Chiari Malformation Community
Do I have symptoms of Chiari malformation?
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Do I have symptoms of Chiari malformation?

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...
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Avatar_f_tn
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.
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1435895_tn?1304294841
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!
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1268921_tn?1288922656
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!
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620923_tn?1405964489
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"
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Avatar_m_tn
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.
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620923_tn?1405964489
Well u r over due if u r still having symptoms.....ne MRI older than 6 months with new symptoms is out dated.

"selma"

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Avatar_m_tn
Thanks for the advice, do you know any Chiari NS in california that you would highly recommend?
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620923_tn?1405964489
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:
(310) 794-7700 Patient Appointments

  Contact (310) 206-6677
Fax Number (310) 794-2147

Paul S. Jackson, M.D. , Ph.D.
Palo Alto Center
795 El Camino Real
Level 3, Lee Building
Palo Alto, California 94301
(650) 853-2919
Deputy Chief of Neurosurgery -- Stanford University School of Medicine
Assistant Professor-- Stanford University School of Medicine
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Avatar_m_tn
Hi, Is chiari malformation the same as CSF leakage?
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620923_tn?1405964489
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.....
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Avatar_m_tn
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..
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620923_tn?1405964489
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....
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Avatar_m_tn
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.
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620923_tn?1405964489
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"
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Avatar_m_tn
Hi, does chiari malformation affect decisions, thinking, or personality?
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620923_tn?1405964489
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"
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Avatar_m_tn
Thanks Selma, the people on this forum are lucky to have you on here =]
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Avatar_m_tn
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.
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620923_tn?1405964489
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"
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Avatar_m_tn
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 =]
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Avatar_m_tn
By the way, If i go to a chiari specialst, will he/she know if i have hydrocephalus? thanks.
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620923_tn?1405964489
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"
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Avatar_m_tn
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?
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620923_tn?1405964489
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"
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Avatar_m_tn
Hi selma, my father actually found this doctor in taipei's biggest hospital. Since taiwan is a small island, its not hard to find alot of hospitals and doctors. He basically went around the hospital and asked if any of the nuerosurgeons were specialists in chiari malformation. "supposedly" my father said he's the best nuerosurgeon around in taiwan, but well see.  If this nuerosurgeon can tell whats wrong with me I'll definitley post and recommend info on the nuerosurgeon.  

By the way, I have read that a cine mri is used to detect chiari, but today I went to the hospital and got a MRI with contrast...will this help determine if I have chiari, or do I have to use cine mri?...Also, what is the difference? thanks. My head has been huring lateley and it wont be a week till I get my MRI results =/
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620923_tn?1405964489
Hi....A CINE MRI is  a CSF flow study it is used to look for a  blockage to the CSF flow which is a cause for a syrinx to form.

MRI with contrast is just that a MRI of a given area with a contrast material used to help "light" up the  area so the dr can see what is going on with the smaller veins etcs....

May I ask what area u had done?...brain, or cervical spine? or both?

Well, ur dad is a good advocate to do the leg work like that for u...I pray it all works out....what an experience for u to go there to see a dr....

Please keep me posted

"selma"
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Avatar_m_tn
I think I only had the brain done..crap, should I have had both done? And will a mri with contrast be enough to detect a chiari or csf blockage? thanks again..
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620923_tn?1405964489
Well I can tell u what my chiari NS wanted-
Brain MRI w/wo contrast
Cervical spine MRI
CINE MRI w/contrast
Thoracic spine MRI
Lumbar spine MRI

The reason was to rule out other related conditions like tethered cord, which I do have, and a syrinx which I do not have....but it is best to know what all u r dealing with  from the get go.

Well a Cine MRI is done with a BP clip....they monitor ur pressure as they watch the real time flow to see if it pulsates with ur heart beats....not all of us have a complete blockage , but have an obstruction.

I will add not all chiari drs feel the need for a CINE MRI...it all depends on if they can see   overcrowding in the other MRI's.

