on it and look for it.

Good luck with ur appointment I can not wait to hear all about it....how u found the dr is at the top of the list : )

"selma"

[jerrydub]

Hi, I have no insurance..and my father is living there, he said that he found a chiari nuerosurgeon..are the doctors at Taiwan that bad?

[selmaS]

I know nothing about the drs there...this is y I asked...

May I ask how ur father found this dr...I am intrigued....and it may help others in that area to have  someone listed for there that is able to help : )

"selma"