"selma"
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Avatar_m_tn
So I went to me nuero surgeon..and he said that everything is fine in my MRI with contrast images.  When I asked him about what the "fizzing" sound was in my head..He didnt even tell me what it was, all he did was give me a slip to see a nuerologist? Then I went to go see the nuerologist he recommended, when I was talking to him...I asked if the fizzing sound was due to cerebral fluid..and he said no. I also asked him if he knew what the sound was, and he said no.  After that, I was really pisseed off...Is it that I'm fine..or these people dont know what the hell they're talking about? When I would ask my dad if he was one(chiari expert)..he would say that..he knows everything. He's good at everything including chiari..and I looked at him like -_-. I'm not even sure if the nuero surgeon is really a chiari doctor, he just may have said to my dad that he "knows" what it is...but wasnt a expert..I think my dad wanted another nuero surgeon to see just in case it wasnt chiari... err I'm so pissed off....What are your opinions about them being chiari experts???
Am I just over reacting?

BUT tomorrow..I will def..be seeing a REAL chiari doctor, and will bring my MRI with Contrast images because I have found articles of what he wrote about it here in Taiwan...
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Avatar_m_tn
ALso..Have you heard about pseudotumor cerebri? it sounds again like csf..and was wondering if a real chiari specialist would pik it up..thanks selma!
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620923_tn?1405964489
Hi...sounds like u had a general NS that has limited knowledge on chiari, no a chiari specialist....I went to a few of them as well, but did not travel as far as u did.....


Pseudotumor cerebri is the same thing as  intra-cranial hypertension....it is a build up of CSF..some have this first and it can cause chiari and some will develop it after the PFD surgery.

They may try to use meds to control the amount of CSF, if that does not work they may install a shunt...there is info in my  journals on shunts for a syrinx...I believe teh info is similar for PTC.

"selma"
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Avatar_m_tn
So I went to the Chiari nuero surgeon..and he looked at my MRI with contrast.  He said that nothing is wrong with me from the MRI.  I asked himif he knew what the "fizzing" sound was, and he said that he didn't know. I then asked him if it had anything to do with cerebralfluid, and he said no.  He also said my report from the nuerosurgeon is all okay and  asked why was I there to see him if my report was fine.  Are Chiari experts suppose to recognize what this sound is?  Do you think I should get a second opinion..or I'm actually fine..and this "fizzing' could just be something unrelated?
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620923_tn?1405964489
I have no idea y this dr is not able to help u...u have a chiari dx...correct?.....

And u have symptoms including this fizzing sound...which could be tinnitus...I have it, I also get ringing too...but mostly it is a fizzing or fuzzing sound and it is constant...it had left  for a while after surgery but came back with some meds I am on...and as I do more it seems to increase....

Did this dr say y he felt u were fine....and may I ask what u were told b4?

"selma"
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Avatar_m_tn
Yes, he is a Chiari "expert".

Hmm..I do remember when I told him that it sounds like soda..fizzing or bubbling..and also said it sounds like sand rubbing against each other..and I remember that he wrote in his computer "clicking" sound.  I just looked at mayo clinic for tinnitus and it says possible sounds may include "clicking," I'm dumbfounded...

Also..the appointment only lasted around 5 minutes.

He didn't say why he felt I was fine..All he did was look at the MRI for literally like a minute..and he said I see no problems you're fine.  I remember what I was told about the "clicking" sound was that many doctors dont know what this sound is, and that he didn't know.  Then I asked him if it was because of Cerebral fluid blockage...and he said no...he seemed somewhat annoyed and impatient when I asked the question again about csf and the sound, as I was very worried..ya know...

Sigh...I am really depresseed as doctors and I cant even figure out this problem.. My blood pressure is about 150 lateley, probably because I have been worrying and stressing

Also, what are the risks of leaving this untreated?  I'm really giving up hope bcause I cant find the root of the problem, and neither can these NS.  Should I just ignore this fizzing sound and headaches and just continue to live life...?  Or do you think I should see another Chiari doctor somewhere else thats renown?  

By the way, would a hydrocephalus NS help me better than a Chiari NS for this "clicking" sound and headache?

sorry for the long post, you're the only person I talk to about this...
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Avatar_m_tn
I forgot to add..I also told him that I have symptoms of feeling numbness or..thousand needles tingling feeling in my face and arms.
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620923_tn?1405964489
Hi....I would deff try to find a dr that will read ur MRI and give u an indication as to what is going on.

Keep a journal of ur symptoms, if u have ne changes, call ur PCP asap to see if u can get in to have a medical file of the complaint and the symptom....plus, ur PCP can rx did testing, like MRI's.

I would also see what chiari drs might be in ur area...and a chiari dr also treats hydrocepalous...many of these issues r inter-related.

Which dr gave u the chiari dx?

"selma"
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Avatar_m_tn
Hmm..my father found the doctor..anyways. do you know whats the worst that can happen if I dont get it treated?
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620923_tn?1405964489
well, it all depends on what is really going on....if u have PTC and the CSF keeps on building that is not good, it can put pressure on ur optic nerves as well as continue to cause HA's, balance issues, even vomiting, there is a large range of symptoms u may have to deal with....if u have a syrinx that is left untreated and it continues to grow it can cause perm nerve damage.

U really need to find a chiari dr to review ur MRI's to see what is going on......not being a dr, I really can not say....but, this is a life altering condition and no one can say who will or will no get worse or when.

"selma"
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Avatar_m_tn
I will continue to post updates when I get enough money to go see another Chiari expert...  Thanks Selma...its been an awful journey as I cant find what the problem is. May God bless your soul because of your will to help everyone on here everyday.
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Avatar_m_tn
by the way, which is better to do a csf flow test, spinal tap or cine mri?
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620923_tn?1405964489
If u have Chiari it is best to avoid a LP or spinal tap...a CSF flow test is the CINE MRI.....and the CINE is a very good route to take...have u have a cervical spine MRI as well as a brain MRI?...thoracic and lumbar spine MRI'S?

"selma"
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Avatar_m_tn
I have not taken a thoratic, lumbar, or cervical spin MRI, only a regular MRI with contrast.  Once I save enough money, I'm going to get a CINE MRI done for CSF flow.
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620923_tn?1405964489
See if u r qualified for state funded medical insurance...they have lower rates and cover those of us with a pre existing condition.

U still get bills, but it is better than not having ne insurance at all.


"selma"
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Avatar_m_tn
Are you talking about Obamie the Commie's health insurance? =S lol.
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Avatar_m_tn
Hi, I was wondering when you exercise, do your headaches appear more? They do for me..I think..
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620923_tn?1405964489
No...most states have this in place....not sure what all his plan is....I pay for my insurance and my co-pays...this just helps those of us with a pre-existing get affordable insurance.

As for exercise...I do not do much bcuz of that..strain causes pain...plus I was dx'd with EDS and I have to be careful with my joints...so until I get to a dr for that so I know what I can do safely...I have been careful not to do too much...I have a stair stepper...and I walk.

I used to do more aerobic type exercises but it got to a point I could no longer do them, I have yet to try again since surgery.

"selma"  
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Avatar_m_tn
=/ Hope you the best.
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Avatar_m_tn
Dear Selma, I was wondering if I go to a chiari specialist, will they also be able to determine if I have pseudotumor cerebri (Intracranial pressure)?  my head sure feels like there is "sharp pounding" almost every few days..and other days it wont hurt, but my head would feel like it's not comfortable, it's hard to describe it.   It's the start of a new year and late happy new year!
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620923_tn?1405964489

   Hi...yes, a chiari specialist can dx and treat IIH or PTC which is Intra cranial hypertension and  pseudo tumor cerebri......

  DO u have a dr close to u to go to?

  "selma"
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Avatar_m_tn
Did you ever find out what is causing the fizzing sound. I am experiencing the same thing along with headaches.
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